26 replies to this topic

[scuba]

I had my 3 month PCR blood draw today (M.D. Anderson). In addition, they did a complete blood count as well (results below).

After two plus years of myelosuppression - it looks like I have turned that corner for good. My Neutrophil count, for the first time, has crossed into what M.D.Anderson considers normal (1.82). I have never had Nuetrophils that high while taking a TKI (Sprycel). Platelets are on the low side, but no different than months ago. There are a few other anomolies, but am told they are not a big deal. Still - I treat anomolies as something to watch.

I do seem to be anemic (Red blood 3.6 vs 4.5normal) - but that measure is still not that much different than last May.

I await the PCR results. I am knocking on the door of PCRU - and hope this test will confirm it. We'll see in 7-10 days.

_____________________________________________

COMPLETE BLOOD CNT/DIF/PLT

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WHITE BLOOD CELL COUNT 4.1 K/uL (4.0- 11.0)

RED BLOOD CELL COUNT 3.58 L M/uL (4.50- 6.00)

HEMOGLOBIN 13.5 L G/DL (14.0- 18.0)

HEMATOCRIT 38.1 L % (40.0- 54.0)

MEAN CORPUSCULAR VOLUME 106 H FL (82- 98)

MEAN CORPUSCULAR HGB 37.7 H PG (27.0- 31.0)

MEAN CORPUSCULAR HGB CONCENTRN 35.4 G/DL (31.0- 36.0)

RED CELL DISTRIBUTION WIDTH 14.7 % (12.0- 15.5)

RDW STANDARD DEVIATION 55.7 H fL (35.1- 46.3)

PLATELET COUNT 129 L K/uL (140- 440)

MEAN PLATELET VOLUME 11.2 H FL (4.0- 10.4)

DIFFERENTIAL-METHOD AUTO DIF

NEUTROPHIL PERCENT 44.4 % (42.0- 66.0)

A Neutrophil count includes Bands.

LYMPHOCYTE PERCENT 37.4 % (24.0- 44.0)

MONOCYTE PERCENT 14.5 H % (2.0- 7.0)

EOSINOPHIL PERCENT 2.7 % (1.0- 4.0)

BASOPHIL PERCENT 0.5 % (0.0- 1.0)

IMMATURE GRANULOCYTES PERCENT 0.5 H % (0.0- 0.4)

The IGRE% includes Metamyelocytes, Myelocytes and Promyelocytes.

NEUTROPHIL ABSOLUTE COUNT 1.82 K/uL (1.70- 7.30)

LYMPHOCYTE ABSOLUTE COUNT 1.53 K/uL (1.00- 4.80)

MONOCYTE ABSOLUTE COUNT 0.59 K/uL (0.08- 0.70)

EOSINOPHIL ABSOLUTE COUNT 0.11 K/uL (0.04- 0.40)

BASOPHIL ABSOLUTE COUNT 0.02 K/uL (0.00- 0.10)

IMM GRANULOCYTE ABSOLUTE COUNT 0.02 K/uL (0.00- 0.04)

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[Trey]

Overall TKI-normal results.

Your high Mean Platelet Volume (MPV) despite your low platelet count is "interesting".   My MPV has always been low with low platelets. 

[scuba]

I wonder what causes high MPV? My father died of Stroke complications and had heart issues. Perhaps it's inherited ... He did live to be in his 80's though. I do take Omega 3's as well as Curcumin. Maybe that will help minimize the chance of a stroke.

[LivingWellWithCML]

I just completed my 3-month draw today as well.  I continue to be enamored with RBC and Hemoglobin levels cause of my running, and our levels are almost identical.  Amazing to be mildly 'anemic', but with the ability to maintain high levels of fitness.  Hope you make it to PCRu!!  Will have a good cab ready to open in celebration...and perhaps a cigar as well...

