FUCKCANCER

What is Diffuse Large B-Cell Lymphoma (DLBCL)?

Diffuse Large B-Cell Lymphoma, or DLBCL, is the most common type of non-Hodgkin lymphoma, accounting for about 30% of cases in the U.S. It's known for its rapid growth in lymph nodes and can also affect other parts of the body like the spleen, liver, bone marrow, and various organs. Typically, DLBCL starts in the lymph nodes of the neck or abdomen and is marked by the presence of oversized B cells. People with DLBCL often have B symptoms, which include fever, night sweats, and significant weight loss over six months.

My Story

For years, I used a gator mounted sprayer to apply glyphosate, the most commonly used herbicide globally. I suspect this exposure is the source of my cancer. Research from the UW Department of Environmental & Occupational Health Sciences links glyphosate to a 41% increased risk of developing non-Hodgkin lymphoma.
My Stage 4 DLBCL had spread to my stomach, gallbladder, spleen, pancreas, kidneys, liver, and three soft tissue areas. I had lost 70 pounds in half a year and had fevers and night sweats. I was actually trying to slim down and thought I was succeeding (Hah!) until one morning I woke up with jaundice. A tumor was blocking my liver's bile duct, leading to a dangerous buildup of liver toxins in my body. I went through four ERCP procedures, with only the last one working by a specialist, and a failed attempt at Percutaneous Biliary Drainage. I was sent home but had to return a week later due to an inflamed gallbladder. That's when I was unexpectedly told by a nurse that I had lymphoma before I could discuss it with my doctor.
My oncologist diagnosed me with Stage 4 DLBCL but reassured me that it wasn't an automatic death sentence as it's aggressive but responds well to aggressive treatment. She considered CAR-T therapy, a form of immunotherapy, as a potential treatment - however, my insurance company required me to first try a treatment called POLA-R-CHP.
Going through treatment is more than just the physical battle. It's interesting; a lot of people offered to shave their heads with me as a sign of solidarity. Yet, when I really needed someone to talk to or help me out, not everyone was there. This experience showed me that real support isn't just about big gestures. It's about the little things, like checking in regularly and offering a helping hand when needed.
On the emotional front, things have been tough. I've started seeing a therapist who mentioned that I might be emotionally numb, which means I could fully process everything that's happened only much later. My fight against cancer includes more than just the treatments - there are follow-up scans, and I need to get my port and stent removed. The moment I found out I was in remission was as quiet as when I first learned I had cancer. It's a stark reminder of how fragile life is and how important it is to value the people in our lives. Big changes can happen without any warning.
Financially, this journey has been incredibly hard. Even with great insurance, I ended up using all my savings, taking money out of my 401k, and maxing out credit cards. The treatments spanned over two years (Jul '23 to Mar '24), meaning I had to meet my deductible and out-of-pocket maximum twice. Now, as I'm getting back to work and my financial situation begins to improve, I realize how lucky I am. But it also highlights the importance of advocating for yourself and having multiple backup plans.
Cancer treatment is as much about handling day-to-day life as it is about fighting the disease. The best kind of support comes in many forms. It's about showing up in the ways that really count, especially during those quiet moments of struggle and recovery.

Medications used in my Treatment (POLA-R-CHP Therapy)

I underwent POLA-R-CHP (a modified combination of drugs) to treat my Stage 4 Diffuse Large B-Cell Lymphoma (DLBCL). It is used to improve outcomes over the standard R-CHOP regimen that is based on the POLARIX trial, which demonstrated a statistically significant improvement over R-CHOP at 2-years, which represents an advancement in treatment for selected patients.

• POLAtuzumab Vedotin-piiq (Polivy)
  • Antibody that specifically targets the CD79b protein found on B-cells, aiding the immune system in destroying these cells
• Rituximab (Rituxan)
  • Monoclonal antibody that targets CD20 protein found on B-cells, aiding the immune system in destroying these cells
• Cyclophosphamide (Cytoxan)
  • Kills rapidly dividing cells, including cancer cells
• Hydroxydaunorubicin (Doxorubicin Hydrochloride)
  • Interferes with the DNA inside cells, preventing them from dividing and growing
• Prednisone
  • Corticosteroid used to reduce inflammation and suppress the immune response

Medications Used for Symptom Management

These medications were crucial for managing my side effects and ensuring the effectiveness of the treatment regimen during therapy.

Nerve Problems (Pain, Numbness)

• Gabapentin (Neurontin)

Nausea and Vomiting (Sickness, Vomiting)

• Fosaprepitant (Emend)
• Palonosetron
• Ondansetron (Zofran)
• Promethazine (Phenergan)

Infection Prevention (Virus, Infection Defense)

• Acyclovir (Zovirax)
• Levofloxacin (Levaquin)
• Sulfamethoxazole-Trimethoprim (Bactrim)

Pain Management (Discomfort Relief)

• Acetaminophen (Tylenol)
• Lidocaine-Prilocaine (Emla)

Gastrointestinal Symptoms (Digestive Issues)

• Dicyclomine (Bentyl)
• Metronidazole (Flagyl)

Blood Clot Prevention (Clot Risk Reduction)

• Apixaban (Eliquis)

Diarrhea (Loose Bowel Movements)

• Atropine-Diphenoxylate (Lomotil)

Allergic Reactions (Itching, Swelling)

• Diphenhydramine (Benadryl)

Inflammation (Swelling, Redness)

• Dexamethasone (Decadron)
• Methylprednisolone (Medrol)

Tumor Lysis Syndrome (TLS) Prophylaxis (Tumor Cell Breakdown)

• Allopurinol (Zyloprim)

Hydration & Electrolytes (Fluid, Mineral Maintenance)

• Sodium Chloride (Normal Saline)

Febrile Neutropenia (White Blood Cell Drop)

• Pegfilgrastim (Neulasta)

My Questions About Managing Side Effects & Daily Life Impact

Will I lose my hair, and when will it grow back?

