Does this surprise any of us?
Chronic Fatigue Limits Quality of Life in Imatinib-Treated CML Patients
Posted 16 April 2013 - 08:23 PM
No surprise to me. My onc changed me from Gleevec to Tasigna when I confessed that I was looking at working part time due to fatigue and pain. Since I work a 50 + hour/week position, plus chair a very active community board (said yes to a second term two weeks before diagnosis ), this was a big change. So far, I'm tolerating Tasigna well and feel about 85%-90% baseline energy level. Pain currently only after physical activity (for about 24 hours). I am assuming that the pain now is partially due to inactivity from feeling like crud. Hopefully the muscles will come back into action then complain less. Anyway, I completely agree with the article. If we are indeed dealing with a chronic disease/new normal, quality of life becomes very important.
Posted 17 April 2013 - 10:38 AM
Just validates why I had to stop taking Gleevec. Unfortunately I'm not sure I am doing that much better on Sprycel, and 50mg no less. Fatigue is no where near as bad, but muscle pain does persist.
Posted 17 April 2013 - 02:18 PM
I am interested in hearing more about the improvement from Gleevec to Tasigna. I am looking at making that change next week. I have been on 400mg Gleevec since 11/10 and have been pcru since 3/12. The bone pain and fatigue have been debilitating and I work full time and am a single mom to a 10 year old. The literature for Tasigna seemed to indicate the same side effects (and frequency) for Tasigna as Gleevec but many on this board have seen it as an improvement. I know my oncologist is doing some testing of my heart and thyroid before making the final decision to make the switch.
Posted 17 April 2013 - 02:36 PM
Just watched this web discussion they all cause fatigue. Sprycel too.
Posted 17 April 2013 - 10:45 PM
I found this interesting, due to the fact that I have had constant fatigue since the very beginning of taking Gleevec. Many of you know that I have been on Gleevec for many years, and I did not lose the fatigue or some of the other side effects after long term use. I am having a very bad week this week. I thought maybe it was something else, but now I am wondering if its my Gleevec. I still get the foot and hand cramps, fatigue, the orbital edema, joint pain ( could be my Arthritis). Do not know how to differentiate between the both of them.
I have to say that I am older, and do not have to go out to work like some of the younger people, and due to the fact that the Gleevec has done its job for me I would not think of switching to one of the other drugs. I see Beverly says that they all cause fatigue, but I see more complaints with the Gleevec.
I think its a matter of what you want for your quality of life versus being at PCRU. Its not easy, and unless somebody else is going through the same thing its hard for them to understand.
My friends and family look at it that I am in Remission, so I should be feeling great. They do not understand the process,and that just because we are doing well that we still have the disease, and what these drugs do to our bodies.
Posted 18 April 2013 - 02:54 PM
I'm glad that you've been stable on Gleevec, but I will say that I felt about 25 years older on it (than at diagnosis). My big hint came when I missed a dose due to a stomach virus. I awakened the next am with nearly no pain. Everyone has to find what works for them with this disease because we're in it for the long haul. I am fortunate that the pain and fatigue are nearly gone on Tasigna. Could I develop pancreatitis or prolonged qt, yes. I don't think there are easy choices here, but we all need to find what works for us.
Posted 18 April 2013 - 08:31 PM
I found I got a bit of energy back when I dropped to 300mg, I still seem to cycle through the muscle and tendon issues though and still get the occasional cramp in my calf muscles. One of the major things I noticed when dropping to 300mg is that I felt stronger in my muscles and have been able to return to using small weights as part of my exercise regime.
Posted 18 April 2013 - 09:33 PM
Hi: My doctor refuses to drop my dose of Gleevec. I was advised not to cut my tablets in half with my 400mg. because it could give me stomach issues which I already have. I do wonder how I would feel with a lower dose though.
I have so many problems, and its hard to figure out what is causing what. I hobble around with the arthritic knees, and struggling to try to lose weight. I could go on and on, but this is about CML not all my other problems.
I am scheduling my Endoscopy finally next week though to figure out if its a Hiatal Hernia that I am dealing with. Been feeling miserable for a few months. All these posting really made me wonder if a lot of this is the Gleevec.
Its also true that we have to do what works for us.
Posted 18 April 2013 - 09:54 PM
Susan - We could be twins! I'd love to meet with you one day and compare notes.
Due to my recurring knee issues, my onc cut my dose of Gleevec in half so my immune system can recover and I can get a knee replacement. Three weeks after starting the 200 mg dose, my side effects are half of what they were. Ahhhhhhhhh!!!
