My specialist and I were discussing the pluses and minuses of my beginning a fixed duration therapy. I am currently four years into Ibrutinib with successful results and only a few nagging side effects.
We talked about my thoughts on benefits of going through a year of fixed duration therapy, the greatest of which to me was the prospect of being freed from the ever present issue of being immunocompromised as a CLL patient taking a BTK therapy.
His response was, "I'm afraid not. Even after finishing the fixed duration therapy and showing no signs of CLL in your bone marrow, you will always be immunocompromised."
Any thoughts on this?
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hhk50
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If your question is, Will your immunocompromised condition be solved by having Fixed Duration Therapy?
The following reading in regard to the Immune System /Immunocompromised/immunosuppression, may help you to see why the Dr. is saying there is no way out of the condition. The CLL itself is in the cells that have immune functions.
This is a lot to read, so you have a variety and can pick and choose.
I have been thinking about about adding Venetoclax to BTKi that I have been on for 24 months, without issues.
The pandemic has been the main driving force of this thought. Realistically, I doubt my community oncologist would go along with this. Not sure if I would even want to do it. But, would need to seek out a CLL specialist or trial, to get it done.
Cons: Disrupting current therapy that is working, with little side effects. Have to go through the ramp up, and possible problems that a different drug regimen could bring. I will still be immune suppressed.
Pros: Hopefully off therapy after a year to 18 months. Should have a better response to vaccines, that is a powerful driver.
Thanks. Your story and mine match. The issue is whether or not to add Venetoclax to my highly successful Ibrutinib regimen. Your list of pros and cons is the same. My specialist and I agreed to defer a decision until mid-next year due to some upcoming festivities in my life. No sense messing around right now.
Thanks for the reading material. I've skimmed it and printed out a couple of the articles. (I'm a paper guy so I like to print things). I'll get into them more later tonight. I appreciate the help.
Hi hhk, I’m in the same position but my immune compromisation continues because I have hypogammaglobulinaemia (low immunoglobulins/antibodies). Fixed term treatment and undetectable levels have not positively impacted on my IgG in particular even though I do seem to be displaying some bone marrow recovery by virtue of my general lab results. Do you have your immunoglobulins checked?
Looking back at your previous posts from some years ago, I noticed you mention elevated CK (creatine kinase) levels which is a problem I also experienced on Ibrutinib. In my case it was clearly down to muscle damage as a result of the BKT’s. Have you had yours tested again and do you suffer muscle/bone pain? CK levels seem poorly understood and rarely tested for. Not to be confused with kidney function.
Edit: just to set this into context, I’ve noticed your CK level was 111. Normal levels for a male are 40 – 320 U/L so yours were well within range. Normal levels for a female are 25 - 200 U/L and mine was 354. However, I do wonder if Ibrutinib is implicated in raising them in some individuals.
Yes, you hit the nail on the head. My IgG level is recently around 450 - considerably low but not low enough to warrant treatment in the absence of repeat infections (other than my annoying sinuses).
I suspect, however, that perhaps my question was too broad because my real interest is whether or not my body would be able to mount an antibody defense with vaccines (Covid) after a fixed duration therapy. I think that perhaps I'm tilting at windmills because the Evusheld seems to have produced a nice crop of antibodies in me, at least for now. Nowadays, though, with all of the new Covid variants it appears that there is no safe hiding place.
I am thinking maybe after fixed duration therapy, I will be a better vaccine responder; for all types of vaccines. The problem I see is, during dual therapy it could be much more risky and a bit of a mine-field out there.
I'm a case in point with regard to your specialist's observation and your concerns. I'm approaching 3 years since I started treatment with acalabrutinib, obinutuzumab and venetoclax. My IgA and IgM dropped from extremely low levels before treatment to barely detectable limits afterwards. I'm still reliant on weekly subcutaneous IgG to boost my immunity. My B cell recovery took two years to commence, so for two years post treatment I was incapable of producing antibodies to infections or vaccinations. My T cell CD4:CD8 ratio is still in the abnormal state my CLL drove it too.
