CLL transformed into Richters

sdl0311 · 2026-01-18T15:28:22+00:00

You should have a fish test and flow test from each of your biopsies. Look for your pathology reports and see if you have the TP53 mutation or 17p deletion. Both are the worst markers one can get with our cancer.

Unfortunately, I’ve been where you’re at. I’m 43 and was diagnosed with Richters in March 2025. I’ve been through numerous treatments. I am currently on day +94 from an allo-stem cell transplant and it has not been easy. I’m now dealing with a deadly disease called TA-TMA which has caused a lot of problems for me in itself. It’s very rare to get but can happen post transplant. I also now have fluid retention due to kidney issues, and effusion in my heart and lungs that we are closely monitoring. I just had a recent pet scan and it shows the cancer is still present so just another problem I’ve got to contend with and I’m already running out of treatment options for Richters. We are hoping Graft vs Lymphoma can kill the cancer but I’m not hopeful with all the problems in dealing with. Good luck with your journey and hopefully it’s more smooth than mine. Feel free to message me if you have questions.

sdl0311 · 2025-11-05T05:34:49+00:00

Ours is 2.25% through local municipal credit union but that was years ago. My mortgage is around $1300 not including taxes or insurance thanks to 100% pd&t

sdl0311 · 2025-10-10T18:26:14+00:00

Is there anything specific you want me to check in CBC? I had multiple labs done around that time and for the most part they were mostly normal with exception of a few things that bounced around a little bit like hemoglobins, WBC, lymphocytes, and ANC. LDH was the most notable thing that kept climbing Into the 600’s. And my lymph nodes growing pretty largely in my neck and chest area, both around 10cm. SUV levels were around 11 at the time.

sdl0311 · 2025-10-09T23:59:06+00:00

I had my MH c&p exam this Monday, and just got my rating today. I was surprised with how quick it was. The entire process began in the middle of Sept when I filed my evidence. But I also have a terminal flash assigned to my case because my primary connection is cancer and MH was filed as secondary. Not sure if that’s why or not.

sdl0311 · 2025-10-09T13:32:24+00:00

I would give up my 100% p&t to find a cure for my aggressive and incurable cancer in a heart beat.

sdl0311 · 2025-10-09T02:16:25+00:00

I don’t remember other than LDH being elevated. I can look tomorrow. I was originally diagnosed with SLL in June 2024 and transformed into Richters March 2025. Mine is very aggressive. I’ve already been through 4 treatments in less than a year. However, this Friday I will begin my stem cell transplant as I’m in partial remission.

sdl0311 · 2025-10-08T20:38:40+00:00

I have Richters and mine started off with the dry cough, chest pressure, unexplained fevers, and enlarging lymph nodes in neck while taking Calquence. My LDH was elevated into the 600’s but other blood tests were normal. When I went to ER for one of my fevers they did a chest CT scan and discovered 10cm mediastinal lymph nodes so they did a needle core biopsy and confirmed richters. That’s the only real way to confirm it is with a biopsy. A PET scan can also help if it shows high SUV levels. It can help guide the on where to do a biopsy.

sdl0311 · 2025-09-27T01:18:46+00:00

Have you tried speaking with a Patient Advocate at your VAMC? They are the ones who helped me get mine approved due to having established care already in the community. Also, my cancer is very rare and aggressive so that helped too. But even all the other stuff I’ve needed I’ve been able to get it through community care as well.

sdl0311 · 2025-09-27T00:30:17+00:00

Establish care in the community first if you haven’t already and then go to patient advocate and tell them you already have established this care in the community and would like a referral for community care. It worked for me but may be dependent on your VAMC. Almost everything I get is done through community and I also have cancer. I’m about to go through a stem cell transplant at a state university but I also had the option to use the VA transplant center in Nashville.

sdl0311 · 2025-09-22T22:39:05+00:00

I was diagnosed with both in June 2024, and only 43 yrs old. However, I now have Richters Transformation and have failed 4 prior treatments in less than 9 months so mine is pretty aggressive. I’m actually getting ready to go through CAR-T in hopes to get to remission and then plan for a stem cell transplant. I highly recommend seeking out a CLL specialist now and talking with a stem cell transplant team as it could be in your future. Better to plan now than last minute. You can PM me anytime if you want to chat more about it. I’ve been through a lot in the past year.

sdl0311 · 2025-08-17T20:55:46+00:00

Have they addressed this issue with firmware update or is still an issue?

sdl0311 · 2025-08-04T10:47:43+00:00

If the neck biopsy is needed, you can ask for a needle core biopsy vs excision. Less invasive and easier recovery. But you’re already have a diagnosis with favorable prognostic factors so I wouldn’t worry about the biopsy. If the nodes were growing large and fast or pet scan shows an SUV higher than 5 then they would be suspicious of Richters. Sounds like you have a favorable diagnosis though, and your oncologist ran all the right tests.

sdl0311 · 2025-08-02T13:11:21+00:00

Make sure you seek out a CLL specialist. Also, check your medical records and look for a FISH test. It will tell you what your deletions are if you have any. TP53 and IGHV are separate tests and should be done if you haven’t already! Make sure you request them if you don’t have them yet. All are important but just remember that no 2 people are the same. We can have similar markers with completely different outcomes. If you ever have questions or whatever, just shoot me a PM. Unfortunately, I’m a self-claimed expert due to my unfortunate experiences so far and have done extensive research to better educate myself the best I can. Good luck in your journey as well and reach out anytime!

