Hello everyone,
I'm reaching out for advice or clinical study data that can help us decide the next step for treating my father’s myeloma. Currently, he's in the process of obtaining CAR-T under his primary oncologist's guidance. However, a recent second opinion has introduced the possibility of undergoing a Stem Cell Transplant (SCT) before CAR-T.
The second oncologist proposed a tandem transplant approach: stem cell first, followed by CAR-T. He's conducting a trial where patients undergo SCT, followed by immediate T cell harvest and subsequent CAR-T therapy. Though the trial is in its early stages, the doctor suggests that SCT might be less effective post-CAR-T treatment, and that my father might as well do the SCT first.
I'm eager to hear everyone’s thoughts on the implications of choosing SCT before or after CAR-T. Does one treatment diminish the potential success of the other? While I lean towards CAR-T as a more advanced and effective option, I recognize that no treatment is permanently successful. If pursuing CAR-T first might shorten his overall lifespan in the sense that it will reduce SCT efficacy, it might make sense to opt for SCT first.
If SCT becomes the chosen path, there's the additional question of whether to follow it immediately with a CAR-T transplant, as suggested by the second oncologist, or to wait until a post-SCT relapse before considering CAR T.
Here's some extra context for a clearer picture: * My father has failed four lines of therapy and is currently in the process of obtaining CAR T (insurance approved, harvest date scheduled). * About three years ago when he was diagnosed, he harvested stem cells for future use. However, a failed second-line therapy delayed his initial stem cell transplant, and traditional therapies were resumed in the hope of becoming eligible for SCT in the future. * Two subsequent therapy failures, including one with Cytoxan, led his primary oncologist to recommend skipping the transplant and pursuing CAR T instead. The rationale is that the similarity between Cytoxan and melphalan suggests that a stem cell transplant might not be successful. * After the failure of the third and fourth lines of therapy, he recently underwent DCEP chemotherapy to control the disease in preparation for CAR-T. * Due to the extended timeline for obtaining CAR T, he will likely need another round of DCEP before his December T-cell harvest (TBD). * A somewhat relevant factor in the decision is that opting for SCT now instead of CAR-T would eliminate the need for additional bridge therapy (DCEP), as SCT can happen much sooner.
I appreciate any insights or experiences you can share as we try to weigh the options. Thank you for your support.

I am 35 and was diagnosed with IDC grade 3 EP (+) and HER 2 (-) on March 17th had my double mastectomy on 4/18 and chemo will start in 2 weeks. Adriomycin and cytoxan for 8 weeks and then taxol for 12 weeks. I know everyone is different but would love any tips or preparations. I have 2 little ones so hoping I’ll be able to continue with my daily responsibilities.

