Been on a ibrutinib now for almost 4 1/2 years because of the CLL. Has done wonders to keep my blood scores in check. Almost normal. About 10 days ago I was diagnosed however with Hodgekin Lymphoma. Stage 3, with lymph node/tumours now on both sides of diaphragm. What is surprise! Stage 3. Doctor says may not be any connection with the CLL. Lymphoma was just waiting to get out and perhaps the ibrutinib was keeping it in. Also wonder If Richter’s Transformation phenomenon is at work here. One if the tumours is on the back of vetebra T9. But no pain or effect on spinal nerves as yet. Have already started ABVD chemo for sixteen weeks which is supposed to be pretty effective for the Lymphoma. Let’s see. Any parallels out there?
Now Hodgkin Lymphoma : Been on a ibrutinib now... - CLL Support
Hello.... I was inicciality diagnosed with a non hogdkin lymphoma in 2001 and a few years after it turned into CLL, instead!!! Now on Ibrutinib on 17 months
Which blood cancer you had may not have changed. Instead your diagnosis may have been firmed down to specifically CLL, because CLL IS one of the many Non-Hodgkin's Lymphomas. Sometimes it can be hard to specifically categorise a Non-Hodgkin's Lymphoma between being CLL and a similar Non-Hodgkin's Lymphoma.
Hodgkin's lymphoma has the best chance of cure of all the RIchter's transformations with ABVD chemotherapy, so you have an excellent chance of beating this.
Interestingly I just posted something about Ibrutinib treatment and Richter's which may be of interest to you.
CLLCanada had a Hodgkin's Richters transformation and also had a lesion on his spine for which he had radiotherapy as well as ABVD, he was cured of his HD.
Sending best wishes for an uneventful cure, please keep us updated.
Thanks for this Jackie! Certainly helps to get through it to hear something like this.
Minor correction - CLL Canada's Richter's transformation was to DLBCL and he received standard treatment for that. The good news is that he was cured, as was a good friend and a cousin.
I was just diagnosed with Hodgkins Lymphoma after being on Ibrutinib for about 2 years for CLL. I’m interested in what you have to say about treatment ABVD chemo?
My doctor is recommending chemo drugs:
2 cycles of brentuximab every 3 weeks
Followed by combo chem using Adriamycin + vinblastine+Dacarbazine
She said chemo treatment is pretty intense and will last 6 months.
I just got the results of my biopsy and doctor is making PET scan apptmt to find out staging of Hodgkins.
Can you help me understand what is going on? Appreciate your help very much.
ABVD is the standard and very successful treatment for Hodgkin's lymphoma. From what you say, ABVD + PET scan, your Dr is taking the right approach and you have a good chance of cure. If you're not in remission after probably 3 cycles then they will probably change your chemo to something even stronger then a transplant. Remember, that your CLL will almost certainly persist after the HD is cured and could even transform again.
Wishing you all the best, let us know how you are
Hi Leonardo, I got Lymphoma Stage 4 from CLL and chemo got me into remission so am sending all my good wishes to you. Out of interest is it T Cell Large Cell Lymphoma? Take Care, Viv
Hang in with the ibrutinib. Did work for me.
That is a bit scary, isn't it? Please keep us posted, and let us know what your docs say about how things may be related to your CLL, or to a Richter's transformation. Sometimes the terminology gets confusing~
Wishing you well too! There seems to be uncertainty on the medical field's part on why new conditions pop up, and whether they're transformations or de novo. Doesn't stage 3 just mean both sides of the diaphragm? That type of staging seems much less important than in solid tumors where there it means it's moved past itself.
I have a combo of small monoclonal cells and abnormal large cells, not yet gated with markers, with low PET uptake. I don't have a diagnoses yet, so I don't know if it will be similar to your situation. But I am reading research in the same areas that you are.
With all the new medications, it seems like the course of these is likely much better than anything in the literature, and very often very manageable.
My mom had CLL for 11 years back in the 80s and then it transformed into non-Hodgkin’s lymphoma she had the old kinds of chemo back then but she passed away after five years of treatment for the non-Hodgkin’s. that was a 1999. I have had CLL for 14 years now and I always wonder if I’m at a higher risk to transform
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