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#1 scuba

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Posted 11 November 2011 - 09:55 AM

After 5 months of finally being able to stay on TKI therapy with only 20mg of Spyrcel - Today is the day I go to M.D. Anderson to have my bone marrow sampled and blood taken.

I should know in a couple of weeks whether my blood making system is reverting to normal or not - as well as what the PCR levels have become.

I should also learn if I am still myelo-suppressed with CBC results due today.

This is a major milestone day.  I'll report the results as soon as I get them.


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 CallMeLucky

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Posted 11 November 2011 - 11:49 AM

Godspeed!


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%
 

 


#3 Rissa

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Posted 11 November 2011 - 02:51 PM

I hope everything goes well. 



#4 pammartin

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Posted 11 November 2011 - 02:56 PM

Wishing you the best of luck!



#5 scuba

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Posted 11 November 2011 - 05:35 PM

Thanks all !

My CBC today was somewhat a surprise.  ANC = 1.04.  It is down quite a lot from 1.6 four weeks ago.  Platelets and everything else was steady.

It does seem that I have continuing issues with myelosuppression.  Not bad enough to stop 20 mg. Sprycel, but an issue.  Perhaps the Curcumin may be causing the Sprycel to be more 'effective' at low dose hence the higher than expected myelosuppression.  No mouth sores or other bacterial infections - so anything above 1.0 ANC is o.k. by me.  I was half expecting the my blood counts would continue to normalize.  I guess not to be.

A couple of very pretty PA's did the bone marrow.  Not bad.  Some pressure at the end when they took the last bit of fluid.  I had no idea they pull 5 ml from the bone.  5 ml is A LOT.  Somewhat thick they said.  M.D. Anderson will do cytogenetics, PCR and some other tests.  I should know in a week or so.  I am hopeful I learn of big reduction in PCR.

Trey:  My "Immature Granulocytes Percent was high at 1.0% (0 - 0.4% = normal)

Absolute  Immature Granulocytes = 0.03 which is in the normal range

Immature Gran includes metamyelocytes, myelocytes and Promyelocytes.

I am concluding from this that my body is trying to make more blood and Neutrophils.


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 GerryL

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Posted 11 November 2011 - 06:01 PM

Hi Michael,

Could luck with your results.



#7 LivingWellWithCML

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Posted 11 November 2011 - 07:38 PM

That is great that you don't appear to be prone to infection with your ANC.  And I assume that you do your BMB with no sedation of any kind, eh?  I am just not man enough to get it done without a little bit of happy juice!

What was your wine choice this evening after braving the BMB?

Sending positive vibes for a rapidly dropping PCR....


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#8 grannyd

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Posted 11 November 2011 - 07:46 PM

Prayers are being sent up for you!!!!



#9 Fas

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Posted 11 November 2011 - 08:22 PM

Can't really offer much insight on your results, but can offer you the very best wishes that you will continue to do well.   Hang in there.  Things do not always progress in a linear fashion.  Sometimes you have going a bit out of your way to get to your destination. 

Fran



#10 Trey

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Posted 11 November 2011 - 09:52 PM

The "immature granulocytes" (various types of blasts cells) are likely due to the myelosuppression and your body trying to recover. 



#11 scuba

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Posted 12 November 2011 - 08:24 AM

No wine last night.  Johnnie Walker XR-21 with a Montecristo #3 White.  Pain gone.

(you can't buy XR21 in the U.S. (yet) - so a good friend of mine was kind enough to open his and share given the acupuncture I received)


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"


#12 LivingWellWithCML

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Posted 12 November 2011 - 08:29 AM

Oh man, delicious.....I have been gun shy about whiskey since diagnosis, but maybe an occasional sip wouldn't hurt. :)


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#13 scuba

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Posted 12 November 2011 - 09:19 AM

Don't be shy about living!  Fortunately most - if not all of the TKI' are salts and pass into the bloodstream quickly to do their work.  Alcohol does not interfere with them.  Although it may seem I drink a lot of alcohol - I actually limit myself to two per day over 5 days or so - o.k. seven days.  Whether two glasses of wine or two Johnnie Walkers.

Drink responsibly and never drink alone.


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"


#14 markmendonca

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Posted 12 November 2011 - 09:47 AM

GOD be with u . ha its going to be ok..






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