Hair loss is a common side effect of chemotherapy treatments like POLA-R-CHP. Typically, hair loss is temporary, with regrowth starting after treatment ends. In some cases, hair may begin to return even before treatment completion. My hair started to regrow slowly while I still had 2-3 infusions remaining.

How do I manage bladder irritation and changes in bowel movements?

Hydration and following dietary guidelines are crucial for managing symptoms such as diarrhea or constipation. Communicate any significant changes to your healthcare team promptly.

What can I do about feeling tired?

Feeling tired after treatment is pretty standard, and it can stick around for a while. To deal with it, mixing rest with some light exercise works well. Using strategies to save energy and prioritize what you need to do can help too. From my experience, the tiredness would usually last 2-3 days after treatment, and then I'd feel mostly okay - however, even when I felt ready to tackle tasks, I'd quickly run out of steam. For example, setting up Christmas decorations, I was only able to do my small tree and 2 strands of lights on the house, which ended up taking three days.

What's the risk of developing peripheral neuropathy, and how is it managed?

Peripheral neuropathy, a potential side effect, may lead to treatment adjustments. For moderate to severe symptoms, treatment may be paused and resumed only if symptoms improve. Treatment with polatuzumab vedotin should cease permanently for the most severe cases.

How are infusion reactions managed?

To mitigate infusion reactions, pre-medication may be administered. Should you experience a reaction, the infusion could be temporarily halted then resumed at a slower rate once symptoms subside. Severe reactions might necessitate stopping the treatment for a reassessment. My reactions were mild, like hot flashes and itching, though others may experience more severe symptoms. It's critical to report any changes in symptoms during the infusion, no matter how minor.

How is a low blood cell count managed during treatment?

Managing a low blood cell count might include blood or platelet transfusions. Febrile neutropenia, a fever with a low white blood cell count, is more common with POLA-R-CHP, so using growth factors like pegfilgrastim is advised to help manage this risk.

How do the costs of POLA-R-CHP compare to other treatments?

Considering the cost-effectiveness of POLA-R-CHP against treatments like R-CHOP is important. POLA-R-CHP might be more cost-effective in the long run due to potentially lower costs for follow-up therapy and routine care, but individual situations can differ. It's important to talk about treatment options and costs with your healthcare provider to make informed decisions.

How effective is POLA-R-CHP compared to other regimens?

POLA-R-CHP is shown to be an effective first-line treatment option for DLBCL, possibly offering benefits in preventing relapses and saving on costs for second-line treatments. However, how well the treatment works can vary based on individual patient factors and disease characteristics.

Additional Links

Here's a curated list of resources, studies, and helpful links to provide the latest information on POLA-R-CHP treatment to hopefully help you understand the disease better and find support throughout your treatment journey.

• More Information about DLBCL from Macmillan Cancer Support.
• Understanding Lymphoma - DLBCL - Offers an in-depth look at DLBCL, covering symptoms, diagnosis, and treatment, along with patient experiences.
• A Phase II Study of Glofitamab Plus Polatuzumab-R-CHP for High-risk DLBCL - This study is exploring a new drug combination for high-risk DLBCL patients, aiming to improve safety and effectiveness.
• DLBCL Resource Center - Provides comprehensive education on lymphoma, support resources, and updates on the latest research.
• Will Pola-R-CHP Be the New Standard Upfront Treatment? - Experts weigh in on whether Pola-R-CHP should become the go-to first-line treatment for certain DLBCL patients.
• Polatuzumab Vedotin for Front-Line Treatment of DLBCL - Showed that after two years, 76.7% of patients treated with Pola-R-CHP didn't see their disease get worse, compared to 70.2% for those on R-CHOP. The study compared the safety and higher costs of Polatuzumab Vedotin, suggesting similar safety for both treatments but raised financial concerns.
• Safety and Toxicity of Pola-R-CHP vs. R-CHOP - Discusses the safety profiles of both treatments, emphasizing the importance of prophylaxis and monitoring for potential toxicities.
• Cost-Effectiveness of Pola-R-CHP - Addresses the financial impact of adding Polatuzumab Vedotin to the treatment regimen, a consideration for patients and healthcare systems alike.

• Nov 2022: found lump
• Dec 2022: ultrasound and biopsy done, pathology comes back TNBC, Ki67 is 93%, IDC grade 3
• Feb 2023: froze my eggs
• Mar 2023: switched insurance and starting going to City of Hope – pathology slides sent to City of Hope, now ER+ 6%, PR-, HER2-, Ki67 is 90%, IDC grade 3

• started Lupron injections monthly
• Carboplatin + Paclitaxel once a week for 12 weeks
• Pembrolizumab once every 3 weeks for 4 doses

• continued monthly Lupron injections
• Adriamycin + Cytoxan once every 3 weeks for 4 doses
• Neulasta booster after A/C infusion
• continued Pembrolizumab once every 3 weeks for 4 doses

• nipple-sparing bilateral mastectomy with immediate implantation of implants
• continuing Pembrolizumab once every 3 weeks for 9 doses
• confining monthly Lupron injections, last dose scheduled for October

I AM NOT THE ORIGINAL PERSON WHO POSTED THIS.