Please Share Your Diffuse Large B-Cell Lymphoma Journey

DLBCL Journey

-Noticed lump on my lower neck (supraclavicular region) in Dec, 2019 (otherwise healthy, 36 y/o male)

-Diagnosed with stage 4 DLBCL (bulky) in Feb, 2020 (biopsy)

-6 sessions of R-CHOP (once every 3 weeks)

-NED in June, 2020

-PET scan in March, 2022 still showed NED

-side effects from R-CHOP: hair loss, chest pain between 1st and 2nd chemo session (20 cm mass in chest being melted by chemo), fatigue, slight nausea, water retention in face, irritability, neuropathy in feet/hands

-thankfully, I feel completely back to normal and have no restrictions

It took me a full year after chemo to get rid of the pins and needles/numb feeling in my extremities....I'm now almost 2 years out and everything is back to normal

I am new to this forum. I was diagnosed with stage IV DLBCL arising from transformed FL in October 2020. This was a complete shock to me, as I lived an extremely healthy lifestyle (specifically anti-cancer, immune boosting, organic, anti-inflammatory, no WIFI, etc ). I had none of the standard symptoms of lymphoma, only swollen lymph nodes. I spent 10 days in the hospital (biopsy, bone marrow biopsy, etc), as the swollen lymph nodes in my neck were choking me. I had 6 cycles of R-CHOP, which I tolerated pretty well-just some fatigue and neuropathy (and my fingernails were separating from my nail beds!). My PET Scan showed complete response at cycle 2, and then again, NED after treatment. I relapsed 7 months later, at one site underneath my left armpit. Had another biopsy, which confirmed relapse of the same pathology. I read my Doctors's notes more carefully, and saw that I had a sub-type of DLBCL called Double Expressor. I also had cMYC rearrangement (single hit) and extra copies of BCL6. I decided to forgo any salvage treatment, as I read many studies that concluded that my particular sub type of lymphoma does not respond to any salvage treatment, and that the outcomes were "inferior" and "sub-optimal". A few studies even called my prognosis "Dismal," with or without treatment. (that was my favorite). Since my relapse was in one location, I was able to have palliative radiation therapy (20 treatments, 40 Gy) which the Radiation Oncologist says eliminated tumor activity. (The tumor was the size of a baseball within 6 weeks, and shrunk 50 % in 5 treatments, and showed no activity after 15 treatments). The RO said it would have broken through my skin in 24 hours had they not done the radiation. Now, 6 weeks later, I have a new lump in my neck, which my Medical Oncologist told me is the relapse continuing. I have chosen Palliative Care at this point, since there currently are no treatments available to me that are worth suffering for if they do not work. The studies even state that the greatest unmet treatment need in DLBCL is in DEL and DHT (double expressor, double hit) sub types. There are new targeted therapies, but they come with their own varieties of side effect suffering. Someone said that "fear of relapse drives treatment decisions" and that is so true. So, I relapsed. The other shoe dropped. I have made peace with my mortality and am resolute now to just continue this journey wherever it leads, and have chose quality of life over quantity. I feel pretty good right now, and am able to do all the things I want to do, happy to be with those I care deeply about, and appreciating the new awareness this journey has give me.

Hi, Gigiof8,

Likewise, I'm a new member. I was diagnosed with DLBCL stage III/IV in late May of this year. Per the cytogenetic results, the lymphoma is a double-expressor (BCL and MYC), but not a double-hit (no translocation of the MYC gene). In my case, it appears that DLBCL is part of a paraneoplastic phenomenon per my oncology and rheumatology teams. I have mixed connective tissue disease, an autoimmune disorder which has been associated with non-Hodgkins lymphoma. It's a fascinating connection! I'm in a medicine-adjacent field so I've read a LOT of review articles and have very sciency chats with my treating oncologist, who is awesome. 😊

I had my 5th round of R-CHOP about 2 weeks ago with the next and final round a week from tomorrow. The most significant side effect for me has been fatigue, and that has become progressively worse since round 4. Also, be aware of the "prednisone crash." The P in R-CHOP is prednisone 100 mg (at least that is my dose) for Days 1 through 5 with Day 1 being the day of infusion. On Day 7, it's like slamming on the brakes when you're driving 70 mph.

My hair thinned after the first round of R-CHOP, but then hair loss stopped after that. I'm neither bald nor patchy so I haven't needed a cap this summer. There are other areas of hair loss: a painless "Brazilian" 😀 and no more nose hairs. I had mouth sores after round 1 which were really irritating, but for subsequent treatments, I didn't experience sores. However, my perceptions of taste and texture are "off," and certain textures of foods repulse me. My sense of smell is A-OK.

On bras, I'm fond of Jockey brand, and they've been fine with my port placement which is well removed from the bra. I always wear a button-down shirt on infusion days so the clinical stuff can easily access the port.

