63 replies to this topic

[kat73]

I would like to ask everyone who has tried cessation of TKI's if they have found relief from the fatigue most of us seem plagued with.  I would like to hope, in my lifetime, for a chance to stop these darned pills, although I'm prepared to accept that it's not going to happen.  But if I thought I could lose this cloud of fatique, it would be cheering to hope for it.  Does the fatigue ever go away when you stop TKI's?

[mikefromillinois]

Cessationist?  Great word!!  Sounds like a political party.

 

I have been in the LAST clinical trial for six months.  Just yesterday received my 6th monthly PCRU test result back which is my Christmas present.  Just thought I'd give a quick update on my own cessation attempt.

 

Anyway, with regard to fatigue:  I took 100mg Sprycel for 3yrs 10mos before stopping.  I had bad fatigue almost the whole time along with shortness of breath under minimal exertion.  Since stopping Sprycel I have no more shortness of breath and have virtually no fatigue.  I firmly believe though that my shortness of breath was due to fluid buildup around my lungs and/or heart and that the fatigue was likely a by product of the fluid buildup.

 

As with many of our collective side effects, it's often hard to pin down a direct cause-effect relationship between our meds and our side effects.  For a long time I attributed my fatigue with the fact that I put on 40lbs while taking the tki, and I was tired from lugging all that extra weight around.  It wasn't until I quit the tki and quickly felt like my lungs were twice as big did I make the connection between my short-windedness and the medicine.

[sunshineC]

I have had shortness of breath since I started Sprycel, and of course the fatigue, which I am learning is probably never going away as long as I am on a TKI of any kind.  I also gained 10-20 lbs and my onc is convinced its because of the extra weight.  I am, and always have been, convinced its the Sprycel.  I am scheduled for ECG testing tomorrow when I take my first Tasigna (Sprycel just seemed to stop working after having great success in the very beginning).  I was very upset at going on Tasigna after reading all the horror story side effects here, but then was gently reminded by someone I have a 50/50 chance of not having adverse reaction. 

Anyway, just wanted to share.  And who knows what the Tasigna will bring, but I am certainly looking forward to not being so short of breath so much.

[Buzzm1]

I have been in the LAST clinical trial for six months.  Just yesterday received my 6th monthly PCRU test result back which is my Christmas present.  

Congratulations Mike .. after remaining PCRU for 6 months after cessation, the chance of a relapse is very low ... 

[story]

Within a couple weeks of stopping Tasigna, I felt much less fatigue. I had a real problem with shortness of breath while on Tas when hiking uphill etc. The shortness of breath issue went away after cessation.

[sunshineC]

Within a couple weeks of stopping Tasigna, I felt much less fatigue. I had a real problem with shortness of breath while on Tas when hiking uphill etc. The shortness of breath issue went away after cessation.

CRAP!!!  I was really hoping that shortness of breath thing was a Sprycel thing, not a TKI thing.  Ughhhh...

[kat73]

Thanks, Mike and Story.  I have a moderate pleural effusion that apparently comes and goes (I find out via random chest x-rays for other things), but my onc never seems to suggest stopping Sprycel for awhile.  I don't feel short of breath, but then I never move because I'm so tired! Anyway, it's good to hear that cessation might someday end the fatigue.

 

I'm sure to my non-Southern friends, "cessationist" sounds like more than a political party!

[Trey]

Nothing exceeds like excess.  Has nothing to do with what you asked, but I like saying it anyway.

[PhilB]

Nothing exceeds like excess.  Has nothing to do with what you asked, but I like saying it anyway.

And while we're off the subject, you may need to say this one out loud

        "Nothing succeeds like a seed-sucker"

 

As a reductionist rather than a cessationist I'd say I have seen a significant reduction in fatigue, but it took about a month.

[Cathy]

I have always had the bad fatigue and contribulted it to I gained some weight and my onc feels the same way. But My MD said in her reading she feels there are 2 sets of side effects with Sprycel. I'm on 70 mg. one with fluid and shortness of breathe and cough which I also have always had just mild. And shortness of breathe and cough with out fluid. Just a side effect so I'm okay with new normal. The fatigue has alwasy been there.

 

Wow would it be nice not to have the fatigue!

 

Cathy

[Gail's]

Does brain fog go away once you stop? I can't believe the things I forget! Scares me that I'm becoming senile but it really has changed since gleevec

[ChrisC]

We all are different and will experience different side effect, etc. But since you asked . . . 