Very curious what experiences/drugs/trials everyone else has had during their treatment path. My mother's has been very long and ever changing, far more than I initially expected when doing a lot of research right as she was diagnosed (I'm very science based so lots of google scholar articles etc)
My mother was partially diagnosed in late September 2021. She has requested a routine CBC from a yearly visit with her primary care doctor because she's diabetic and it had been awhile since she had a blood work up. The PCP didn't really mind so she ordered a full blood panel workup. Surprisingly to everyone involved, her blood counts were way out of range and she was referred immediately to a hematologist / oncologist within days. She was a little shocked, especially since she felt fine and was walking 60+ minutes daily and taking care of her 93 year old mother full time. When she got to her appointment the doctor was ready to do a biopsy right then and there in his office, something that my mother was unprepared for mentally and seemed dramatic to her. Somehow she convinced him that the anemia might have been just from low B vitamins and he agreed to give her a few weeks of coming in for weekly B vitamin injections and CBCs. I'm astonished he allowed her to go almost a month with that routine with zero improvement (obviously) and allowed us to "waste time." Finally towards the end of October and a couple days after I had got back from a week long vacation she felt too worn out to take a evening fall walk, two days in a row. Then she got a call saying she had to go to the ER immediately, not a few hours from now or a day or two later or anything, but drop everything and go now. Her white count had rocketed up to 70k in just three or four days. We got her to the ER and she was checked in fairly fast (way faster than I've ever seen) and up to an acute care room within an hour or two. The started her that night on hydroxyurea and allopurinol to knock the white count down and try to protect against tumor lysis syndrome. Thankfully she didn't have any issues with TLS and after her counts peaked at 130k white cells about 48 hours later they started to drop fast. She initially was told via the ER that she might be there for three or four days, I think to get her to agree to being admitted and stay overnight. I told her I would deal with my grandmother and could handle work and then going home to take care of my grandmother and then visit the hospital each night for a couple hours... by day three they told her it was likely leukemia and she needed to start chemo (7+3) and plan to be there a few weeks.
Within a week or so we had preliminary biopsy results back and a confirmation of AML and 7+3 was started. We already discussed some initial treatment options and a long term of "maybe a transplant in Seattle would be needed, and that could be 8 to 10 weeks in Seattle." We called some family for some help taking care of my grandmother who needed more care than I could provide since she had fairly bad dementia. Unfortunately a caring and supportive brother and his wife had limited availability and could only come up on weekends. During the week another one of my mother's brothers came up and was essentially a monster to me. He expected me to prepare breakfast and dinner for my grandmother, do the shopping, left every dirty dish out (not even soaking) for me to take care of around 10pm after I had finished visiting my mother, and would often stand in the kitchen telling me everything I was doing wrong while I did the dishes. He was insistent on I was being selfish on not taking time off work to take care of his mother (my grandmother). He also would leave for hours at a time during the day and leave my grandmother fairly confused and alone at home. He quickly become more hassle and stress than help. We also quickly learned my mother would likely be in the hospital for four weeks or longer, which meant she would be there for Thanksgiving, the first of many "inconveniences."
We ended up getting genomics back and saw that she had a FLT3 TDK mutation. Midostaurin was added to the tail end of 7+3, it wasn't perfect, but I was glad to get her on a targeted treatment. Weeks went by with me getting off work around 5pm, rushing home to make dinner for my grandmother and uncle, head down to the hospital with some piping hot soup for my mother and then have dinner with her (I actually didn't mind hospital food, but boy it's hard to get anything hot), chatting for awhile and playing cards, exchanging clean clothes for her dirty ones and seeing if she needed anything from the store and then heading home around 10pm to do dishes, make lunch for work, and crash. Thanksgiving came and the supportive uncle and his wife mentioned they could come up for Thanksgiving and spend it with me, their mother (my grandmother), and allow me to spend a lot of time at the hospital. Turns out the shitty uncle refused to skip that weekend, despite bitching about every other time he came up. He claimed he had reserved a big feast, the kind you get from Costco or Safeway or something. Not homemade, but whatever. The supportive uncle cancelled since he can't stand his brother and I planned to get the heck out of the house and just spend the day with my mother. Turns out the shitty uncle didn't ever reserve anything and just thought day of that he could swing by and get a big feast... which turned into a Costco chicken and some carrots and potatoes. This would turn out to be my grandmothers last Thanksgiving and I feel horrible she had such a disappointing one alone with him.
My mother's treatment was done but count recoveries were very slow and she continued Midostaurin. By mid December she was getting pretty depressed since it was now over six weeks in the hospital. Her counts were starting to increase slowly and stabilize but a biopsy showed active disease still. We made a bargain with her treatment team to allow her to return home about four or five days before Christmas as long as she returned a couple days before New Years for another round of chemo. No Christmas tree this year because we usually got a real one and didn't want to risk it with her immunocompromised status, but hot chocolates, coffee, and driving around looking at lights, and a little snow right before Christmas. Talking with her care team we adjusted the treatment plan to be Venetoclax with decitabine and the care team wanted the initial 7 days to be inpatient we later found out largely because her oncologist hadn't been able to get her an outpatient chair... this of course turned into about 14 to 15 days. Finally by mid January she was allowed to go home with supportive care. This is also the first time we get connected with Seattle Cancer Care Alliance (now Fred Hutch) and are told she should be on an inhibitor as well. The local oncologist said the triplet therapy was hard to get approved and he didn't think it would be worth trying to do because she probably would be in Seattle by the time it was approved. When we relayed that information to SCCA, they said they would take care of it. Gilteritinib was approved a couple days later.
The second round was Venetoclax + decitabine + Gilteritinib and was done outpatient with just a couple adjustments of a week of "rest" to keep counts from dropping too much. Biopsies showed good response, but residual disease, somewhere around 1% blasts and MRD positive by flow. FLT3 was not detected. She started a third round in February and we started to plan for an April target for Seattle and a non-related donor bone marrow transplant. We start calling extended family to see who or what combination of people could come stay with my grandmother to take care of her. Seattle calls and offers to push the April date forward to mid March, just three or so weeks away, we say yes. My mother has six other siblings, five of which are well off and retired. None of them agree to come take care of my grandmother (who has a rather large house in a beautiful neighborhood with a wonderful yard). Frustrated and hurt, we turn towards the only option, assisted living/memory care. We pick Portland since three siblings live there and could visit frequently... my major worry is fall risk and I hope to heck a few months can go by with my grandmother being ok.
Mid March races towards us and we move my grandmother down to Portland. My mother wants a couple days at Seaside OR incase it's her last chance... her words. I agree and say we need to be careful for COVID, but if we mask up we can make it work. We take a few days to enjoy down there and then head back to Eastern WA to get my grandmothers house as ready for a prolonged "shut down" as possible. Get a yard service going, get sprinklers repaired and running, put up ring cameras inside and out and Wifi on a battery backup and pack up the car to head to Seattle. I got my WA family medical leave approved and ready, it's up to 12 weeks and replaced about 80% of my income, but I was going to do everything possible with work to work remotely. I work in a science lab, so a majority of my work is hands on (and with radioactive material at that!) but thankfully was able to pick up a huge amount of the paperwork and still Teams/Zoom in for meetings and such. I could get about 20 hours a week which would stretch my WA leave to twice as many weeks.
We get lucky and get to move into the Pete Gross house in South Lake union area of Seattle within two or three days of getting to Seattle. It's a crappy place and a godsend. It's across the street from a homeless shelter which results in endless screaming by mentally unstable people at night on the street, usually the fire department showing up with sirens and lights going at least two or three times a week, and just a shady feeling during the day. BUT, it's covered by insurance, is maybe three minutes from Seattle Cancer Care Alliance south lake union campus, and doesn't require getting on the freeway (and has secure underground parking!). It made this all doable, it's amazing they have this for patients and caregivers. We hunker down and start to learn that 8-10 weeks was.... a little optimistic and we might be there for 3+ months. She goes through intense pre-workup. Think about it like an astronaut getting ready to go to the moon. They check everything, every major body system gets a workup and a "go/no go." We try to enjoy the time before transplant in a safe manner... a couple week days at the zoo when it's not busy. The Seattle art museum, Boeing air and space museum, Seattle center area (Space Needle, etc), Seattle aquarium, all while being masked up. Have to be safe, but also have to bring some joy to the day after day of doctors appointments and endless waiting in the lobby.
My mother is doing really well. Her medical fitness is high and she's healthy enough for a transplant. Everything is a go... but her biopsy still shows MRD+ and... that's not statistically good. All we can do is hope that conditioning right before transplant works and gets her MRD-, but there's no way to know because outside of clinical trials, they don't do a biopsy between conditioning and transplant since there is no gap between those and no going back. A week before transplant and her unrelated donor (18 year old female, 12/12 HLA match) backs out... we handle it well but it doesn't get past my mother that maybe that's a sign and it just makes her nervous. There is a backup donor but it's going to set things back ten days or so. Our AWESOME care team and clinical oncologist says lets use that time to try to have the best chance for MRD- status and amazingly gets my mother into an early phase alpha radiation trial, which is constantly full but literally had someone drop out the same day we found out our donor dropped out. Bad sign... or opportunity? I start to give up trying to plan the expected treatment course at this point and just research as much as I can but am ready for constant change.
At-211, or Astatine-211 is a treatment that uses targeted alpha radiation therapy. Alpha radiation is extremely high energy but doesn't pass through much, just a handful of cells can stop an alpha particle. This is compared to total body irradiation which just beams through the whole body, hitting everything. The goal is to attach the Astatine to carrier molecule that will attach to leukemia cells and will allow the At-211 to deposit all it's radiation on those leukemia cells and the surrounding few cells but spare most the body. It's hard to get a straight answer from the trial principal investigator and the radiation oncologist on how much radiation it delivers... because it's targeted, so it's hard to quantify... but I squeeze out an estimate... I believe they told me 30+ Gy that's kill you dead amounts... like seriously dead amounts. BUT, since it's targeted and largely missed most healthy cells... the body can handle that. They required her to stay 24 hours at University of Washington Medical Center for the treatment, but she was basically side effect free and while they warned her that body fluids would be radioactive... they said to just keep anything bagged for a couple days and then it could be washed like normal. While that terrified her, it kinda made my chuckle. The stuff I work with at work... well, you can't just wait a couple days and it's no longer radioactive... so I explained to her that it's nothing to worry about and she wouldn't be dangerous to be around, etc. Ironicly I later asked one of my coworkers back at my lab because I thought he had worked on some purification system for UW Medicine and sure enough he had worked on the At-211 purification with an automated system for faster turn around and cheaper. Crazy
