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Goodbye TKI


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#61 Buzzm1

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Posted 16 May 2016 - 10:37 PM

I've been TFR for 2 1/2 years now, but Gleevec still seems to haunt me.
Prior to diagnosis I was on a statin for cholesterol. After taking Gleevec my cholesterol levels dropped into the low area, so I came off the statin. After stopping Gleevec, I found I had to return to taking a BP med and a cholesterol med. BP med is fine, but the cholesterol meds are causing me issues. I've tried a couple of the statins and each one has given me muscle pain in the legs, which is apparently where this issue starts. So after stopping and starting these I've moved onto one of the other cholesterol drugs which isn't a statin.
Ezetimibe is supposed to cause less issues, but I seem to be getting leg cramps from it, the one I had the other night was far worse than anything Gleevec threw at me.

I have to wonder that even though I've been off Gleevec a while, whether it somehow changes the chemical makeup of our bodies, I can't think of any other reason why I could take statin prior to Gleevec and now can't. I've had two tries of the Ezetimibe and both times I have wound up with leg cramps. I've wondering if I do the Gleevec trick and split the dosage morning and night to see if that lessens the side effects.

Other than the cholesterol med, I don't seem to be experiencing the muscle and joint issues that a number of others who are TFR are experiencing.

I posted on another thread about the rapid onset peripheral artery problems, resulting in severe lower leg cramping, that I am experiencing http://community.lls...kness/?p=186595

 

This happened as I was adjusting my Metoprolol BP med upwards. as my lowered TKI dosage is no longer tempering my blood pressure.  There isn't any doubt in my mind that it is TKI related, especially with respect to age.  As we age we become more susceptible to the side-effects created by TKI's.

 

I'm only hoping I can work my way through this.


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.  

 

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#62 tiredblood

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Posted 17 May 2016 - 12:46 AM

Seems like those of us going for TFR are testimony to the old adage: There is no free lunch! Pain seems to be common as we go through TKI cessation. There are times I'm miserable. Still, I'm happy with my decision to go off Gleevec under doc supervision. FYI: I had no Gleevec reduction before cessation; went "cold turkey" in September. Also, hem/onc did not warn me of withdrawal symptoms, which at times make me miserable - day and night. Doc is happy to see me only quarterly, if all goes well. Visit set for January. I wonder if I'm being properly supervised.

In another matter: I've read that most TKIs will remain in a high insurance tier, even after going generic (mostly this applies to Gleevec.) The financial burden likely will remain. Hope I can avoid it.


That TKI withdrawal syndrome was rough. If I ever come off of it again, I will certainly titrate down before stopping all together.

#63 gerry

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Posted 17 May 2016 - 01:22 AM

I haven't had any issues with muscle and joint pain that aren't directly related to the cholesterol meds.
We have a couple of expert CML docs join the TFR Facebook group. I have asked whether it might depend on length of time on the TKI as in relation to the issue of muscle pain when stopping the TKI. Haven't seen a reply as yet.

#64 Trey

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Posted 18 May 2016 - 08:20 AM

TKI withdrawal pain, although poorly understood, takes various lengths of recovery time depending on the tissue involved.  Bone takes the longest.  Bone reformulation (cell turnover) and associated bone pain would seem to hang on the longest after cessation.  Joint pain due to ligaments and tendons are about the same, and will take a while to normalize.  After that, muscle pains are probably next longest, although the cramping issue should diminish faster than the generic muscle pain issue.  If the thyroid was affected, that might take several months to return to normal.  Other withdrawal symptoms such as skin issues, edema, nausea, etc should diminish more quickly (a relative thing).  If a person has systemic blood pressure and cholesterol issues which had been controlled by Gleevec, those issues should return within a couple months.  Blood mineral imbalances (potassium, magnesium, calcium) should return to normal fairly quickly except for those related to bone remodelling, which would take longer to return to normal. 

 

TKI drugs interfere with signalling processes, so once those signals return to normal there will be some changes back to normal status.  Sometimes that "normal status" can be undesirable, such as high blood pressure, cholesterol, and arthritic pain. 


Edited by Trey, 18 May 2016 - 08:31 AM.


#65 gerry

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Posted 18 May 2016 - 05:10 PM

Brain fog had just started to come on for me in the last couple of months on Gleevec 300mg. It was the first thing to go, followed closely by the slight rash I had on my face. Hair growth returned to normal. Still occasionally get fluid retention, but it is rare as opposed to every day on Gleevec.
Keeping my fingers crossed that the Gleevec trick of splitting the dose will work with the cholesterol med side effect. Will get tested for it in a month or so, so will see if the drug still works being split that way.

#66 gerry

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Posted 18 May 2016 - 05:14 PM

Trey- one of our members has evidence of calcification on some of their joints. If I read the info correctly calcification can occur when your calcium levels are low, which in turn might have been caused by the Gleevec interfering with calcium absorption?

#67 Trey

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Posted 19 May 2016 - 08:25 AM

Such deposits can be the result of injury, reduced blood flow, ageing, and other factors, so it is hard to know if the issue was partially due to TKIs.  Most patients do not experience this, although many can have prolonged ligament and tendon healing times after injury, so there seems to be a connection of some type with ligament and tendon health.  It could be reduced blood flow, or mineral deficiency.  It is probably not low calcium but rather low magnesium which is a calcium "helper mineral". 

 

http://www.caringmed...fic-tendonitis/



#68 gerry

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Posted 19 May 2016 - 05:21 PM

Thanks Trey




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