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My journey into TKI cessation


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#41 threedprof

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Posted 29 February 2012 - 06:34 PM

Thank you, Judy and Dina! I'm very happy to have all of the support everyone is sending I'm sure it counts triple towards the success of this project.



#42 threedprof

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Posted 07 March 2012 - 02:22 AM

After a few weeks of reduced dosage I can say that balance issue I've been having is finally going away! Sure hope my vision problem corrects itself now.

Forgot to mention my memory is improving.



#43 pamsouth

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Posted 07 March 2012 - 02:29 PM

Less stress always better, especially when you have a catastrophic chronic disease.

Best wishes, PamSouth


PamSouth


#44 threedprof

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Posted 15 May 2012 - 01:01 PM

Okay! Here is my 3 month check up results:

WBC - 6.9

PLT - 212

RBC 5.06

Creatinine 1.19 down from 1.34

BUN, ALT, and AST were both in the normal range (never really fluxuated)

I'll have my PCR results in a week and will post the results.

Interesting note:

OHSU's standard PCR test came back negative last time.  However, they ran a nested PCR test and this was their interpretation - "Some, but not all, replicate nested PCR reactions yielded a detectable product.  This inability to detect BCR-ABL RNA in the majority of repeat attempts is the result of an extremely low level of residual BCR-ABL RNA, more than 4 logs below the standardized baseline value (<0.01% on the international scale).  Should this patient be undergoing treatment for a BCR-ABL expressing leukemia, this "Indeterminate" result suggests a "major molecular response (MMR) and is a confirmed good prognostic indicator (2,3).  If thie quantitative level of BCR-ABL RNA has not been determined, this nested qualitative PCR result cannot be used to estimate the amount of persistent minimal residual disease.  A repeat sample may be helpful to resolve this "indeterminate" result.

With my Onc's blessing I've cut my weening short from the original 6 month plan to 3.  I have now been completely off of gleevec for 5 days now and I feel like i'm recovering more and more everyday!



#45 CindyS

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Posted 15 May 2012 - 01:45 PM

Great results!  I'm watching your posts with great interest and I'm glad that you've been able to move to cessation faster than you originally anticipated.  I was diagnosed in August last year and reached MMR after 6 months on 400mg Gleevec and hope to be able to follow a similar path to yours in the future.  Good luck - and thanks for keeping us posted!



#46 CallMeLucky

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Posted 15 May 2012 - 01:50 PM

I'm curious what your expectation is for this test given the commentary on the last PCR test and what your tolerance is for restarting treatment?  I wish the best for you and hope you do not have to go back on treatment, but that last test sounded like they were basically saying -we see something, but it is a very small amount.  If this test is along the same lines or a little more definitive, will you go back on treatment or are you willing to try and live with MMR without treatment and see if your body can keep the disease under control?


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%
 

 


#47 threedprof

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Posted 15 May 2012 - 02:31 PM

With or without that test my plan was to see what my body does with the residual disease.  Unfortunately, the data hasn't been released on the 40% that managed to remain disease-free.  So it's entirely possible that they would've been in my situation when they started.  As some have noticed, there's a possibility for the PCR's to fluctuate while off of Gleevec. so if it trends upwards at an alarming rate (testing everything 3 months for the first year) then I'll hop back on Gleevec OR might try a second gen therapy.  I guess it'll be a wait-and-see situation.



#48 ChrisC

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Posted 15 May 2012 - 10:01 PM

Hi Joel,

Congratulations on taking each of these steps -- big steps, starting with reduced dosage and the reduction of side effects, then going off G entirely! Yay you!

Just a thought about being tested every three months now that you are entirely off G: in the trials they all seemed to test every month for the first six to nine months, for both groups (those that restarted their TKI due to detectable and then increasing PCR levels, and also those that stayed testing PCRU).

You are really comfortable with waiting for three months between tests? Is there a reason you aren't testing every month?

After two years testing solid PCRU, it's now eight months I've been off Sprycel and I'm still testing every month at 0.000; after next month's PCR test I'll switch to quarterly testing after meeting with my onc.

I think it's fabulous that we are getting to the point where, more and more, this avenue of selectively reducing dosage and/or/eventually going off our TKIs is being approved, so that 1) we can be without the side effects!, and 2) the results of our treatment option can be observed and all can benefit.

A big hand to you, feel well, and carry on in good health!

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!

 

 


#49 threedprof

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Posted 16 May 2012 - 07:46 AM

Thank you for the kind words and support, Chris! And congratulations to you, also! 8 months of being off treatment completelyis amazing!! That's very exciting news :). We just got word back from Dr. Druker that he'd like us to test every 6 weeks. My onc's lab is checking to see if my insurance will allow that.

More interesting points of note:

After receiving the results of the nested PCR Dr. Drucker said 1 out of 3 samples showed residual and that he doesn't bother using nested PCRs, for diagnosis, due to too many false positive readings.

He also said he's not a fan of the 200mg Gleevec dose. Likely because there isn't enough data. He wasn't specific as to why he doesn't care for it.



#50 GerryL

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Posted 18 May 2012 - 01:05 AM

Hi Joel,

Can I be dumb and ask what does "nested" PCR mean?