Back on track, At-211 hopefully did it's thing. She still was going to get reduced intensity total body irradiation (a few Gy in one go) and was going to get a slightly modified chemo conditioning in that she just was going to get fludarabine but wouldn't be getting the busulfan. Immunosuppressive drugs were started (MMF, Cyclosporine, Sirolimus... all at slightly different timing, but I believe was the standard protocol for Seattle). Donor turned out to be a little older, 22, but still 12/12 match and MALE... statistically male donors result in better outcomes, for whatever reason. Sadly since it was still COVID times it was cryopreserved with DMSO (Dimethylsulfoxide) and they warned her that everyone gets sick... almost like flipping a switch. I didn't mention that I worked with that chemical at work and the little whiffs of smell I got every now and then was horrible because it is rather sweet smelling with a seriously toxic under note to it... they told us that she would smell like it for three or four days as it worked it's way out of her body... wasn't looking forward to that!
Transplant was the day after my 36th birthday, May 11th. My mother felt horrible she would be ruining my birthday by going through the most intense part of the transplant right then. I truly didn't care and constantly told her not to worry. A couple weeks go by post transplant and she's doing... ok. She's extremely weak and keeps mentioning she feels like she got hit by a truck. There isn't much appetite, but she's trying her best and is able to drink a pretty good volume of fluids, though it's still daily visits for IV fluids and magnesium as well as supportive blood products as needed. About 15 to 20 days out and she starts having issues keeping pills down... literally 30 seconds after taking a pill they would come right back up. She gets very angry with me when I say I have to report it and tells me she just needs one day break and how much she's been through. I report it to the team and they're concerned about the missed afternoon immunosuppressive drugs and direct me that if she can't take her evening drugs she needs to go to UW medical center and a bed would be ready for her. She basically tells me she will disown me if I send her to the hospital and everyone should just let her rest for a couple days. She ends up at UW that night and almost all the drugs they could switch over to IV... while she hates to be in the hospital she thanks me for reporting it and getting her there and she welcomes the rest from taking pills (since it's IV now). I'm not disowned, lol
Two days later I get a call from my uncle asking for my mother saying it's something important with my grandmother... a half an hour later my mom, who's still at UW medical center as an inpatient calls me telling me she was just told that my 93 year old grandmother had fallen and broke her hip and was in the hospital. This is exactly what I worried about. We're told she probably would never stand, let alone walk, again if surgery wasn't performed within 24 hours... we know that going under general can really accelerate dementia and everyone decides in the family to forego surgery for her. It's just a couple days before my mothers birthday, she's in the hospital just a couple weeks after transplant and she feels horrible that she "abandoned her mother" and that resulted in her falling and breaking her hip. We get more information a couple days later that my uncle couldn't sleep after the phone calls and ended up ignoring everyone and calling the surgeon back and said do it, do whatever to give my grandmother a chance to walk again. My mother and I had actually regretted our decision on no surgery and are happy to hear the change.
End of May my mom is able to return back to Pete Gross house with me after having an upper GI scope and being cleared of GVHD. She's able to slowly take all her pills again, obviously starting with the key stuff and adding in mag and potassium and stuff. We get a call from family saying my grandmother is going into a rehab clinic to continue healing... I worry out loud that I just hope to anything that she gets out of there before catching COVID. We won't be told for almost two months, but days after she enters the rehab she tests positive for COVID and is placed in isolation, her rehab is stopped, and she basically stops eating and is bedridden... a 93 year old with dementia. This basically seals her fate to a wheelchair...
June and July are largely uneventful. Loads of pills, loads of clinic visits. Slowly dropping the amounts of IV fluids, slowly getting stronger. We try to get out and visit the Ballard Locks and the Washington Park Arboretum as well as lake union to get outside away from others but able to take some small walks to build the energy back. Initially 15 or 20 minutes but slowly up to like 45 minutes or so with just one three or four minute break in the middle. Her care team is happy, she's feeling better, I've been able to keep working remotely and happy with how her recovery is going, her initial post transplant biopsy shows zero residual disease and 100% donor chimerism. Things are going well and we're starting to focus on going home... our ~100 days is now around 140 days... we start to work on the home team to line up some appointments so Seattle will release us, it turns out we'll be there for a couple more weeks because the home team can't fit us in soon enough. There's another biopsy at the start of August and results are back just days before we're set to go home... she's MRD+ now. The team talks to her about starting some maintenance chemo as soon as we get back home, IV sorafenib is suggested. My mother is just not in the right space to hear this and she wants her hickman line out NOW. There is no talking to her and she holds firm. The plan of care switches back to Venetoclax and Gilteritinib even though FLT3 isn't detected. I wish I could have done more to convince her.
We head home to eastern WA mid August 2022 and my grandmother is transferred back to her house a couple weeks later so my mother can return to caring for her. I return to work and we try to get back to normal. We were told my grandmother needs a little help but can stand for a few minutes at a time to switch from a wheelchair to bed and other chairs and stuff. We think our family just said that so we would take care of her again. She has zero independence and mobility. She's also almost non-verbal for the first few days to a week or so. She's gone from being confused but happy at home to sitting and staring out a window and seeming uninterested in food. We have no idea if COVID ruined her sense of taste or not because she can't communicate that... she doesn't go for the cookies anymore if we leave them on the table while getting dinner ready. We're happy she's home... but we need to bring home health aides in to make it possible to get her out of bed and clean each day and there's more than a couple times I get a panicked call from my mother when I'm working late asking me to come home and help lift my grandmother into bed.
October 2022 rolls around, it's been a year since my mother was formally diagnosed with leukemia. I plan a week long Halloween vacation to get a way a little. My grandmother starts to take a turn for the worse and my mothers counts start to drop. At the last minute I cancel my vacation, my grandmother finally dies (at home) a couple days later. The rest of the family is shocked (why?) but my mother and I are relived. My grandmother was a couple months away from 94, had no quality of life any more, and was ready to go. My mother gets to the point where she needs platelets a couple days later, due to shortages and poor scheduling by our local team, she's told to go to the ER and wait... it takes 10 hours to get 1 unit of platelets. Her local oncologist thinks it's medication induced TTP (Thrombotic Thrombocytopenic Purpura) but runs no tests. Treatment seems to be getting back on cyclosporine, which had just been tapered successfully... or getting off sirolimus. The oncologist opts to speeding up the sirolimus taper much faster (like 10 days fast), pulls her off bactrim, stops the Venetoclax and Gilteritinib. We're worried about that damage these microclots could be doing and the oncologist explains her dropping red blood counts as the microclots destroying the red blood cells. We would later learn from the Seattle team that it would have been TMA (Thrombotic Microangiopathy, a larger condition that can include TTP) and would have been very unlikely. She continues to be told to go to the ER once every 5 to 7 days for platelets and on average waits between 8 and 12 hours each time for one, sometimes two, units... she usually eats dinner and goes around 7pm to try to avoid as many other people as possible. The ER staff starts to get annoyed and tells her she has to demand to her cancer team that they set something up and stop just sending her to the ER as it's very dangerous (infectious risk) for her. We finally reach out to Seattle and ask for help and say that the local team isn't in close contact...
A biopsy is scheduled a few days later. While waiting for results from the biopsy we start to talk to family about buying my grandmothers house (we had been living there since we were her primary caregivers). The previous year with interest around 3% I would have qualified no problem, with rates around 6% I would barely get into it if they let it go below market. Family starts arguing that they might get a bidding war if the put it on the market. I immediately decide to bail out and rent a place. We get the results of the biopsy back and find out my mother has relapsed and has 70%+ blasts. We try to have a normal Thanksgiving alone and have a move in date to our rental of Dec 1st. Seattle wants my mother at UW medical center December 5th. She's weak but helps pack some stuff.... or at least keep me company while I pack. I set her room up first at the house I rented and she starts to pack her stuff for Seattle... I move the last few things the weekend before we head to Seattle. I drop her off at UW Medical Center on Sunday night and head back home to return to work Monday and try to unpack the new house more.
Salvage therapy. We opt for GCLAM + Venetoclax trial (G-CSF, Cladribine, Cytarabine, and Dose-Escalated Mitoxantrone). The idea is G-CSF is a growth factor that will get the leukemia cells multiplying as fast as possibly which makes them more susceptible to be destroyed by the chemo. We're told she would be up there about two weeks, maybe 20 days. She's excited to get home right before Christmas if she's lucky. The chemo kicks her butt like way harder than 7+3. She handles it really well and I drive the 200 miles every weekend to visit her, thankfully the weather holds up mostly while going across the Cascade mountains. She has fluid buildup in her lung and around the heart and that requires draining. There's no way she's heading home for Christmas. I make sure to get her a little LED light up picture of a snowman and a house with Christmas lights and a little 18 inch plastic table top Christmas tree that is filled with water and glitter... it has a light that shines upwards and the glitter makes sparkles shine across the room. She hates that I have to spend Christmas in a hospital 200 miles from home but loves that I'm there and all the nurses love walking into her room because it has a good holiday mood from the couple decorations I brought. They all compliment her on it and are in a good mood when they swing by. By New Years she's doing much better but counts still aren't coming back and they don't want to release her home. I honestly can't remember if it's Christmas or New Years that the weather finally was crappy for me, but one of those visits for 10 hours to drive instead of 4 due to snow... I spend New Years up there with her. They want to give her a growth factor for white blood cells and if it works they might be able to release her home, this is scary because if there is any remaining leukemia it'll also respond to the growth factor. One shot is enough to get her white blood cells (neutrophils) to skyrocket back into the normal range and they agree to release her by the second week in January.
I bring her back home to Eastern WA and UW Med were able to get the local care team to schedule her for weekly transfusions so there isn't any more BS ER visits. A biopsy is done but most tests other than flow is cancelled due to a hypocellular sample (lack of cells), I told you that last chemo was intense. She's stable and slowly building energy back but needs 2 units of platelets every week. She's so happy to be home and is shocked I still haven't unpacked everything... I've been uh... a little busy, lol
End of February rolls around and she's got enough energy to do normal light house work and cook and stuff. We can occasionally go for a 15 minute walk when it's not cold or windy. She goes shopping (both masked up) with me every weekend. Seattle suggests we come back up so she can get a donor lymphocyte infusion (DLI) to just have the best chances to get/stay in remission. She head up there on a Sunday and Monday is a few checkups and she gets the cells Tuesday. The cells are fresh and only about 50 mL... it takes about 15 minutes and zero side effects and we're on our way back home to Eastern WA.
It's now been a bit over a month since the DLI and almost 5 months since the GCLAM chemo. She still needs platelets once a week, though she's starting to occasionally be just above the threshold, so ever so slightly I think the counts might be about to return. Her hemoglobin is still bouncing around 8 to 9 which keeps her somewhat low energy, but she's basically back to a normal at home retired life. Her last biopsy just a week or two ago was still somewhat hypocellular, but they had enough to do flow, NGS (Next-generation sequencing), FISH, and PCR for FLT3... everything has come back clean with no mutations and no detection. There's still a long way to go, but it's been over 18 months since that first day and she's still here and still taking day by day.
I'm more busy than ever at work. We're settled into our rental and just getting so annoyed by the housing market and interest rates. Looking forward to slightly warmer weather to get back walking to try to continue to build the energy. Hoping counts recover and the appointments can slow down soon.
I could have never sketch out this path when she was initially diagnosed and I started researching the treatment options. It's been a lot.

