My wife was diagnosed with CLL five years ago , she’s 13q delation mutated and started Imbruvica in January with excellent results since her numbers are almost back to normal.
Her oncologist is in France and since diagnosis, she had two complete scans the first year ,two FISH test in all and of course blood test every 6 month.
My question is that her doctor never mentioned bone marrow testing.
Does it sound right or should I ask him why he doesn’t need the kind of information found in the bone marrow?
Thanks and good health to all
Serge
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Sergi
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Yes it does sound right Sergi and many people no longer have a BMB on completion of treatment unless they’re on clinical trials where it’s part of the measurement protocol. The blood tests they’ve done in addition to the FISH tests sound to be highly accurate flow cytometry tests which are now very sophisticated in measuring levels in the blood. It’s clear your wife’s results have been very good.
You could push for it but it’s not usually absolutely necessary in all cases. Great to hear she’s doing so well.
I’m having a BMB in Nov as part of my trial requirement Sergi otherwise I’d have been happy to be guided by the flow results. They’re not a procedure anyone would readily queue up for! 😳
I believe in BMB's. Our disease is a bone marrow disorder. Had my first to dx. Had my second 11 years later to determine treatment and then after 3 cycles of FCR to determine remission. All 3 uneventful and insurance paid. I am 13 w mutated as well ! 💕
While on Ibrutinib, it is not necessary. Before to determine treatment time could be helpful. If Ibrutinib stops working then before next choice she could have one to see what is going on in marrow. But not necessary. More important for chemo. 💕
But that’s a treatment designed to get to MRD negativity. Daily dosing with Imbruvica is not. The purpose of Imbruvica is to keep the fire at a smolder. FCR (and combination treatment trials) are attempts to put it out.
I used it to determine if I needed treatment. Wanted to know how crowded my marrow was. Good point about Ibrutinib. I was referring more to she could of had it before they started treatment to be sure it was time.
So long as there is no plan to stop taking ibrutinib or to add another drug, I see no reason a doctor would been a bone marrow biopsy (BMB). I agree with Dawn, it would be typically done in a clinical trial.
What we might see going forward though, is doctors adding drugs like venetoclax to ibrutinib for the purpose of achieving a remission and getting off all cll meds.
In those cases I could see BMBs being routine practice to see if someone is mrd undetectable in the marrow (free of detectable cll cells).
That would be important information a doctor might use in deciding whether its safe to stop therapy. I cant see going through the pain, expense and risk (however slight) of a BMB just during the normal course of ibrutinib, absent unusual circumstances or unless the doctor has reason to think a full remission has been reached (which is rare on ibrutinib alone) and the doctor is considering suspending therapy if there is no evidence of cll in the marrow.
Please let us know what the doctor says. It would seem reasonable to me that if your wife achieves an apparent remission with the addition of venetoclax that her doctor might wish to confirm the depth of the remission with a BMB before stopping therapy.
To my understanding, "remission" can have different meanings with cll. Outside of a clinical trial, being in remission might just mean someone has normal labs and no palpable nodes.
Inside a clinical trial the bar for remission might be higher, that is, being mrd undetectable in the blood and marrow. I think my doctor will be adding venetoclax to my ibrutinib later and I would probably want a BMB before stopping both drugs just to be safe.
I had BMB to confirm CLL other than flow cytometry, which I also had. The BMB gives indicator of bone marrow CLL involvement. After my chemo treatment was done, I did not have another BMB as I was not in a trial. A second BMB would have done nothing for me as it is not a treatment for CLL, just an indicator of depth of remission. Blood testing would be much easier way of tracking in recurrence of CLL.
I think this is true for chemo, which is predetermined at the start to be a time limited therapy. Knowing the depth of remission after FCR or BR doesn't really inform treatment decisions going forward, the decision to stop after however many cycles was made going in.
It is trickier with the novel agents where no standard protocol has been established on when, if ever, to stop taking oral drugs. The answer to that question is being found out inside and outside of clinical trials across the world. People who get into remissions on ibrutinib, venetoclax or some combination are having to decide whether to stop taking oral drugs and see how they do or continue on them. There is no guarantee if one relapses while off ibrutinib whether they can jump back on it.
I think in that setting, a BMB does more than just tell you depth of remission, it may inform your treatment choice going forward. If I was in remission on ibrutinib, but not mrd negative in my marrow, I might not want to risk getting off it. I think those who are mrd negative in the marrow on novel agents might better consider getting off all meds more than those who have detectable cll in their marrow.
So I wouldn't want to go through the pain, expense and rsik of a bmb after chemo, when its not really informing nay decision I have to make. I am getting off the chemo no matter the result of the BMB. But wiht novel agents it might be different.
And in thinking about it, if I had taken three of six cycles of FCR and was in remission and a doctor was thinking of sparing me the risk of three more cycles, I could see a BMB informing that decision as well.
