I have been a long time reader of this forum and it has been extremely helpful. My mother (73 yrs old) was diagnosed with CLL about 8 years ago. She went through several treatments: Chlorambucil for 3 yrs, then Bendamustine/Rituximab (6 cycles) with remission for 1.5 yrs. Afterwards, her CLL transformed to B-PLL (pro-lymphocytic transformation) with 17p deletion so she was recommended to start on Ibrutinib (Imbruvica) from late 2019. Her blood count normalized within a few months on Ibrutinib (all within normal range) and she has been doing well until two months ago when her lymphocyte counts started increasing quickly. Her latest WBC results are 60 with ~50 lymphocytes and ~7% prolymphocytes. She also has elevated neutrophils (~10) and elevated monocytes (~1.5). She went to a few oncologists and some are recommending to wait and see while others are recommending adding Rituximab to her treatment. Is that the right approach or should she switch to Venetoclax or Idelalisib/Duvelisib? Any insight you have is very helpful. Thank you
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Adel1
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Adel1, Welcome and thank you for your kind words in regard to the helpfulness of CLL Support members. I am so sorry your mother is dealing with this very complicated situation.You are a loving caregiver and I know you are also feeling the pain of all this complication.
Your mother's case with CLL going into B-PLL is not one most of us have encountered to be able to discuss what treatment would be best at what point. And, since each of us is different in a lot of ways, it is difficult to know just what your mother is dealing with.
I have posted a link to a case report below that may be of help to you in understanding and in possibly being able to talk with RNs and or Drs. on your mother case.
I hope it gives you some understanding--it is quite detailed and deep, but you may be able to get some help from someone who is in the medical staff to help you sort the details and understand if/how they may relate to your mother's situation at this point.
Please let us know how things go--we are here to support you and your mother and to learn from each other.
"The following is a case report of a rare case of B-PLL transformation in a patient with progressive CLL despite appropriate therapy with ibrutinib and highlight the treatment challenges that may be encountered."
Thank you, really appreciate your help! This paper is very helpful. I
t suggests that we need to consider TLS with Rituximab (which I didn't know could be a concern) and that chemotherapy may not be a good choice (one of the doctors suggested Chlorambucil again).
I have read recent journal articles that recommend both. I am not sure there are scientifically valid reasons for choosing one over the other, besides "don't wait" like some of these oncologists recommended. While CLL is generally indolent and "wait a few months" would be reasonable, a drastic sudden increase in leukemic cells PLUS potential transformation means "don't wait" to me,
Are the docs considered CLL specialists, how many CLL patients with del 17p have they treated? So I would say 1) adding a second agent ASAP or 2) changing to something else. My personal preference would be #2, because of the del17p. And with the quickly growing transformation, I wouldn't "wait and see", I would do something ASAP.
But I don't know any details of your mom's chart: other disease states especially any cardiac issues, history of infections, lifestyle (more, or less, exposed to others and their germs; a lot of exposure to potentially infectious people might be an indication to NOT use an antiCD20 because of the effect on antibodies ), diet. So I don't have a recommendation other than "switch to something else." And if you want to do #1, adding something in addition to the ibrutinib, do it ASAP don't wait months.
Thank you, this is very helpful and it agrees with my gut feeling. Her blood count increased to 50 (within ~1moth) then slowly to 60 (another month) but this could be because the cells are getting accumulated in the lymph nodes. She mostly stays at home, so I think an anti-CD20 may be an option (but need to consider TLS as in the reply above).
She does not have an access to CLL specialists unfortunately (she lives abroad). I could not find consultation services available for patients outside the US.
Also check for sub clinical infection of some sort. With neutrophils rising along with lymphocytes, I am wondering if she has a low grade infection of some sort. An increase in lymphocytes but not neutrophils would be more usual if it was simply the CLL growing. And ask for repeat labs, dehydration can cause a transient increase in everything, if she is dehydrated.
An anti CD 20 is unlikely to induce TLS. And if she decides to try venetoclax, which is one where TLS is possible, a CT scan of her nodes will determine her risk of that. The venetoclax package insert has a detailed protocol to follow, based on overall values.
Thank you. The elevated neutrophils is a good point. I wasn't sure if they increase due to the CLL relapse or if there is an underlying infection. Her temperature is normal (98.3) but she has some tooth pain. I think this may be a reason to delay the CD20 antibody treatment to not make the infection worse.
I have not spiked a temperature since I got this diagnosis, and I l know it is possible to have various types of infections without an increased temperature. I have had bacterial sinus, skin (bacterial and viral and fungal), and common cold type infections. No temperature, and I rarely hit even 98.6. I run more around 96-98. So pain, tenderness, "feeling off", and positive cultures are needed for me.
Hi Adeli. I also was diagnosed about 11 years ago .I am your mothers age and I was on wait and watch for some years with my first doctor then as the white cells accelerated he put me on chlorambucil for some weeks several times but each time I came off my white cells went up again.I got a second opinion and I asked the new doctor if I could have the gene deletion test which I had read about in this forum.my first Dr ignored this request several times.The new Dr ordered the test and I found I had the TP 53 gene deletion so I fired the first Dr and since Feb 2019 I have been with my new Dr.He started me in the april 2019 on veneteclax and within 5 weeks I was slowly put from 20 to 400 mg. After that in the may 2019 I was on a monthly rituximab infusion for 6 months and by November 2019 I was in deep remission.I stopped veneteclax. 23 months later -end of March 2021 and am still in deep remission.I think veneteclax is a brilliant drug-of course like all drugs there are side effects like nausea every morning when the drug has reach maximum. blood levels but apart from that I think it has less serious side effects than Ibrutinib. So good luck with mum and maybe she should be on veneteclax-cheers Roszika melbourne
Hi Roszika, Thank you! I appreciate you sharing your experience with Venetoclax and Rituximab. I think this is probably the treatment plan moving forward. And, thank you again for the good wishes!
Just a quick update in case it is helpful for others. After a lot of research it seemed that Venetoclax based therapy was the one that was recommended after Ibrutinib resistance.
So my mother stopped Ibrutinib and started Venetoclax. She has been on it for about three weeks now (ramp up dose). Her lymphocyte count decreased very quickly (from ~80 to ~9 in 2.5 weeks) and her other symptoms have improved (night sweats and light fever). She developed mild neutrophilia and mild anemia so the doctor recommended slowing the ramp up dose a bit to see if these will improve (fingers crossed 🤞). She has some other side effects (diarrhea) but her hypertension has improved (she reduced her hypertension medication after stopped Ibrutinib).
Thanks again everyone, your responses have been extremely helpful! I will plan to post back here with other updates.
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