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Big Day today ... I stopped taking Sprycel for 30 days to test remission


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#1 scuba

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Posted 10 March 2015 - 03:09 PM

I had my 3 month PCR blood draw today rounding out my personal 30 day Sprycel stopping experiment.

 

I had decided to test whether I can hold my "undetected" or near undetected PCR level after stopping treatment. I was going to re-start my low dose (20mg), but my oncologist suggested I hold off until the results are back (later this week or early next). So my experiment will continue for a few more days.

 

I am surprised however at my CBC results which I received a few hours later today. They were little changed.

 

In fact, my platelets actually went down a little bit (still very normal. I had expected Platelets to be the canary and shoot up if CML was expanding) and the rest were like they have been for over a year. Red blood did creep up a tiny amount, but I am still anemic according to the data. White blood cells are normal especially the all important Neutrophils. 

 

Most surprising to me was my vitamin D level. It came in at 55 ng/ml (solid normal). I was shooting for 80ng/ml because I am taking 10,000 IU's of vitamin D3 per day. Apparently that is not enough. I will increase it further and test again in a month or so. I am counting on high normal vitamin D to be therapeutic against CML (keep it from growing since I no longer take Sprycel).

 

I am very much looking forward to seeing if my PCR remains unchanged. If it is unchanged, Dr. Cortes will condone another 30 day trial. 30 days at a time with no drug. 

 

Very cool.


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"


#2 rcase13

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Posted 10 March 2015 - 04:48 PM

I love to read threads like this. Good luck!

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!


#3 pammartin

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Posted 10 March 2015 - 05:25 PM

Great news, here is to hoping those numbers stay were they should. Best of luck

#4 scuba

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Posted 10 March 2015 - 05:37 PM

Great news, here is to hoping those numbers stay were they should. Best of luck

 

I post here and share my approach in that it might be useful to others. I have no fear of CML (even if it kills me) - because it won't kill me - something else will. So I feel unconstrained to experiment. And what if...what if, increasing vitamin D to therapeutic levels (80ng/ml) and taking lots of Curcumin (blocks cancer pathways) can cause my CML to just stay the same or even go away ("below detection"). Maybe - there is some learning that can be done here.

 

Human made drugs can be dangerous, but save the day. Nature made drugs - including the sun - have been around a long long time and may have been forgotten. I regret not knowing much about vitamin D before getting CML and not knowing much about Tumeric (Curcumin). But I have decided that nature has provided us a lot of nutrition to keep us going into old age. Nutrition from the soil is where I focus to keep cell biology healthy. I may or may not succeed - but you are all witness to the journey.

 

I am your experiment.


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"


#5 dede5

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Posted 10 March 2015 - 07:44 PM

I often think about trying to stop treatment to see what happens. My CML has been undetected for about 2 years and I'd like to know, although so far my curiosity hasn't been strong enough to try. Just want to wish the very best to those who try, and maybe one day I'll be as brave as you are.


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#6 mariebow

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Posted 10 March 2015 - 10:52 PM

That is great Scuba, I really want to cease my tasigna one day.



#7 scuba

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Posted 10 March 2015 - 11:28 PM

I often think about trying to stop treatment to see what happens. My CML has been undetected for about 2 years and I'd like to know, although so far my curiosity hasn't been strong enough to try. Just want to wish the very best to those who try, and maybe one day I'll be as brave as you are.

 

It's more curiosity than anything else. The STIM trials gave me the confidence to try. Without trying there is no knowing.


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"


#8 PhilB

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Posted 11 March 2015 - 10:33 AM

I am surprised however at my CBC results which I received a few hours later today. They were little changed.

 

In fact, my platelets actually went down a little bit (still very normal. I had expected Platelets to be the canary and shoot up if CML was expanding) and the rest were like they have been for over a year. Red blood did creep up a tiny amount, but I am still anemic according to the data. White blood cells are normal especially the all important Neutrophils. 

 

1 month into stopping from PCRU the only thing your blood counts could possibly show would be the removal of any side effects from the drugs.  That may be why the RBC is starting to creep up.  Even if you were losing response it would take much longer than a month for that to be visible in a CBC.

Fingers crossed though that the PCR comes back U and the experiment can continue.



#9 scuba

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Posted 11 March 2015 - 10:47 AM

1 month into stopping from PCRU the only thing your blood counts could possibly show would be the removal of any side effects from the drugs.  That may be why the RBC is starting to creep up.  Even if you were losing response it would take much longer than a month for that to be visible in a CBC.

Fingers crossed though that the PCR comes back U and the experiment can continue.

 

When I asked Dr. Cortes if I can test stopping Sprycel for 30 days, he advised against it, but supported me. Now that the 30 days have come and gone, I asked if I should resume just in case my PCR comes back with a jump. To my surprise, he told me - no, let's wait. That was interesting. No doubt he knows that CML is a slow disease and that expansion of bcr-abl, if it is to occur, will do so slowly at first (take years probably to get back to "disease" symptoms). I am 50-50 that my PCR will remain the same - I half expect I will experience a jump (1/2 to 1 log). But if no jump - I suspect Dr. Cortes will advise me to continue the experiment.

 

I can't imagine that CML cells are increasing (at the stem cell level) such that FISH would increase without PCR first ticking up substantially.


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"


#10 Trey

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Posted 11 March 2015 - 09:06 PM

This is what "dancing with the snake" feels like.  50/50 chance.

 

https://www.youtube.com/watch?v=8Xjr2hnOHiM

 

 

https://www.youtube.com/watch?v=V7Nci-GVuHE


Edited by Trey, 11 March 2015 - 09:10 PM.


#11 Billie Murawski

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Posted 11 March 2015 - 09:29 PM

I ain't dancing with no snakes! Don't mess with Clint and don't mess with the Big C!



#12 scuba

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Posted 12 March 2015 - 01:48 AM

This is what "dancing with the snake" feels like.  50/50 chance.

 

https://www.youtube.com/watch?v=8Xjr2hnOHiM

 

 

https://www.youtube.com/watch?v=V7Nci-GVuHE

 

"Click ..."


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"





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