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Week 14 - No TKI


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#1 scuba

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Posted 06 May 2011 - 04:06 PM

Here is my weekly report.  I have been drug free for over 4 months.

Weekly CBC - (week 14 no TKI):

ANC = 0.88 (last week = 0.96)
WBC = 2.5 (last week = 2.6)

RBC = 3.67
HGB = 12.7
HCT = 38.1
MCV = 104
MCH = 34.5

PLT = 221

I had a bone marrow done last week (no results yet) so Dr. Cortes can learn what is going on in my marrow.  I expected that my Neutrophils would finally cross over 1.0 so I can re-start Sprycel, but I have to tell you, I am kind of glad that I get another reprieve.  I get so close to '1', but it doesn't go over that magic number.  My body really seems to be in some sort of steady state.  Without any TKI, I thought my counts would just start to rise.  Assuming the CML is in a quiescent state, I don't understand why my normal system isn't making up the deficiency.  I have been chronically low by half the Neutrophils.  And my red blood is somewhat anemic also, but that has been true for almost a year following Gleevec cessation.

This is one strange adventure.  To be "sick", but not.  To have a disease for which I am not getting treatment and have felt great for over 4 months with no sign of the disease. 

And the only thing I can think of is that I take Curcumin.  Dr. Bharat B. Aggarwal (M.D. Anderson PhD. not M.D.) does research with Curcumin and he suggested that I increase my dose from 500 mg. per day to 8 grams per day gradually.  He is really curious about my case.  As long as I am not taking any TKI, the Curcumin is not a problem.

I haven't decided to increase it yet pending my bone marrow.  But if my bone marrow shows that the CML has decreased further - then I am going to go the Curcumin route at full 8 grams for 3 months and watch what happens.  Imagine if this works. 

I was tempted to follow Trey's thoughts on stopping the Curcumin to see if my counts rise - but I don't want to stop a 'maybe' good thing.  I love being TKI free.  By the way - do blast cells show up in the WBC count? or are they only discovered under the microscope?

I will say this - for those who are PCRU - maybe adding Curcumin to your diet can be a bit of insurance.  Just a thought.  It's a strong anti-oxidant and anti-inflamatory and when mixed in Curry - tastes good too.  500mg is nothing and I am doing fine.  I wonder what 8 grams would do.  Probably affect the Sharts.


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 Taylor

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Posted 06 May 2011 - 04:19 PM

I've been pretty interested in watching your last few weeks, because I'm a newbie but I also am interested in how natural things can work with or augment drugs.  You said, "As long as I am not taking any TKI, the Curcumin is not a problem."  I know you've been doing both for a while, but is there a point where curcumin can interfere with TKI?

Also I think they can check blast % on CBC...but I'm sure someone else will know for sure.

Taylor



#3 Happycat

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Posted 06 May 2011 - 04:34 PM

I know they can see the blasts on a blood smear.  My hematology book I bought says regular monitoring of a differential smear is important for CML patients, since the proportion of blasts and promyelocytes can change.  I guess that means a regular CBC they do with the machine probably wouldn't count them.

I think the % bands on my CBC report covered all the promyelocytes they found, too.  The book says the %bands are all of the more immature forms on an automated blood counter.

HTH,

Traci



#4 Trey

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Posted 06 May 2011 - 04:45 PM

A standard CBC does not provide blast count.  It requires a blood smear and microscopic examination (or other tests such as Flow Cytometry Test).



#5 scuba

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Posted 06 May 2011 - 05:20 PM

Thanks for the info on blasts.  That means the blood smears they took during the bone marrow along with the aspirate itself will be revealing.

My only concern is if my blasts are increasing and I don't know it.  I get the bone marrow back next week.

Regarding the question on Curcumin - I do not take any TKI at all.  I have never taking Curcumin and a TKI at the same time.  I stopped Sprycel in January and a few days after that, I started taking 500 mg. of Curcumin for the first time based on my research and reading.  There is a question on whether Curcumin + Sprycel when taken together can increase the effectiveness of Sprycel, but it may also increase the toxicity.  They don't know.  Dr. Cortes knows I am taking Curcumin and is not concerned since I am not taking Sprycel (or any other TKI).


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"


#6 Taylor

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Posted 07 May 2011 - 09:25 AM

Oh okay, I gotcha.  I hadn't begun with your week one so I thought you began synergistically.  Anyway I hope whatever is going on with you continues, it's very fascinating to me.






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