Hi everyone. I am new here and have posted a couple of times but have not introduced myself. I am 62, male, diagnosed with CLL in 2011. No deletions and mutated IGVH, so it is a fairly benign form of CLL. My ALC was 8,000 at diagnosis and it has crept up slowly to 18,000 over 8 years. Recently I had a couple of short unexplained fevers, some minor night sweats and a bit of fatigue. My GP sent me to an oncologist who ordered a CT. They found innumerable enlarged lymph nodes (up 5.5 CM) all over my body. The oncologist has recommended treatment with FCR to reduce the nodes. He mentioned Ibrutinib (IB) in passing, and I believe he was looking at IB as a possible alternative to FCR in case of a later relapse. He mentioned cost of IB as a limiting factor, but my insurance will cover that.
Since then I have been reading about Ibrutinib, and I am wondering if this might be a better alternative than FCR. I don’t have any issues (17p deletion of unmutated IVGH) that would necessarily indicate Ibrutinib, and I am really just interested in the treatment that will give me the most durable remission with the least hassle and side-effects. Does anyone have any thoughts on Ibrutinib versus FCR?
I’d be grateful for your thoughts on the above.
Frog
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GrumpyFrog
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Welcome to the group that none of us wanted to join. But you are among new friends here.
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Depending on where you live (e.g.: USA or UK) the choices for first treatment are different.
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And the fact that you are FISH normal ( none of the 4 common deletions detected) actually puts you in a moderate risk group. (e.g.: 13q deletion is lower risk than none).
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To answer your questions about treatment, you should get a 2nd opinion from a CLL expert, but in the interim you may want to explore this pinned post: healthunlocked.com/cllsuppo...
The video from Dr. Lamanna and the links to Dr. Thompson and Dr. Davids give the best answers to your questions that I know of.
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Also, look for a box labeled "Related Posts" on this page (upper right column on computer screens, scroll way below on mobile devices) to find some of the many times your question was answered in the past.
I went through it but I feel like W&W is strange strategy. “So we don’t have any decent treatments out there so it’s better not to use our treatments because the treatment is worse than the disease, so we will wait for you to get really sick before we treat you.” Really? Then they write guidelines set in stone telling everyone what to do. Wasn’t there a law passed “Right to try.”
Hi Frog, I am in almost the same boat as you ; 62 male with 11q ATM unmutated with nodes less than 4 cm in 3 chains. I feel good with only slight anemia H at 12 right now. My problem is bad skin rashes and susceptibility to infection . I don’t like the idea of chemo esp since I don’t think it works with moderate to high risk. I am studying IB and other BTK inhibitors maybe a B-monoclonal combo with a BTK as as a choice with that PI3 as a back-up. This whole concept of W&W makes no sense to me either. Because I thought early detection was always better with “cancer”. I am not an oncologist or a PHD but we are living in a HOPEFUL time with novel treatments but also an extremely confusing time. I have to rely on one of these specialists too, but I don’t want a med that is a chemo which I think is a “shotgun approach” to the cells. And my next question is this: if chemo is so great why are folks still looking for better meds? If you figure some treatment out, please let me know the details and good luck. Best wishes -John
Welcome to the group. Ibrutinib is listed as the preferred choice in the latest NCCN CLL patient guide. It will be a life long treatment, and much more expensive. FCR has significantly more toxicities, but the procedure is limited to 6 months. It is essential to do a TP53 test before deciding on FCR. TP53 mutation is different from 17p deletion. TP53 mutation is determined by DNA sequencing.
FCR is usually recommended for 13q mutated under 65 years of age in USA. I wasn't sure what ur markers were. One part said no deletions then u listed 17p.
Always good to get second opinion.
I did great with FCR. I reached remission after 3 cycles 9 months ago. Removed my port after 6 months.
I had one last chance to try FCR cuz I was almost 64. Ibrutinib is a great drug too but costly and could have side effects. Everyone is different. I have heart disease in my family so I was concerned about A fib. Ibrutinib could be in my future. But all types of drugs and more hopefully to choose from in the future. Good luck! 💕
Awesome lecture!! Goes over the skin lesions and how you can get GAMMA GLOBULIN. I have the skin lesions. That is how I presented with disease. Nasty horrible skin lesions. Zoster! HSV1 and ended up in the ER twice with cellulitis . Cellulitis is dangerous and life threatening in this age of MRSA!!! We need to transcribe this lecture. My doctor knew all this but he was too busy on his FIRST visit with me. He wanted to go home to dinner!!!
This is the big question for mutated patients. If your mutated you have a 50% chance of getting a 12 or more year treatment free remission after only 6 mos of treatment, however you could also get late onset problems like neutropenia and I believe there is about a 10% chance of later developing another leukemia. ( AML or MDS ) When you do relapse from FCR it is likely that the CLL will come back more in a more aggressive type.
If you go with Ibrutinib you will have to take pills every day until they stop working or till you have side effect that cause you to quit or possiblely till a new drug comes along that is better. There are several side effect, but many are temporary and some can be live with and many people don't get them ( I would like to say most people don't get them, but I don't know the percentages. ) Some are serious like A fib but most problems can be resolved by stopping the drug. (This is not always the case with FCR ) Right now approximately 80% of the patients that started ibrutinib as a front line treatment 7 years ago are still in remission and there's no reason to think they won't continue to stay in remission for longer. Ibrutinib however is very expensive about 150,000 a year. If your on Medicare with a part D plan it's about a 10,000 copay a year. There are ways for most to get some help with this copay depending on income.
