This is the second time I have had CLL... I had it 9 years ago, and after a cocktail of infusion chemo with Rituxin and 2 other drugs....I went into remission until 4 months ago. I have been treated with Imbruvica daily and have taken it for 3 months ... As I understand.....when the results come in from my new Bone Marrow Aspiration come in, and the Imbruvica is working, I will continue to take it indefinitely as long as it is showing success. I am not sure how I feel about continuing a medication that causes some unpleasant side effects for an undetermined amount of time just because it works.... Do I, as a patient, have the option to request chemo via infusion...and take it for a course of treatment and see if the chemo was successful (as in my first round of chemo)....and determine I am in remission, and stop the course of chemo.... Does this make sense?
Imbruvica maintenance: This is the second time I... - CLL Support
Imbruvica maintenance
Sadly we don't have CLL more than once, it's unfortunately a case of having it forever 
. (That is, unless we are a suitable candidate for a bone marrow transplant, which hopefully replaces our bone marrow so that the donor lymphocyte line will eliminate our CLL.)
So, for most of us, when our CLL needs treatment, we have the choice of:
1) Typically chemo based treatment*, where we suffer the side effects for around 6 months (and hopefully little beyond then), enjoy a (hopefully lengthy) remission and repeat the treatment/remission process as long as we can find effective treatments
2) Newer maintenance treatments like Imbruvica/Ibrutinib, which while working very well for many CLL patients using them, are expensive and patients need to remain on them until researchers find a viable means of ceasing the therapy*.
So you are correct in saying that you will be taking Imbruvica indefinitely. Presently, the most likely way you will be required to stop taking the Imbruvica is if your CLL develops resistance to the drug, in which case you'll be switched to something like Idelalisib.
Most Imbruvica patients find that any side effects lessen over time. Those that have severe side effects are sometimes able to successfully go to a lower dose, but that should only be done in consultation with their specialist.
*There's a range of clinical trials under way trying to find an effective combinations of drugs incorporating the newer inhibitor drugs that will hopefully eliminate the need for chemotherapy drugs and perhaps provide a cure, or at least a long remission.
Neil
I feel for your plight Lyn. I've just start the Flare trial and was please to get the FCR arm of the trial and not the Ibrutinib. I've completed one round of treatment. Popping tablets forever seems wrong to me and costing $100,000 a year also does. Everyone on this site seems to moan about the side effects of Ibrutinib. One guy, the other week, described it as making you look good on the outside (no swollen neck nodes) and feel crap on the inside. The swollen nodes on my neck disappeared after 8 days on FRC.
I hope you get the treatment you want (can can tolerate, which is probably more the case)
Andy
Having been on ibrutinib for nearly two years I remain incredibly grateful to my consultant for prescribing it for me. While I had serious side effects early on it has brought my tlc right down and I am able to keep going with a busy schedule.
Taking a pill every day is obviously different to intensive chemo was all the support that goes with it, but it becomes a simple daily routine. it could change your life!
Good luck
Charlie Girl
I am due to start on Ibutinib soon. What are the side effects that you have been having? I was hoping to get Venetoclax, but it's not approved for non 17p deleted patients yet.
Initially I had some gastrointestinal side effects....but they subsided in month 2 of treatment... My main side effect is the extreme fatigue, which may be simply a side effect of the CLL alone... I feel like my energy is simply depleted....just so tired..... not like dig a ditch tired, or run a race tired.. It's like there is a hole in my body and the energy drains from it... I eat a very healthy diet...high protein, low complex carb..... I drink a lot of fresh brewed green tea.... I am just wondering if I can request to be on an infusion of alternate chemo for a round, then check the bone marrow. If I am in remission, .... pull me from the Imbruvica... The CLL is in my bones, but not in my blood this time... I just want to get my energy back. I walked two miles a day a year ago.... Once the CLL symptoms appeared, my energy went with it. I can hardly make it through a grocery shopping trip without having to sit down... It has worsened since I have been on the Imbruvica...
Keep everything in perspective. At the moment you have to stay on ibrutinib indefinitely. The second generation BTK ACP-196 is better in that it does not have the side effects of the first generation as it is more targeted. However, these drugs will eventually be replaced by drugs which will enable you to go off daily medicines while keeping CLL in remission. One such drug with promise already mentioned is Venetoclax. If this drug is successful, it will no doubt make it to a first line drug no matter what your genetic markers are. Immunotherapy probably holds the greatest promise. I can only be optimistic. Five years ago if you didn't respond to FCR, you were really in a bad place. Today, at least you can have a normal life taking BTKs while you wait for the better drugs which will come with time.
Hi lyn26041,
Just a couple of observations. Because you got 9 years of remission on FCR means a high probability you could be successfully re-challenged with FCR BUT the remission you get will likely be shorter. In consideration of reusing FCR it is important to consider whether you might have gained a more dangerous clone like an 11q- or 17p- that would not respond well to FCR.
