I am very anxious to speak with someone who can validate my experiences on ibrutinib. People with chronic fatigue immune deficiency syndrome can be more susceptible to CLL or other forms of lymphoma. I am post COVID to boot but I am having severe muscle fatigue and walking is very difficult. My oncologist keeps saying that 90% of people can tolerate this drug and I am not a complainer but I seriously wonder if I can tolerate a full dose. I am on 2/3 strength now and he keeps wanting to put me up to a full strength dose.. I think he must be assessing me as a whimp.
I would love to get help assessing this from the point of view of someone who knows what it's like to add a toxic drug to a person living with CIFIDS/ME.
Written by
denmanjemima
To view profiles and participate in discussions please or .
I see you are in Canada, so I'm not certain if you have access to the other BTK inhibitors like Acalabrutinib / Calquence or Zanabrutinib / Brukinsa. See en.wikipedia.org/wiki/Bruto... The 2nd generation BTKs have a narrower target profile and some patients have less side effects.
-
I had problems with Ibrutinib / Imbruvica in 2016 and my doctor switched me to Venetoclax / Venclexta with fantastic results. You may want to ask about changing to a different drug.
If it's possible, push back to get your med changed. Just because "X percent" of people don't have problems with this med doesn't mean you won't. You are not a wimp. Some bodies simply can't tolerate it. I don't have your other disease state, and didn't have your specific symptoms on this med, mine were different, but I was miserable for a solid 8 months. I mean miserable. I was in the bathroom every hour or so. Being upright or walking sent me there, eating or drinking sent me there, I was Just Always There.
Quality of Life is very important with chronic diseases. I wished I had pushed back by Month 2 to get off of it. Try using these words, or something similar. "My Quality of Life is awful. I can't function anywhere near normal. I can barely walk". Not being able to walk, and being bedridden, are severe impacts!
Thanks so much. There are only heavier chemo options and I have serious misgivings about being able to tolerate the side effects that others report in my cancer support group. I was told that is my only option. If I stop I was told that I would die within the year and not easily. It has frightened me to endure. I wonder if the drug at least brought your lymphocytes etc to normal levels. How are you today?
I have no experience with CIFIDS/ME. I had no comorbidities or health issues and I could not tolerate ibrutinib. I am not sure if your doc is accurate about 90% of people are fine with it - but let's assume the doc is correct. That means 10 out of 100 people can't tolerate it and not sure why we should be ignored it there are alternatives.
I could not walk. I am in the US and was able to switch to acalabrutinib. All my joint and muscle pain went away - I can't remember how long it took but no more than a few weeks.
Can you ask your doc specifically about acalabrutinib?
Looks like it is approved in Canada. It is not traditional chemo, it is a btk inhibitor similar to ibrutinib and most people have fewer side effects. Nothing is perfect and I think there are at least two people on this site that have pain on acalabrutibnib.
"MISSISSAUGA, ON, Jan. 8, 2020 /CNW/ - AstraZeneca Canada today announced that Health Canada has approved Calquence® (acalabrutinib), an oral Bruton's tyrosine kinase (BTK) inhibitor, for the treatment of adult patients with chronic lymphocytic leukemia (CLL), as monotherapy or in combination with obinutuzumab in the first-line setting, and as monotherapy for relapsed/refractory (r/r) disease.1"
I realize acala might not be available to you but I suggest you ask. Same with venetoclax. A different class of drug but might be a choice if you can't tolerate ibrutinib.
Maybe nicely tell the doc that you must be part of the 10% that can't tolerate it. It is a bit insensitive to not acknowledge that. I had a major reaction to my first infusion of a monoclonal antibody. The literature says fewer than 5% of people have that reaction. Again, even in that small likelihood there are real people that have that situation and it is important for our medical providers to acknowledge that.
Thank you so much. My oncologist is an excellent dr. He may be assessing me from the blood profile alone which from what I've read was the way they passed people in trials. It had to be a panel approve switch based on chemistry. However I know that I haven't really given the whole picture of complaints as I am aware that he is trying to be encouraging. Who knows? He did bring up alcalabrutinib. I think they certainly want to have drugs in reserve in case one's chemistry is at a stand still. I will do a reading about alcalabrutinib. Thank you for your thoughtful and informative reply. I feel so much better knowing that there might be an option.
You were saying that you had a reaction to the first infusion of the monoclonal antibody. Were you able to take alcalabrutinib following that reaction? Also what is the purpose of that infusion? I'm aware that I'm missing so much having to do my dr's appointments by phone. The calls are short and infrequent. It's difficult to absorb all the information and certainly not enough time for either of to get the whole picture. This site has been very useful and certainly your experience has given me some clarity.
Apologies for any confusion. I was just trying to say even if there is a small chance of something happening, it could happen to you and I think the docs need to be sensitive to that.
My initial treatment was ibrutinib. Due to pain switched to acalabrutinib. No issues with side effects and I felt pretty normal. I stayed on it for 2 uneventful years but needed to make a change since I have very challenging markers and we could tell things were changing.
So I started a clinical trial that required a monoclonal antibody - that is when I had the reaction. It was after a treatment change was made. The monoclonal antibody was not part of the acalabrutinib treatment for me.
It sounds like you have a good doctor and glad to hear he mentioned acalabrutinib. I did not educate myself enough when I started this process so you are already doing a much better job than I did.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Ibrutinib
Ibrutinib. To take or not?
Ibrutinib as a monotherapy
Life without Ibrutinib 
