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Question for Cessationists: Does the fatigue leave you?


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#41 gerry

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Posted 10 January 2016 - 03:29 AM

Hi Buzz,

I am two years TFR so have things in hand.  Will work to get 3 monthly testing. 

I only popped in to let people know it is not all fatigue and muscle pain for everyone stopping, for some of us life returns to normal, though we are a bit older as Lucky mentioned and other issues take their place.  :)



#42 pammartin

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Posted 10 January 2016 - 04:30 AM

After two years off TKI in March I have to admit the pain and symptoms of my body can no longer be explained away by a TKI. I am 53. I am going to have some issues if for no other reason than my age and body abuse over the years. Although Sprycel saved my life and might again, it has left me with a number of serious and irreversible medical problems. Take the TKI until you can safely try to stop treatment and be glad it is available. If you develop effects from the TKI attack them with the same theory. Fix as best you can what is damaged. Everyone has their own ideas, thoughts, plans, ideas, and goals. Follow your own because we are each like no other.

#43 Buzzm1

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Posted 10 January 2016 - 10:07 AM

From the STOP studies http://bit.ly/1XyGyL5: there are a lot of variables, but after two years PCRU ... 

 

the average odds of successfully stopping are 50/50 and while there are no absolute guarantees, TKI response, and duration of response, do add to the odds of remaining TKI-free

 

At least one of the STOP studies stated that almost all, out of those who relapse (relapse is defined as losing MMR), do so within the first four months.

 

All STOP studies state that almost all who relapse, lose MMR, do so within the first six months.

 

A number of people in the studies lose PCRU, but don't lose MMR.

 

Relapse beyond six months is a very low percentage.

 

With second generation TKI's, the odds of successfully ceasing TKI treatment after just one year PCRU, aren't that much less than after two years PCRU

 

Dasatinib Discontinuation trial http://bit.ly/1liFp8M November 9, 2015

from an initial 63 with confirmed deep molecular response for at least 1 year
after 6 months, 31 (49%) treatment free
after 20 months, 30 (47.6%) still treatment free
 
STOP-2G-TKI study http://bit.ly/1NtPP2d August, 2013
52 patients required prior 2nd generation TKI treatment (Dasatinib, Nilotinib, Bosutinib) with a median of 6.5 years of TKI treatment and a median duration of MR4.5 of 2.3 years ... 
28 of 52 (54%) remained treatment free 

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

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#44 story

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Posted 13 January 2016 - 11:57 AM

Pammartin, I do know lls has a new financial assistance program to help with PCR tests. I had a heck of a time getting my insurance co to pay for them every three mos while on meds. Was a relief to be on the LAST study that pays for tests. It is ridiculous we have to go broke with copayment and deductibles just to live..

#45 gerry

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Posted 21 January 2016 - 07:38 PM

Another option they are looking in to for managing TKI treatment

 

Managing chronic myeloid leukaemia in the elderly with intermittent imatinib treatment

The aim of this study was to investigate the effects of a non-standard, intermittent imatinib treatment in elderly patients with Philadelphia-positive chronic myeloid leukaemia and to answer the question on which dose should be used once a stable optimal response has been achieved. Seventy-six patients aged glyph.gif65 years in optimal and stable response with glyph.gif2 years of standard imatinib treatment were enrolled in a study testing a regimen of intermittent imatinib (INTERIM; 1-month on and 1-month off). With a minimum follow-up of 6 years,

http://www.nature.co...bcj201575a.html



#46 kat73

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Posted 21 January 2016 - 08:08 PM

Wow, thanks Gerry!  I'm printing this article out and taking it to my onc.  Hadn't even heard of INTERIM.  More and more I'm beginning to think I don't want to spend my last decades with no energy and eyes that look like The Donald's.


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.


#47 Buzzm1

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Posted 21 January 2016 - 08:13 PM

Wow, thanks Gerry!  I'm printing this article out and taking it to my onc.  Hadn't even heard of INTERIM.  More and more I'm beginning to think I don't want to spend my last decades with no energy and eyes that look like The Donald's.

Kat, maybe just take the link ... Managing chronic myeloid leukemia in the elderly with intermittent imatinib treatment http://bit.ly/1OJMAPq


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


#48 kat73

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Posted 21 January 2016 - 08:15 PM

Too late - that's OK - I use the References pages for scratch paper! :)


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.


#49 ARTWOMAN

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Posted 22 January 2016 - 03:22 AM

Hello!  I am newish to CML since being diagnosed in October of 2015.  I am taking Gleevec.  As a newbie I have been told by two oncologists that I will always need to be on chemotherapy or else my chronic phase CML will return big time, once I am in remission. I can understand reduction but cessation is in opposition to what I have been told and what I have read.  Does cessation refer to a change in chemo meds or stopping chemo altogether?

 

As for fatigue, oh yes, I am learning to know it well.  I already had arthritis and now I am really sluggish. Looking forward to spring and more walks outside to counteract my symptoms and to feel better.

