My history is a CLL diagnosis around Sept of 2016. I started the Ibrutinib/Venetoclax trial at MDA in Jan 2017 achieving MRD U in April 2019. Clear sailing until April ‘22 when my blood test showed .07 CLL cells that doubled every 6 months. Showing no symptoms, my Doc did not recommend treatment. In July ‘23, I had 2 Squamous cell skin cancers. I developed 3 more since then. In Nov. ’23, my Dermatologist at MDA ordered an ultrasound of my neck. That led to a CAT scan of head and neck and a biopsy of a node in my neck. It came back consistent with CLL. During this time, I kept asking about a nodule under my chin that I can feel getting larger? I was told it probably was a stopped up salivary gland. One of my HS classmates just died of salivary gland cancer so it worried me, even though the Doc in Head & Neck wasn’t concerned. In April ‘24 at my twice a year regular appointment with my CLL doc, he sensed my concern with cells increasing and swollen nodes beginning to increase. He ordered a PET/CT. It came back lit up with lots of enlarged lymph nodes. Another biopsy on a 5cm node under my arm revealed Richters Transformation.
I’m now in mid Cycle 3 of the Venetoclax, Pirtobrutinib, & Obinutuzumab trial. I’m tolerating it very well. Almost all my blood work is now in range with platelets low at 116. I get another PET/CT and bone marrow in 2 weeks to determine how it’s working. I feel fine and can do most anything physically. My Docs recommended I test for Stem Cell Transplantation based on my 17p, Tp53, and Notch 12 mutations. He said there is not enough history to statistically tell me that MRD U can be achieved for the long term, hence, Stem Cell.
After lots of test to quality for Stem Cell, I have one left. It’s a liver biopsy which I said I wouldn’t do unless a 10/10 perfect match was found. Last Friday, I got the call. A perfect match was found.
We have some tough decisions ahead. Since I feel so good, do I trust the drugs to continue to control my Richters which has a 20% survival rate or go for the Stem Cell?
I apologize for rambling, but this site has been so helpful reading other people’s journey, I want to give enough background to help someone in the future. 👨🌾
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Louie_CC
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Louie, do you know if your Richter's Transformation was de novo or clonally related? The survival rates are considerably different, so should be included in your decision making. It's great that you have a 10/10 match!
We do have a few members who have undergone stem cell transplants for aggressive CLL or Richter's, including one of our admins Jm954
This is the reply from my Doc when asked if my RT was de novo or clonally related:
We rely on the ClonoSeq test to check the clonality. However, the sample was inadequate despite multiple checks. I discussed with our pathologists and the consensus was that if there are DLBCL cells in the midst of CLL, it is highly likely that the disease is clonally related.
Therefore, we would consider your disease as clonally related. This would not change our current treatment approach.
My treatment is the Venetoclax, Pirtobrutinib, & Obinutuzumab trial.
While that is disappointing news, I'm relieved that you are having a newer 'non-chemo' treatment. May the greater effectiveness seen in CLL also be the case for RT. The lack of transformed cells could also be seen as good news.
Louie - my husband is in the same trial at MDA in the Richter's Cohort. He is doing well and is keeping the CAR-T and stem cell transplant on the back-burner as long as he is doing well. Let us know if you would like to discuss further.
Sounds like you are in great hands! Hope the transplant goes smoothly and your new immune system kills any remaining cells. Maybe you will be one of the lucky ones who can put CLL behind you.
You will get wise and experienced feedback here from those more knowledgeable than me. Once you get all the input you can - you will make the right decision for yourself and your life. All the best to you.
You’re clearly doing very well and I hope your PET/ CT shows a brilliant response. It is possible to achieve cure with chemo but I have no data about the length of remissions following your treatment combination although you’ve said 20% cure is possible.
SC transplant following successful treatment and remission is the ‘fail safe’ option because of the probability of relapse and the almost impossible task of achieving a second remission. It’s important to have that transplant when you are feeling really well and in remission to have the best possible chance of success and cure. Transplant when your disease is relapsing, even in the very early stages, does not have such a high success rate. The SC transplant process is not difficult but the recovery is not an easy one and there are often lots of bumps in the road. Having had a SC transplant last year I would opt for that again, over the small chance my Dr gave me for a long term survival with conventional treatment. I am still receiving ’mini transplants’ at the moment to try to consolidate my remission
A few people have mentioned CAR-T but the evidence is showing that the remissions are not enduring for many years and SCT is still the most curative option
I wish you the very best luck whatever you decide, please keep us posted
My husband didn't have Richter's, but he did have 100% disease infiltration in his bone marrow. He also had CNS lymphoma. He did an autologous stem cell transplant and has been in remission for almost 2 years now. He had a rough time due to the lymphoma, but the actual transplant was the easiest part of his treatment, though auto carries fewer risks than an allo transplant.
If you are feeling well, I would recommend doing the transplant sooner than later, because the recovery is easier when you start in better health. Waiting until you feel worse could lead to more complications or disqualify you completely. The choice is ultimately yours and you have started off appropriately by looking for more information. I think it's at least worth trying to achieve remission if given the opportunity, but it's also understandable if you don't want to undergo such rigorous treatment.
Thanks for posting. I'm glad you are doing well and sorry you have a difficult decision before you. Having a perfect donor match is certainly helpful. Thinking of you.
Louie, I hope your current treatment regime (V+P+O) proves to be effective. That would be wonderful. Other options I guess will be influenced by your age and general fitness, but if you are young (under 80 my consultant would say ....I've just turned 80!), and relatively fit, the SC route would seem to offer the best long term outcome.
Very difficult particularly if you are feeing well. When I've been faced with this type of decision, I've asked my consultant(s), whom I trust implicitly, what would you do? It's not definitive but each time they has confirmed what I think I was already thinking.
In these circumstances the French expression 'bon courage' seems much more apt than our 'good luck'.
Roger, thanks for your input. I’m 2 1/2 yr younger than you, in good shape which is probably why my SC doc is taking me on. I’ll be her oldest patient. I’ve pretty much made the decision if my liver biopsy comes back ok, I’m going to take the opportunity given to me, a bird in the hand, as the expression goes. If I wait and have a serious downturn, the opportunity may not be an option anymore. I always say “good luck” to the doctors.
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