So you have to ask yourself "Do I feel lucky" best to get a second opinion from a CLL expert.
Thanks, John. I understand that the remissions with FCR for people like me (young, mutated, no 17p deletion) are often so deep and durable they may in fact produce a "functional cure". But with risks of side effects and a 6% or so chance of developing acute leukemia later if/when there is a recurrence. Versus Ibrutinib which may produce a less profound remission and has to be taken for life. Also with it's own side-effects.
Cost is also a factor. My insurance will cover everything but about $6,000 a year. But With FCR that is a one-off expense versus an recurrent annual expenditure.
I am gathering as much info as possible before deciding. Your input is really helpful!
I dont know if there is currently a right or wrong answer to your question, FCR v ibrutinib for mutated cll. You could talk to a number of cll specialists and get different answers.
I personally would choose ibrutinib in your shoes. Almost 100% of those who took ibrutinib as a front line treatment had not progressed at 6 years in a recent study, the only ones who progressed had 17p cll. Who knows how long ibrutinib will work for this group, maybe indefinitely.
The lure of a cure with limited time treatment of FCR is big, no doubt. I think in time they will be adding on drugs to ibrutinib to get the same type remissions without the big risk that comes with FCR.
I say its a long fight and choose the option that does the least harm now, ibrutinib. If you are one of the folsk who do great on FCR, the odds are you will do great on ibrutinib too with less risk of marrow damage.
It is certainly a debate over which reasonable minds can differ. The fact your FISH is normal would push me to ibrutinib as well. Its not clear what flavor cll you have. Ibrutinib has proven successful at treating all types of cll, FCR is better at some than others.
Thanks, Jeff. Your input is very helpful! It is not an easy decision, so am collecting as much info as possible. It would appear that Ibrutinib is pretty clearly better except in rare cases of no 17p and mutated, which is my case. For people like me, the choice is less clear cut.
It’s a tough call Grumpy, but I wouldn’t consider your situation rare. About half of all of us Cll folks have mutated IGHV. For folks under 65 with mutated IGHV there are specialists who would go for FCR, others would still choose ibrutinib. Mutated and under 65 is the main go group for FCR.
There are more tests that can be done to further narrow the choice. Sequencing tests look for other mutations like Notch, tp 53 and ATM. If I were mutated and had one of those mutations I might favor ibrutinib over FCR.
Here are a couple of articles from Dr Sharman that are very good on the subject. Keep in mind these articles were written before even more favorable data on ibrutinib emerged. I wish Dr Sharman would continue his blog, his articles are the best.
Well that would make my decision very easy G-frog. I would ask Sharman what treatment he would do if he were me, and choose what he says without a second thought. I would absolutely go see him. When you do, tell him to start back on his blog, he knows a lot and has a nice way of communicating some super technical stuff in a way average joes like me can kind of understand.
Agree with Jeff. Husband has 13q- and is mutated, now 44 and is opting for the option with the least potential for long term harm. Ibrutinib is a great choice since you have it available in the front line. We are in a clinical trial combining Ibrutinib, Obinutuzumab and Venetoclax for 20 months to see if therapies can be combined and then stopped to see how long the progression free break lasts.
They may not come right out and say it, but the strong hope is that the combo your husband is on outperforms FCR and for some is a functional cure, just as FCR has proven to be for some.
But it’s still the known vs the unknown. We know the type of durable remissions FCR gets, particularly for mutated Cll.
There is some encouraging data on the new drugs that can be extrapolated. The most important predictor for how durable FCR remissions are is if you get mrd negative and how fast do you get there, the faster the better. So they are seeing a good percentage of folks on ibrutinib/venetoclax combos reach mrd negative status very fast. The theory, yet to be proved, is that this predicts that ibrutinib/venetoclax remissions will be as or more durable than FCR remissions. That’s the unknown.
It’s nice for people to have such really good options.
Yes! And the other hope is that you can reuse these drugs as your need them in the future as well because you are off them before your disease can develop resistance to them and they don’t carry the perm toxicity of chemo. We shall see! We are super grateful guinea pigs!
Ibrutinib usually works best with frontline treatment. People who use it as there second or third treatment don't do as good as they do with first-line treatment. So maybe try ibrutinib first seeing as thou first line treatment seems to be the best with Ibrutinib.
So basically if your going to try Ibrutinib you should probably try it first over anything else because it works best as a front-line treatment, then if Ibrutinib fails then maybe move on to FCR.
Many thanks to all of you who took time to respond to my question. I'm sorry for the delay in responding, but have been busy at work and absolutely exhausted when I return home. Fatigue seems to also be part of my "relationship" with CLL.
I am in Switzerland and I can choose which therapy I want. For me the big issue is FCR which lasts 6 months and which is highly effective for people with my profile but has certain risks, or Ibrutinib, which may be less risky but must be taken for life. It seems that Ibrutinib is now preferred first-line treatment except for a small percentage of people (like me) who are young (nice to described that way) and IGHV mutated. For people in this group apparently FCR produces very long remissions, and may even produce a functional "cure" in some patients.
you should discuss w the oncologist what treatment is best for you.I had a 2nd opinion and made the choice I felt comfortable with. It is your body that will talk to you.
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