On the plus side, my chronic neutropenia has resolved and I have the highest haemoglobin counts I've had in 16 years, now that my bone marrow has had the CLL intruders removed. I was diagnosed with CLL 14 years ago.
Finally, a correction to your statement about Evusheld; the injections provided you with a nice crop of antibodies, rather than producing a nice crop in you. They will disappear over time, unfortunately, hence the need for boosters.
Hi Neil, Thanks for your comments. Yes "provided" is absolutely a more descriptive term than "produced" regarding the antibodies we gain from an Evusheld injection. I received the Evusheld shot in early August and I'm hoping to convince my specialist to give me another one in early January (5 mos), immediately before I leave for an overseas vacation. Perhaps by that time it will even be Evusheld Generation 2
I am on acalabrutinib, started July 8, 2022. Have been experiencing extreme muscle pain (always on the left upper side)every so often, about two months after starting to take the BTK. Sometimes it disappears for a few days and then it returns, have to take Tylenol extra strength and apply Tiger balm, this does help. I have also resorted to exercises my physiotherapist has assigned me. I don't have any tightness in my chest, or other signs of cardiac issues, I have seen my GP. I noticed that you said you experienced muscle damage due to the BKT's, I want to avoid this, I will be seeing my oncologist, for results of a recent blood test, and will ask if I can reduce the dosage to one tablet a day, I think that the dosage is contributing to the myalga. Hoping you will respond. Thank you.
Sorry for delay in replying which is due to time differences.
I was on Ibrutinib not Acalabrutinib and Ibrutinib is known to have a higher toxicity profile in terms of joint and muscle problems. However, it does appear that for some people, BTK inhibitors lead to these issues and I’m sorry you seem to be one of them. However, please don’t assume that the pains you are experiencing are leading to some kind of irreversible muscle damage. There’s no evidence that this happened to me despite having very elevated CK (Creatine Kinase levels). This explains what CK is;
‘This test measures the amount of creatine kinase (CK) in the blood. CK is an enzyme found in the heart muscle, brain tissue, skeletal muscle and other tissues. Increased amounts are released into the bloodstream when there is muscle damage. CK occurs in three major forms, called isoenzymes:
CK-MB (found mostly in heart muscle)
CK-BB (found mostly in brain tissue)
CK-MM (found in skeletal muscles)’
The test doesn’t appear to indicate which muscle/s is affected however when they are looking at skeletal muscles.
Transient and unexplained pain seems to occur with these meds and my doctors could never explain the reasons to me. I had pre-existing arthritis when I started on treatment and now have pretty severe spinal stenosis so cannot attribute all issues to Ibrutinib use. I still persevered on it for 15 months before continuing on mono Venetoclax. I had episodes of excruciating pain in my back, shoulders, knee, wrists etc. which were a complete mystery and also very bad cramp.
If you are concerned, you could ask your doctor about a CK test. Being on the left upper side, I’m wondering if it’s connected to your spleen. I firmly believe that these meds home in on vulnerable areas that we have and over the years we’ve had literally thousands of member accounts of these joint and muscle issues. Thankfully, there’s rarely any long term implications except for successful CLL resolution.
can be but it depends on prior defects for example irreversible epigenetic changes , other diseases f. e. autoimmunedisease. Continuous therapy and prolonged malfunctioning of the immunesystem impair the immunesystem as well. When you get off drugs your body has the chance to recover.
For myself the CLL remains stable without treatment which is good but frustrating as it limits my activities
I had the Good Luck to Be seen by Dr Rai and the thing he always stressed to me was that treatment had a high possibility of making my situation worse not better because of long term immunity issues
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BTK Inhibitor Therapy for CLL: An International Perspective - Stephan Stilgenbauer, MD
