I am on the Bruin trial and was randomized to Arm B which is Idelalisib and Rituximab ( 6 months of infusions ). My bloodwork so far has shown slight improvement since the start in January of this year. Now at my last blood work and appointment the doctor has noticed some lymph nodes increasing in size and my LDH has risen sharply, it's always been on the high side but this one is the highest so far. Also my neutriphils had dropped to 0.06, she now has me on injections to help boost that. She also said the words Richters Transformation, which floored me. I am going for a CT scan which was already scheduled due to being on the trial but she also is now adding a PET scan. Has anyone else been thru this or has anyone have any advice about the possibility of Richters.
BTW, I had just come off of 5 years on Ibrutinib.
Thanks, Jack
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rcusher
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Stopping a BTK can result in a "pseudo-Richter's" or a disease flare-up. I had something like a pseudo Richter's after stopping a trial drug. It took mmm less than 2 months? to pop up, and resolved within a month.
There's some promising data coming out for Venclexta working on RT, even *if* this turns out to be a transformation. So *if* this is RT, perhaps consider V instead of the traditional chemo route? I think the cell needs to be tested if it is clonal evolution or not, if they do finally diagnose RT.
I just wanted to mention "pseudo Richters" - perhaps they should arrange a biopsy, I think that's the best way to confirm / rule out. Hope that is all it is.
If you can, have any biopsy sent to a specialty center for a second opinion. I know of an instance where someone who had what appeared to be RT, and the regional oncology specialty center thought the biopsy showed RT, sent off to the Mayo Clinic in Rochester, MN for a second opinion, who thought it was not RT.
This is what happened to my husband when he was 1st diagnosed- It wasn't until we went to Dana-Farber and got a second opinion that got it right - please get a second opinion
I had a massive relapse and flare of my CLL soon after coming off Ibrutinib and my doctor needed to exclude Richter's. I had a raised LDH and had a CT, PET, needle biopsies of of the most accessible nodes and finally surgery for excision of a whole LN which was 7cm diameter.
The PET scan was reported as Richter's but thankfully my Dr was very aware of pseudo Richters and the whole node excision showed highly proliferative CLL but none of the large B NHL cells seen in Richter's.
After trying a Bispecific T cell engaging antibody and Acalabrutinib, neither of which worked, I started Venetoclax and Rituximab with significant and bulky disease. Despite that I had no tumour lysis during the ramp up and it all went smoothly.
I would say that your doctor is being very vigilant and proactive in excluding Richter's but hopefully all will be well as mine was.
they thought I had Richters too because my lymphnodes grew rapidly even with a low tumorburden but the cause was a virus EBV in my case neutrophils can be affected by pathogens as well. There are different kinds of Richters too which need different treatments. I know a patient whose Richters transformation developed from. CLL clone who is doing well on Venetoclax.
I went through this about 8 months ago when CT scan showed massive abdominal lymph nodes and LDH jumped to 250+. CLL Specialist said do PET scan as LDH not high enough and RT was rules out after PET. I did have to start V&O as soon as they could get it scheduled due to drop in RBC, platelets and etc. Blessings.
Again I am astounded with the level of knowledge and experience on this forum. Best of luck in finding out what is going on. It sounds like you are on top of it. I am saving this post to refer to just in case.
We are so fortunate that the founders of this particular group, have insisted on "science based" when stating things as "facts", and clearly listing when something is an "opinion". And will enforce this rule. I know I am not on some other CLL groups because of this. People were saying "you should do this, it works" without any medical references/background, and some of it was crazy stuff, not medically based At All and I had no idea where some of these people even got their idea in the first place. Versus "this works for me" as an opinion or personal experience, which is allowed, just, we have to make sure when we are saying our opinion/experience versus stating things as medical fact.
I had CLL for several years, and experienced Richter's Transformation to stage 4 non-Hodgkin's lymphoma. After six rounds of R-CHOP, I've been in remission since August of 2021. The chemo was awful, but the prednisone part of it alleviated many of the side-effects from each round. Richter's is "not a good diagnosis" according to my oncologist, but to give you hope, I'm 74, skiing and surfing again, and swimming laps and doing weight workouts at the YMCA. There is life after cancer.
I have heard and read about several misdiagnoses in these situations.
And as you may see from some of the comments above, the most reliable diagnosis will likely be after a full excision of the largest lymph node, and then a experienced CLL pathologist examining slices from that node.
An expert pathologist at a LLS conference I attended asserted that a needle biopsy of a node could miss the important parts/cells for the diagnosis, and a full excision was the only way to be certain.
So you may want to encourage your medical team to remove the node, It sounds scary, but usually is not a traumatic surgery.
UPDATE on my possible Richters. Well, I had a PET scan and a CT scan plus bloodwork just done in the last 3 days and the good news is no signs that it is a Richters transformation. My bloodwork has returned to my usual readings. The Doctor thinks that I may have been fighting something which sent all my numbers way out of whack.
I have been cleared to stay on the clinical trial. I am so glad that my doctor ' out of an abundance of caution ' had me run those test, it was a big stress relief when I found out the results.
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