Got the news last Wednesday - The Imbruvica is not working as well as hoped. The conversation went into "what's next", and the answer was - "Well you should continue the Imbruvica for as long as you can, and by that time, there may be another drug". I asked about Venetoclax, and was told that it isn't approved yet. When I asked about trials, she said let's not try to rush into something else - let's just stay on track, and see what happens, and how fast, or slow, it happens. Been on Imbruvica for about 2 years+, and white cell count down (from 250k) to about
17-20k. Any one out there have some suggestions? I know the Dr is right, but I need some comforting advice. I don't have info as to my markers, because I didn't pay attention to it. Yes - I was in denial.
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jaysearch
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Thanks. Live in NY, with loads of hospitals, and specialists. My Hema/Onc is wonderful, and caring, and I trust her ----For now. Dr Rai was her teacher, so I'm comfortable at the moment. Thanks.
I would be using this time to be looking under every stone regardless of tempo. This place is a good one.
Find out your markers if they are listed somewhere and you missed it. Could make you a better candidate for some trials. Or.. it could save you time knowing you cannot go on others.
You could look into clinical trials yourself in the area you live. But even if they do not have anything announced yet maybe there is something in the pipeline. Put yourself on the radar of those principal investigators. Maybe they or people they know have something in mind for future months or years.
I have reached out to research nurses over the phone listed under protocols with success to get seen. Also, sent random emails to doctors about cll. Some are curt, some answer a month later, some never, but others send lengthy helpful suggestions.
Maybe suggest to doctor yeah lets wait and see but lets create plan A and B in the meantime for peace of mind.
I assume people with more experience will chime in but this is what I would do.
I actually have the FISH test someplace. I'm not very organized at the moment, but will find the paperwork. I know I will need it. You gave me something to think about, and thinking prevents panic. Thanks.
I am down to 75K WBC on imbruvica after a year and this is 'good'. Took awhile from high 500K . It is very slow. I'm not sure I understand why you'd be told it wasn't working? Did they say your WBC is going back up? or is it just not able to get you to 5K-10K WBC 'normal'? All your numbers are important, and I understand how disappointed the slow progress can be, even the stalls at high numbers on imbruvica are disappointing, but if you are holding steady and not getting worse, then I'd defer to the dr and stay on imbruvica
Jaysearch - I know how hard it is to want results and how disappointing holding steady at high WBC can be. Ask about and follow your other tumor markers and blood numbers. For myself I follow the Beta 2 and LDH, I used to worry about platelets and IgA until that got into normal range. If you follow all the other markers and blood numbers you may see results and improvements there even if the WBC doesn't move.
Good luck and I wish you peace from the anxiety this caused.
You are in the US. Get copies of your Flow Cytometry, FISH test results, mutational status if that test was done, and at least some of your labs - maybe every 3 months, to see trends. The HIPAA Law guarantees you the right to all of your records. They can't say no.
250K to 70K sounds encouraging to me. Have things stalled at that number or are there other issues? Time to come out of denial ( My favorite coping mechanism) long enough to get a better picture of what is going on.
There are patients getting Venetoclax through the company for free off label. That's a reasonable backup, as are some of the trials. I think Dried Seaweed has the right idea as far as discussing having ideas about backups in place, but I'd want a pretty concrete reason to change, especially if the issue is that the Ibrutinib is taking more time to finish the job than expected.
I agree with everything said but I would definitely want to know why they think it's not working when your count has come down so much to 17-20. It is possible to have resistance even though you appear to be responding so maybe they have done some BTK mutational analysis and found a resistant clone of cells.
Perhaps now is a good time for a second opinion and a very thorough workup including FISH, BTK mutation analysis and a CT scan so you know exactly what's happening and what your options are.
Wishing you all the very best, please let us know.
Not that it's "not working". Those were my words. My Dr used the words "plateau". She is concerned, and I'm just beginning to get calmer - thanks to all of the replies I got. Now that I think back my numbers had plateaud(?) a while ago. Each of these responses, brings me back toward sanity, as I am reminded of the past (also have "brain fog" with my treatments).
Sorry to hear of your dilemma. Sounds like you have received good advice here. I can’t add anything. Just wanted to wish you well and say keep us informed of your progress.
I see you are in the USA, but the comments from your doctor would suggest that he/she is not a CLL expert. You may want to get a second opinion from one of the top docs.
If you don't want to travel or have concerns about cost for a 2nd opinion, you can gather up all your records from your current doctor and use this program to get a video consult with one of the top CLL experts: cllsociety.org/cll-society-...
