7 replies to this topic

[sarrie22]

My 38 year old husband was diagnosed with CML in 2007.  He started on Gleevec and but the side effects were awful so his doc switched him to Sprycel about 2 years ago.  He started on 100 Mg per day but last year they dropped him down to 50 Mg per day when the meds started killing off his good cells, not just the bad.  He started noticing a few months ago that his hair had started to thin (he's always had really thick hair).  He still has hair but it is getting noticeably thinner.  We'd like to try an OTC preventative like Rogaine. Has anyone tried this treatment and has it helped? Are there any potential adverse interactions of using Rogaine with Sprycel?  We also may have to face that the hair loss may be age-related instead of drug-related but his family all had thick hair into their twilight years.

Also, my husband has serious concern that being on Sprycel has significantly decreased his muscle mass. Over the years we have noticed that his legs, arms, etc. aren't as bulky as they used to be.  He has a light work-out routine and a fairly physical job but feels he is losing muscle mass. Being 38 he's naturally concerned with not just his health, but his physical appearance.  If he is going to be on Sprycel or something similar for the next 20 years (God-willing!), then do we really know all of the side effects? There is very little to go on when doing web research.  I'd love to hear other thoughts - if you have had similar experiences or concerns. His doctor is happy with his bloodwork numbers and doesn't want to switch meds so we are at looking for some validation to our concerns. Thanks and be well!

[CallMeLucky]

HI - I am in a similar situation, except that I am still on Gleevec.  I am 39 years old and was diagnosed in July 2010.  I have noticed that my hair is thinning a bit.  I try to rationalize how much is age related and acknowledge that the last year and a half has been quite stressful.  My wife has been telling me that her hair is thinning too - she has also been affected by the stress.  I haven't considered Rogaine at this point since it isn't that bad, but it is noticeable to me.  TKI's do seem to cause some hair loss in some people.  Seems to be more in some than others.

As far as the muscle mass goes, this is more of a concern for me.  I have not been doing much exercise lately and my side effects are worse for it.  My problem is I keep getting hurt doing even the lightest of routines.  I am constantly pulling muscles and feeling like my muscles do not recover anywhere near as quickly.  When I was diagnosed I was working out 6 days a week 60-90 minutes a day.  I can barely do anything now.  I am currently nursing a lower abdominal muscle problem that feels like a hernia, but there is no hernia.  I never had muscle problems like this before.  My overall muscle mass has definitely reduced and I am not as strong as I was (I cannot lift the same amount of weight I used to).  I am concerned about it, but not really sure what to do about it.  If I bring it up to my doctor, I am told it is not a known issue with the drug I am taking.  That seems to to be the standard disclosure along with an undertone message that I read as "you could be dead if not for the drug you are taking so figure out how to deal with it".  It pisses me off on one hand, but on the other what are we supposed to do?  Anytime I get into this conversation about "long term side effects" there is a part of me that says to myself "why worry about long term side effects?  There is no choice, if I don't take the drug, there is no long term to worry about because I won't be around."  So anything that comes with the drug I try to tell myself is just part of the deal.  Some will say try a different drug, but they all have their devils, you trade one thing for another.  I'm not giving up though, I am pursuing some other options.  This week I go to my first acupuncture appointment.  Hopefully it will do some good.  I've heard some good things from people who have gone, so I will hope for the best. 

I'm sorry I don't have better answer for you, more just sharing where I am in a similar situation.  Hopefully if I can get this current muscle injury under control, I can try to take another shot at exercising.  I can tell you that I have had the best luck with Yoga since diagnosis.  I don't know if I will be able to continue doing any kind of weights or anything like that, but the Yoga seems to work pretty well at keeping things stretched out and toned.  I would say any thoughts of building up muscle seem like a long shot given the fact the muscles just don't seem to respond and repair themselves the way they used to.

[lehrerin]

I, too, am VERY concerned about long term side effects.   My CMLer was diagnosed when she was 11, so we are looking at VERY LONG TERM, high dose Gleevec use.   She is now 13, and her hair has continued to grow very slowly, but she does have a full head of hair-no thinning at all.   She used to donate to Locks of Love regularly, but the last time was about 18 months ago.   Her hair hasn't grown all that much since the last cut.     Her muscle mass is GREAT!    Swim team means practice in the water 5 days a week with swimming at least a mile, sometimes two miles each practice.    One day of dryland training and spin class after that.     Her muscle mass is much better than it was prior to diagnosis.  Guess as a child she doesn't get have much of an option to stay in bed.   I get her up and moving regardless.   If she misses swim practice she has to write a note to the coaches explaining  why she was not in practice.    She says it is easier to just go, then she feels better once she is there swimming with friends.   She is very fortunate to have very few side effects (knocking on wood now!), that we are managing with supplements thanks to suggestions from MaryJo in NY.     She has yearly echocardiograms to check heart function, and still has blood work every 3 months.   The goal is go get her to PCRu eventually, so that dose can be decreased accordingly.   Its just taking a little more time than I would like.

