Absolutely brilliant news kat73!
So pleased for you... and that's confirmation that 50mg Sprycel is a potent dose for you.
Cessation - Relapse - Restart - Regained MMR - Recovery/PCRU
Started by
Buzzm1
, Apr 12 2017 11:37 AM
104 replies to this topic
#21
M.A.
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Posted 17 May 2017 - 03:36 AM
CML diagnosed April 2016
Type One Diabetes diagnosed April 1980 (age 12)
BCR-ABL (IS)
46.77 April 2016
3.568 July 2016
0.076 Oct 2016
0.016 Feb 2017
0.0079 April 2017
0.014 July 2017
0.019 Sept 2017
0.011 Nov 2017
0.019 Jan 2018
Sprycel
100mg April 29 - September 22
75mg September 23 - October 28
50mg October 29 2016 to present
#22
kat73
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Posted 17 May 2017 - 10:57 AM
Thanks M.A. - I hope it will be enough to continue downwards.
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.
#23
Floa7
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Posted 17 May 2017 - 07:28 PM
My son and I both have CML for 5 years. He stopped his Sprycel 70 mg and was back on it after three months off.
I stopped taking Tasigna 600 mg 4/72017 I go for blood work tomorrow, Wish me luck with good results.
Great News Happy Dance Time I got my 30 day results back and they were 0.008 That was for 30 days off of Tasigna. I go back the middle of June and have it checked again.
1 2012 CML detected Started Gleevec 400 mg
In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto
2 2015 Tasigna 600 mg/day
I have been PCRU for 2 years and stopped Tasigna 4 7 2017
5 8 2017 results 0.008
5 30 2017 results 0.028
6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1
My son
11 2011 CML detected Started Gleevec 400 mg
He went 2 1/2 years on gleevec and lost PCRU
Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0
He went back onto Sprycel and now is PCRU again
3 16 2017 results 0.008
6 1 2017 results 0.002
#24
Buzzm1
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Posted 17 May 2017 - 07:46 PM
Great News Happy Dance Time I got my 30 day results back and they were 0.008 That was for 30 days off of Tasigna. I go back the middle of June and have it checked again.
updated http://bit.ly/2ql792c
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
#25
cleocans
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Posted 22 May 2017 - 01:37 PM
Just got my results back from my latest PCR on May 16th. 5 months after I restarted 100mg Sprycel. I am not detected once again!!
On 2-20-2017 my first test after restarting I was 0.21%
#26
scuba
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Posted 22 May 2017 - 01:42 PM
Just got my results back from my latest PCR on May 16th. 5 months after I restarted 100mg Sprycel. I am not detected once again!!
On 2-20-2017 my first test after restarting I was 0.21%
Perhaps you could start a dose reduction plan to see how low a dose you can take to keep you PCRU.
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"
#27
Buzzm1
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Posted 22 May 2017 - 01:55 PM
Cessation 09-27-2016
Relapse 11-xx-2016 0.33
Confirmation 01-xx-2017 1.7
Restart 01-xx-2017 S 100mg
Interim 02-xx-2017 0.21
PCRU 05-16-2017
edited to add: Discussion Forum Cessation Study
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
#28
kat73
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Posted 22 May 2017 - 02:51 PM
cleoclans - This is terrific! Gosh I hope I can get there.
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.
#29
Buzzm1
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Posted 23 May 2017 - 02:13 PM
Cessation 04-07-2017
Detected 05-08-2017 0.008
Interim 05-30-2017 0.028
Relapse 06-30-2017 0.30
Restart 07-01-2017
Discussion Forum Cessation Study
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
cleocans
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Posted 23 May 2017 - 08:52 PM
@ Scuba I will be talking about dose reduction at my next appt in 3 months. He has already mentioned it to me but we both wanted me to get to undetectable again first!
#31
Frogiegirl
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Posted 25 May 2017 - 02:17 PM
Update PCR from bcr-abl on 05/19/2017 two months on sprycel 100 0.0213
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#32
Buzzm1
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Posted 25 May 2017 - 02:24 PM
Thanks Frogiegirl. Congratulations on regaining MMR!
updated: Frogiegirl 11-08-2016 cessation attempt
edited to add: Discussion Forum Cessation Study
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
#33
Buzzm1
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Posted 29 May 2017 - 12:07 AM
mdszj, assuming you have remained undetected through six months of TKI cessation, and despite not being in a trial, will you be testing every two months, for the next six months, per trial protocol?
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
#34
Kali
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Posted 29 May 2017 - 10:11 AM
My dose of Sprycel 100 MGM per day has been reduced to 70 MGM per day. My onc was against this idea for a long time, but is now doing this with some of his patients.