[Sneezy12]

Dan- a year or 2 ago, I posted an article, indicating that a high MCV indicated a good response to treatment It should be on the Board somewhere. I will look for it. Regards, Frank 

Leukemia Research 33 (2009) 1459-1462

Contents lists available at

ScienceDirect

Leukemia Research

journal homepage:

www.elsevier.com/locate/leukres

Mean cell volume can be an early predictor for the cytogenetic response of

chronic myeloid leukemia patients treated with imatinib?

Moo-Kon Song, Joo-Seop Chung

?, Young-Mi Seol, Seong-Geun Kim, Ho-Jin Shin,

Young-Jin Choi, Goon-Jae Cho

Department of Hematology-Oncology, Pusan National University Hospital Medical Research Institute, Busan, Republic of Korea

a r t i c l e i n f o

Article history:

Received 28 March 2009

Received in revised form 10 April 2009

Accepted 15 April 2009

Available online 15 May 2009

Keywords:

Imatinib

Chronic myelogenous leukemia

Mean cell volume

Cytogenetic response

Sokal score

a b s t r a c t

Imatinib-induced macrocytic anemia was known to result from c-kit inhibition in chronic myeloid

leukemia (CML). However, recent studies showed that the prevalence of anemia is increased with high

trough imatinib level and increased doses of imatinib influence decreased proliferation of burst forming

units-erythroids (BFU-Es). The aim of this study was to evaluate the continuously increased mean cell

volume (MCV) level's correlation with cytogenetic response and the favorable outcome in early chronic

phase (CP)-CML patients.

Clinical importance of MCV level was evaluated to correlate with cytogenetic response and compared

with Sokal score, a known excellent prognostic parameter of cytogenetic response (CCR) in 84 early

CP-CML patients.

The patients with early and continuously increased MCV level irrespective of anemia achieved higher

CCR after 12 months of imatinib therapy than patients with non-CCR (

p = 0.011). When the value was

compared with low Sokal score, elevated MCV was independent predictor of CCR (RR = 12.925,

p = 0.002

vs. RR = 35.445,

p < 0.001). Furthermore, the patients with early and continuously increased MCV level

had a higher probability of maintaining CCR than non-increased level (

p = 0.019). Increased MCV levelwas

surrogate marker of achievement and durability to CCR for early CP-CML patients in the present study.

© 2009 Elsevier Ltd. All rights reserved.

[Melanie]

Congrats Scuba!  And normal neutrophils...all good signs!  So hoping it all means PCRU.

Blessings, Melanie

[scuba]

Thanks Melanie ...

I'll report here when I get my PCR results back. Dr. Cortes already told me that if my results are good (i.e. lower than last PCR or PCRU), I won't have to have a bone marrow in December. I am not sure why that would be the case (based on CBC + low PCR?) - perhaps Trey has some insights.

The great news is that I am getting there with low dose Sprycel (1/5 th normal dose).

[CallMeLucky]

I'm just going based off my own logic but if you continue to improve then why subject you to another BMB.  I know there was an abnormality in your last BMB but I thought they said that it would likely not be an issue, so again if things are working and continue to improve then why put you through the BMB?

[scuba]

At my last bone marrow I had a significant number of Ph- cells (non-cml) that had trisomy 8 and one cell that showed monosomy 7. Monosomy 7 is associated with Acute Leukemia (AML). The myelosuppression I was experiencing may have been associated with the fact that many of my Ph- cells were not good. There was discussion that TKI's (and Sprycel in particular) can cause Ph- cell abnormalities and that it often clears up. The Trisomy 8 is common and Monosomy 7 is less common. It is the monosomy 7 that has him watchful.

Dr. Cortes scheduled me for a bone marrow this December (last one was in May/June) to monitor my bone marrow. When my CBC came back fairly strong (in terms of Neutrophils and WBC's in general), he suggested to me that he feels my marrow is improving on its own (as he suspected would happen) and this will be confirmed in his mind if my PCR level drops another log or goes undetected.  If my PCR shows another drop, he will postpone my BMB.

Personally - I don't mind the bone marrows - they are a tremendous source of information and data on the quality of the blood making process. But I agree - if I get to PCRU - I'm done with all of this, including taking a TKI. I'll just stick with my Curcumin.