Pharma had this to say: *
Last year, vials of the decades-old chemotherapy drug fludarabine could be purchased for a wholesale price of around $110. Not so much anymore.
This year, one company—Areva Pharmaceuticals—has jacked the figure up to $2,736, Stat News reports.
What’s going on with the aging chemotherapy used to prepare patients for cancer treatment?
It all comes down to supply chain problems triggering shortages that affect the only other two suppliers of the drug in the United States—Teva and Fresenius Kabi.
This and other well-documented shortages aren’t going away any time soon, according to Bindiya Vakil, CEO of Resilinc, a California-based firm that helps companies from a variety of industries mitigate supply chain problems.
While shortages of high-profile drugs such as Adderall and amoxicillin have garnered headlines recently, Vakil points to a recent FDA warning that has the potential for more far-reaching consequences.
The agency flagged shortages of more than a dozen drug ingredients, two of which are included in Adderall. Others include bacteriostatic saline, which is necessary for diluting drugs for IV injections, and compounds used in common drugs for anesthesia, water retention and calcium deficiencies.
“What we don’t appreciate as much is that our drug supply is highly vulnerable because a lot of the source materials that go into developing the active pharmaceutical ingredients come from China,” Vakil said in an interview. “India is a huge market for generic manufacturing that we rely on in the U.S. And India is heavily dependent on China for those source materials that they transform into the APIs. We don’t have independence in our drug supply at all.” https://www.fiercepharma.com/manufacturing/drug-shortages-arent-going-away-any-time-soon-supply-chain-expert-warns

Hi everyone. This is my first time posting here. Just looking for some support, feeling lost. My (32f) husband (35m) was diagnosed 3.5 years ago with B-cell ALL. We have gone through all treatment options. He experienced a stroke due to peg-asparaginase the first month of treatment, so we refused further doses of that. Otherwise, we have tried everything else thrown at him. He apparently has very unique alleles and has had no good matches available for a transplant. This year, they did find a good match in a relative in South America (he is adopted), but that person decided to back out… so, we pursued autologous stem cell transplant and had everything ready for that - I still have a refrigerator full of Neupogen shots. But at the last second, when they checked his marrow immediately before admission for auto transplant, his leukemia showed up again, and he hasn’t gone back into remission for them to consider that again.
As some background: his first remission was considered delayed, because he was MRD+ after the first month’s cycle, but then he achieved remission the following month. He continued to follow the “gold standard” treatment regimen of all manner of chemotherapy. He was in remission for around 1 year or maybe 1.5 years - the years blur together - before his first relapse. Then he did two cycles of Blinatumomab which knocked him back into remission for a bit. Less than a year later, he relapsed again. We considered CAR-T therapy, but his stint on Blinatumomab caused his leukemia to stop displaying CD-19 markers, so that was no longer an option (we didn’t realize this was a risk with the Blina…). He then did two cycles of Inotuzomab, which knocked him back into remission for only around 3 months that time, and he’s been relapsed ever since. Upon this most recent relapse, I contacted another clinical trial for CAR-T therapy (CD22, not CD19), but was told there’s a national shortage of Fludarabine which they use for lymphodepletion, so they weren’t enrolling new patients - besides, his doctor wasn’t confident he would qualify due to his CD22 Only showing as “dim/partial” as well - and now he completely lacks expression of CD10, CD19, CD20, and CD22. Now here we are having finished two rounds of Cytarabine and Venetoclax with his biopsy only looking worse, with blasts comprising 80-90% of nucleated cells (last month it was only ~8% and before that was <5%).
I guess I’m just venting and looking for support or advice. We have two daughters ages 3 and 8. I am more worried for them - how do we explain that daddy is (probably) terminal? I want to prepare them without too much unnecessary detail. I’m already looking into counselors for my oldest daughter.
Our telehealth appointment with his doctor is later this afternoon. He has never given us an idea of prognosis, always wanting to “try the next round” before talking about that. But we are coming up on the holidays and thinking about quality of life rather than quantity… If he’s terminal, let’s spend time at home as a family and enjoy the memories with the time we have left. He doesn’t want to die in the hospital away from the kids for weeks or months.
Thanks for any advice or even thoughts and prayers you can throw our way.

If anyone has had experience with both drugs, which one was harsher? My sister had cyclophosphamide, which had a partial response, but now doctors want to use fludarabine instead, as they think I'll put her disease into remission in fewer rounds to get her ready for sct. Cytoxan gave her a bad mucositis, and we're afraid that the flu will have more adverse side effects.