I'm watching your journey with interest as I've just got my second negative and will begin talks with my doc in two weeks about a reduction to 300mg of Gleevec. Interesting Dr Druker not being a fan of 200mg,



#51 threedprof

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Posted 18 May 2012 - 10:26 AM

Not a dumb question :) I had to look it up, myself. Here's a definition from another website

"What is nested PCR? Nested PCR is a variation of the polymerase chain reaction (PCR), in that two pairs (instead of one pair) of PCR primers are used to amplify a fragment.

The first pair of PCR primers amplify a fragment similar to a standard PCR. However, a second pair of primers called nested primers (as they lie / are nested within the first fragment) bind inside the first PCR product fragment to allow amplification of a second PCR product which is shorter than the first one.

The advantage of nested PCR is that if the wrong PCR fragment was amplified, the probability is quite low that the region would be amplified a second time by the second set of primers. Thus, Nested PCR is a very specific PCR amplification."

Cited from http://www.e-biotek....nested-pcr.html

Hope that helps :)



#52 mariebow

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Posted 18 May 2012 - 01:46 PM

Right now this is Greek to me.I am slowly learning about all these terms. So many but so integral to our journey. 



#53 momruns

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Posted 19 May 2012 - 07:34 PM

This discussion board has been very interesting to follow.  I went on 400 of Gleevec when diag. and cut down to 300mg and currently I am on 200mg.  They are taking blood every 2 weeks and I just had my BCR-ABL done on Monday.  I hope it stays at a 3 log reduction.  200 for me is way better than 400. 

Best of luck to you on your attempt to stop the meds.  I do see more people having their medication dose reduced, it is interesting.

Loreta



#54 threedprof

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Posted 20 May 2012 - 09:02 AM

I'm happy to report since I have stopped taking Gleevec my bowl movements no longer have that oily residue in the water! So it must have been the pill cutting that affected me in that way.  I know it's a gross topic but it's something to keep in mind that cutting Gleevec isn't the best for our bodies.



#55 GerryL

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Posted 24 May 2012 - 01:13 AM

Had my appointment with the specialist on the good side he is writing a new script for me for 300mg. He wasn't jumping for joy at the idea of 300mg and offered to switch me to Tasigna. I told him I preferred to try the 300mg of Gleevec. I have another month of 400 mg tablets to take.

I asked him about eventually reducing it to 200 in a year or two if I can maintain my negative, he said no, it leaves the door open for mutations. I asked him how the STIM trials were progressing. He said he had just come back from Montreal a couple of weeks ago - all people on the trial have eventually relapsed.

Anyways, I will soon get my script for 300mg, hopefully reduces my side effects down to nothing and I still get to maintain my negative - that will keep me occupied for a year or so. In the meantime I continue to watch Chris' and your journey with TKI cessation with a lot of interest.



#56 Pin

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Posted 24 May 2012 - 01:51 AM

Wait...huh? All of the people have now relapsed? This is terrible news - can anyone confirm this information?

Also, Gerry that's cool that he would reduce it for you, I hope you see an improvement


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


#57 threedprof

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Posted 24 May 2012 - 04:41 AM

Very interesting, indeed. I'm very surprised that Dr. Drucker did not mention this.  Which begs the question, who's information is most current?  I'd find it difficult to believe Dr. Drucker would be okay with me coming off of Gleevec.  Gerry, You also said his opinion on 200mg leaves the door open for mutations.  I wonder what his stance is for the popular belief that mutations are most likely to occur because it's already there versus not because the cancer is acting like a virus.



#58 GerryL

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Posted 24 May 2012 - 06:24 AM

Hi Pin,

That's part of the problem, I haven't seen any current information on what has happened with the STIM trial. Interesting thing though I believe they are currently running a STIM trial here in Australia. I'm also glad that Joel and Chris are writing about their journey here so we can hear about it first hand.

I've got another month on 400mg as I only had another week's worth and wasn't sure how long it would take the script to get to me, so reordered this morning. That will take me up to two years on 400mg. I'm hoping to lose or at least reduce the joint/muscle pain; fluid retention and fatigue and still keep my PCRU. He's definitely likes Tasigna and asked me why I didn't want to just switch to it. I told him I'm used to Gleevec and I get enough skin issues with it without trying something that is known to cause rashes. I said if I hadn't achieved PCRU then I might have considered it.



#59 GerryL

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Posted 24 May 2012 - 07:04 AM

Hi Joel,

I was a bit confused by the time I left, as I'd read your earlier posts re Dr Druker's interest in your cessation.

He did agree that most of the mutations will appear in the first two years, but also said the 200mg was too low as a maintenance dose and that there was the possibility of mutations appearing. Trey appears to be beating the odds on that one. I'm not sure if there has been much of a study on it for people who have reached PCRU though.

I'm not overly concerned about his comments, just thought I'd report them here. I'm going to sit on 300mg (as long as I can maintain my PCRU) for around two years. Hopefully by that time there will be more data on cessation of TKI or 200mg maintenance dose.



#60 threedprof

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Posted 24 May 2012 - 10:53 AM

I could be off but my agenda detector is picking up some activity. Is your doctor a specialist, by chance? I don't know your history but it might be worth keeping an open mind about choosing another onc.






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