[Trey]

I think Dr Cortes has it right about the BMB issue and tying it to PCR results, even if the T-8 and M-7 have been issues. 

Also, the Curcumin may be causing the platelet issues (MPV) since it is a natural blood thinner.  Not what you want if you have low platelets:

http://www.ncbi.nlm....pubmed/20158382

http://www.vrp.com/h...-blood-thinners

[scuba]

Interesting papers.

I don't seem to have any platelet issues apart from the higher MPV reading. I don't bruise or have had any bleeding issues whatsoever. When they draw blood, the injected site clears within minutes - with no resulting hematoma. Interestingly - I have had no hematoma's at all since taking Curcumin (somewhat opposite of what would be expected) whereas I did before.

It's a trade-off since there is a good chance the Curcumin is acting synergistically with the Sprycel. I will certainly watch it more closely. Dr. Cortes does not seem concerned about it.

[scuba]

My PCR results are back. No change. I have what they term a "low positive result" at 0.01 (IS scale). I had hoped for another log drop or even PCRU.

It seems I am in a steady state level.

Damn. On to plan B. I don't know what plan B is yet, but I'll figure it out.

[eithne01]

hi there, i'm a little confused here( nothing especially new in that)  understood 0.01 was an amazing result?

[Tedsey]

Michael,

I'm with eithne01!  Last I heard, that was good news!  But anyway, hope you get to PCRU soon, like you would like.  I would take MMR or a sizeable decrease in PCR (I've been stuck for the last 9 months).  I am so sorry I didn't answer your last question way back.  I have been off and on the board.  I was not taking 8g of Sprycel.  It was more like 1/2 that amount, only because the claim was that you would get more by taking less.  Didn't seem to effect the PCR.  However, I felt better taking it.  My nails and hair looked great and I felt more energetic.  For a about a month, I was sad about my PCR and was sick of swallowing all those pills.  So, I stopped.  However, I started taking curcumin again at 8g.  Still hate swallowing all those pills, but I will see what happens.  Despite the continued low PLT, I have no issues with bruising or clotting.  However, I switched brands (just couldn't swallow the little disks--the capsules with powder are much easier to get down).  I find this new brand gives me heartburn.  Maybe it is the increased amt.

Glad to hear you are doing so well still on such a low dose of S.  I don't think my onc would even consider lowering me.  But I feel very well, so I guess I am fine.

Take care,

Teds

[scuba]

I am very "eager" to get to PCRU. That's my goal. Anything short just causes me to keep searching. Dr. Cortes is absolutely pleased with my result. I am in his cohort of patients that he doesn't worry about. I again asked about increasing my dose to 40mg. and he said, "no" (little "n" this time). He wrote me that he sees this all of the time and that I could very well resume my trend downward at next test (even PCRU). What was a little interesting is he said that my response could be due to Dasatinib (Sprycel) alone. He has patients who take only 20mg. Sprycel (no curcumin) and are where I am. I told him I believe it is the Curcumin working with the Sprycel. He said, maybe... maybe not. He doesn't discourage it though. If I get to PCRU while taking Curcumin + 20mg Sprycel, that will be of interest to him.

I agree with you on the hair and nails!  - and skin. All are in better shape than in years. And what little arthritis I was developing is gone. So, Curcumin has its benefits. If I determine, for me, that Curcumin is not helping the CML in any measurable way, I will reduce my dose back to what is normal for people to take and leave it at that (i.e. one - two grams a day). Taking Curcumin regularly (assuming no bruising issues) is good for you.

But I have a suspicion that when I return to my 8gram regimen, my PCR will show another big drop at next test.

We'll see.

(although 0.01 is a good result, it's the fact that there was no change from 3 months ago that has me disappointed. I told my wife that if this report was 0.000 (undetected) we were going to celebrate with a nice vintage port: http://www.extravaga...-11-600x695.jpg

Now that has to wait - bummer).