So, the title pretty much says it all. I’ll be receiving the infusion in a couple of days and I’m excited for it to start working, but also feeling a bit…apprehensive? I’m just wondering if there’s anything I should do the day prior (or on any day, really) to prepare for it. The infusion center didn’t say anything about prepping for it, but given that most of you have actually received this infusion (not just administer it), I’d rather hear from you.
Here are some of my questions as well as the side effects I had on different treatments in case it helps you gauge how hard (or not) the side effects might affect me (I know that everyone’s different, but maybe by writing my treatment and experience it’ll help?)

- Should I drink a lot of water prior, during, and after? That’s what I did when I was receiving Cytoxan infusions. - How long can I expect to feel fatigued for? With CellCept I felt kinda crappy for like a week and with Methotrexate, I would take it on a Thursday, feel normal Friday, and then go into a zombie-like state for the weekend. - How bad is the nausea and vomiting? I have Promethazine for nausea because Zofran and Reglan stopped working. My only complaint with Promethazine is that you can only take 25mg BID and I’m on 25mg per dose. The Cytoxan got me good when it came to nausea lol. Like, damn. Even with Zofran via IV, it was still tough. I ended up having to buy little throw up baggies similar to the ones at the hospital. I still have some too, just in case. - What are the common and “normal” side effects? Are there any side effects that I should know about that means “if you experience this, get your ass to the ER *right freaking now*?” CellCept and Cytoxan gave me crazy amount of kidney infections. I’ve had to push Cytoxan infusions for a few weeks because of how bad the infections would get; it ended up causing some damage apparently. I also turned septic from a kidney disease (*yes, I had taken all of my antibiotics, but those jerks weren’t affected by the meds*). - In comparison to Cytoxan (because that’s probably the strongest treatment I’ve been on), how did the Saphnelo side effects feel? Was Cytoxan worse or was Saphnelo harder to deal with? Did one of the treatments have specific stronger side effects than the other? - Do they give you any meds before the Saphnelo for nausea, in case of an allergic reaction, etc.? I remember with Cytoxan I was given Zofran, steroids, and something to protect my bladder (Was it for my bladder? Pelvic area? Somewhere in that area) - This might sound weird because it’s supposed to have the opposite effect, but did Saphnelo cause you any pain anywhere as a side effect? - Is there anything you wish you would have known before you started the infusions? 

Thank you very much, everyone! I’ve waited for this for so long and it’s finally happening! I have high hopes which I know is dangerous, but after going through so much in just 3 years, I really need this. I need a win, even if it’s seemingly insignificant.

I AM NOT THE ORIGINAL PERSON WHO POSTED THIS.

Original post by u/pixistix4u in /WomensHealth
mood spoilers: hopeful?
 
Lumps that might mimic breast cancer? - submitted on 22 Apr 2021
Hi everyone. I’m mostly looking for reassurance, as I am working with doctors already - just waiting to get answers and a bit anxious in the meantime. (ETA: I managed to get a biopsy appointment for tomorrow instead, so less wait/hopefully less stress).
TLDR: I have a lump in my breast that’s been looked at via ultrasound and mammogram, it’s described as dense (though the ultrasound mentioned a liquid center) with very irregular edges and finely spiculated. It is close to the skin though not visible, but easy to feel. It doesn’t feel moveable, it’s very firm. Everything online says it’s most likely malignant if it has those properties. What else could it be?
Background: I’m a 38 year old cis woman. I have a family history of breast cancer - my grandma on my dad’s side died of it before I was born, but I’m not exactly sure how old she was (she was fairly young). My cousin on my mom’s side recently had breast cancer in her 40s. I’m on a hormonal IUD and haven’t had a period in eight years from it. No history of anything weird with my breasts, though I am very large breasted if that makes a difference. I have Sjogrens and Antisynthetase Syndrome (a connective tissue disease which also gives me interstitial lung disease). Both are autoimmune disorders, but currently not on any treatment as I was just diagnosed. They come with an increased risk for lymphoma. I also had my Covid vaccine a couple weeks ago, and read that it can cause a reaction that is mistaken for cancer on mammograms but I believe that’s in the lymph nodes - this is the actual breast.
Current situation: I noticed a very obvious lump on my breast on Sunday. I feel like I would have noticed it before had it been there longer, I wash my breasts with my own hands to check for anything odd every time I shower pretty much.
I was able to see my doctor on Monday. She sent me for an ultrasound, which I had on Wednesday. They took me straight in to a mammogram after that, even though it wasn’t scheduled. They’ve scheduled a biopsy for May 3rd but I’m freaking out while I wait and Googling everything - often leaving me feeling certain it’s cancer based on the type of lump it is. But it literally popped up overnight, so that has me questioning everything. I’ve had no other symptoms or issues, no nipple issues or discharge.
I guess I’m mostly looking for other possibilities, just so I’m not as scared in the meantime. I’ve heard that most lumps that get biopsies aren’t cancer, but from the sounds of it, these aren’t cysts and likely not fibroids. What else could it be? If it is cancer, could it spread quickly while I’m waiting to get the biopsy and results?
ETA: because of my other conditions, I had a PET scan in December and chest CT scans every 6 months for the last year, the last one about a month ago. No sign of any cancer as far as I know, though I know that these tests aren’t typically for such things.
 
 
When to tell people about possible cancer? - submitted on 25 Apr 2021
Hi everyone. I’m going through a breast cancer scare at the moment. I just had a biopsy and will find out the results in a week, but I’ll need surgery regardless of the results and might not know everything until they can examine the lump after surgery.
I’m currently living overseas from my family, but I’m very close to them. I’m not sure when I should tell them. My husband made a good point that I should wait until I have the biopsy results so that I can give them a more definitive answer and save them the stress of not knowing.
I can see that point, but I think back to when my mom had cancer. She didn’t tell me until after she got a diagnosis. It seemed to come out of nowhere, and I was not prepared for it. She admits that she doesn’t like to tell me things that will stress me out or worry me, but that’s given me more anxiety, honestly, because I want to know what’s going on with her. I fear there are things she’s not telling me just to save my feelings and it’s actually hurt/upset me in the past.
But I am a lot like my mom. I don’t like worrying people and wouldn’t tell a soul if I could get away with it. I just know how it makes me feel to be kept out of the loop when loved ones are going through something.
So what do you think - wait a week (it’s only a week) and save them the stress of waiting for the results with me, or let them in and prepare them for the chance it could be cancer rather than dropping it on them after suspecting it for a few weeks?
 
Response to OOP
I recently had a similar health situation, and a LOT of other issues that actually led me to starting therapy, even though I (and most people I know) consider me to be quite mentally resilient. It was just too much all at once, and therapy helped me realize that THAT is ok and I'm not broken or weak for being overwhelmed by it.
My therapist & I are working on improving my vulnerability skill. I'm terrible at it! I can easily be HONEST and an open book with people, but I SUCK at being vulnerable in front of them, even my own husband!
My therapist says that while it IS certainly scary and hard, we have to give people the opportunity to respond when we're feeling scared, overwhelmed, sad, angry, weak, any negative emotion. When we don't give people that opportunity, we're signaling that we don't trust them with our difficult feelings, and that leads to them feeling held at arms length and disconnected/detached from us. And that isn't much incentive to keep being friends.
I wound up with a small circle of people that I told EVERY detail about my health issue, as soon as I knew it, and another larger circle of people that I told more general, less detail things to, often after I had had time to process it and/or well after it had happened.
My smaller circle (many of whom live out of state) wound up giving me words of encouragement, sending small gifts, making me laugh, helping me shift my perspective to a more positive place, and (my MIL) making dinner for me & my husband while I recovered from surgery. All because they knew exactly what I was going through.
My wider circle of friends who didn't have all the details, they didn't really do anything at all except respond to texts.
It is actually a sign of personal strength to be able to be vulnerable in front of those we care for.
You don't have to have an answer to every question before you tell your support network about what you're going through. It is ok to say "I don't know" or "I didn't think to ask" or "I'm still waiting to find out". Asking for support and encouragement IS NOT A BURDEN TO YOUR FRIENDS! It's giving them a chance to be a friend.
I'm still learning this for myself. Good luck to you. <3
 
 
Update: lump that might be cancer - submitted on 23 Jun 2021
I posted a couple months back about a lump in my breast that appeared cancerous in my breast, and I was hoping it wasn’t cancer. Well, it’s confirmed, it is cancer. I was diagnosed pretty quickly and have already had surgery (lumpectomy with sentinel node biopsy). Chemo was originally not part of my treatment plan because we caught it early (before it went into the nodes) and it was small, but after genome testing, it was discovered that it’s a pretty aggressive cancer that’s a little more likely to come back so I’ll be starting chemo soon, after a round of embryo freezing since my husband and I would like to try for a baby in the future (it’s very important to me, and overall, my prognosis is very good/low risk of coming back).
I’m also posting this not to scare people, but for two reasons - 1) don’t put off getting lumps checked out. I went right away and we caught it early. Had I waited, the cancer was likely preparing to spread and my prognosis might not be as good/my treatment would have been more aggressive. And 2) the first few weeks after diagnosis was hard because I was terrified, but as I met with my doctors, I found out that many breast cancers are treatable or even curable. Armed with a treatment plan, I felt a lot better. So just know, if you’re going through this, it does get easier. And if you’re young like me, there are options for fertility preservation (there’s a shot you can get to help save your ovaries plus egg/embryo freezing). Not everyone needs chemo either, so there’s that too.
My exact cancer is hormone positive (it responds to hormones) and her2 negative (a type of cancer that can be more aggressive). I’ll have a short round of TC chemo - Taxol and Cytoxan followed by four weeks of radiation. I’ll be on hormone blockers for 5-10 years but allowed to pause it in order to have a baby and the doctors believe it’s safe for me to do that. My oncologist says I’m still at low risk of recurrence and my risks of it coming back, after chemo, is less than 10%. Survival rates are very high in my case, my doctors are confident I’ll be just fine. I’m feeling better about my odds and my future now too.
 
