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#21 scuba

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Posted 27 July 2016 - 02:26 PM

http://www.oncologyn...article/458044/


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#22 gerry

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Posted 27 July 2016 - 06:54 PM

Not exactly sure what this sentence indicates. Does it mean for 50% the pain continued?

 

"For patients who had to restart TKIs, withdrawal syndrome disappeared in 50% of the cases after a median of 3 weeks, Dr. Rousselot concluded."



#23 tiredblood

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Posted 27 July 2016 - 07:38 PM

Not exactly sure what this sentence indicates. Does it mean for 50% the pain continued?

 

"For patients who had to restart TKIs, withdrawal syndrome disappeared in 50% of the cases after a median of 3 weeks, Dr. Rousselot concluded."

I think it means that 50% of patients continued to experience pain beyond 3 weeks.  The word median would mean average, wouldn't it?



#24 Buzzm1

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Posted 27 July 2016 - 07:39 PM

Buzz, in response to your questions:
After diagnosis I went to MD Anderson since they were among most advanced in CML studies. After failing on interferon + Ara-C I qualified for TKI trial with dosage at 600 mg. That succeeded within a normal time so Dr Talpaz kept me at that level. We had a mutual understanding that I was still a research subject over the years even as they developed the more advanced TKI's. I guess it is clearer to me now that long term effects of Gleevec was an important topic for researchers. About 3 years ago I switched to another center that was more accessible than Houston since my condition was stable and had been pcru for years. It was at the new research center that Doc recommended 400.

My Dr also told me about LAST that she is coordinating at this center so I signed up. So now I've discovered that "Life After Stopping TKI" is miserable. I owe my life to this drug so my participation in the studies to further the body of knowledge is not a problem. In this next step I guess we will learn more.

Alajazz, you have taken a very large amount of Gleevec; (12 years @ 219 grams/year and 3 years @ 146 grams/yr); over three times as much as I have. 

 

Do you know if the results of that particular Novartis study, that you were part of, have ever been published?


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#25 Alajazz

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Posted 27 July 2016 - 10:33 PM

Buzz, the results of the early trials were published and led to early approval by FDA. My records are in deep storage so don't have specifics, only fading memories. I was diagnosed in Nov 98 by a small town doctor. I knew my chances were slim so started doing my own research and found a paper that Dr Brian Druker had written about his research on TKI in animals and trying it on humans. When I called him he actually answered the phone and was kind enough to refer me to Dr Talpaz at MD Anderson who was involved in setting up early trials on the substance called STI-571. Dr T had me come to Houston and discussed my options. As previously stated the STI-571 trial was only available to those who failed on interferon or couldn't tolerate it. It took about a year to demonstrate failure so it would have been around early 2000 that I started on the trial. FDA approved it on fast track in 2001 I believe.

Re. Dosing, my recollection is that I went through some tests early on when I had to live in Houston for 2 months to start the study. This included tests to determine absorption rate and best dosage to start. Lower doses were discussed but it was felt that 600 would be best for me. Regular follow up tests included bone marrow at 3 month then 6 month intervals. When discussing results in first few years it was always a concern about a secondary chromosome abnormality called 5q- that was present in addition to the Ph chromosome. At first Dr T thought this was indicative of accelerated phase CML but the deletion was detected even after my Ph+ was under control. This story is getting too long and boring but eventually the docs concluded that the 5q- abnormality must have preceded CML, not a result of it. This complication likely contributed to decisions to keep me at 600.

It is shocking, btw, that my system has absorbed so much TKI compared to your numbers. Reports like the one quoted by scuba are indicative of the prevalence of withdrawal syndrome. In discussion with my onc in Seattle today, she agreed to make this a higher priority in discussion with colleagues at ASH in Dec. Also, we did finalize the decision to restart at 300 mg. If my improvement is realized within the 3 weeks quoted in article above, I will be a happy camper. Will let you know.

#26 Buzzm1

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Posted 27 July 2016 - 11:40 PM

Alajazz, you have a very interesting story, in being part of the initial drug trials, and being put on a high dosage.  The oversight comes in being left on that high dosage, or any dosage, for such a long period of time.  Of course STOP TKI trials didn't gain momentum for a decade, or so, and even now, oncologists are slow in promoting early dose reduction.  These are toxic meds and the less we take out of necessity, the better off we are likely to be in the long run, especially true for those of us who are up in years.  Younger people have a much greater tolerance.

 

Wishing you success in finding relief for your withdrawal symptoms and hoping I don't encounter any more along the way ... they are difficult to deal with.   


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#27 r06ue1

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Posted 28 July 2016 - 11:15 AM

Alajazz, that is a great story, I can't believe you have been on the drug so long, hoping that the withdrawal symptoms fade for you soon.  

 

And that is awesome that the Oncologists will be discussing that at ASH, I think there will be more published data coming soon related to that.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#28 Alajazz

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Posted 28 July 2016 - 01:03 PM

Well, I do appreciate the well wishes, and have to say that my hopes and encouragement goes out to y'all too. It is clear to anyone passing through this forum that every person has a unique story and challenges. There were many years after I became pcru and comfortable with the drug that I had no desire to dwell on the tougher times. My interest in keeping up with the current treatments and advancements just faded away. Therefore much of the reason for maintaining status quo was my fault.

I took my first dose this morning - easy to remember because it is my wife's birthday. She has been so patient with me during the trying times.

#29 gerry

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Posted 28 July 2016 - 05:03 PM

I think it means that 50% of patients continued to experience pain beyond 3 weeks. The word median would mean average, wouldn't it?

yeah I get that, but the three week comment doesn't actually mean a lot. I am unaware of any other TFRers experience the joint pain and have it resolve itself in less than three weeks.