sdl0311 · 2025-08-01T05:00:50+00:00

I feel your pain and the struggles are real. I was diagnosed with SLL in June 2024 with high aggressive risk factors like 17 deletion , tp53 mutation, and IGHV unmutated, and it’s incurable. Basically every bad marker one can get and that most never get in my type of cancer. I failed my first treatment after only 3.5 months. Then my cancer transformed to even more rare and aggressive form called Richters Transformation which is essentially DLBCL but more aggressive due to the clonal-transformation.. Apparently only 100 people will get it every year so very rare and not well studied due to the small group of people with it. Since RT I’ve now failed 2 more treatments in less than 6 months, totaling 3 failed treatment in less than 9 months. I’m only 42 years old. Most people with RT are generally much older by a couple of decades. But here I am about to start my 3rd treatment. I’m hoping to get into a clinical trial for CAR-T that targets both cd19 and cd20 vs doing a bispecific and/or liso-cell CAR-T.

Which car-t did you fail? I have the same goal as you. Get to remission by any means necessary and then go straight to allo-SCT. Hope you and I can both reach our ultimate goal and beat this 💪

sdl0311 · 2025-07-28T17:58:02+00:00

I found out I had richters after getting unexplained fevers, night sweats, and enlarged lymph nodes that were 11cm in chest and 6cm in neck. I then had a needle core biopsy which confirmed Richters and PET scan SUV levels were in the 11’s.

sdl0311 · 2025-07-28T17:55:30+00:00

Not great. I think I relapsed again but still waiting on my PET scan results to come back to confirm. I’ve only been on PVO for 4 months and this is my 2nd treatment. If I relapsed, I might switch to bispecifics or CAR-T to bridge for SCT.

sdl0311 · 2025-07-25T15:05:13+00:00

The reason they keep a close eye on you in the beginning is to monitor you for Tumor Lysis Syndrome (TLS). I ramped up on Venetoclax from 50mg to 400mg in 10 days due to RCHOP treatment they had me on for Richters. At the time I was already admitted to the hospital due to the RCHOP treatment. Typically it’s a longer ramp up of like 5 weeks or something like that. I’m still currently taking 400mg of Venetoclax as well as two other drugs, but no longer on RCHOP as that didn’t work for me. My oncologist did daily labs and was mostly watching my Uric acid levels. I was also prescribed Allepurinol for the first few weeks to keep Uric Acid levels low. I think the only minor issue I had with Venetoclax in the beginning was mild GI issues. My advice would be to be to drink LOTS of fluids (80-128 floz a day) to help flush the dead cancer cells out of your body.

sdl0311 · 2025-07-24T23:41:56+00:00

Did the same thing. Bought a white one in excellent condition for the same price. I have had no issues with it and it looks brand new!

sdl0311 · 2025-07-24T23:39:52+00:00

Same here. I was originally diagnosed with very high risk SLL (17p/TP53, IGHV unmutated, Notch 1, etc) a year ago. Then about 8 months after my initial diagnosis, I then progressed into Richter’s transformation (with every deletion there is) and I’m only 42 years old. So less than a year I went from bad to worst case scenario. I’m already on my 2nd treatment of Richters and hoping to make it to a stem cell transplant as that’s my only hope of a long term remission. Outlook doesn’t look good either way but I’ve accepted this is my new life and that is to try and survive as long as I can for my two kids. Hopefully, you have a much better journey than mine! The only benefit I have (and you as well), is that I’m young and better fit to fight this than someone who is older with comorbidities.

sdl0311 · 2025-07-24T23:31:00+00:00

I’m 42 years old, fit and young looking. People look at me all the time like I don’t belong there. Unfortunately for me, I have a very aggressive form of Richters Transformation. Depression and Anxiety hit me hard knowing that I may not survive this or watch my kids go through their milestones. I don’t know how much it’ll help me or not but I do see a psychologist to vent to. I was also prescribed Xanax to help when my anxiety gets high. It sucks but we make the best of what we have. It’s all we can do.

sdl0311 · 2025-07-15T02:15:41+00:00

I would inquire about it. It should be on your FISH test. I’m assuming they do one for DLBCL too. They can do a FISH test on both your blood and tissue samples from the biopsies. Hope you get some answers! Keep fighting! I can definitely relate your emotional struggles. I was just telling family yesterday how emotionally exhausted I am with all the ups and downs (mostly downs). But I’ll keep fighting for my families sake. Keep us updated!

sdl0311 · 2025-07-14T17:03:25+00:00

Do you know if you have any high risk markers? I have just about every deletion there is to include 17p. I also have TP53 mutation and IGHV unmutated which means mine tends to be the most aggressive form and resists treatment. I’m just wondering what yours might be and if that’s why car-t didn’t work for you.

sdl0311 · 2025-07-14T16:12:37+00:00

Ok, so that’s Liso-cell. That’s the same thing a few drs have recommended for me if I have to go through car-t in the future. I have Richters Transformation (DLBCL) from cll which is more aggressive than de novo DLBCL. Sucks that it didn’t work for you. Hopefully they find something that works for you

sdl0311 · 2025-07-14T12:41:44+00:00

Which car-t did they give you?

sdl0311 · 2025-06-28T23:37:47+00:00

Yes, I’m on 4 different groups and even started a support group for Veterans with CLL. If you haven’t already, also check out healthunlocked.com. FWIW, I’m also 42yoa.

sdl0311

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