tendon and ligament issues
#21
Posted 20 March 2017 - 06:37 AM
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
#22
Posted 20 March 2017 - 08:48 AM
Pin,
That makes sense. The TKI drugs (some more than others) inhibit Platelet Derived Growth Factor Receptor (PDGFR) which is necessary for tendon and ligament repair. The injections would appear to overcome that inhibition of PDGFR for a short time to allow healing. Please report longer term experiences with PRP.
https://www.ncbi.nlm...pubmed/12696985
Edited by Trey, 20 March 2017 - 08:50 AM.
#23
Posted 20 March 2017 - 04:53 PM
#24
Posted 20 March 2017 - 09:45 PM
I've read about PRP injections. Glad to hear your feedback on it. I've been having dry needling done in the hopes that it will help with rotator cuff issues from last year's encounter with a rock wall while on my trials motorcycle. Still not healed up, but the needling seems to be helping. And now, I've been out for over a week from a severely pulled thigh muscle--from repeatedly kick starting the trials bike. I am convinced that Sprycel is having an effect on muscle injuries and slow healing. Very frustrating.
#25
Posted 22 March 2017 - 12:54 PM
Marnie - You are your own worst enemy. But keep it up, love it that you are always on the go. Glad you are doing better.
Pin - So great to hear you found something that helps! I read you were having difficulties.
Gerry - What are you doing stretching in the morning? My stretches consist of reaching for the beans to grind coffee on the top shelf.
#26
Posted 22 March 2017 - 05:03 PM
#27
Posted 08 April 2017 - 12:00 AM
I have been off sprycel now for almost 7 months with no dedectable disease. However I have developed horrible tendon pain, it is generally all over but severely in my calves with swollen Achilles all the time, I have tried to push through it, I did a taper down dose of prednisone that helped but mostly while on higher dose of 50 Mg. But when I got through with prednisone pain came back and even more severe. Doctors don't want to put me on it again they suggest that I possibly had another disease that sprycel kept at bay and now that I'm off it's now surfacing.
I'm so frustrated because they aren't helping with the issue and I really felt being on this trial that this was what they were trying to figure out-what will happen when patients go off? and how will they treat them when they have issues like mine? No luck I'm now being refered to rheumatologist. It was suggested that I maybe should go back on the sprycel. I don't want to do that. But now I'm wondering if I've only exchanged one disease and pill for another disease and pill.
#28
Posted 08 April 2017 - 01:16 AM
JLS, happy to hear that you are still undetectable after seven months, but very sorry to hear that you are burdened with severe calf and achilles problems. I went through a three week bout of fairly severe calf, ankle, and achilles problems while tapering down with Gleevec. I'm now just shy of six months off of Gleevec and although I am still bothered by tendon, ligament, bone pain, and other issues, I would like to think they are lessening. I am testing quarterly and will have my six month test a week from Monday. I am hopeful that you won't have to restart Sprycel but also know how severe the pain caused by TKI withdrawal can be, especially after being on a TKI for an extended period of time. Wishing you the best of luck.
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#29
Posted 09 April 2017 - 09:23 PM
JLS, I wanted to mention that, after cessation and while still undetectable, Alajazz chose to restart Gleevec at a lowered dose of 300mg due to extremely painful withdrawal side-effects, . Alajaz, unfortunately, had been on Gleevec for over 14 years, with all but the last few years on a high 600mg dose.
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#30
Posted 14 April 2017 - 10:35 PM
Being on a diuretic (blood pressure meds) can make the demineralization worse, it did for me anyway.
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