Secondly, online forums will have more complaints posted than positive stories dealing with treatment drugs. I have been on Ibrutinib for over 5 years and lead a high quality life at 73. I had troubling side effects during the first 9 months of getting the drug but almost died from the side effects of FR and Rituxan monotherapy. The only side effects I have now are brittle fingernails and low platelets. The vast majority of Ibrutinib patients do very well. You could be fooled by judging your last TX experience with FCR into a false similar expectation.
Thirdly, being a relapsed patient means your returned CLL is smarter and more dangerous than before treatment. In some cases, relapsed patients can also be refractory to the TX regimen used before.
May your path be well chosen!
WWW
I just got my labwork back and my Lymphs have been getting progressively higher each month since March and are currently at 4.15. What does this mean? According to the graph that was given to me, that is high...
The normal Absolute Lymphocyte Count (ALC) range is around 0.85 - 4.1 depending on your pathology laboratory, so your ALC is barely out of the normal range. Some of us in W&W have counts above 300 and Ibrutinib can make the ALC go up 50% or more as the CLL cells are flushed out of the nodes, spleen, etc. Infections can also make it climb. You've been on Ibrutininb for four months, so you may see your ALC climb for a while yet before it drops back. Trends are more important than spot values and for a CLL patient, normal blood ranges are often a thing of the past, though with Ibrutinib, you'll get back there eventually - seem like you are very close already!
You can use this spreadsheet to plot your results if you want:
cllsupport.org.uk/cll-sll/s...
Neil
Thank you Neil!
I've also been told by my CLL specialist that Richter's syndrome is more prevalent with patients who've had chemo tx. I have 11q del and am unmutated and for now still on WW. My doc says he would recommend Imbruvica over chemo when my time comes due to my 11q and unmutated status. He also echoed what greenblue said...the ACP-196 drug in trials now is like Ibrutinib but way better! I'm hoping if I can make it 1-2 years further on WW the ACP-196 or ventoclax will be an option for me....or maybe a combination of the two. chemo scares me...Id much rather take a pill every day and hopefully get past the side affects.
Threews.....I see you've been on Imbruvica for 5 years, that is great news! are you 11q or 17p del...? mutated / unmutated...? I'm just curious, I see lots of CLL patience taking imbruvica for years but not sure if they're 11q or 17p.... I'm curious how long the Imbruvica is working for those patients ? is it a shorter time until resistance occurs ? good luck Lyn with your journey, It's a great thing that you do have options.
The idea that chemoimmunotherapy is a factor in Richter's is controversial... most studies don't indicate this, but one does...
From a Recent Richter's Review from MDA
The incidence of RT after FCR therapy is similar to that reported in several observational studies of RT in patients with CLL [5,7], and thereby supports the argument that FCR chemotherapy does not increase the risk of RT.
Similarly, two other first-line clinical trials (CALGB 9011, LRF CLL4) with purine analogues, alkylating agents, or a combination of the two reported no difference in the incidence of RT among the treatment arms [10,11].
In contrast, in a retrospective analysis of patients treated at Mayo Clinic, exposure to combined purine analogue and an alkylating agent was associated with risk of RT but not either agent alone [7].
tandfonline.com/doi/abs/10....
It is important to note that Richter's transformations were seen in secondline Imbruvica (ibrutinib) trials as well... so is it any treatment, or the fact the trial patients had previous chemoimmunotherapy treatment?
~chris
Hi Garrick66,
I am a discordant patient. Anyone unlucky enough to get CLL would like to have my markers but my CLL Bear dances to an aggressive beat and is expressed much more like an 11q- than the 13q- my FISH test revealed.
Even though I am CD38-, IGHV mutated at 6%, monoallelic 13q- and an undetermined ZAP-70 I needed TX in under 3 years with massive bulky nodes, bone marrow infiltrated at 91% and an ALC at 300+. It is suspected that I may have point mutations in critical chromosomes, likely in 11 but in any case I am not a template for generalizing about other patient responses. I live quite well with chronic ITP (low platelets in the mid 80s) and a very low level of CLL cells in the blood, only detectable by Flow Cytometry.
WWW
Of course, if you are in England, chances are you won't get front line Ibrutinib unless you are lucky in a trial.
I agree with ThreeWs...more "complaints" than positive comments about side effects, but I think one reason, is to boost spirits that we are not alone, and what we are going through is "normal", but also to see if others have found solutions, if the side effects have disappeared after time, etc. I am so grateful for every imbruvica pill I have swallowed over the last 2 + years. I am 17 p del, and I really don't think I would be alive without the imbruvica which was released only about 3 months before I needed it. That said, I believe I will be switching to Venetoclax in the not too distant future. the side effects are starting to mount. My oncologist has recommended the switch, but I have been hesitant...now, I think it may be time.
Good luck with the Imbruvica!
I also enjoy the positive comments and do not understand the abbreviations. I do know I have chronic lymphocytic leukemia, am taking Imbruvica for 1 1//2 years and do suffer from side effects which are manageable. It is encouraging to hear that new treatments are out there for as previously stated this medication is expensive and it is daunting to know you have to take it for the rest of your life. The good news is that you do have a life.
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