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Posted 17 May 2017 - 08:58 PM
... and sing this song, 'I ache, I ache, more pills I must take........ I ache, I ache.
I've taken supplements, rheumatology prescribed/monitored NSAIDS and muscle relaxer for just over 4 months, stretching, heat, dose reduction, and still ache, taking XS Tylenol when it is at its worst. I'm not liking nighttime.
Sorry to vent and thanks for listening. Okay, I'm off to take the little pills that promise a normal lifespan.
Advanced Member
Posted 18 May 2017 - 07:11 AM
It is a new normal. I went from once a year annual physical, one prescription drug and not so much as a common cold in 10 years to multiple squamous cell skin cancers, irregular heartbeat, mouth sores, swollen salivary glands, GI irregularity, headaches, some fatigue and some insomnia. Many of these side effects have improved and some have completely abated.
I vent all the time to my poor wife, but I also know that the alternative (pre-TKI treatment regimen) was much worse with very poor prognosis. So I try to stay thankful for the TKI even though I hate it a lot of the time. Further dose reduction and maybe even stopping are my goals someday.
Hang in there.
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
Advanced Member
Posted 18 May 2017 - 03:29 PM
I'm so sorry you feel this way, tiredblood! I take for granted having no pain, but instead I should be grateful daily. When I do have a transient pain I'm a complete baby and my whole day darkens. This must be SO hard for you. What a slog. I have forgotten, are you on Gleevec? I have forgotten which kinase family is implicated in muscle/tendon issues and bone/joint pain, but maybe a switch to bosutinib would get rid of it?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 18 May 2017 - 05:56 PM
Advanced Member
Posted 18 May 2017 - 06:31 PM
Me too, me too. But they'd better hurry - I'm old!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 18 May 2017 - 09:26 PM
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Posted 19 May 2017 - 10:02 PM
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Posted 22 May 2017 - 09:52 PM
I'm so sorry you feel this way, tiredblood! I take for granted having no pain, but instead I should be grateful daily. When I do have a transient pain I'm a complete baby and my whole day darkens. This must be SO hard for you. What a slog. I have forgotten, are you on Gleevec? I have forgotten which kinase family is implicated in muscle/tendon issues and bone/joint pain, but maybe a switch to bosutinib would get rid of it?
It's Sprycel! I'm reminded of it everytime I do weight lifting, stretching and just about any type of exercise.
Sorry, kat73, just re-read and see you were referring to kinase family, not which TKI. I do have much more severe muscle pain when exercising than I did before starting Sprycel.
Edited by hannibellemo, 23 May 2017 - 05:29 PM.
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>
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