[Happycat]

I would have to agree with Lucky.  I used to life light weights prior to dx.  Now, i poop out early and my muscles take days to recover.  I plan to give it another whirl soon, but will change it up a bit.  I did my normal 5 lb weights for arms, and was fine. Doing my legs, I just use my own body mass to supply the resistance. That was what got me. I think I need to start with something smaller for legs. Maybe resistance bands? 

Regarding hair, not much help.  I think I had a bit fall out early, but it seems to be coming back in, lots of new growth. Regarding Rogaine, my dh tried it.   All it did was stain the pillowcases!  Buyer beware on that.

Not sure if propecia is contraindicated with gleevec, but that is likely Rx.  Haven't seen a commercial in ages, did they pull it?

Too new to this to say anything about long term. 

Traci

[Trey]

Of course, the longer term unintended effects of tyrosine kinase inhibitors is not well known due to their short history.  But the data accumulated over about 15 years of experience shows that they are generally well tolerated, with minimal long term issues.  Those undesirable side effects which occur in some people can mostly be reversed after stopping the drug therapy.  That may be of little consolation if we are looking at a long term relationship with the drugs, but at least we know that we can trade some side effects for others. 

Most side effects issues do not come from the primary inhibition of the ABL in the BCR-ABL.  The issues come from the "off-target" inhibitions of c-Kit, and PDGF for all 3 drugs, and for Sprycel only, also the SRC kinases.  The reason these additional kinases are inhibited is because they are chemically so similar to the ABL in BCR-ABL, so the TKI drugs also fit into these other kinases "inhibition slots" (sorry for inventing a new term - trying to make this simple), although that was not the intention for the drugs.   

Gleevec and Tasigna do not appear to affect muscle mass since it has not been seen as a regular side effect.  But the tiredness from the drugs may have a round-about effect on muscles.  Sprycel inhibits the SRC family of kinase as well as those which Gleevec and Tasigna inhibit, so it is possible that Sprycel could have more unintended side effects than the other two drugs.  Sprycel has been shown to be generally well tolerated, but not everything is understood about the inhibition of the SRC kinases.  It may impact some muscle enzymes in ways that are not yet understood, and there is some speculation that the impact could be through changes in Creatinine levels.  If so, the supplements used by athletes to "bulk up" may help reverse the muscle loss. 

The hair issue is a side effect of all three drugs, but the effects depend on the individual.  It is assumed that the c-Kit inhibition affects the hair follicles.  For some, their hair becomes curly and thick.  Others have thinning hair.  Others lose some of the gray.  Some have persistent hair follicle itching.  There is no known problem using a Rogaine drug with TKI drugs.

New drugs are coming along which may help.  Bosutinib does not inhibit the c-Kit or PDGF much, so the skin and hair issues may be lessened or resolved when it is approved, maybe later in 2012.  But Bosutinib inhibits SRC, so that could be an issue for some.  Maybe some day there will be a more pure BCR-ABL inhibitor.  That would presumably eliminate most side effects.  Then also there is the eventual cure, which I believe will come in time for most of us to see. 

[CallMeLucky]

I've been considering taking a creatine supplement, but I hesitate for fear it might interfere with TKI.  I can't find any information on it and when I asked my doctor she just frowned and said there were no studies on it and would not recommend.  I personally think it could be very beneficial - provided it doesn't interfere with TKI.  I've told myself that if I could hold my MMR+ repsonse for another couple of test cycles, I might give it a try.  As much as I want to try some different things to feel better, I keep telling myself to get through the first two years without throwing anything into the mix.  After that, maybe I can experiment a little.  June will be two years, I have a PCR in March, then another in June.  If those are both good, then I may start to try some supplements and see if I can gain any benefit from it.

I'll tell you, if CML has taught me anything, its certainly patience..........

[Lynne D]

Well this is all very interesting. I just came across this post and while I was on Gleevec I had a whole different set of side effects. On Tasigna I lost hair and I had such horrible folliculitis that I looked like I had a horrible disease (Ha more horrible than the current one) or a visible one. I am now on 50mg of Sprycel and I never heard or thought of my muscle mass issues being connected, but listening to all of you I think it is. With my diet I should weigh 120 pounds, but I just can't lose anything. I had severe edema issues on Gleevec but not on Tasigna. I lost 30lbs of water in 2 weeks on T. Now on Sprycel, what should be muscle, is just fluffy and mushy. Sigh, and Trey my hair used to be pin straight and it is now coarse and curly. Lehrerin, my hair used to grow much quicker and now it just grows so slow. I'll have to look into this more. Thanks all.

[luvmybees24]

I am sorry to hear your daughter has to go through this at such a young age. I am just curious..have the doctors suggested transplant? I know we have a few younger people in the group who are getting a BMT and I know they do it sometimes when people are dx so young. Not something I'd want to go through myself but just wondering if that was something you had considered?

Laura.