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My Cancerversary

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#1 HeatherZ


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Posted 23 March 2012 - 09:11 AM

So this weekend marks my 2 year Cancerversary.  I monitor the board daily but generally don't post much.  I am chugging along in my treatment and often think of Tedsy and her analogy to the Little Engine That Could.  I still have not seen any zeros in my PCR results but my Onc feels that a drug change is not necessary yet.  Lately I am going through a bad side effect cycle and have been questioning my docs advice.  I think we all do that when the side effect cycle swings against us.  I have been having bad bone pain (especially in my hips and femurs), muscle cramps in my legs, cramps in the arches of my feet, and eye bleeds.  The water retention seems to be worse too.  When the side effects hit me, they hit all at once.  I am coaching my daughter's softball team this year and we started practice last week.  I know people say excercise helps relieve the pain but the more I do, the more I hurt.  It is supposed to be rainy here in PA this weekend so I am sure the dampness will just make me feel even worse.  I am looking forward to this cycle to be over so I can enjoy being on the ballfield and also looking forward to opening my camper up to get ready for the camping season. 

I think I will celebrate this Cancerversary with a DQ blizzard - I do love them!  So anyone that wants to join my celebration, go get a DQ blizzard this weekend and think of me!


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#2 scuba


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Posted 23 March 2012 - 09:21 AM

Hi Heather ... switch drugs.

two years is long enough not to have a "zero".

Switch to Sprycel or Tasigna ... either one will likely get you a deeper response, maybe even PCRu.

(I was diagnosed around the same time as you ... once I switched off Gleevec and was able to stay on Sprycel every day - down went my counts and now I have a zero in my PCR number and labeled MMR.)

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"

#3 HeatherZ


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Posted 24 March 2012 - 11:39 AM

Thanks for the input Scuba.  I see the Onc again in May so I guess I will see how my results are and if not much better I'll really push for a switch.

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