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Recent PCR & Bone Marrow Results


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#1 scuba

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Posted 03 January 2015 - 02:02 PM

I received my December PCR and bone marrow.

 

PCR, for the second time in a row, is "undetected". So that's good.

 

But my bone marrow shows 95% of my cells are Trisomy 8, up from 65% a year ago when my bone marrow was last checked.

 

The only thing I can infer is that is the reason I still have myelosuppression (minor, but not insignificant).

Reading on Trisomy 8 seems to relate to MDS. I don't have MDS...at least not yet.

 

I only take 20mg Sprycel.

 

Bone marrow results:

 

BONE MARROW DIFFERENTIAL
BM Method SMEAR
Adequacy Limited sample
Site Right Posterior Iliac Crest
Total cells counted 300
Blasts 0 % (0-5)
Progranulocytes   1 % L (2-8)
Myelocytes             7 % (5-20)
Metamyelocytes    8 % L (13-32)
Granulocytes           34 % H (7-30)
Eosinophils             1 % (0-4)
Lymphocytes             18 % H (3-17)
Plasma cells            0 % (0-2)
Monocytes             5 % (0-5)
Reticulum Cells             0 % (0-2)
Pronormoblasts          1 % (1-8)
Normoblasts            25 % (7-32)
M:E Ratio 2.0          L (3-4)
 by: p212504

 

NOTE: Normal ranges apply to adults only. Call
 the Diagnostic Bone Marrow Laboratory
 for pediatric reference ranges.

 

BONE MARROW CLOT
Quality: Inadequate, no particles

 

BONE MARROW SMEARS/TOUCH PREPS
Quality: Limited with aparticulate and hemodilution
Granulocytes: Sequential maturation, no overt dysplasia.
Erythrocytes: Sequential maturation, no overt dysplasia
Megakaryocytes: Not seen
Lymphocytes: Not increased.
Blasts: Not increased.

 

BONE MARROW DIAGNOSIS
Bone marrow, right posterior iliac crest, clot section, aspirate smears:
Limited specimen with trilineage hematopoiesis


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 Lucas

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Posted 03 January 2015 - 06:59 PM

Hi, scuba. first of all, congratulations for the PCRU. it's a great milestone!

About the trisomy 8, i know it's something to look at and i also have that (10% of the cells). my doctor was not concerned about it. she told me that many times it goes away and if don't she thinks it's just the TKI acting in the healthy cells and not MDS. Hope everything will be ok with you and the trisomy goes away to clean your mind. Cheers! 



#3 CallMeLucky

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Posted 04 January 2015 - 12:25 AM

Outstanding on the pcru, stressful on the trisomy 8. What does Cortes say about it?
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%
 

 


#4 scuba

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Posted 04 January 2015 - 09:32 AM

Outstanding on the pcru, stressful on the trisomy 8. What does Cortes say about it?

 

I am impressed that I have maintained PCRU for two 3-month cycles now while taking only 20mg Sprycel. But you know I believe the Curcumin (and probably vitamin D) have something to do with it. I have a big decision to make. In six weeks, I am likely to stop taking Sprycel altogether and then see if my PCR changes six weeks later. This is not "sanctioned". If I ask, Cortes will say, "not recommended". But since I have 95% Trisomy 8 which is likely caused by Sprycel, I want to see if I can maintain low residual CML and just monitor it.

 

Regarding Trisomy 8, Dr. Cortes tells me, "it is not a concern, but we will continue to monitor" ... which means - annual bone marrows.

 

I'm fairly convinced the Trisomy 8 is the cause of my lower than normal red blood counts. Hemoglobin is good, but that's likely due to exercise maximizing the use of what few red blood cells I have. (3.5). It's rock steady on that score so no real worries, just can't do any Iron man (like I ever did).


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 Trey

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Posted 04 January 2015 - 10:40 AM

Your Trisomy 8 is obviously in your non-leukemic cells to be that high since you are PCRU.  With CML Trisomy 8 is the second most often seen mutation behind the Philadelphia Chromosome, and usually will only be in the leukemic cells.  Overall it would be "better" if the Trisomy 8 were only in leukemic cells, because it would go away over time as the leukemic cells are eliminated by the TKI drug.

 

TKI drugs are suspected of causing Trisomy 8 in some people.  The reason is not clear.  It rarely leads to MDS, but since the era of TKI drugs is rather short, the data is not certain on this issue.

 

Personally, I would stop the curcumin first and keep taking the Sprycel.  It is possible the curcumin has some effect on the Trisomy 8, but that is unknown.  You could help develop the data on this issue if you took this step first to see what happens.  It would also show if you lose PCRU without curcumin, which would help show whether there is an interrelationship between the TKI and curcumin.  By stopping the curcumin and continuing the TKI for a while you would be developing data on two issues at the same time (Trisomy 8 and TKI/curcumin regimen) and therefore would help other patients more than if you stop the TKI, which many are already developing data on that issue already.  If you believe in the curcumin, you could help show whether that it has actually been helpful.  Otherwise you just have a hunch.  Just a thought.



#6 CallMeLucky

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Posted 04 January 2015 - 10:00 PM

I restarted the curcumin when my numbers jumped up and they dropped back down again. There are other factors so can't say for certain cause and effect. I'll also note that the curcumin I take has bioperine in it which is a known dasatinib inducer.
I can tell you that the curcumin on Gleevec didn't seem to make any difference but with Sprycel it seems to have some synergistic effect, but again that could be the bioperine.
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%
 

 


#7 scuba

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Posted 04 January 2015 - 10:24 PM

I started to take Curcumin in association with Sprycel after reading this report:

 

http://www.ncbi.nlm....les/PMC3162943/

 

All this tells me is that Curcumin augmented Sprycel's effect; that it was not dangerous to combine; and that I may be helping myself avoid colon cancer as well (no Trey jokes here). I believe it is why my low dose is so effective, but my belief is not scientific. I would have to stop taking Curcumin while maintaining low dose to see if my numbers change (or become positive again). There have been no research trial with which I am aware that tests Curcumin and Sprycel on CML.

 

I have since become a regular user of Curcumin regardless of CML. Assuming one day we are "cured" and no longer need a TKI, I would still take Curcumin. I no longer have arthritis symptoms. And I don't take Advil anymore either (for headaches).

 

(By the way - I did notice that achieving "undetectable" correlated more with my increasing my vitamin D and K2 levels than before. I was very low in vitamin D and have since increased it to the high normal range. You should consider having yourself tested for vitamin D.)


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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