On the upside, my interim PET scan in early August (just before round 4 of R-CHOP) showed no evidence of disease (NED). So, R-CHOP is working! That makes the side effects bearable. I'll have my post-treatment PET in mid-October, and I'm optimistic that will also show NED. Hopefully, I can maintain remission! I have excellent clinical teams overseeing my DLBCL and autoimmune glitchery here in the Boston area, so I think these can be managed. Just gotta plow through the chemo-fatigue!

Nurse-practitioners are the best! The NP on my lymphoma team has been fantastic.

I'm not a clinician, but a biochemist who was in biopharma research (including oncology) for almost 20 years, and I am now a regulatory medical writer in a mid-sized biopharma company. That helps me understand clinical lingo! I definitely take comfort in knowledge, and that helped me cope with the diagnosis and treatments. I chose my user name because I am pretty amazed with rituximab. That was one of the first drugs my employer put on the market. I'm a big believer in better living through chemistry. 😀

In coping with side effects, yes, Biotene mouthwash is great. I'm still using it. I haven't had any problems with nausea. The long-acting anti-emetics given as pre-treatment are miracle drugs as far as I'm concerned. Miralax has been my friend to relieve constipation (a side effect of palonsteron). I've experienced a couple of bouts of diarrhea within a week of chemo but Imodium has worked well for me. I haven't experienced any bone pain from filgrastim (my lymphoma group uses Neulasta Onpro), but I always take loratidine starting on the day of infusion then continuing for another 6 days. The studies are mixed on whether loratidine is fully efficacious for mitigating filgrastim side effects, but it seems to work for me.

Good luck tomorrow and please check back in!

 I thought by now I had seen it all. But again, God wasn’t done with me yet. Now at a young 69-year old senior I developed issues with my stomach. I had pain, excessive belching, and pressure. 

Eventually to the degree it was affecting my whole life. I was becoming terribly weak. I decided to seek medical help thinking I may have had some type of stomach or intestinal disorder. 

As you might imagine first a physical screening, then an appointment with my primary. He sent me for a CT Scan, that’s when I noticed a vibe in the room the technicians had seen something. 

The next thing I had to do was go to see a Gastro doctor for a scope and biopsy. No one wanted to state what it was, even when I asked directly is this a cancerous tumor. 

However, the biopsy confirmed my suspicions, and a Cancer specialist was now brought into the picture. After yet even more tests no radiation or surgery were options due to its location. Chemotherapy was my only option and quickly as this tumor was showing to be very aggressive.

 Wow in a matter of a few short months, I was now a cancer patient how would I deal with all the unknowns. Let me tell you faith and prayer were the most important ways for me of coping while I learned. 

I did research on the internet as well to learn as much as I could about my cancer. The Cancer doctor told me it was one of the most successfully treatable   of all types of cancer. I have Diffuse Large B-Cell lymphoma non-Hodgkin’s. 

What if I am not one of the lucky ones who gets complete remission am I ready for the end of my life and what about my family? 

Well once again God had already intervened as one of my sons was constantly after me to update my will.  In January I finally did. So that meant that part was taken care of. 

One night I had a dream of when I was a young boy reciting the 23rd Psalm in school as one of our morning prayers. Yes, back then we still had prayer in public school. 

But somehow the words had new meaning to me, and God revealed the message he had for me that would bring me inner peace and acceptance of my new friend, Cancer. 

I now seek out and freely share how these six verses and how they speak to me assuring me that no matter what happens I will always be with him. This is the grace that is available through the Holy Spirit to everyone. 

God heals in many ways and knows what healing we each need individually. For me it’s a divine spiritual healing to accept His will for me. Perhaps by His grace a long and productive life of serving Him. May the Lord be with you all as you face your particular need for healing. Thank you, Amen.

Yikes, Gigiof8! What a frightening experience! I'm so sorry you had to go through this, especially on top of chemo. An adverse reaction that started during the dosing of Neulasta and then collapsing an hour later is REALLY acute, so I can see why your daughter, who clearly must have experience with patients in anaphylactic shock, is convinced. I'm glad you're not discouraged, and I hope that your oncology team can figure out a good path forward.

My Round 6 R-CHOP infusion went well, very relaxing actually! I'm on Day 3 of prednisone 100 mg so I'm buzzy, ravenous, and have the attention span of a gnat. The inevitable prednisone crash will come this Wednesday, and my appetite will drop off then.

I also asked my lymphoma team about influenza and CoV-2 vaccinations since rituximab does a major number on depleting B-cell populations which are needed for antibody responses. They confirmed what I expected: the vaccinations would be futile for me this autumn, but that I should definitely go for a second round of Evusheld in December. I'll see my rheumatologist next week so I'll ask her about it then. In the meantime, fingers crossed that my T-cells can do their thing!

Yes, definitely ask about vaxes. I saw my rheumatologist today, and she also noted it would be unlikely I'd respond to the COVID vax since my B-cells are basically non-existent, but to go ahead with a flu shot with the "can't hurt to try." She has scheduled my next Evusheld for January, and she and my PCP/internist are "on-call" for Paxlovid or Tamiflu just in case.😊

Thank you it went well results next week.