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tendon and ligament issues

Started by Sassenach , Feb 17 2017 07:03 AM

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#1 Sassenach

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Posted 17 February 2017 - 07:03 AM

Does anyone else have tendon/ligament issues with imatinib or other TKI? Tendon and ligament lesions are considered to be a possible adverse effect of imatinib.

The reason I ask, of course, is that in the last year I developed tennis elbow that continues to flare up and tore my ACL completely in two by falling off a low stool.

Do other TKIs cause this side effect? I'm considering switching if they don't, especially because I don't want to lose my other ACL--I'm not having surgery for the first one because I'd have to go off imatinib for a while, want to get PCR lower before doing something like that. And I do get some of the other side effects (edema, fatigue, brain fog), but I'm able to manage those okay.

TIA!

DX March 2015, WBC 25,000, FISH 95%, PCR 19.181

Started Gleevec 400mg May 2015

August 2015--FISH 9%, PCR 0.672

November 2015--CCyR, PCR 0.171

February 2016--PCR 6.830 (let it be a warning not to take a supplement with tyrosine in it)

May 2016--PCR 0.115

September 2016-PCR 0.402

December 2016--PCR 0.256

March 2017--PCR 0.152

April 2017--switch to Bosulif

August 2017--PCR 0.109

November 2017--PCR 0.278

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#2 Marnie

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Posted 17 February 2017 - 12:09 PM

Hi, Tia. . .

I don't know if this is TKI related or not. I've been battling severe tendonitis in my upper arm for probably 5 years now. It will heal up some during the winter and then in the summer when I get back out on the motorcycle and kayak it flares right up again. It's very frustrating. After my shoulder separation 10 months ago (motorcycle), the tendonitis has been plaguing me non-stop. In 50-some years of a very active life, I've never had injuries that wouldn't heal up. That said, age could also play a role at this time in my life.

Marnie

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#3 Pin

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Posted 17 February 2017 - 04:53 PM

I have constant tendon problems, as well as bursitis, I'm having an ultrasound next week to investigate pes anserine bursitis in both knees

I can't seem to heal it, it's been hanging around for over a year.

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

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#4 Sassenach

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Posted 18 February 2017 - 06:01 PM

Are either or both of you on Gleevec?

DX March 2015, WBC 25,000, FISH 95%, PCR 19.181

Started Gleevec 400mg May 2015

August 2015--FISH 9%, PCR 0.672

November 2015--CCyR, PCR 0.171

February 2016--PCR 6.830 (let it be a warning not to take a supplement with tyrosine in it)

May 2016--PCR 0.115

September 2016-PCR 0.402

December 2016--PCR 0.256

March 2017--PCR 0.152

April 2017--switch to Bosulif

August 2017--PCR 0.109

November 2017--PCR 0.278

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#5 Pin

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Posted 18 February 2017 - 07:59 PM

I am, I think Marnie might be on Sprycel though?

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

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#6 tiredblood

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Posted 18 February 2017 - 09:37 PM

FWIW, I feel better on gleevec versus Tasigna. Still tired but feel better.

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#7 Marnie

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Posted 18 February 2017 - 09:52 PM

I'm on low dose Sprycel.

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#8 Pin

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Posted 26 February 2017 - 05:03 AM

Are any of the TKIs better for tendon problems than others? I feel like they all have that effect... I am struggling, I am constantly in pain, and it is very frustrating!

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

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#9 Trey

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Posted 26 February 2017 - 10:29 AM

Sprycel is likely the best choice. But the data is limited on the issue.

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#10 Pin

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Posted 28 February 2017 - 11:47 PM

Thanks Trey - perhaps I need to ask about a drug switch. I am just not interested in full dose, any tips on how you convinced your doctor to let you start at low dosage sprycel?

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

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#11 Trey

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Posted 01 March 2017 - 09:08 AM

I always made the decisions about my dosage. Even now I am taking half what my Onc wants me to take. I get the pills in the smallest dosage so I can be flexible.

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#12 tiredblood

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Posted 01 March 2017 - 09:18 PM

Are any of the TKIs better for tendon problems than others? I feel like they all have that effect... I am struggling, I am constantly in pain, and it is very frustrating!

I agree, I think they all tend to have that effect. I still have aches and pains , but overall feel better. My shoulders have been the place with the most consistent pain.

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#13 Gail's

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Posted 09 March 2017 - 01:44 PM

Whining today. I've had a couple of days of shoulder, arm and hands pain that's taking a lot out of me. Narcotics take it down and I sleep. Just worn out from pain and drug hangover. Blood levels of magnesium very low so I upped magnesium intake. Just feeling sorry for myself and needed to vent.

Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

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#14 tiredblood

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Posted 09 March 2017 - 10:47 PM

I'm in pain too. Shoulders, arms,hands. My pain tends to come on in late evening and often awakens me during the night. Daytime is much better. What I can't figure out is why most of it is in the shoulders. I'm thankful, however that it doesn't seem to settle into the back. My nighttimes are the worst. I hate to see night come sometimes.

I hope you feel better. I haven't found anything that particularly helps either. You are not alone.

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#15 CallMeLucky

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Posted 10 March 2017 - 12:16 PM

I have found the TKI drugs to cause problems with connective tissue (tendons, ligaments, fascia). I used to think it was "muscle" problems, it may be the muscle itself, but my experience seems to point more to the connective tissue. I find Sprycel was less of an issue than Gleevec. Daily Yoga has helped a lot.