Where as it is true that I could have requested a BMB to determine if I was status MRD after first treatment. I my blood tests were back to normal before second chemo treatment and continued chemo would stand good chance of lowering my RBC, hemoglobin and platelets to unsafe levels. I however continued all 6 rounds of chemo. Except in trials to obtain test results of dropping ibrutinib, most people are not dropping ibrutinib, it is considered a lifetime drug. Most of those who drop ibrutinib do so due to side affects. If Sergi's wife's doctor is considering adding venetoclax then it is a safe bet her blood tests are not showing MRD status and blood tests are confirming this.
Big Dee, I think you are right that ibrutinib is considered a lifetime drug in one sense. But I think the goal of most cll doctors is that it not be. We are already seeing some problems crop up with long term use.
My doctor wants to add venetoclax for me not because ibrutinib is not working, but to get me in a remission and off all therapy. Might I be better off not rocking the boat and just staying on ibrutinib that is working fine? That's the question they are trying to answer. I assume Sergi's wife's doctor is going through the same analysis.
It's all a matter of balancing risks. There are risks in adding venetoclax, there are risks in not doing so. There are risks in deciding to get off all therapy if we get in remission. There are risks in taking drugs long term which drugs could have toxicities we do not know about yet.
I was just making the point that I agree with your post that getting a BMB just to know the depth of your remission is not worth it. But sometimes a BMB can inform a treatment decision. If I do add venetoclax, as my doctor says he wants to do eventually, and I do reach a remission, I think my doctor will want me to get a BMB before deciding to stop all oral meds.
I think it more likely than not that ibrutinib will not be a lifetime drug for most. I think it better to say that those starting on it now will be taking it indefinitely while doctors figure out what best drugs to add so therapy can be stopped.
I hope you are doing well Big Dee, its an interesting discussion.
It is for me too Sergi. Personally, I do best just taking it a day at a time and not stressing too much about whats next.
I am so very grateful for ibrutinib. I never knew what having cancer would be like. I am able to control mine with an oral drug that allows me to lead a normal life right now, and that's amazing for me.
But it does help my state of mind to have hope for the future that not only will I get off of cll meds, but that I will be cured. If not, so be it, I have achieved some measure of peace with my diagnosis. Its not like anyone ever beats father time in the long run, he is undefeated. It certainly helps to know there is hope we can be cured or in a long remission going forward.
Good luck to you and your wife, I look forward to sharing our experiences in the future.
I really understand your wife's feelings about getting of the medicines at some point and feeling a sense of relief. My CLL was so aggressive that I had to make a quick choice between B+R and ibrutinib. The "safer" route would have been ibrutinib because I am un-mutated. I decided to roll the dice and do B+R because I did not want to content with having to take a pill with possible serious side effects for the rest of my life where the only way to stop side effects was to quite ibrutinib. I have been very fortunate to have completed all six rounds of chemo with only diminished mild side effects. I do not think there is any right way or wrong way to live with CLL, we all just do our best. Blessings.
I have had 2 BMBs (April 1997 and December 2018) and will have another one the 30th of this month. I am a patient at MD Anderson in Houston, and my oncologist (Dr. Philip Thompson) feels the BMB is extremely needful in looking at the big picture. I am on Venetoclax (400 mg daily) and finished a 6 month regimen of monthly Rituxin infusions in July. I am not in a trial of any kind...just wanted to share my oncologist's opinion.
Thanks Lisa for the input. Thompson is my doctor as well now that Keating is not seeing patients. I like Thompson, he takes a lot of time with me when I see him to answer my questions and he is obviously very knowledgeable.
I find doctors at major cancer centers like md anderson are much more likely to do tests that are not routine with other cll doctors such as FISH, repeat FISH testing, BMBs , sequencing tests for other mutations and IGHV testing. I think they view more information as better than less. Some other areas in and out of the US do not do as much testing for cost and other considerations, which I totally get.
Its always encouraging to hear from folks who have been dealing with cll as long as you have. I am glad you are doing so well on venetoclax.
When I went back to MDA in December 2018, I had hoped to see Dr. Keating, but he was not available. Yes, Dr. Thompson is very thorough, knowledgeable, and I really like him. He does take plenty of time to interact with the patients, so I have learned he is always running behind :-); however, I appreciate his attention and am not bothered that he gives the same to others!
I was diagnosed in April 1997 but had enlarged lymph glands as far back as 1993. The initial thought was that I had non-hodgkins lymphoma, but the trip to MDA refined the diagnosis to CLL. Funny thing is that I no longer have enlarged nodes, but my spleen was 22 cm before starting treatment. I am 13q deleted and had hoped I would be one of those who didn't need treatment, but after 2 hospitalizations last year plus the bulky spleen, my local oncologist decided it was time. I started on Ibrutinib, but the side effects were worrisome to me...and my oncologist! She took me off the Ibrutinib, so I decided to make another trip to MDA. Dr. Thompson recommended Venetoclax and Rituxin which have been much kinder to my body!
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