Advanced Member
Posted 30 June 2011 - 08:06 PM
Thanks Josie,
It's a difficult one really - I think I might just leave it for now and see how I go as my morning is much more routine-like than my evenings, and this will undoubtably help with my adherence to treatment.
I might get used to it, or the leg fatigue might get better (is this too hopeful??).
But in any case thanks for your help
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
New Member
Posted 30 June 2011 - 09:17 PM
Last night, I woke up AGAIN with pain in my elbows. UGH......many nights I wake up with the aches....I think I might start taking advil before bed. It seems to really make a difference.......2 advil before bed.....I am thinking of trying my four gleevec 100's after breakfast to see if that will help....I am grateful for my small troubles, but I am tired of aching and not feeling great. I was cleaning up my old computer and saw my emails from when I was diagnosed.....six years ago.....they assured me seven years and then I would need a bmt. Wow, are we all lucky! THEY sure offer a lot more hope these days!!! NOW they tell me to take my pills and plan on living forever! 
. WE ARE SO LUCKY if our bodies respond to the meds. I guess I shouldn't complain about the aches! But I do want them to stop!!! Bye! Lala
New Member
Posted 30 June 2011 - 09:26 PM
Pin,
When I took the one 400 mg tablet of Gleevec and explained the horrible side effects I was having to my onc (nausea, bone pain (especially in my hands), leg cramps and fatigue), he suggested that I take in right before bed time and see if I could sleep through some of the side effects. It helped a little but changing the dosing to four 100 mg pills and taking two with breakfast and two with dinner made a HUGE difference for me.
Nat
Advanced Member
Posted 30 June 2011 - 10:45 PM
Many of us split the dosage of Gleevec into 200mg twice per day, as Nat suggested. That helps with side effects and stomach issues.
Advanced Member
Posted 01 July 2011 - 07:10 PM
I take my right before I go to sleep to try and sleep through any side effects. seems to work. I would actually like to switch the time but I found when I tried I was inconsistent in taking the pill and started to almost miss some. So I went back to night to be more regimented.
Advanced Member
Posted 01 July 2011 - 09:21 PM
Hmm, Marnie, I think it was originally supposed to be "darling husband" others quickly come to mind, however. I like any of yours better - especially "damned good-looking he-man"!
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Advanced Member
Posted 03 July 2011 - 06:38 PM
It seems that a few people have been approved to split their dosage. I think I read that Trey said that the main reason why they don't suggest this is because it hasn't been trialled not necessarily because it is not as efficacious as one dose.
Does anyone have any theories (or facts) about what this does to the levels of the drug in our bodies though? Just out of interest...
Hope everyone over in the States is having a nice holiday weekend
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 03 July 2011 - 08:04 PM
Splitting dosage has come from the patients demanding it to lessen side effects. There is generally not much interest in clinical trials purely to relieve side effects, so I would not expect a "split dosage" clinical trial any time soon. I suppose I was the one who made this an issue starting back in 2005 when I asked my Onc if I could do it and she agreed. After I became PCRU quickly on split dosage of 400mg (200mg twice per day), it sort of became an accepted method among us here, and the info also migrated elsewhere. Since Gleevec has a half-life of about 18 hours, the split dosage works to keep the average plasma drug levels in a tighter range than single dosage, although single dosage has higher spikes in plasma drug levels. Having said that, Sprycel has a very short half-life of 5 hours and it appears to work well in single dosage, but side effects could probably be lessened with a split dosage.
Guest_billronm_*
Posted 03 July 2011 - 09:26 PM
Hi everyone,
Happy Independence Day I hope everybody has great weather!
It's been 3 weeks now since I take 100mg of Sprycel, and 50 mg the next day.alternating the doses. I'm just now noticing that I am not so tired on the days I take 50mg. Maybe my anemia is getting better. After experimenting with Gleevac and now Sprycel I find that the best time for me to take my meds is after lunch. The only problem is after I take my S I get so tired. But I'm on other meds so I have to spread them out the best I can. Maybe if this anemia gets better I will have more energy. (God I hope so.) I get bw Tuesday so maybe I'll find out something then.
Pat if you're going to sail off into the sunset ,will you pick me up? I live along Lake Erie we've had boats over the years but I have never been on a sailboat. They look so peaceful and relaxing,and we have a big bay so if it's to rough on the lake we can use the bay. Happy Sailing.
lol Billie
Advanced Member
Posted 03 July 2011 - 10:14 PM
Hi Lala: So odd to see a complaint of elbow pain, but I have had terrible pain in my right elbow for a few days now. It hurts to move it a certain way.
I do have bad Arthritis though, so I always figure it could be that. I am so tired all the time, and I do things on different days depending on how I feel.
Today I had a bit of energy, and wanted to scrub down the carpet on my stairs. My husband always drips his coffee or ice tea as he walks down the stairs.
I figured I would get out a scrub brush and some Woolite to do the stairs, now my elbow is really hurting. At least my staircase looks nice LOL We do get used to the aches and pains, and just work around it.
We are blessed to be here with our TKI's. I had no idea I would get to year #13. I start my 14th year this Dec. coming.
Take Care
Susan
New Member
Posted 06 July 2011 - 01:12 AM
While I have leg pain, it is isolated in one leg. That lead my orthopedic to do a CT and MRI; he found a degenerative disk pushing up against the Sciatiac nerve. Since the spine has so few nerve endings, the nerve interprets the pain as coming from somewhere else, in this case the whole leg! Of course, your elbow pain is more likely to involve the TKI's, but I wanted to mention the lower back issue in case someone has the same pain history that I do. It just happened that the disk slipped more about the time I went on Gleevec, and my first inclination was to blame the new medication. In my case, it was a whole separate problem.
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