Date - Lab - Scale - Drug - Dosage MG - PCR

2010/Jul - MSKCC - Non-IS - Gleevec - 400 - 1.2%

2010/Oct - MSKCC - Non-IS - Gleevec - 400 - 0.25%

2010/Dec - MSKCC - Non-IS - Gleevec - 400 - 0.367%

2011/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.0081%

2011/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2011/Sep - MSKCC - Non-IS - Gleevec - 400 - 0.00084%

2011/Dec - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.004%

2012/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Sep - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Dec - MSKCC - Non-IS - Sprycel - 100 - 0%

2013/Jan - Quest - IS - Sprycel - 50-60-70 - 0%

2013/Mar - Quest - IS - Sprycel - 60-70 - 0%

2013/Apr - CUMC - Non-IS - Sprycel - 50 - 0.036%

2013/May - CUMC - Non-IS - Sprycel - 50 - 0.046%

2013/Jun - Genoptix - IS - Sprycel - 50 - 0.0239%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0192%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0034%

2013/Oct - Genoptix - IS - Sprycel - 70 - 0.0054%

2014/Jan - Genoptix - IS - Sprycel - 70 - 0.0093%

2014/Mar - Genoptix - IS - Sprycel - 100 - 0.013%

2014/Apr - Genoptix - IS - Sprycel - 100 - 0.0048%

2014/Jul - Genoptix - IS - Sprycel - 100 - 0%

2014/Nov - Genoptix - IS - Sprycel - 100 - 0.047%

2014/Dec - Genoptix - IS - Sprycel - 100 - 0%

2015/Mar - Genoptix - IS - Sprycel - 100 - 0%

2015/Jun - Genoptix - IS - Sprycel - 100 - 0%

2015/Sep - Genoptix - IS - Sprycel - 100 - 0%

2015/Dec - Genoptix - IS - Sprycel - 100 - 0%

2016/Mar - Genoptix - IS - Sprycel - 100 - 0.0228%

2016/Jun - Genoptix - IS - Sprycel - 100 - 0%

2016/Sep - Genoptix - IS - Sprycel - 100 - 0%

2016/Dec - Genoptix - IS - Sprycel - 100 - 0%

2017/Mar - Genoptix - IS - Sprycel - 100 - 0%

2017/Jun - Genoptix - IS - Sprycel - 100 - 0%

2017/Sep - Genoptix - IS - Sprycel - 100 - 0%

2017/Dec - Genoptix - IS - Sprycel - 100 - 0%

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#16 Chrisrap1

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Posted 10 March 2017 - 09:52 PM

I am 49 yrs old currently on Tasigna and have been for the last 6 years. October 2016 I had bilateral patella tendon ruptures (both knees) and a ruptured bicep both in the same day. The patella were done in a minimal impact fall and the bicep done by hard contraction no trauma. I had been in rehab for 6 long weeks and not been back to work since then.

My surgeon had not encountered this in 30 years. So wife who is a NP and myself started to wonder how I could have done this as I am in pretty decent shape. We have done genetic testing to rule out any vascular issues, a expert rheumatologist to rule out anything there. Lastly ending up in the office of Dr. Michael Mauro at Memorial Sloan Kettering in NYC. He is one of the leading experts in CML. After many tests etc....he feels the Tasigna did contribute to this happening to me.

We are currently considering discontinuing the Tasigna since I have a complete molecular response.

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#17 Sassenach

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Posted 11 March 2017 - 06:54 AM

Trey, you had some info about vitamins and minerals that might help keep connective tissue from shredding, would you share that list again?

That's terrible,Chrisrap--I am sorry. If most of the available meds have this side effect, I might stick with imatinib until PCRU. Or might call Dr. Smith at Hopkins, I've seen him before.

DX March 2015, WBC 25,000, FISH 95%, PCR 19.181

Started Gleevec 400mg May 2015

August 2015--FISH 9%, PCR 0.672

November 2015--CCyR, PCR 0.171

February 2016--PCR 6.830 (let it be a warning not to take a supplement with tyrosine in it)

May 2016--PCR 0.115

September 2016-PCR 0.402

December 2016--PCR 0.256

March 2017--PCR 0.152

April 2017--switch to Bosulif

August 2017--PCR 0.109

November 2017--PCR 0.278

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#18 Trey

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LocationSan Antonio, Texas

Posted 11 March 2017 - 10:32 AM

The TKI drugs, especially Gleevec and Tasigna, can cause loss of minerals and demineralization of bones and tissues.

https://www.ncbi.nlm...ubmed/16687713/

This demineralization is especially true of potassium, magnesium, phosphorous, and calcium. I would recommend supplementing these. I eat a lot of beans and leafy green vegetables and also cheese to get highly absorbable forms of these minerals.

https://www.healthal...neral-foods.php

This is one of several reasons why I switched from Gleevec to Sprycel after many years, to simply trade off some of the long term effects, if any exist which I did not know about. I also wanted to trade side effects (eliminated muscle cramping).

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#19 Sassenach

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Posted 12 March 2017 - 10:40 AM

Thank you! Loading up on supplements today....

DX March 2015, WBC 25,000, FISH 95%, PCR 19.181

Started Gleevec 400mg May 2015

August 2015--FISH 9%, PCR 0.672

November 2015--CCyR, PCR 0.171

February 2016--PCR 6.830 (let it be a warning not to take a supplement with tyrosine in it)

May 2016--PCR 0.115

September 2016-PCR 0.402

December 2016--PCR 0.256

March 2017--PCR 0.152

April 2017--switch to Bosulif

August 2017--PCR 0.109

November 2017--PCR 0.278

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#20 Jan0080

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Posted 13 March 2017 - 12:16 PM

Trey,

After about 6 weeks on Sprycel 100 mg, I started having significant muscle pain that would wake me up at about 2:30 in the morning. It would dissipate in about 6 or 8 hours but it was agonizing in the middle of the night. I take Zanaflex/Tizanidine 8 mg which works great. I also take magnesium and calcium and I go to the gym bright and early.

-Fred

Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!

Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.