 

Thanks!  I am enjoying the humor that some of you have. Chemobrain lives!  :P



#50 mscl

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Posted 22 January 2016 - 08:31 AM

I'm joining the reductionist party soon. Sprycel 100 mg to 70 mg, still had PE. Going to try 59 mg next. I'm not brave enough for the Tasigna change.
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.

#51 Buzzm1

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Posted 22 January 2016 - 10:27 AM

I'm joining the reductionist party soon. Sprycel 100 mg to 70 mg, still had PE. Going to try 59 mg next. I'm not brave enough for the Tasigna change.

mscl, welcome to the reductionist party.  the odds are good that you will be able to maintain PCRU on 50mg of Sprycel.  when do you test again?


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


#52 Trey

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Posted 22 January 2016 - 10:43 AM

Cessation means stopping all drug therapy.  Some people have been able to do this, but there is no long term data.  We also do not know why it is possible for some people and not for others.  As mentioned, drug reduction after deep response is often a better option for the majority of patients.

 

I can certainly understand why patients get excited about stopping therapy, but I want to insert a caution about the statistics.  Any 50/50 success discussion assumes a patient can go long term at MMR levels of the disease.  That is not a level I would personally be comfortable with.  So I don't think any discussion of achieving MMR and staying there is reasonable.  Statistics for long term maintenance of PCRU after cessation are not available, but short term data shows the odds of this are not very high.  Those who are in clinical trials for cessation are advancing the knowledge base, and that is a good thing, so I support that.  But the excitement level is not warranted by the data.

 

For those who attain PCRU of 4.5 log reduction or deeper, and also maintain it for no less than 2 years, cessation is more reasonable, but odds of long term success are not high.  Drug dosage reduction is probably a better option with a significantly higher chance of success and can provide relief from many side effects.

 

I have urged caution about this issue because the excitement levels do not match the reality of what has been demonstrated.  There is far too little data, especially long term data.  So most of us should expect to take the drug over the long term, but hopefully at reduced dosages.  Also, other drugs are coming along such as ABL001 which could have a much better side effects profile if it works out.  Those are the issues I get excited about. 



#53 rcase13

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Posted 22 January 2016 - 12:19 PM

If it excites Trey then it excites me. But who can resist the allure of stopping the TKI!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#54 kat73

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Posted 22 January 2016 - 05:44 PM

Trey - I'm curious as to why you would not be comfortable with a stable MMR?  I thought progression-free survival is linked to achieving CCyR, so MMR is even better than that.


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.


#55 Buzzm1

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Posted 22 January 2016 - 07:59 PM

Treatment-free remission - how well do people do? http://bit.ly/1QoMMbB

 

long-term stop-study-data (of which there is very little information available) showed that the percentage of relapses had increased to as high as 70%... 

 

this indicates that the odds of remaining TFR long-term are low, and even if we achieve TFR, the odds are high that we will have to resume a TKI dosage at some time in our future.


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


#56 ChrisC

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Posted 22 January 2016 - 08:31 PM

If I had been part of a trial (couldn't afford it, as none were local in 2011), my data would have included that 11 months after dx (Oct. 2008, WBC 459.xx), I was PCRU (0.000). Never once has it shown any other result.

 

After two years PCRU I got permission, from the Stanford hema/onc I was referred to, for beginning my own personal trial without taking a TKI. That was in Sept. 2011. Happily, my test results have continue 0.000, always. Especially nice is that testing has been only twice a year for the past couple of years :)

 

Only mentioning it again to keep hope alive, for folks who might be feeling discouraged by the data being mentioned: sometimes, miracles DO happen, and it might happen for YOU! 

 

My hearty congratulations to all who have found that their test results bring them to a possible entrance into TFR trials. These trials allow the entire world CML community to have hope: for years, TFR wasn't even mentioned.

 

I look forward to reading continued reports in finding not only good results of TFR trials, but especially of soon reading of a cure for CML for all; then, most hoped-for, is for finding the ultimate: a simple prevention of CML ever developing. Woo!!

 

Wishing the best of life and good health to all,

 

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#57 mscl

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Posted 23 January 2016 - 05:36 PM

mscl, welcome to the reductionist party. the odds are good that you will be able to maintain PCRU on 50mg of Sprycel. when do you test again?


Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.

#58 mscl

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Posted 23 January 2016 - 05:36 PM

April.
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.

#59 Buzzm1

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Posted 23 January 2016 - 08:15 PM

In regard to: "Does the fatigue leave you?" as a reductionist I can unequivocally say:

"yes it does" but very, very, slowly and perhaps not without a lot of other pains and problems.

for me, most, but not all, could be attributed to the C4-T1 damage in my neck ... 

the question for me now, at my age, is how much energy I'll be able to recoup, if and when I reach cessation


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


#60 r06ue1

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Posted 25 January 2016 - 06:31 AM

Good luck on your next test Buzz, hope you reach your goal.  :)


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





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