Hello, I was diagnosed in September 2021 and have been on Bosutinib since that time (17 months). The drug in my case has been very effective and I am fortunately "below the level of quantification." But I am wondering if other Bosutinib users have had continuing Gastrointestinal issues/problems, even as their dose has been reduced. If so, have you discovered anything (meds or diet) that has helped?
Thank you.
Anne
acspeakman, what dosage of Bosutinib are you currently taking? Typically, reducing the dosage of any TKI will reduce, or even eliminate, side-effects experienced at the higher dosage. Taking another medication to counter the side-effects experienced at a higher dosage, rather than reducing the dosage when possible, is not advisable. Being that your CML is "below the level of quantification" has your doctor permitted you to begin dosage reduction? Incidentally, Bosutinib was initially prescribed at a starting dosage of 500mg but after many patients had problems with the 500mg dosage, the normal starting dosage was reduced to 400mgs; with many patients beginning with 300mg, or even less, and adjusting their dosage up over a period of time; both the 500mg tablet and 400mg tablet are available, along with 100mg tablets. When do you test again?
Hello, Thank you. Yes, I'm at 100mg. Have been for 6 months. Started at 400mg in September 2021. My physician likes to reduce dose as soon as feasible. In my case, I was very fortunate to have DMR in first few months, and be undetectable now. That's why I'm interested in whether others taking bosutinib have had continuing GI issues, even as their dose has been reduced.
I also am interested in whether people continue to feel exhausted from taking TKIs even as their dose is reduced. Or is the fatigue level proportionate?
thank you!
acspeakman, you are very, very, fortunate to have a hematologist/oncologist who believed in early dosage reduction; very few do. Many hematologists/oncologists don't believe in dosage reduction at all which should be considered malpractice. If you have been on 100mg for six months and have still maintained your CML status you can go to an even lower dosage by skipping your dosage on every fourth day, then every third day, then every other day which would equate to a 50mg dosage. NOTE: you can also split the 100mg tablet to take the 50mg dosage. You wouldn't be the first CML patient to maintain on 50mg of a TKI. If you still maintain your CML status at that point, you can begin taking 100mg every third day, then every fourth day, and so on. Before you know it you will reach TFR.
Being that you began reducing your dosage very early in treatment I think you have a good chance of escaping the permanent fatigue that many longterm high dosage CML patients experience.
I was on a high TKI dosage for almost five years and ended up with permanent damage in the form of circulation problems in my legs along with the fatigue.
Buzz
Thank you so much. Yes, I agree, my hem/onc physician is the very best. I'm in Boston, Massachusetts and get my care at the MGH leukemia center. My doctor is part of a national research community on CML and TKIs. Because I've just now become undetectable again (at 100mg), she will most likely see if I can maintain the "undetectable" for several months and then reduce. It's good to be part of this forum because I learn so much from others.
Regarding the exhaustion factor, i have trouble knowing whether my fatigue level at 100mg is real or psychosomatic; I've read two studies that say women with CML and taking TKIs seem to be more exhausted than men and could it be that women need to exercise more, etc. Hmmmm?
Anyway, thanks for the information. Very helpful. Hope you have a good February.
Anne
Fatigue. I dunno. I've been at this so long (14 years) I almost don't remember what I used to feel like, although I can remember what I used to accomplish. I'm 71 now, so I only get side-eye from the various doctors I mention fatigue to - their eyes all say, "well, you're old, you're supposed to be tired." They, of course, are babies in their forties and have not experienced any of this. Never mind. To your question: Yes, I think the unique fatigue of patients on TKIs is still there even at a very low dose. I am on only 20 mg of dasatinib, as I also have an enlightened oncologist, although I had to fight him for it. You learn to cope, is all I can offer you. For some that's exercise, but not for all. For me, I just changed my expectations, adjusted, and tried to be positive about the changes. But I will admit to a very low-banked fire of anger underneath that "this" happened to me. If you're so inclined, like me, to try and figure out WHY the fatigue, I will float my pet theory: sinceTKIs target the ATP aspect of the leukemic cells - the part involved in energy production - and since the TKI is a shotgun and messes with ALL the healthy cells' energy productions as well, doesn't it stand to reason we might have a bit of trouble with, well, ENERGY PRODUCTION? Anyway, my pet theory, and I'm no scientist and no doctor. Key question: if you are able to remain TFR (no TKI at all), would the energy come back? Big mystery.
I’ve been on glivec for 19 years and I still suffer with fatigue, I’d like to say I’ve learnt to live with it but I haven’t it still frustrates me, I have good days so I go alittle more than usual but then it will be exhausted for days after x
Thank you very much for this information and your theory. I had not understood the ATP aspect before at all. I'm almost 80, and thought I was relatively energetic (for my age) BEFORE I got CML Now I feel I have very little energy to accomplish anything. Being on 100 mg of bosutinib, is certainly different from/better than being on 400 mg. But knowing that others feel robbed of their energy too--and that there is a cellular justification for that--is wonderful. Not sure if/when I'll get to TFR, but will be fun to wonder about the re-delivery of energy. Thanks
Hello, thank you for your response. 19 years is a really long time. It's helpful to know you have those kind of high and low days--regarding exhaustion and lack of energy--also. That's what frustrates me the most. I get excited when I feel more energetic. I imagine I've really turned a corner in adjusting to my about-to-be octogenarian life with CML. And then the next day I realize that I have not. Hope you're having an energetic day today.
thanks.
You have another option open to you - instead of dealing with side effects that may make your life quality less than desirable, you could switch to a different TKI. I've done that 3 times in the past 14 years. Liver toxicity with Gleevec shortly after dx and then pleural effusions that eventually would not resolve on Sprycel after 11 years. That was very difficult because even with the effusions I really liked Sprycel and I was on a very low dose, 25mg. every other day.
I've been on Tasigna since 2020, I started at 150mg twice a day and I'm now on 150mg. once per day. I've been CMR with a couple of exceptions since 2016. I will probably attempt TFR at the end of this year just to see. I'm not particularly hopeful but I'll give it a go.
I also see a CML specialist at the Mayo Clinic in Rochester, MN. Anyway, it's something to consider, at your level I would expect to start a new TKI at a reduced dose. Good luck!
Pat
Thanks very much for your response, Pat. That is another really interesting option. I think my physician will probably keep me on Bosutinib, because it worked so well so fast. Also she was among the first to try Bosutinib as a first line medication for some patients. We'll see how it goes. I'm grateful for this UK group. I'm learning so much from others who've been dealing with CML for a long time. And I feel better that my side effects are not that bad. Think I'll try for 7,000 steps today!
Thank you.
Anne
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Hello, TKi causes quite a bit of havoc with the gut and a lot of havoc with energy levels. I can relate to all the comments. Although I don’t get tummy ache in the traditional sense my whole abdomen aches at time, some sharp some tender. And the gas oh my goodness, if only we could run our appliances off that I’d be a wealthy man!
Needless to say some days are almost normal. There are no reason or ryhme to any of it. I gues over the last 5 years I’ve gotten comfortable with the unpredictability of taking TKI and having CML. All the complaints that I have, I never had before commencing TKI even when my CML was out of control and I was highly anemic.
But I am grateful and that’s important because some few aren’t so lucky. Sometimes it’s difficult to feel gratitude and I guess that’s normal for all of us. You’re on the right path by reducing dose and already having such low disease so early on says to me you’ll prob be off the meds in the not too distant future and hopefully you’ll hold that line.
Alex