 

It's been over four years since I ceased taking any TKI, and I still have such fatigue. My PCP has put it in the category of Chronic Fatigue Syndrome, since all my blood work is normal and has been for ages, thyroid has come back normal, Vit. D is around 50, everything we've tested and tried has left us with a mystery. I've learned to plan well, rest a lot, and to conserve my energy so that at the time that planned events or errands and such must be attended to, then I can participate. Anyway . . .

 

Re brain fog, that did cease when I stopped the Sprycel. For what it's worth, check out some rosemary aroma oil perhaps, but get the purest you can find. It isn't expensive to get the good stuff, and the benefits are worth it apparently: http://www.foodworld...-study-says.htm

 

Best to everyone,

 

ChrisC

[kat73]

ChrisC - I'm sorry to hear that about the fatigue not going away.  I have occasionally wondered if there is a link with Chronic Fatigue Syndrome (I think there's a new name for it, but I forget what it is.)  They know so little about the genesis of that syndrome, but it always seems to have started with something else - a virus or event.  Some change in how the blood cells are being produced in the marrow, maybe?  Maybe someday we'll get some answers.

[JPD]

I read the header as "Question for Creationists"

 

and thought "oh boy"

[Alajazz]

I'm a recent cessationist, also on the LAST study. My Gleevec habit lasted for 15 years, having been in the original Novartis trial. One of the main reasons I signed up for LAST was just to find out what I would feel like without Gleevec. I had learned to live with whatever the side effects were over the years, to the point that I no longer knew what normal might feel like.

Since fatigue is our topic here, in comparing before stopping to after I stopped in mid Sep, my fatigue is worse. However, other changes could be affecting this sentiment, such as:
- joint pain is significantly worse after stopping
- have felt some lung congestion and had coughing that has persisted for 2 months

My PCR tests have been negative for many years and remain so. My stopping experience thus far has been disappointing though I realize it's still early. All those years on TKI must undoubtedly induce significant changes in the body and the "withdrawal" effects are apparently not understood yet. I'm looking forward to hearing other cessation stories.

[Buzzm1]

I'm a recent cessationist, also on the LAST study. My Gleevec habit lasted for 15 years, having been in the original Novartis trial. 

Congratulations on your decision to stop Gleevec Alajazz.  Wishing you continued PCRU.  If duration of Deep Molecular Response (DMR) is a factor, as most studies seem to indicate, you should have smooth sailing (although there aren't any guarantees).   http://bit.ly/1XyGyL5

 

Has the LAST Study given any indication as to when they will begin publishing interim results?  

 

The Life After Stopping Tyrosine Kinase Inhibitors Study (The LAST Study) https://clinicaltria...how/NCT02269267

[kat73]

Alajazz - Wow, 15 years.  It must be very disappointing to not feel great after quitting.  But I think it simply MUST be due to how long you were on Gleevec, and that in time, the joint pain et al will wear off.  Whether it does or does not, I hope that researchers are watching - it could be someday the norm to take periodic breaks, just so this doesn't happen.  Keep us posted, will you?

[jjg]

I recently stopped tasigna for pregnancy. I stopped 10 days before getting pregnant and was off treatment for 16 weeks. Now the first trimester of pregnancy is supposed to be a time of fatigue... nup... I felt great other than morning sickness. Even 24/7 nausea for 10 weeks didn't out weigh the feeling better due to lack of fatigue. At 16 weeks I had to start interferon and the fatigue from interferon is from another plannet.

[kat73]

Oh, jjg, I'm so sorry about the interferon.  I'll just bet you're counting the days til this is all over and you can go back to "normal." (And, of course, you get that wonderful prize for your efforts, as well!)  But I'm glad you didn't have the fatigue on top of the first trimester morning sickness.  I'm an old lady now, but I can still remember VERY clearly how that felt.  In fact, the closest I ever came again in life to feeling that awful malaise was when I was on Gleevec for two years!  Brother.  Good luck to you and keep us up to date!

[jjg]

Thanks kat, we have an induction date now in the 2nd week of Jan now so I've very much counting down the max number of interferon injections left - currently 17! Interestingly because the interferon is short term the mental aspects of the very big changes in life are easier to cope with than one might think and of course the baby helps a lot too.