#30 story

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Posted 29 July 2016 - 10:23 AM

Hi all, I am a year into the LAST study and still have RA like pain in my fingers, most of the other joint pain has receded. Am finally getting some hair back on my arms and legs after a full year off the Tas. I am really greatful to be rid of the CML. The withdrawal syndrome is a small price to pay for a cancer cure with minor side effects. My mother is going thru her third round of chemo in as many years for colon cancer and I feel very fortunate to be where I am today after Dx in may of 2011.

#31 mikefromillinois

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Posted 29 July 2016 - 11:32 AM

The withdrawal syndrome is a small price to pay for a cancer cure with minor side effects.

 

Amen to that.  I have been dealing with on and off "withdrawal" symptoms for 14 months.  Honestly, since my CML diagnosis I have been "blaming" a lot on the meds, the disease, and now the withdrawal.  I'm sure a lot of my aches and pains have nothing to do with any of those things and are instead due to aging, new ailments, post traumatic arthritis, lifestlye, eating habits, or other things.



#32 gerry

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Posted 29 July 2016 - 04:39 PM

If the gleevec plays a role in reducing normal arthritic pain for those on it, then perhaps for some it might be an age related thing for some. But the pain seems to be an upper body thing, so not sure if that is a normal occurance for people.

I had a small op recently and had to go off all my supplements, which included glucosamine, I have returned to taking it again as my knee started to give me pain walking up stairs.

#33 AllTheseYears

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Posted 30 July 2016 - 06:06 PM

I'll just add my story to the mix.  I, too, have been on Gleevec for 15 years, although I tried to achieve treatment-free remission late last year. (I was PCRU for more than 14 years.)  After cessation, withdrawal pain roared in like a train.  Although I've had arthritis since my 20s, the withdrawal pain wasn't confined to joints.  Both arms ached horribly, from wrists to shoulders.  Leg and back pain were so bad I could hardly walk.  Thankfully, the withdrawal symptoms subsided greatly after four months.  I felt the best I'd felt in a long time (and looked better, I have to say!). Unfortunately, CML came back just as forcefully as the withdrawal symptoms had.  So...I've been back on Gleevec 400 mg. since March. TFR didn't work for me.  I am now just short of PCRU, but again saddled with fatigue, edema and other side effects we all hate, but it's nothing like the horrors I experienced for a while during cessation. 



#34 Buzzm1

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Posted 30 July 2016 - 07:30 PM

Both arms ached horribly, from wrists to shoulders.  Leg and back pain were so bad I could hardly walk.  

AllTheseYears, absent the back pain, your withdrawal symptoms sound very similar to what I've experienced during my Gleevec dosage reduction.  I'm still having problems in my lower legs, but the gout-like effects in my feet are gone for now.  Between my shoulders, arms, and feet, it made for some sleepless nights.  The side-effects, from the Gleevec, and during withdrawal, are likely worse with age.  


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#35 tiredblood

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Posted 30 July 2016 - 08:46 PM

This past January, when I experienced TKI withdrawal syndrome, I inquired from one expert in the field about it and below is what he had to say about it. If I ever go off of it, I will certainly do what he suggested.

 

The withdrawal syndrome is difficult to treat

If common m├ędications are not efficent, the best results are observed with low dose steroids (10 to 20 mg/d) followed by a slow dose decrease



#36 gerry

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Posted 30 July 2016 - 09:07 PM

Predisone seems to work while TFRers are on it but from comments I've read the pain returns when it is stopped.
There also doesn't seem to be an exact time you will experience it for after stopping Gleevec. I will ask if this is an issue that is only Gleevec related.

#37 tiredblood

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Posted 30 July 2016 - 09:32 PM

Someone should do research to see if mice who go off the drug become TKI junkies to relieve the pain when the drug is available to them.  :rolleyes:



#38 Alajazz

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Posted 31 July 2016 - 09:41 AM

Tiredblood, when you mentioned TKI junkie it struck a cord with me, as I've thought of the very same term but didn't want to think it. When I was first going through withdrawal I looked up the symptoms and it wasn't much different than what opioids junkies go through. My experiment in restarting will give me another data point to determine how close I am to becoming a junkie. Given a choice today of living in withdrawal or the way I felt before stopping, my choice would be gimme the drug. Sounds like a junkie, huh?

Re. Prednisone, it did help my withdrawal pains but as mentioned it is only temporary. My onc consulted with others then decided to try it in order to buy time or jump start recovery. I think it's worth a try for anyone going through it.

#39 tiredblood

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Posted 31 July 2016 - 05:15 PM

Tiredblood, when you mentioned TKI junkie it struck a cord with me, as I've thought of the very same term but didn't want to think it. When I was first  going through withdrawal I looked up the symptoms and it wasn't much different than what opioids junkies go through. My experiment in restarting will give me another data point to determine how close I am to becoming a junkie. Given a choice today of living in withdrawal or the way I felt before stopping, my choice would be gimme the drug. Sounds like a junkie, huh?

Re. Prednisone, it did help my withdrawal pains but as mentioned it is only temporary. My onc consulted with others then decided to try it in order to buy time or jump start recovery. I think it's worth a try for anyone going through it.

The times I've felt the absolute worst is right after I started taking it, beginning about 4 days or so after I went off of it (drug holiday), and then a couple of weeks ago (approx. 6 mo. after restarting at 1/2 dose).  A couple of weeks ago, I thought if it kept up, I'd be on a rollator walker in no time. It was like my body locked up. Not easy to fake feeling good around those who don't know you have CML. 

 

I didn't know there was such a thing as TKI withdrawal syndrome-- doctor didn't mention it.  I was blindsided by it.  In hindsight, I would have titrated up when starting it and tapered down when going off of it.






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