 
Anyone done egg retrieval with local only? - submitted on 05 Jul 2021
Hi there. I’m having egg retrieval for embryo freezing tomorrow and they are only doing a local anesthetic, which scares me. Local doesn’t seem to work on me (I had a very traumatic experience last week with getting a chemo port put in under local only, and I could feel everything and it went very badly all around, which makes me extra nervous). This procedure does sound less scary than that, but everything I read online says that it’s usually done under sedation. They told me there’s no time for me to meet with an anesthesiologist, therefor no sedation for me (I had requested it from day one but I guess they forgot, I have serious medical trauma). They are giving me gas to calm my nerves. They say most women do local only but that’s not what I’m finding online (I think it’s a cultural thing. I’m in France and it feels like they don’t use sedation as often as in the US).
It’s supposed to very quick, right? Just thin needles? I’ve read that it feels like a blood draw and then suction. I guess what I’m asking is… am I freaking out over nothing?
 
 
Update: Egg retrieval with only local anesthetic - submitted on 07 Jul 2021
So I’m not sure how many people saw my question about egg retrieval under local anesthesia. I didn’t get any answers here, it doesn’t seem that common, which is why I figured I’d update on my experience in case anyone else has the same question down the line.
Honestly, it was easy. My anxiety was the worst thing about it. Prior to the procedure, a woman was crying inside the room and I almost left. I’m glad I didn’t. She was having a bad reaction to the gas, a rare occurrence, and I was just unlucky enough to hear it. She was fine though, just panicky from the gas.
They gave me some pre-meds they don’t give everyone because I was so scared. It was Tylenol, Tramadol and a strong anti-inflammatory and that really seemed to help.
I thought the needle for the anesthetic might hurt a lot, but it didn’t, I felt it, it was a pinch, but it wasn’t that bad. I used the gas too at times, and it did help. I didn’t feel them poke into my ovaries at all. When they told me they’d done it, I was surprised. There was a little cramping twice, but it wasn’t worse than a menstrual cramp and was over quickly (just when they’d push against the side of the ovary or something). I didn’t feel much pressure, maybe a little. My left ovary is lower and positioned poorly so that hurt a bit, just trying to get it into place, but the gas helped that pain immediately. Due to medical trauma recently, I’m not good with any pain at the moment, and I still found it very easy and non-traumatic once I was no longer anxious. Regular IUD insertions, for me, hurt ten times worse than this.
I also had an iud placed during it (since I’m starting chemo and can’t get pregnant during) and they couldn’t promise me that wouldn’t hurt still… I’ve had very painful IUD insertions in the past due to a cervix that’s “tight”. I asked when they were going to actually insert it and they said, “it’s done actually” and that was it.
I was so surprised at how easy it was. I walked out of there and got dressed pretty quickly. I had to hang out there for about an hour, eat, drink and use the bathroom before I could leave. I started having some cramping in the waiting room, but they gave me something for that and I was okay. It wasn’t severe.
It’s the next day, and honestly, I hardly have any cramping and no bleeding. If I had to do it again, I’d do it with local only probably. The nurses and the doctor were all so great - they had fun music playing, they were upbeat and cheerful, but also empathetic and kind. They let me watch as they harvested the eggs and it was neat.
And in the end, they were able to get far more than we expected - because of my age, they were expecting 7-8 total. They managed to get 19, and 16 were mature. This gives me so much hope as I start chemo. I also got a shot called Zoladex that will help save my ovaries during chemo. The needle is huge so it scared me, but that wasn’t so bad either.
All in all, not traumatic like I feared.
 

Reminder - I am not the original poster.

So it looks like my chemo schedule will be Adriamycin+Cytoxan every other week for four weeks and then Taxol weekly after that with Herceptin and Perjeta added every other week.
I’m sure a lot of you are familiar with this? Any tips/tricks/things I should be aware of or prepare for? TIA

I posted a couple months back about a lump in my breast that appeared cancerous in my breast, and I was hoping it wasn’t cancer. Well, it’s confirmed, it is cancer. I was diagnosed pretty quickly and have already had surgery (lumpectomy with sentinel node biopsy). Chemo was originally not part of my treatment plan because we caught it early (before it went into the nodes) and it was small, but after genome testing, it was discovered that it’s a pretty aggressive cancer that’s a little more likely to come back so I’ll be starting chemo soon, after a round of embryo freezing since my husband and I would like to try for a baby in the future (it’s very important to me, and overall, my prognosis is very good/low risk of coming back).
I’m also posting this not to scare people, but for two reasons - 1) don’t put off getting lumps checked out. I went right away and we caught it early. Had I waited, the cancer was likely preparing to spread and my prognosis might not be as good/my treatment would have been more aggressive. And 2) the first few weeks after diagnosis was hard because I was terrified, but as I met with my doctors, I found out that many breast cancers are treatable or even curable. Armed with a treatment plan, I felt a lot better. So just know, if you’re going through this, it does get easier. And if you’re young like me, there are options for fertility preservation (there’s a shot you can get to help save your ovaries plus egg/embryo freezing). Not everyone needs chemo either, so there’s that too.
My exact cancer is hormone positive (it responds to hormones) and her2 negative (a type of cancer that can be more aggressive). I’ll have a short round of TC chemo - Taxol and Cytoxan followed by four weeks of radiation. I’ll be on hormone blockers for 5-10 years but allowed to pause it in order to have a baby and the doctors believe it’s safe for me to do that. My oncologist says I’m still at low risk of recurrence and my risks of it coming back, after chemo, is less than 10%. Survival rates are very high in my case, my doctors are confident I’ll be just fine. I’m feeling better about my odds and my future now too.

31/M, AML w/ FLT3 Mutation. I've been reading a lot of posts recently, after my younger sister (who was also my donor) told me about this community, and I thought it was a good time to share. I was diagnosed with AML/FLT3 in Feb 2020. I was at work and drove myself to the ER on a Thursday, got diagnosed, had a Echo and PICC inserted on Friday, and started induction chemotherapy on Saturday. My life got turned upside down very quickly to say the least. I did very well through my induction chemo (7+3, Cytarabine+Daunorubicin) and was able to get into remission after my first round. Due to the fact that my FLT3 mutation is very common with relapse, I was recommended BMT/HSCT so I went into my first round of consolidation chemo (HiDAC, High dose Cytarabine) and we started looking for donors. My younger sister was tested and she was half match (Haplo), but we also found three individuals outside of my country that were full matches. Due to COVID and recent progressions with half match transplants, we decided to go with my sister to avoid additional chemo and get things started while I was still in remission. The conditioning leading up to the transplant was very aggressive because of my FLT3 mutation and Haplo transplant. We started with six cycles of Total Body Irradiation (TBI) and four days of Fludarabine leading up to the non eventful transplant day. I was doing great until the night after my transplant when I spiked a 104 fever and had very aggressive Cytokine Release Syndrome (CRS-common with Haplo transplants). After 3/4 days of intense 100-104 fevers, up and down, we started the anti-rejection chemo (Cyclophosphamide/Cytoxan), which is very harmful to the bladder and required 48 hour non-stop fluids. I gained 20lbs in fluid weight alone before I started having breathing/heart related issues and was diagnosed with pericarditis (inflammation of the tissue around the heart). This lasted for about another 3/4 days until I flushed the fluids and Cytoxan out of my body. Fast forward to Day+10 and I finally started feeling better and able to get out of bed and function. Now stuff started to get boring as I waited for count recovery and engraftment. Finally, on Day+16 my WBC count showed .1 and I was asking everyday about going home. I got released this past Monday which was Day+25 and I'm back at home enjoying my bed, ceiling fan, and multiple clinic visits/follow ups per week. Being a male and having no prior skin care routine, I’m slowly learning all about my new “lifestyle” and adjusting according to the female DNA that now makes up my blood. I know I have a long road ahead, but for anyone still reading and about to embark on this journey, just know that you can do it. Take it one day at a time, set small goals, celebrate the small victories, and most of all TRUST THE PROCESS. Best wishes to all and I hope my story can provide some light for anyone worried about their diagnosis and/or up coming transplant.

