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Fatigue on Gleevec again

fatigue gleevec

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#21 RayT

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Posted 04 September 2015 - 08:12 PM

I've been on Gleevec since Feb 2014.  The fatigue was much worse during the first 6 months, easing slightly since but still an issue.  I have good and bad days, never knowing which I'll get until I get up. Three days ago I was at the State Fair for 13 hours, walking several miles and riding rides with my daughter.  Today, I dragged myself out of bed after 11 hours of sleep and have had no energy all day.  Tomorrow, who knows?  The fatigue was a major factor forcing me to retire from fulltime work 8 months ago.  I've had to accept the "new normal," doing what I can each day.  My advice is to take each day at a time and give yourself permission to rest/sleep when you need to.  There are days when I'm in bed for 11-12 hours so I can have a few "normal" hours...  :)



#22 OhNanna

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Posted 04 September 2015 - 08:57 PM

Thanks friends! I don't really think the doc intentionally mislead me, but was perhaps overly optimistic!!
RayT-- You certainly hit it. Never knowing from hour to hour if I'm good or not. Just very hard while trying to work with just 5 more months until retirement with a non-understanding boss!

Alright everyone, we can do this!!

#23 Buzzm1

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Posted 05 September 2015 - 12:52 PM

I'm hoping to get beyond the fatigue caused by Gleevec and begin making a comeback.  The obstacles in my way are the Gleeevec itself, the myriad of effects of severe longterm cervical degenerative disk disease brought on by a childhood injury, advanced age, and probably depression created by all of the above.  I'm presently down to 200mg of Gleevec a day and although there are hints of returning energy, it's intermittent at best, and not nearly enough to turn around the downhill slide.  I'm convinced that to regain any semblance of a normal life, whatever that might be in my case, I need to get off of the Gleevec and am hoping to do that in 2016 while maintaining PCRU.  There are still things I want to achieve, but as things stand now, I'm still setting more and more things aside until the time when I feel more able. Thankfully my mind still works great and I'm financially able. so it's not all bad... knock on wood.


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#24 OhNanna

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Posted 05 September 2015 - 02:41 PM

I think you got it right Buzz....you have to be thankful for all the little things too!!

#25 mariebow

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Posted 05 September 2015 - 11:16 PM

I hate to be a downer here, but you asked, so - I have never found a solution to the fatigue and it is very real.  (Six years.)  When I was at your point, I was distressed beyond words and was acutely aware of my "before" and "after" level of energy.  It's been so long now that I have adapted to it, and I only mourn the way things used to be about one-tenth of the time.  It's sort of a distant memory.  I do get frustrated on a daily basis, when I have started in on something and find that I can't finish it - or worse, that I have three things of equal importance that I need to get done, but I know - I KNOW that I will have to choose only two.  Which two?  I don't know - I have to see how the day goes.  I'm not too much fun to travel with!  I applaud your efforts to observe yourself and try and understand.  If you find a remedy for yourself (as others have, I believe) then it will be worth it.  But be prepared to find that you might have to get used to it.  I have never found that exercise helped, btw.  It just made me more fatigued!  Also, sore for a week, not just the next day. But others swear by exercise, so try and see what you think.  I have never been able to discern a pattern to the fatigue.  One day or hour I feel good and can walk fairly quickly, and another random day or hour my legs feel filled with sand.  Wet sand. During the day I can just suddenly be overwhelmed by fatigue - out of seemingly nowhere.  Anyway, I've given up looking for an answer.  I just make sure I get outside every day because that lifts my spirits, and I try to capitalize on my energetic period to get as much done as possible really quickly, I'm mindful of when I'm getting low on fuel and make sure I eat something good for me, and I sit down with a book or close my eyes when I'm tired, and let myself fall asleep when sleepiness comes over me.  I say no to a lot of stuff ahead of time - I've learned!  These are the ways I cope.  Six years ago I was taking the stairs two at a time and routinely ran down them - a zillion times a day, singing as I went.  Now I hang on the bannister and will myself to put one foot in front of the other and KEEP GOING.  All the docs seem to care about is shortness of breath - I say, no none of that - I just can't make my muscles move - my body just screams to please stop and hold still, don't lift any appendages - get horizontal, now.  There may be something to the glucose level theory - I don't know - my levels are always normal and about the same when I do bloodwork - and that has been done under different conditions and times.  I'm on Sprycel, but I began the fatigue while on Gleevec.  It was pretty night and day obvious.  Anyway, apologies again for the depressing note, but I figured you need to hear all sides.  I fervently hope you get some relief.

My symptoms are a lot like yours, this chronic fatigue is disheartening, I find myself staying at home a lot, and I take Tasigna, I was on here going to ask others, which I do not have different bouts of fatigue, but only now, mine stay longer and I get it quicker.



#26 dlb65

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Posted 08 September 2015 - 03:23 PM

Kat-you described my dealing with the fatigue better than I could myself. On Tasigna since diagnosis in 5/2013 and have recently reached MMR. Had a two week break this summer and the improvement in energy was startling. Looking at switching to Bosutinib.

#27 RayT

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Posted 08 September 2015 - 09:19 PM

Thanks friends! I don't really think the doc intentionally mislead me, but was perhaps overly optimistic!!
RayT-- You certainly hit it. Never knowing from hour to hour if I'm good or not. Just very hard while trying to work with just 5 more months until retirement with a non-understanding boss!

Alright everyone, we can do this!!

OhNanna, I've said a prayer for you AND your boss! I was blessed with a boss who had the understanding of a saint during the year between diagnosis and retirement. I worked in health care regulation. During my last year on the job I burned through a month of vacation time AND over 400 of the 850 hours of sick time I'd accumulated during the previous 22 years (A total 28 days that last year was spent as hospital in-patient.)  Many days I'd wake up only to call my secretary and tell her, "I'll try again at noon." Some days I made it in late, some days not at all. Although I've returned to part-time work teaching emergency medicine, I never schedule myself for more than a half day and make plans for plenty of sleep before and after.

 

Kat73, I DEFINITELY hear you, RE: " I only mourn the way things used to be about one-tenth of the time. " The "new normal" stinks!



#28 OhNanna

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Posted 08 September 2015 - 11:45 PM

Thanks RayT! Unfortunately I work for a Lawyer ... facts and evidence driven. My Onc said I could return to work full-time so that's what the boss expects. With all the crazy side effects, I have been working as much as I can, and use the same line, I'll try again at noon - a lot! I'm going to se the Onc again later this week and I'm hoping I can get a note off work until I feel better! <fingers crossed!>





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