[Dina36]

Hi Scuba,

That wine looks lovely but three months will pass quickly and I'm sure there are other wines that you can enjoy until your next PCR Test.

Dina

[eithne01]

HI again, I get you about the results.  I get confused wih all the zeros!!!.  I think i'd still be heading for the wine.

[mdszj]

Trey

I looked at the 2 links you posted here, very interesting.  After reading them I have a question - do you know if taking blood thinning spices such as curcumin and ginger or even aspirin, etc would actually reduce your platelet count?  It seems like your blood could get thinner without having lower platelets.    Just wondering if you or Scuba or anyone else may have some thoughts on this.

thx Mike

[Trey]

Prescription blood thinners and aspirin are only supposed to reduce the ability of platelets to coagulate, not reduce the numbers.  Although I have read that curcumin is a blood thinner, I don't know what curcumin actually does because of the lack of controlled, scientific data.  Most information about it is "arm waving".  People can do what they want.  I just remain sceptical.  

http://www.livestron...cumin-bleeding/

http://lpi.oregonsta...icals/curcumin/

[scuba]

Trey wrote, "I don't know what curcumin actually does because of the lack of controlled, scientific data. Most information about it is "arm waving"."

I strongly disagree. There is a lot of information about Curcumin from 'controlled scientific" studies.

The one study I used to justify my interest in Curcumin was its efficacy (scientific study) with Dasatinib (Sprycel) in colon cancer: http://www.ncbi.nlm....pubmed/20473900

This research suggested to me that Curcumin does not degrade Sprycel as some agents could do and may in fact augment Sprycel's effectivness. But this is one study. There is more.

We know that NF-kB pathway is unregulated in CML cancer. Research suggests that down regulating this important pathway in CML expansion could lead to much more apoptosis of CML cells. Curcumin is a strong NF-kB inhibitor:

http://www.ncbi.nlm....pubmed/19723087

http://orbi.ulg.ac.b...tgens et al.pdf

http://www.ncbi.nlm....pubmed/17291458

There are many papers along these lines suggesting both NF-kB's impact on  Leukemias (including CML) and the fact that Curcumin down regulates this activity significantly. It was this research that led me to try Curcumin on a sustained high dose basis along with taking Sprycel.

There are others:

http://www.ncbi.nlm....pubmed/21669872

However, Curcumin research is not without its scandals:

"Move over resveratrol, there's another popular polyphenolic ingredient with blockbuster aspirations that's now facing questions of research impropriety: curcumin."

http://newhope360.co...al-crater-sales

"The problem arose when a University of Texas MD Anderson Cancer Center researcher, Bharat Aggarwal, PhD, was accused of fabricating parts of his research in 65 published research papers, mostly involving anti-cancer and anti-inflammation benefits. Two journals have officially withdrawn his papers."

However,

"In 2012 alone there have been 250 published research studies on curcumin, on benefits ranging from rheumatoid arthritis pain and heart attack prevention in bypass surgery to promise for Parkinson's Disease and as a chemopreventive against brain cancer."

And "In the electronic database of the National Institutes of Health (PubMed), there are currently 4,684 studies listed involving curcumin, and over 99 percent of these did not include the research in question,"

"There are a number of people studying curcumin, which we believe is poised to break out as the next widely used supplement," he said. "While there is some attention to curcumin in this case because Dr. Aggarwal has been a strong proponent of it, the body of science from a number of clinicals outside the scope of Dr. Aggarwal's research center is significant, so we do not anticipate an effect on the market."

I have since learned that the accusation of research impropriety involving Dr. Aggarwal has gone nowhere and there is suggestions of research peer to peer jealousy with unfounded accusations. Dr. Aggarwal is somewhat of a celebrity in India and has detractors.

Dr. Aggarwal continues to work at M.D. Anderson and in light of all the other research apart from his, I continue to believe that there is something to Curcumin's benefits in blood health. If I can get to PCRU on only 20mg. Sprycel while taking Curcumin, I will become a believer.

So - Trey - arm waving?

Michael