This post may be long, im sorry. I am trying to be strong and positive but I feel so uncertain about the future and I have so many questions. Any advice will help. Let me start from the beginning.
I am 24 years old and in graduate school. About a month ago, I felt a small lump in my right breast and went to get it checked out. 3 doctors saying it was nothing, 2 ultrasounds, and 1 biopsy later, i got the news. Triple negative high nuclear grade breast cancer.
I did genetic testing, and I have no gene mutations. I feel so grateful for this, as my risk of other forms of cancer are almost 0. Also, the lump is small, less than an inch, and the doctors say my prognosis is very good. There may be something in one single lymph node, they aren't sure, but they will do a biopsy and will be removing a few lymph nodes anyways so it doesn't seem that bad. My PET scan is in a couple days, but my doctor says there is no evidence that the cancer has gone anywhere else in my body.
I am finishing finals right now while undergoing fertility treatment, and starting chemo on the 11th. I will undergo chemo for 6 months and then have a bilateral mastectomy, followed by reconstruction. I decided on the bilateral mastectomy because while I want to reduce my chances of having any reoccurrences in the future.
I am trying so hard to be strong for myself and my family, but I am so scared. Additionally, because of coronavirus, I have to go to all of my visits alone. This means that I have to collect all my information alone, compose myself, and then be able to relay it to my family who are all so worried about me. I talked to a few family friends for advice, and they told me such overwhelmingly negative things about chemo. I know its going to be a difficult journey, but I am feeling confident and healthy and I have no other complications, so I am going to try to continue going to school while I do chemo. I am lucky enough that the first half of my chemo is during the summer, so I can be with my family and focus on treatment, and hopefully by the time I go back to school I will be prepared enough to know what to expect and handle it. School is very important to me, and im not the type to put my life on hold for anything, and I truly believe that it will make me feel better to continue on with my normal activities (greatly reduced, of course) while I do treatment to maintain some sense of normalcy and control.
After talking to my family friends who also had breast cancer, and they told me such scary things that now I dont know what to think and I am feeling so much less positive. I dont want to sound rude, but they are much older than me, and I really want to believe that since I'm young and healthy and strong I will be able to jump over any hurdles that come my way, but they keep telling me that its going to be impossible to do anything or continue any part of my normal life, and that my skin and nails are going to be completely ruined and that I'm going to be uncomfortable all the time. Its making it really hard to remain positive, and I just need some more advice.
Here is the chemotherapy regimen I am going to be taking. Please let me know if you have any advice on this.
3 months of Taxol (1x a week) and Carboplatin (once every 3 weeks,), followed by 3 months of Adriamycin and Cytoxan every 3 weeks. The taxol and carbo I will be taking during the summer, and the AC I'm going to try and do while continuing school. All my teachers are aware of my situation, and have offered to help in any way possible. Its really important for me to continue going to school. Can you guys please tell me your feelings about these drugs and this plan? My family friends told me that the AC would be nearly impossible to function on, and that even though Im young I will still struggle to do anything else. They keep using the term chemo brain, can anyone explain this to me?
Also, all my hair is going to fall out and Ive already arranged for a wig. I was wondering if you guys had any adivce on nice, cute head wraps as well? Ive been looking online but would like advice.
I ordered some Brian Joseph lash and brow gel for myself, does anyone have any experience on this product? Any advice on other hair products, or anything I can put on my nails to stop them from deteriorating as much? I don't want to sound self obsessed, I know getting healthy is the most important thing. But I do like to look cute and feel good and in control, and any advice would be appreciated.
Again, any advice on how these drugs will make me feel, anything I can do or take to make the chemo experience better, advice on wigs, hair wraps, lash and brow gel, nails, and skin is much appreciated. Thank you to everyone who read this post. Just having a place to post all my feelings makes me feel less alone, and less like I need to maintain composure for everyone in my life. Reading through the posts on this sub, you are all incredible and strong and I want to feel that way too. Thank you again.

(16/F) I haven’t been diagnosed for long and I don’t really have a support group outside of my own family, but I wanted to share my experience here if that’s alright.
It was my sophomore year of high school and I was in the soccer team. I started to feel really tired and my bones and muscles hurt a lot. I shrugged it off as normal because of the practices. It got to the point where I struggled to get up from the toilet seat often times.
Right after school ended, I would go straight to practice, and when I got home I showered and went straight to sleep. My grades weren’t the best due to this. I eat rarely once a day since I would rather spend the whole day asleep and at school it hurt too much to even stand in line for lunch for too long. I also didn’t want to ask my parents to buy stuff for me to take to lunch since I didn’t want to bother them.
I walked fairly slow down the halls and sometimes I would get weird glances, making me feel like a freak. I didn’t know what was wrong with me and honestly the idea of something being wrong with me scared me so I put off going to a doctor.
Eventually my mom walked into my room one night and saw my feet. She told me they were inflamed but since I had gotten used to seeing them so often I didn’t realize. My brothers also confirmed and so I agreed to go see my pediatrician.
She ran some tests and said I had a kidney infection. She prescribed me some pills and off I went. Around a week later I still felt bad so I went to my towns hospital emergency room. They didn’t do much except send me to a nearby city’s hospital.
I broke down in their emergency room when a nurse helped me into a wheel chair to go take a urine sample. It wasn’t like my body started hurting more than it already did. Maybe the realization of my situation was finally hitting me. The nurses were very nice to me and despite my pain, both physically and emotionally, I smiled and was polite.
I was moved to a room after spending all night in the emergency room. I don’t know much about doctors but I think a diagnostic team watched over me for about three days trying to figure out what was wrong with me. They speculated lupus due to my symptoms. My soon to be Rheumatologist was on a trip in Europe so I waited two more days until he got back.
He came in with a smile and introduced himself to me and my aunt. He asked me questions like how long had I had the rash on my cheeks and about the pains I experienced. He was very patient with me and explained what was lupus. I was diagnosed with Lupus Nephritis.
I cried some nights because I just wanted to be normal. I wanted to be like every other teen. I wanted to be healthy. I know it’s probably not the right thing to do but I kept my feelings to myself, and I still do.
I got out of the hospital and went back to school for one day. I tagged along on a soccer game with my teammates but something was wrong. My head felt..weird. The next day I had an appointment with my nephrologist.
When they took my blood pressure something was off. It was too high. WAY too high. I’m talking like 180/100 high. I didn’t know much about blood pressure but the look on the nurse’s faces and the doctor told me this was bad.
So again I ended up in the emergency room. I felt sad because well there I was again. The same place where eventually I was diagnosed. I felt like this is how I would spend my life. In and out of hospitals.
During a procedure to check how my heart was doing I vomited because I was feeling nauseous. The nurses came in and injected me with something. By this point I was very stressed and crying. Eventually I fell asleep.
When I woke up I was in a different room. It was dark but I could hear voices nearby. I saw a nurse in my room and she asked me if I wanted the tv on. I said no, that I just wanted to sleep.
When I woke up again I saw my family sitting in the room. My mom was not there. It was later that I found out she was very upset and crying in a different room, and the doctors said it would be best if she calmed down before seeing me, so I wouldn’t get upset.
The doctor came in and explained what happened. Turns out while I was asleep they took me to get another exam but while in the process of preparing to switch me beds I suffered a seizure due to a sodium overload.
30 minutes later I suffered another one in the PICU. All while I was asleep. That explained why I was so tired when I woke up.
I had to ask for the nurse’s help to use the bathroom, which was kinda embarrassing for me since I like to be independent. I was always respectful and polite to them because I knew how much hard work they put into a patient’s well being.
I lost weight bc of the diet they put me on. A low sodium diet. I’m used to it now but it wasn’t easy in the beginning.
After I left the hospital I was encouraged to gain weight. I was around 95 pounds. Underweight. I tried but food without salt just discouraged me from eating. I did end up talking to a dietician during one of my Cytoxan sessions. She helped me with the DASH diet.
School was hard. I had missed a lot of work and my grades were F’s or low D’s, which made me even more sad. I struggled but eventually managed to bring them up again.
Throughout all of this I didn’t tell my friends bc I knew if someone at school got wind of it then rumors would spread. I’m an introverted girl so that’s like my worst nightmare. I did tell one friend. The one person who was concerned for me.
The pills were hard to get used to as well. I mean from going to 0 pills a day to like 10 is huge.
I love my mom but honestly the person who helped me the most throughout all of this was my aunt. She got up everyday and made me breakfast before she left for work. Cut me kiwis and made sure I took all my medications. I do all of that myself now but back then I was very depressed and didn’t even want to get out of bed in the morning.
I still take a lot of medications but thankfully I have been doing better. So far I’ve been taken off of prednisone and omeprazole, so I’m very excited to keep living my life with this disease in check.
If you read my whole story thank you for taking the time :) I really appreciate it and sorry for any spelling errors. I kinda rushed writing this so there might be some stuff missing.

Hi everyone,
I am Jeremy, 26 male, diagnosed (leukemia - CMLR) 08/14, I am currently preparing for a bone marrow transplant and was wondering if anyone has any recent experiences they could share.. message or comment
So far I have a few matches for donors and am doing lots of tests for my heart
I also have a few questions if someone has any information or experience with a transplant.

1. Did you feel like crap day 1 of the chemo or did it take a week to kick in...
2. What was it like when you did feel the effects? Is it like having the flu? Going through withdrawal? Just feeling tired?
3. Is there anything you wished you knew before starting this whole process?
4. Recovery time and experience after leaving the hospital
5. Any good cancer jokes, transplant related or leukemia, so far I only have come up with "ok I am here for the full body wax" - once the chemo starts that is

Anyways.. it's been almost 3 years so I am alright mentally for now with the disease... a little bit anxious for the future but I am hoping a very positive attitude and some jokes will go a long way
Thanks for taking the time!
Edit: upon scrolling through I saw a few other posts on this topic, I saw something about sucking on ice cubes to avoid the chemo getting into your mouth, that is a solid tip! Looking for more of those haha
Edit 2: THANK YOU everyone who has posted / messaged me! I am feeling much better about the whole thing, I found today I will not have any radiation, I will be given two things and if anyone has any experience with them please comment or message me anytime;
Buslfan - day 1,2,3
Fludarabine - day 2,3,4,5,6