Hello again: I live on Long Island, and even though my Dr is not technically an "expert", she is wonderful and caring, and very much up to date. She was trained by Dr. Rai, whom I have also used as my second opinion. I was thinking of using Dr Barrientos as another 2nd/3rd opinion if it comes to that. They are close by. I want to stop panicking, and don't really want to rush into anything. I will check out all of your suggestions as soon as I can. Please feel free to make more suggestions as you come across addt'l info, etc. Thank you for caring about all of us.
She may have been trained by Dr. Rai, but when she stated that Venetoclax was not approved- and it was approved in late 2017 for 17p and for all patients in mid 2018, that tells me that she is not staying up to date on CLL treatments.
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The sequencing discussion by Dr. O'Brien has been an active discussion among the CLL expert doctors, so your doc is not attending the ASH and ASCO conferences or reading the papers being published about trials and recent developments.
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I know that Dr. Rai is current on these subjects since I attended a Lymphoma & Myeloma conference in NYC on Oct 19 where Dr. Rai was a key speaker and he introduced Prof. Hillmen from the UK who did an excellent presentation about sequencing of the new targeted therapies.
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Keep your doctor, if you like, but please see a CLL expert to discuss treatments, and let your current doctor follow the advice of a more informed doctor.
If in Long Island maybe check this event out in New York. Someone else posted it earlier but just in case you missed it: support.lymphoma.org/site/M...
Featuring:
Anthony Mato, MD, MSCE
Hematologic Oncologist
Director, CLL Program
Memorial Sloan Kettering Cancer Center
About the Program:
Ask the Doctor is a national series of two-hour, topic-specific community based-programs that provide an update on lymphoma treatment by a medical doctor with an extensive question and answer session. Learn more and register here.
Ibrutinib stopped working for me back in 2015. I managed to get through the next year with prednisilone for part of it. My lymph nodes and spleen enlarged in 2017 and my BMB showed CLL had taken over and my white cell count increased dramatically. I then had 6 doses of Bendamustine and Rituximab as I was very ill and needed treatment quickly. This held me for 8 months until 2018 when my white cell count increased by 7X in 3 months. I am now taking Venetoclax and after 3 months my blood results are normal. I am on 200mg. I am a little fatigued but as I have been diagnosed with this for 18years feel very lucky that I have made it this far with numerous treatments over the years and am hoping to go into remission. I hope things work out for you and when you need more treatment Venetoclax will be available for you. I live in Australia. Good luck.
Hi: Thank you for helping me stay grounded. I have started to feel some nodes swelling, but it's not uncomfortable (had worse when I started this journey). Thank you
My lymph glands went down dramatically when I started on Ibrutinib 8 months ago, but then 4 months ago they came back up. Initially they thought I was one of the small percentage that had become resistant, but also an infection was discussed, and luckily they then went back down again after a course of Azitromyacin. My bloods are also very slowly going down ( the ones that are supposed to ) so don’t give up yet ! And I still have Venetoclax as back stop !
Thanks for the reply. I got results of the Rheumatology Dr. I don't have Rheumatoid Arthritis, it's just ordinary Arthritis. So I can take anti-inflamatory pills. Unfortunately, he also said I probably have "SJogrens" (dry eyes, dry mouth, dry skin) etc. So here I still am, almost as confused as ever. I will persevere, and see what happens next. At least most of the panic is gone. Thanks for sharing - It was helpful.
Hi I don't know if you got my reply. Dr said to take the anti-inflamatory meds, but not too much. So I will be taking only "as needed", but alternating between the various pills, so as not to do too much damage. Any suggestions welcome.
I'm not sure why you have been told your drop from 500k to 17-20k means the Ibrutinib is not working. It took me more than a year to get to 20k on Zanuibrutinib (from about 110k). The haematologist thought a slow clearing of the blood was a good sign (which I have read elsewhere). It has taken me another eighteen months to get to slightly above normal (and it has bumped around on the way down). Unless a CT scan shows your nodes are enlarging, I'm not sure I'd worry too much.
Venetoclax is approved in the US as a 2nd treatment. You really need a specialist in your court. I’d highly suggest seeing one before making any changes to your current Ibrutinib routine.
Thanks for the info. I will check that as soon as I digest everything else. Stopped panicking and now trying to digest the mentions of Sjogrens. But at least I don't have Rheumatoid Arthritis. Can hardly wait for what's next.
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CLL W+W related(?) back/ leg pain
Back from the hematologist, counts slowly rising.
Chest and right midel back pain
Some answers back from doctor. 
Hi.good to be back 