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Posted 18 April 2013 - 10:11 PM
Hi Susan, I'm surprised that you were told not to cut the glivec tablets. There was a couple of months when my dose was increased and I had to cut the tablets every 3rd day to get through the tablets I had. I never noticed any difference on the day I cut the tablets. I don't entirely understand why you feel that glivec at 400 is the only thing that will work for you, but I'm mighty glad it has worked so well for you. Good luck with the endoscopy.
Hi Nat, Good luck with Tasigna. Comparing glivec 600 & 800 to Tasigna 600 has seen a massive improvement in qol for me, and also I have also responded better to Tasigna. I was off treatment for some time in between (not for a TKI related reason) and so when I started Tasigna it was almost like starting from scratch again. All I can say is I wish I could have started on Tasigna (it wasn't available to us in Australia at that time as a first line treatment, but is now). As you say I could come down with some of the nasty side effects some time in the future but there are risks on glivec too. Qol is very important and I'm a mixture of sad and impressed that I had accepted (well sort of) the qol I had on glivec and very grateful that tasigna is much better.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 19 April 2013 - 11:05 AM
I have CML and when I found out my cousin by marriage had had it for 4 years an told no one I was shocked. He was on Gleevec and off a few months then put on Sprycel as you may know me by the one that just last week had 1 litter of fluid removed on left lung. I am so scared to keep taking it as docs are waiting for the 2in1 antibiotics to take effect for what is still in my lung. I asked if she could lower the dose but she wants to wait. It isn't her lung is it...Anyway My cousin did well on G and I saw him last Christmas his color was pale older than me by 10yrs? Always been a drinker. Still drinks. I hated drinking but now in the past 2 weeks with what has been going on like my coffee with Amerreto psychiatrist this prob a bad idea yea right she isn't the one getting a tube stuck in her back lidocane etc. Hot cold sweat after procedure. I have arthritis in my left hip suprisingly it's not bothering me as much I use to couldn't sleep on my left side at all even with a nice new matress. I looked on line at Mayo Clinic in Jacksonville but I only have medicare and the care they would give would be much better but only 80% of approved and the rest out of my pocket. Changing doctors or getting a second and thrid opion is a option we all have to do untill we get the one that makes us feel better about our care. By my experience loosing 2 family members last year go with your gut!!!
Posted 19 April 2013 - 11:09 AM
BTway my mother had double knee replacements 24yrs ago and much has improved since then Bless you all
Posted 27 April 2013 - 09:19 PM
I'm with you, it's your body, your life. Go with your gut!!! Especially after I read that article about the US sueing Novartis for kickbacks. I always felt all that money was going into research but in big pharma and ceo and probablly the goverments pockets too. Still no cure for MS and I remember those Jerry Lewis telethones when I was just a little girl and I'm 65 years old. They, health care, always tell you when diagnosed aren't you the lucky one, got a cure right around the corner. Feel more like a guinea pig for their pocket books, then a cure!! Sounds ungrateful, but I hate the thought of me suffering on stupid drugs when it is no cure while they pad their pocket books. Man made drugs, no natural healthy cures. I remember one oncologist say ( this was back in 2005/2006, in the old days we taught to hit them hard and fast we chemo and most died. I know these are no chemo drugs, but they are toxic and have a long laundry list of warning. Of course the docs say, well that may not be you. Well I say if one toxic side effect doesn't get you another one will. Are they keeping us a live longer, yes, but what is the quality of living cost, to padding their pockets with some money to live a fancy life style. That is the way I see, not much of a choice they have you in a corner.
Posted 26 May 2013 - 07:39 PM
Gleevec comes in both 400 mg and 100 mg tablets--couldn't your pharmacist just switch you to the latter?
I take four 100 mg tablets per day, as I find them easier to swallow.
Posted 26 May 2013 - 08:32 PM
Hi: I see you got onto a conversation from back in April, but its not that I wanted to cut down my dose as easier to take. I wanted to cut down to just 200mg a day from the 400mg to lower my dose. My doctor does not approve.
She wants me to stay on the 400mg dose a day, yes I could get the 100mg tabs if I want to.
Posted 28 May 2013 - 06:21 PM
Good article. I find that my energy level maxes out at about 90% of capacity while on Gleevec. I drink far more coffee and caffeinated tea than I used to. I hope it doesn't hurt me.
Posted 30 May 2013 - 02:31 PM
coffee is suppose to be good for you. I have always been a soda nut, and trying to cut down on the caffeinated beverages, or buy decaf soda. I am also drinking the Sobe lifewater flavored drinks. I think caffeine drinks are stomach upsetters, but it depends on your own feelings.
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