Document entered into evidence
Inquest 2014-348
County of Greenfield
Journal of Decedent Elaine Anderson
Recovered from Computer Hard Drive on Property
March 1, 2014
We moved in today!! I am so psyched about the possibilities of this house and property! The old farmhouse needs a lot of TLC after 150 years, but it's well-built stone with solid rafters, hand-chiseled from the wood of the chestnut trees that used to be so abundant around here. I had the great idea of starting a journal about our life in this house. Maybe 150 years from now, this will be part of this house's history that someone else will enjoy reading.
Doug has so many great ideas of how to renovate the interior. His job/commute doesn't allow him a lot of hours at home for hands-on work, but his firm is doing so well -- even in this economy -- that there should be no trouble hiring top-quality craftsman from the nearby Amish community to do the work, in keeping with the historical character of the house.
So he is in charge of the house, and the grounds and outbuildings are all mine! There's plenty of room for a victory garden, so we can have fresh produce all summer. I want to learn how do home canning, so we can enjoy the bounty of our land all winter, too. They have classes in canning and other home crafts at the Y in the center of town. I'm sure I'll want to attend plenty of those in order to get to meet people. The homes are so spread out around here, I can't just walk next door to have a cup of coffee with a neighbor. Sasha, our Lab, is fun to take out for her walks, but she's not much of a conversationalist!
Tomorrow I'll stake off the garden and I'll get started preparing the soil.
March 4
Well, I will be getting plenty of exercise this spring. The soil hasn't been cultivated in years. It's packed pretty hard. And some of the "weeds" are more like small trees and shrubs, The roots are thick and penetrate deeply into the subsoil. And now I know why they chose to make the house out of stone -- no shortage of big rocks, here, either! I've read about how much better it is to do no-till gardening, so I'm giving it a go, but I'm not sure how much difference it makes with all the digging I'm doing, trying to excavate these roots.
Sasha is amusing herself finding little animals to chase, so she's not in the way, fortunately. There are workers in the kitchen putting in new cabinets and counters, and the bathroom in the master bedroom has been re-tiled already. The rest of the house can be done in stages, but those areas really had to be done first to make the place liveable.
March 10
Well the excavating has become a little more interesting. It looks like part of the area I chose for my garden was used for dumping family trash. There are old bits of pottery and glass. I am saving the pieces, in case I can put together a whole item. Maybe there will be something valuable. I won't have time to research much until I get the garden planted. The last-frost date is nearly here, and I had wanted to get my lettuce planted good and early.
March 30
Eureka! I think I actually found some little buried treasure worth keeping among all the bits of trash. It's a tiny bottle of a beautiful cobalt blue color. The outside is a bit roughened by being buried so long, so I don't think I'll being going on Antiques Roadshow, lol, but it's still quite pretty. It would look cute on the shelf over the sink where the sun comes in.
It took me forever to get all the mud out of the inside of the tiny bottle though. And I had to rub around the raised lettering on the outside of the bottle for a long time to clean the muddy clay off the closed portions of the "e's" and "o's." I used my fingertips instead of a brush, so I don't think I did any additional damage to the glass surface. It's still hard to read -- something like "Hunyon's Minted Bromo." Or maybe "Munyon's." I guess a bromo was an antacid? They must not have had much heartburn back in the day, if they only needed a bottle that tiny to cure it!
The garden is ready for planting. I picked up some seeds last week to start planting this afternoon. Green beans, navy beans, lettuce, beets, carrots, corn. I've already planned the layout for the tomatoes, peppers, zucchini and eggplants that I will buy in flats from the nursery.
I had been disappointed that Doug wanted to put off getting pregnant until we had the construction inside the house finished, though I knew he was right about not wanting me exposed to anything nasty when we started scraping paint and tearing down water-stained ceilings. But planting this garden is definitely keeping my nesting instincts well-satisfied. This is actually a lot of fun!
April 8
Grrr. I'm getting annoyed. I've had some dirt caught under my fingernail since I cleaned off that bottle. I'm used to the dirt, of course. But I've taken to rewarding myself for my hard work with a long soaking bubble bath in our claw-foot tub every night, and my nails are a least clean by bedtime, even if they've been torn up a bit during the day.
But that right index finger just hasn't come clean, and it's been over a week. It looks so dirty, I had to wear nail polish to conceal it when I went to my canning class yesterday. First time I've bothered with nail polish since the gardening started!
But anyway, I really looked at the dirt when I tried to clean it out, so I know what it looked like yesterday. Today, it definitely looks like there is more of it, not less. It's weird looking, too. I can't really put my finger on it. But it looks different than the dirty fingernails I've come to know and love this spring.
April 12
Okay, now I'm more than annoyed. The "dirty fingernail" stuff is now spreading onto the tip of my finger. It looks like I dipped the tip of my finger in some type of dye. I'm making an appointment at the doctor's. I hope it's not some type of skin cancer. Doug noticed it too, and he is taking off work to come with me to the doctor. I love him so much!
April 20
Well, I met my new doctor, and she's really nice. I'm glad she's not the type to try to pretend she knows everything. She was very honest and said she had no idea what it was. She checked my circulation and nerves and movement and everything, and it was all normal. She said she was reassured that the dark color is just on the surface layer of the skin, not down to the lower layers where she would expect a skin cancer to arise. Now that she points it out, I can see it, too. It seems like it should just rub off the surface. Except it won't. She's referred me to a dermatologist. Unfortunately, the first appointment isn't for a month.
April 27
I had the follow up appointment with my doctor today. The black color has already spread up to the the knuckle of my finger. She tried not to scare me, but she looked really concerned. She telephoned the dermatologist herself, right while I was in the exam room. She got me an emergency appointment for tomorrow. It's a bit of a drive. I'm glad Doug's job is letting him take off all this time to come with me. If I get bad news, it would be really hard to drive home alone.
April 28
I saw the dermatologist. I wish I could say more, but he pretty much just popped in and out. He had his secretary schedule me for "P-time" next week, which I gather means "procedure time." He wants a biopsy, but he doesn't do them the same day as the office visit. I'll have to wait another week for more information. I'm getting nervous now. I was hoping he'd say, "oh, that's just fingerblackinosis temporaria, it goes away by itself in two months." I was happy to have a primary care doctor who was willing to admit what she doesn't know, but it doesn't make me feel so good when the specialist doesn't know, either.
May 5
The dermatologist took a little "punch" biopsy on the side of the finger. It's a round hole cut into the skin with a little tubular-blade knife, about a quarter-inch across. The "punch" comes out in the center of the tube of the blade and gets sent off to the lab. Fortunately, the scar won't be very noticeable ... unfortunately, that's because he had plenty of skin to choose from. He took a piece at the edge to the enlarging black area, where it is spreading over the normal skin. It's halfway to the next knuckle now. I've stopped attending canning class because I can't conceal this black fingertip.
May 15
Oh. My. God. It's like the biopsy lit a match to a pile of oily rags. The black color has stopped spreading in a continuous "front" and has burst into this branching pattern around my hand. It's almost pretty, like a henna tattoo. But it's not a healthy brown color like henna. It's this unnatural grey-blue-black color that doesn't look like anything that ought to be on human skin. I'm keeping my gardening gloves on, even in the house, even when there are no workers around. I can't stand to look at it. But then I go into the bedroom by myself and pull off the glove and look anyway. It's like a train wreck in slow motion, where you can't stand to watch, but you can't look away, either.
May 20
Back to see the dermatologist today. The biopsy showed nothing. I mean, seriously NOTHING AT ALL. They couldn't even distinguish the black area from the normal area of the skin under the microscope. The dermatologist wasn't all rush-in-and-out like he's been before. He sat down and really talked to me today. He looked pretty unnerved to see the branching pattern that has started. And when he checked the biopsy site, there was no scab, no scar, nothing. It's like there never was a wound at all. He was kind of apologetic and said something about fixative and decoloration and whatever, like there must be some explanation for the nondiagnostic biopsy, but he clearly had no idea what the explanation is.
He asked me to come to the Dermatology Society Meetings next week. Apparently all the "interesting" patients are invited to sit in little rooms while dermatologists from all over the area march in and out, giving their opinions about the diagnosis. It sounds demeaning, but at this point, I want all the smart people I can get looking at this. I'm getting scared. It doesn't help that I've pretty much got no one to talk to except Doug.
June 2
Well the dermatology meeting was a surreal experience. Who knew there was enough work to employ so many dermatologists in this area? They brought their residents and students with them, too. They shuttled in and out of the little room where I was sitting, all afternoon. Some of them were nice and tried to be reassuring. But others had horrible bedside manners and just talked among themselves as if I weren't there. One self-important jerk was spouting off about how it was obviously dendro-something argyro-whatsit and how a biopsy would clearly show granules of something. Then one of the students innocently asked about the biopsy that had already been done, which he would have known about IF HE HAD READ MY HISTORY BEFORE OPENING HIS BIG MOUTH. It would have been funny watching him sputter and backtrack while looking for the non-existent punch biopsy scar. Funny, that is, if it weren't my arm we were talking about.
The black, twisting tendril pattern is up past my elbow now. The branching pattern isn't like anything a henna artist would have done, either -- the angles are ugly and sharp, and the tendrils look as if they are covered with stubby, hairy roots. But it still just looks like a color change on the surface, with no change in the texture. The dermatologists were feeling my arm all over looking for something with texture, thinking it would be worth biopsying. I'm almost ready to let them take the whole damn arm if it stops this thing from overtaking the rest of my body. It shows no sign of slowing down or of being satified with the part of my body it has claimed so far.
I'm still working the garden, of course. It's the only thing that keeps me sane. We've got delicious fresh greens for our salads now. Doug baked homemade bread last weekend. He's doing most of the cooking. His job has let him cut back on his hours, thank goodness. I'm afraid to touch the food we eat with my bare skin.
Not having neighbors in walking distance is seeming like a real advantage now. We haven't had any workmen at the house in a while. The projects they had started will just have to stay half-finished.
June 13
I want to cry. It's over my shoulder, onto my breast, and up my neck. I won't be able to keep it under my clothes very much longer. I don't want to be a hideous monster when I go out, even though I don't go anywhere but doctor's appointments anymore. The dermatologist did another biopsy, and it still looked like completely normal skin. Everyone is mystified, and frankly, if they weren't trying to be "professional," I think they would be freaking out. They wear plastic gowns and gloves just walking into the exam room with me now. They prescribed a bleaching cream.
I'm not even thinking of having a baby anymore. We haven't had sex in weeks. I keep my skin completely covered in bed, even though it's getting pretty warm at night now. Doug is so supportive. He tells me how beautiful I am every chance he gets, and he seems to believe it. I will treasure those words, even though I think he is deluding himself when he says them. I am so lucky to have a man like him.
June 29
Onto the face. It has spread up the neck onto my chin. I am trying not to let my food touch it as I eat. I don't know if it makes any difference. I wasn't being careful like this when it first started. Maybe the same thing is happening on my insides, and I don't even know it. The bleaching cream has had no effect at all. The dermatologist started me on steroid pills.
I told Doug we should sleep separately. I don't want him to be infected with whatever this is. He wouldn't hear of it. He says he won't let me do this alone, even if he ends up in the same condition, even though neither of us know where it will end. I am so blessed!
July 8
Do I even care what I look like any more? I'm getting fat on the steroids, and the creeping blackness just keeps spreading. And just when I had resigned myself to a future as a side-show freak, I woke up today to see a tendril spreading INTO my nostril. Oh, my, God, what happens now?
Sasha has suddenly started behaving strangely. She whimpers and slinks out of the room when I walk in. I know she's a dog and can't help how she behaves, but I feel so dirty. Doug moved her kennel farther from the house, and we're letting her stay out all night, what with the summer weather and all the land to run around in.
July 20
I have never had a headache this bad in my life. Doug drove me to the emergency room at Greenfield Hospital. We're both realizing this is much more than a skin problem. They shone lights in my eyes and pricked me with pins and had me walk a straight line like a drunk they'd pulled over on the road. It was kind of comical, with them all in their gowns and masks trying to do the exams without getting too close to my skin. They didn't find anything wrong . They did a cat scan anyway (normal -- what else?) and told me to see a neurologist at the teaching hospital. I hope that's not another long wait.
July 27
I got in to see a neurologist today. My primary doctor called in some favors to move up the appointment, I think, because the secretary wanted to give me an appointment in October when I called. Strange to say, the headaches had stopped by yesterday, though. I've just got a weird runny nose, which they thought was interesting. They did all the same exams the ER did, plus a bunch of extra ones, none of which showed much. They set up an MRI for next week.
August 4
Doug has been so calm through all this. He's been my rock when all I could do was curl up in a ball and sob. But this morning, when he looked at me, he did a little shriek before he could catch himself. The black stuff is spreading out of the corner of my right eye, onto the surface of the eyeball. It's like it came up through the nose and out that little hole in the corner of the lower eyelid.
I got into the ophthalmologist today. At least I can get prompt appointments now. I think they must have presented my case at a hospital conference, so everyone knew the results of my normal MRI, even before I did. There were a lot of students there today, all in their gowns and hoods and masks. The word must have gone out that I would be coming in. At least I've achieved my career goal as a side-show freak :/ But they had nothing to offer. They gave me some steroid eyedrops, even though I'm still on the steroid pills with no apparent effect.
August 14
It's on both eyes now, just spreading over the surface of the eyeball, but it's made my vision dimmer. It's like wearing sunglasses all the time. I'm in the garden as much as possible, keeping busy, and I can see pretty well out in the sunlight. Indoors it's getting more difficult. I don't know where it will end. Doug set up my computer to read text out loud, and I'm pretty good a touch-typing, so I can still keep up this journal. I saw a rheumatologist, and now I have a prescription for something called cytoxan that gets reserved for potentially fatal immune conditions.
Oh, crap.
August 25
Doug saw some really pretty garden gloves with a floral pattern on them and bought them for me. He wants me to feel pretty, even if I can't stand to look at my own skin. I wish I could see them.
It's getting hard to find weeds by touch, and I dare not go without gloves when weeding plants we're going to eat. Doug's been helping in the garden now, while I watch. It helps to have the company. He's taken off work completely now. I really appreciate that.
The loss of vision seems to be heightening my other senses, though. My hearing is getting really acute. I can hear noise from some machine working inside the house. Doug can't hear it at all. He doesn't even believe there is any machine, since the house is so old. But I can hear it. Someone must have installed it sometime or another. It just chugs and whirrs day and night.
September 3
I am trying to find the radio that's been playing all night. Doug keeps trying to get me to rest by telling me there's no radio and I should come to bed. It's sweet of him, but there's no way he could not be hearing this. It's some kind of talk radio, though I can't really make out what they're saying. I think a worker must have dropped it into a wall when he was working, and it turned itself on somehow. I didn't even know the Amish listened to radios.
September 12
OH MY GOD! IT'S ALL OBVIOUS NOW! There are women in the house! I can hear them talking to Doug. He pretended to go out to get groceries this morning, but I could hear him still here, talking to them. He must have done something to me to make this black disease happen. And now that I can't see, he's brought these women into our house. They think I can't hear them, but my ears are too good for them to hide.
September 15
So happy that I had the presence of mind to put passwords on this journal. I don't want them to know that I know about them. Doug seriously thinks that if he tells me there is no one in the house besides the two of us, that I will believe him. He tried to talk me into going to a psychiatrist, but even he had to admit that it would be hard to find a psychiatrist who wouldn't be too terrified of my appearance to talk to me. Now I understand why Doug isn't afraid even though all the doctors are -- he can control this thing.
I don't know how the women are getting in and out, because I don't hear the doors or windows opening. There must be some secret passageways in this old house. I'm going to try to find them.
I'm busy putting up my canning now. But I'm hiding some of the jars in the old spring house, in case I need them. I'm completely dependent on Doug to do grocery shopping now, and I see that is a vulnerability. I put extra canned foods on the shopping list to hide them, too. So far, he hasn't noticed that I'm not really eating all the soup and beans he's bringing home.
September 26 --
The noise around here is keeping me up day and night. The women have brought their children into the house, and they're screaming and crying at all hours. (I hope they're crying because they're scared of seeing me! I wish I could see them.) I had no idea Doug was fathering all these children with other women when he was acting all concerned about my health during pregnancy. Even Sasha won't come into the house, despite the cold nights.
I am still trying to find the secret passageways. I can't let Doug know that's what I'm doing. I tell him I'm doing rehab work on the basement, now that I can't work in my garden, and he seems to be satisfied with letting me tear out the lathing down there.
He's stopped trying to make me sleep in the bedroom. How could I sleep? At least when I'm on the internet researching about old houses and secret passageways, listening to the audible-text on my headphones blocks out some of the noise.
October 6
I guess I had to know it was coming. I overheard the women talking to Doug about getting rid of me. I guess they're tired of me scaring their children. They're going to find a way to poison me and bury me in the garden I created myself. They are sooooo evil. And Doug is going along with them. Why don't they just take their brats and leave, if they don't like the way I look? My appearance must be getting pretty bad by now, so I guess it's good I can't see myself in the mirror anymore. I might want to commit suicide myself.
I now eat nothing unless it comes in a can that I open myself. I feel the surfaces of the cans carefully before I open them, and I listen for the sound that tells me there was a good seal, just in case they might try to inject something into a can to poison me. I'm still stashing canned goods in the spring house, too, in case they do all drive off and leave me alone.
October 10
I have to make my move tonight. They're talking about setting the house on fire when I go to sleep. I am terrified of being burned alive. The thought of trying to feel my way out of a burning building is filling up my head. I can't think of anything else. From now on, I must stay awake until I make my move.
October 11
I did it. I gave them no reason to suspect. While the women were all in the kitchen with their brats laughing about how they were going to kill me, I felt my way very quietly to the bedroom. Doug was snoring and never skipped a breath until my spade came down on his snoring head. It was such a relief to lie down in my own bed and sleep. To think of all the times I slept next to him, as if he were my protector. Now, it was knowing that he was lying there unable to hurt me that brought me such comfort. Wait until his women find out why he hasn't come down to breakfast today!
They and their brats have to face me without Doug as a go-between, now. I have removed the fuses from the old fuse box in the basement, so there will be no more lights. If the lack of electricity doesn't convince them to move out, I will do whatever is necessary. Tonight, I'm going to hunt every one of them down in the dark, where they have no advantage over me.
November 1
I am so miserable. I still hear them -- and I STILL HEAR DOUG. So who is this rotting corpse I have been sleeping next to? It must be witchcraft. Those witch-women substituted some demon with a Doug-voice for my sweet husband, then left the real Doug in my bed when they saw me creeping upstairs with my spade. I have killed him! And they are STILL living in my house.
I have hung my home-grown garlic everywhere. I have swung my spade wildly against the voices, smashing furniture and walls. I have felt the ground of my garden for the soft leaves of my sage and burned it in every room. But I still can't make them leave or even shut up. I am running out of canned food. Sasha won't eat the food I put outside for her, and no one else seems interested in feeding her. I haven't even heard her whimpering lately, so maybe she's run away. I wish I could run away.
I have only one option available to me. I don't want to wait for their creeping black spell to destroy me. I must die as a woman, or what's left of one. I must bring a knife to bed with me tonight and drive it into my own heart, lying next to the real Doug, whom I have misjudged. May his soul forgive me for my doubt.
--------- End of journal entries ----------------
Post script
The coroner ruled this a murder-suicide. There was no evidence of any people in the home besides Douglas and Elaine Anderson, the decedents. The journal clearly outlines her impaired mental capacity at the time of the murder. By the time the bodies were discovered, there was so much decomposition that the condition affecting Elaine Anderson's skin was difficult to evaluate, and the necropsy specimens provided no information.
I was the technician assisting the autopsies in the county medical examiner's office. After reading this journal, I am in shock.
I nicked myself with a scalpel during her autopsy.