Was just tested since reducing dose and was undectectable, but limit of detection is 0.0069
Was just tested since reducing dose and was undectectable, but limit of detection is 0.0069
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#35
AdamJ
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Posted 29 May 2017 - 10:47 AM
Kali, how long were you undetected before the dose reduction? I am hoping to get the same reduction.
3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU
#36
Kali
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Posted 29 May 2017 - 11:39 AM
Diagnosed June 2014. MMR .1 by Sept. 2014. Maintained that number or below (numbers dropped to .04 and then back to .1 every 3 months of testing. Then, on10/7/15 was 0.00000
10/20/15 was 0.0126
1/4/16 <0.0092
7/11/16 <0.0069
10/3/16 0.0000
1/9/17 <0.0069
5/12/17 0.0000
These are real time PCR tests and the limit of detection is 0.0069
I don't know if 0.0069 is considered detectible as as a weak positive or if it is considered nondedectible.
A more sensitive test may find BCR ABL1 still in my body. I am unsure about sorting this all out.
I hope to maintain nondedectible on 70 MGM for awhile and possibly eventually reduce to 50 MGM in a year or two.
About 2 months ago went off the drug completely for two weeks due to mild PE. Then, reduced to 70 MGM. Felt like my old self when off the drug. Had super energy and no symptoms of any kind.
No shortness of breath! Felt great!
When I went back on the 100, my fatigue and low energy came back. That is when we reduced to 70 MGM. I am noticing my energy is getting better again. I don't have the fatigue as much.
I hope all this information is helpful to you.
10/20/15 was 0.0126
1/4/16 <0.0092
7/11/16 <0.0069
10/3/16 0.0000
1/9/17 <0.0069
5/12/17 0.0000
These are real time PCR tests and the limit of detection is 0.0069
I don't know if 0.0069 is considered detectible as as a weak positive or if it is considered nondedectible.
A more sensitive test may find BCR ABL1 still in my body. I am unsure about sorting this all out.
I hope to maintain nondedectible on 70 MGM for awhile and possibly eventually reduce to 50 MGM in a year or two.
About 2 months ago went off the drug completely for two weeks due to mild PE. Then, reduced to 70 MGM. Felt like my old self when off the drug. Had super energy and no symptoms of any kind.
No shortness of breath! Felt great!
When I went back on the 100, my fatigue and low energy came back. That is when we reduced to 70 MGM. I am noticing my energy is getting better again. I don't have the fatigue as much.
I hope all this information is helpful to you.
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#37
AdamJ
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Posted 29 May 2017 - 06:44 PM
Thank you Kali, that is quite helpful. With less than a year of PCRU, I think I might be pushing my luck trying to get a reduction. One onc mentioned mutation as a concern and the other said maybe in the distant future. After my early liver issues, I have not run into many side effects, but I am starting to notice my hair thinning significantly as well as some minor pain in my legs which oddly does not appear to be in the muscles or at the joints. I was hoping that a reduction might alleviate these while also reducing the chances of other side effects (I am paranoid about both PAH and PE).
3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU
#38
kat73
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Posted 30 May 2017 - 11:30 AM
AdamJ - I hear you on the fear of PAH. I just had an echo just to be sure, and there is nothing wrong. But just lately I've been feeling the old signs of a pleural effusion again, and I think I'm going to have to go get this checked out. When I went back on Sprycel after my break for the pleural effusion, I went back on a reduced dose - 50 mg - and although I have felt all the old side effects come back, they are definitely more bearable and less intense than before. I still wonder if there might be a cumulative effect, though. When I switched from Gleevec to Sprycel, I had a great improvement and this lasted for several years. Then things gradually crept up (fatigue, depression, edema) until the pleural effusion was diagnosed and I went off the Sprycel. It was the most glorious parting of the dark clouds imaginable! And I felt like my pre-2009 self again for the first time. Anyway, I have experienced how a dose reduction (or change) can really, really make a difference.
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.
#39
mdszj
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Posted 12 June 2017 - 04:01 PM
Buzz
Just wanted to check in and let you know I just got my pcr results back: still undetectable as of 6/5/17 so still hanging in for 7 mo. so far. I will say one thing - if/when I go back on sprycel it will be 50 mg max.
thx
dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16
#40
Buzzm1
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Posted 12 June 2017 - 04:21 PM
Buzz
Just wanted to check in and let you know I just got my pcr results back: still undetectable as of 6/5/17 so still hanging in for 7 mo. so far. I will say one thing - if/when I go back on sprycel it will be 50 mg max.
thx
mdszj, not to worry, with any amount of luck you won't have to go back on Sprycel,
but if you do, 20mg would suffice. Congratulations on your continued success.
updated: Discussion Forum Cessation Study
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
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