Question about Ibrutinib/Imbruvica and Fatigue

[turkey2]

I’ve been taking ibrutinib for 13 months; started just 3 months after my diagnosis due to 17(p) deletion. No idea how long I’d had it, no symptoms, enlarged lymph nodes showed up in a physical prior to THP surgery. I’ve had a few side effects, some of which were temporary, but the one that is the most limiting is the fatigue.

Fortunately I had just retired from teaching at age 62, thinking I would sub for a few years (change of plans on that). I’d been pretty active most my life, at times working two or three jobs, sponsoring lots of extracurriculars activities a school - while being a single mom. Gave up working summers at age 54. Anyway, I realize that part of my slowing down may be due to age & other external factors (like a significant leg-length discrepancy as a result of the hip replacement). I thought maybe the fatigue was due to the CLL, but my son reminded me that it didn’t start until after I’d been taking the meds for a month or so.

I’ve learned to pace myself, like when I have to run to town to do errands, I make a list of what I need to do in order of priority, in case I run out of steam. I try to schedule activities or appointments on an every-other day basis, so I have a day to “recover”. When at home I take frequent breaks, sometime nap in the afternoon. My oncologist says “get more exercise”; some days I feel really good - other days, not so much.

Has it ever let up for anyone?

[MrMidnight]

Hello. I'm on a new-generation form of Ibrutinib (BGB-3111) and I had a reasonable first month on it, then I was pole-axed by fatigue for the next eight months. On a good day I could walk next door; on a bad day I couldn't get past the front door. I needed rests every three hours for one-to-two hours, during which time I didn't sleep but couldn't even read or watch TV. After eight months, I started picking up a bit, and today I managed to drive myself down to the shopping centre and do some shopping. The haematologist has said he didn't think it was the drug causing my fatigue and that as my blood counts improved I'd start to feel better. But fatigue is a known side-effect of Ibrutinib, although most doctors say it lifts after a few months. I'm 63, 17p deleted, and have always been a walker, hiker and biker, so this long period of enforced rest has been very taxing for me. Best wishes. I hope your fatigue lifts soon.

[Mcpill]

I have 17 p and have been on Imbruvica for 2 years. I will be 68 in June and have continued working throughout this period. I have good health insurance and the drug is so costly, that I really feel I have no choice. I was doing fine until about 4 months ago when the fatigue really ramped up. I am home today, because I really was just too tired to think of making the 1.5 hour commute. Actually was too tired to get my makeup on :). My blood tests are fine. I have an appointment on Monday with my specialist who suggestedat my last visit that it might be time to think about switching to Venetoclax. Reading all I can, but I am hoping that if I do, the fatigue will be better. I feel so lucky to have made it two years on Imbruvica feeling fine most of the time. If I start Venetoclax it will be more important than ever to keep my job and insurance. Like others, I have always been quite active until now. Thanks for sharing. It is always difficult to determine which side effects are due to age and which to meds. Helps to know others experiences.

[Hoffy in reply to Mcpill]

I am 53 years old and also 17 P deleted. I started imbruvica almost 3 months ago. I definitely get fatigued from it. That is my worst side effects so far. I take it before I go to bed at night and that seems to help a bit. The less interaction with food the lower effective dose. So I try not to eat after dinner until I take it.

I try to exercise a bit every day and that seems to help.

I saw a video on patient power of a woman who had a lot of fatigue and switch to ACP 196 and was much better. This is a second-generation BTK inhibitor

My doctor says people have much less side effects to Venetoclax.

[turkey2 in reply to Mcpill]

Just curious since I've not researched it: is Venetoclax even more expensive than Imbruvica? I will be going on Medicare in a year (assuming it's still in existence) and will be in serious financial trouble. When I mentioned that to the CLL specialist, she remarked "so will a lot of people".

[Cllcanada Top Poster CURE Hero in reply to turkey2]

Venclexta will cost about $109,500 for a one-year supply.

fiercebiotech.com/biotech/r...

About the same as Imbruvica (ibrutinib), but who knows the actual price that insurance companies pay...

Medicare doesn't negotiate costs... with drug companies however.

~chris

[Mcpill in reply to turkey2]

Everything is so up in the air right now! If I understand it correctly, Venetoclax was not even covered by Medicare until recently. The plans are all very confusing, and the prices changed depend on where you fall during the year...initial phase, donut hole, and catastrophic, as well of course as the plan you are on. I am hoping that if I go on it, it will keep me well enough to work because otherwise it will be unaffordable.

[narl in reply to turkey2]

Johnson and Johnson will give it to you if you meet income guidelines, 95,700 a year for 2 people. They have a foundation for it, just go to their website.

[Mcpill]

Thanks for your input. I was doing very well until recently, so it was a bit of a surprise. I too have heard that Ventoclax has fewer side effects.

[onlinemichl]

Hello, I am male from Germany, 49 years, 17p deleted, since 12/2010 watch and wait, in 2013 FCR therapy, 2015 relapsed. For 14 months I am taking Imbruvica. I suffer a lot from fatigue. I am looking for good information about that fatigue syndrom. In the beginning of this year I started to reduce from a 40hour working week to only 22 hours.

In germany one can try to get something like "disabled pension", if it is accepted by the nationaly insurance. But it is hard to get it, as fatigue does not to seem to be a common diagnosis in health system. Even in the package leaflet for imbruvica fatigue is not mentioned (at least in the german version). So doctors here do not really believe in that.

But I have read now from a lot of people who complain about that issue with fatigue. I feel much to young for retire, but unfortunetly I do not feel fine, too. Exercising was not very helpful for me, because I got so many infections and always had to stop excersing. After each infection I need some weeks to be fit enough.

I was disussing with my oncologist about changing to Venetoclax, too. But she preferred to stay with Imbruvica as long as it does its job (and it does it well, except for that and some other sideeffect/s).

So what do think? Is there any official statement about fatigue and would it be useful to change over to venetoclax? Or would I throw away some future option, too early?

Regards, Michael

[narl in reply to onlinemichl]

I have only been on it one month, but it makes me tired. I was already tired from CLL and Dr, said I would feel better. I do not.

[turkey2]

Michael - in the U.S., anyway - I think the problem is marketing. The term fatigue is simply not adequate nor accurate to describe what it is like, and is commonly used to mean just "tired". Just like the term depression is not adequate to describe the condition of clinical depression. If I knew how to bring about change (or had any kind of medical background), I would certainly promote the use of a different term to describe this condition.

It has crossed my mind, but I have not yet discussed switching from Imbruvica to Venetoclax with my either my oncologist or specialist. It did occur to me it may need to be kept as an option in case imbruvica failed. Better tired than dead, I guess. But you are young & still need to work, I don't know what I would do in your case.

CLL does qualified as a disability in the US, but I haven't studied the guidelines in depth, as it requires hiring a lawyer to try to qualify. From the limited reading I have done, I don't think my numbers are bad enough at this time. I may have to give it a try once I have to give up my private health insurance next year and go on Medicare (if it still exists) as my copays for imbruvica will skyrocket. Best of luck.

[onlinemichl]

Thanks for your answer. It sounds as if it is like what I was thinking. So, I decide to ignore every tiredness, but continue with exercising. We will see, in a few months...

Have a nice day. Michael