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


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#21 snowboots

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Posted 17 March 2015 - 07:37 PM

Such great news for ALL of us! How fortunate we are to have results from those who go

before us. I am sure you will keep us all posted. Thanks for sharing your knowledge.



#22 Melanie

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Posted 17 March 2015 - 11:09 PM

Congrats Scuba! Love hearing your success with alternative treatments. I do believe a healthy and super charged immune system is your best defense against this disease once your PCRU. It's getting to that response that causes some of us to take such different journeys, otherwise we wouldn't need so many different TKI''s. It's knowing there are many options that give hope and your treatment path is another great example. I'm happy it's working so well for you and you're willing to share your experience with us.
Note to Froggiegirl... I tried adding the curcummin to my treatment plan like Scuba, but for me it had an adverse effect. My platelets dropped way down and stayed dangerously low. My Onc said the curcummin could be the reason so I stopped. Platelets went back up, but have never been normal. It was probably just me because I have chronic low platelets anyway and the curcummin just made them worse.
As for Vit D, I'm a big advocate of it and try to get as much "natural" exposure as I can everyday. I always feel better for it!๐ŸŒž
Looking forward to your next PCR results Scuba! Best to you!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#23 gerry

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Posted 18 March 2015 - 12:22 AM

I've tried it for joint pain and wound up with extra bruises, for some of us it plays up with the platelets.



#24 Lisa Lisa

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Posted 19 March 2015 - 05:25 PM

That's great news, Scuba. Congratulations!!

Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15

     22%  5/15     0.13% 6/15   PCRU attained 9/15

Initial dose Sprycel 100 mg 3/15  Lowered 80 mg 5/15   Lowered 50 mg 1/16

Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage

Sprycel: Currently 50 mg per day - taken 10 pm

 


#25 Frogiegirl

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Posted 19 March 2015 - 06:39 PM

Thanks mbrown2010 I'll watch that closely if i venture down the curcumin road:) still throwing it around? :)

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.


#26 scuba

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Posted 19 March 2015 - 07:09 PM

I take so much Curcumin, I probably look yellow to most people. My Platelets are low normal - but I don't bruise much (I have Dobermans - the kind that like to play rough) despite the high Curcumin. I also drink a lot of wine which you would think would thin the blood more. Reality is quality. If your platelets and blood clotting are clotting normally - Curcumin shouldn't matter. But you know best.

 

My next PCR is in April - two months ahead of time because I am off "therapy". I hope I remain < 0.01% (note to Frogiegirl: notice the lack of a third decimal place. It's irrelevant. I just want second decimal place to stay the same or lower).


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 Frogiegirl

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Posted 19 March 2015 - 07:26 PM

Scoobs I Did notice that! Sooo happy for you! I could use some wine about now:)what a day!

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.





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