12 replies to this topic

[jrsboo]

Hello all my Imaginary/Virtual Best Friends,

Last Onc visit, at the 7 month mark, she seemed stunned that I was still fatigued.  Mind you, she is a CML expert doing all sorts of research for us at the Fred Hutchinson Cancer Center, not your off the rack oncologist.  So I am checking myself with you guys.  I KNOW I am tired. 

Am I the only one on 100 mg of Sprycel that is still tired?  I can only do about 1/3 of what I was able to do before.  Granted I was an overachieving, energizer bunny of a person who never said no to anything..........but still. 

Caroline

[Trey]

All TKI drugs can cause fatigue to some degree.  In some it is worse because of anemia or just "low normal" blood counts, but it is not just related to blood counts.  The reason is not clear, but probably due to some process that needs c-Kit or PDGRF, both of which are inhibited by TKI drugs.  I hope that Bosutinib may cause less fatigue since it inhibits these unrelated kinases less than the current drugs.

GIST patients who take Gleevec also have fatigue, which to me is clear enough that it is the TKI drug:

http://www.liferaftg..._Reichardt.html

[CallMeLucky]

Trey,

Do you think there is a way doctors could supplement c-kit or PDGRF to try and counter the effect, or would that be counter-productive because it might help the leukemia spread?

[Trey]

No, since these are signaling tyrosine kinases, just as BCR-ABL is a signaling tyrosine kinase (although a mutant one).  They must come from within the cell itself and must be tightly regulated by the cell.

[lala]

Hi, Caroline,

YOU know I have written about fatigue sssoooo many times!!!  hence, THE SLOGAN!!!  :-)  I want to comment about the ritalin offer that you mentioned on your other thread.  Last August, after having my 6 month check, I left in tears and wrote to this site to ask everyone if they had fatigue as my doc couldn't believe I couldn't work full time!  He prescribed ritalin and after a bit of research, I tried it---my trusted neighborhood pharmacist said why not-----I took it for a few weeks.  After running to the bathroom EVEN MORE THAN BEFORE, I said no thanks!  I couldn't keep running out of the classroom!!!!  I do wonder if it helped at first.  I wonder if it kind of jump started my system cuz I was able to travel to pick up my son in Kansas (jayhawk!).  I remember speeding a little through that time and wondering if it was resetting my system.  I did it until it didn't work at school-----I also didn't like how it made me feel------I did ask this group of favorite friends and their suggestion was to not take it which I was happy with cuz it reinforced my decision.  Don't you love when people agree with you??!!  :-)  When I returned this Feb., I spoke very honestly to my nice doc and said how I felt in August.  I could tell he was sorry----I asked him to please know WE ARE SO DARN TIRED AND UNABLE TO DO WHAT WE ONCE DID-----now, I call it deep chronic fatigue.....not just tired like everyone else!!!!!!  I also had insurance problems this Jan. ----I had to beg for my medicine----and then pay $3000 out of pocket BEFORE the deductable kicked in-----OMGosh---can you imagine----the pharmacist called and said:  I have good and bad news:  good news, they finally approved your meds, bad news, you have to pay the first $3000.....I cried, again!!!!!!!  Now, everything is covered 100%......so I agree, this is not a walk in the park!  This site has helped me so much----THANKS TO YOU ALL!

~lala  

[Marnie]

HI, Caroline. .

I'm on 100 mg Sprycel (going on 3 months, after 1.5 years on Gleevec).  I am always tired, though not dibilitating.  Good thing, I guess, since I can't retire for another 4.5 yrs.  This weekend I had perhaps the worst exhaustion that I've felt since diagnosis.  Went for a walk, and just ran out of steam going up a hill.  I guess I've just given up on having the kind of energy I'm used to having, and I gut it out and keep doing everything anyway.  I go to bed a lot earlier now and don't get nearly as much accomplished as I used to.  I guess my way of dealing with it is to let the housework and other boring crap go, and spend the energy I do have on things that I like to do. Certainly not the best solution, but it works for me.  I am counting down the days until I can quit spending any energy on work, and spending all of my energy on fun stuff. Used to be that I worked pretty hard at being superwoman.  Not any more.  Now I just have what fun I can, and get by on far less than perfect on everything else.

Marnie

[Marnie]

Caroline. . .I just realized that within a very short time tonight I wrote two posts that sound pretty contradictory.  In response to you, yes, I feel fatigued all the time, but to a newbie who is a runner. . .that I continue to do all of the strenuous activities that I've always done.  So I guess, in retrospect, I get really tired of the fatigue, and yes, I feel it pretty much all of the time, but I don't let it affect my lifestyle.  Or at least. . .it affects my lifestyle in that I don't waste my energy on the everyday humdrum tasks (my house is a bit of a disaster at times). . .and I continue the activities because I'll be damned if I'll let cml stop me from doing what I enjoy.  Though I am definitely wiped out at the end of most days.

Marnie

[Trey]

As Madeline Kahn said: "Let's face it, I'm tired":

http://www.youtube.c...h?v=6-pmpgrYQgs

[jrsboo]

Thanks everyone.  It was very heartening to hear that I am not the only one.  I mean I knew that there were a lot of people here that were fatigued to some extent, but I wasn't sure if it was true of Sprycel users as well.  And I am SO happy to hear someone else tried Ritalin.  I really really don't want to.  I have tried to simply do more the past few days, under the onc's idea that if I did more and exercised more, I would have more energy. 

So I took some foster puppies for the weekend, did some client work that had been waiting, and this morning got up and HAD to do three tax returns for some trusts that I am the trustee on.  Went food shopping since the pantry was completely empty.  And was in bed, asleep by 5 pm.  Woke up after a couple of hours, took my pills, and am back in bed. 

I think the onc is full of you know what.  By three oclock today it felt I was swimming through jello.  The fatigue is real.

I cancelled some other plans for the week, and I think tomorrow will be spent folding laundry.

Thank you my imaginary friends.  You have made this journey so much easier.  I find it invaluable to talk to you all about this stuff.

Caroline

[jrsboo]

Hello again, BIF's,

Just got back from the Neuro-psychaitrist.  I had had a ton of congnitive testing done last week to see if there were any drug related deficiencies.  And lo and behold, I really am unable to remember sh*t!  Not my imagination, and for everyone that keeps saying "oh, you are just getting older"  BITE ME.

Sigh.

I don't know why it feels better when one is validated that pain/fatigue/brain fog is real, but it really does. 

So, I am NOT going crazy, I am NOT imagining things.  I am, in actuality, cognitively challenged right now.

There is some rehab that they can do to increase my auditory short term memory.  (Can you imagine that?  When I say I can't remember you asking me to take out the garbage, I really can't remember it--tee hee).  Apparently my ability to use that function is about 45% less than it should be.  That is quite a bit.

Double sigh.

Thanks everyone for listening. 

Caroline