29 replies to this topic

[nathaliece]

No, Michael, I can't imagine life without wine.  Please feel free to share your favorites as I am always interested in good recommendations.  I am glad the blood draw went so quickly and look forward to hearing good news!

[scuba]

Confirmed.  I just received the results from M.D. Anderson for PCR (Fish still pending).

I dropped from 41% (bcr-abl to abl transcripts) to 1.7%.  This is M.D. Anderson's scale.  I don't quite understand how their method is different from other labs except that it is different.

What I am told is the trend and the change is what is important.  My drop in 10 weeks using only 20mg. Dasatinib is verified.  The other lab was 0.8%; I suspect within margin of error.

I am waiting to hear what is next.  I assume I will just continue taking 20mg. Dasatinib.  The good news is that my platelets and Neutrophils are holding steady.

Meanwhile - I went Scuba diving, was immersed in all kinds of "bacteria" and I am fine - no infection.

Trey:  41% to 1.7% drop = good progress.

[Trey]

It is good progress, and very good news.  I would very much like to see lower drug dosages that are shown to work well for some people and are accepted by the Oncs.

I do not understand the MDA PCR scale, which they say is unique to them -- you should ask Dr Cortes to explain it.

[scuba]

Trey:

I don't know why M.D. Anderson needs to be "different", but I have yet to get an adequate explanation why their PCR scale.  All they tell me is that it is "comprable" to the Intl. scale.  In other words, 50% on one is comparable to 50% on another.  What I have seen is that M.D. Anderson's scale seems to yield higher numbers.  50% on one is ~60% on theirs.

So in my case, it is the trend using their numbers alone from 40% to 1.7% - regardless the other labs results that is significant.  And as you commented, it does seem I have turned a real corner.  I am getting lower Leukemic results while maintaining or even growing my WBC counts.  Both tests now confirm that.  I am interpreting this to mean that my normal blood is re-populating the marrow at the expense of CML.

And most important - I can do this with only 20mg. Dasatinib (Sprycel).  What I am excited about is that the drop is real, large and accomplished with less drug (i.e. less side affects) after only 10 weeks (my re-start).  This is good news.

The wrinkle is that I also believe that this occurred because of Curcumin working in addition to Sprycel.  We'll never know what the result would have been if I only took 20mg. Sprycel by itself.  I am not willing to experiment by stopping Curcumin to see the effect.  But as you know - should I get to PCRu - I will stop the Sprycel while maintaining Curcumin to see if I can remain PCRu.

For the first time since this adventure began, I believe I can achieve PCRu.  We'll see.

Thanks for all your research

[Susan61]

Thats great news Michael.  You  are definitely accomplishing something here, and I am so curious to see if the Curcumin had anything to do with this progress.

Keep us updated.  Take Care and Enjoy everything your getting to do with the energy you have.

Susan

[grannyd]

Great news Michael!!! Keep us posted---everyone is following along--you are in my prayers!!! granny d

[everonward]

Terrific mews Michael - It is such a relief to get the numbers down.

[scuba]

I heard back from Dr. Cortes.  He believes the numbers and told me that I am sensitive to the treatment at the low dose (Trey's point) where he wants to keep me.  He has a few patients in the same category as me.  I do wonder if Tedsey would benefit from this approach?  Lowering the dose does not necessarily lower the response.  It's not linear.  Just a thought on Tedsey.

He also told me that  "In the international scale the results at MDACC are 0.59".  I interpret that to mean that to get an International scale equivalent PCR number you multiply the MD Anderson number by 0.59 (is this correct?).  It would explain why MD Anderson numbers are always higher than other labs using Intl scale.  The words in the quotes above are his exact phrasing.

The really good news for me is that I don't have to go for weekly CBC's anymore.  Next PCR in 3 months and I feel that will be the kicker.

Dr. Cortes had no comment on the Curcumin.  He knows I am taking it - does not tell me to stop.

Correction:  Dr. Cortes told me that my 1.71 PCR number is equivalent to 0.59 on the International scale (it's not a multiplier as I incorrectly assumed).  So Last week's PCR at the other lab was 0.8 and at MD's lab, my results have dropped further.  

[Trey]

So the MDA PCR converted to an International Scale number is roughly half log less than the MDA actual result?  Odd.

[scuba]

from Trey:

Aug 3, 2011

Re: Turning a corner: Update

So the MDA PCR converted to an International Scale number is roughly half log less than the MDA actual result?  Odd

Here is Dr. Cortes exact response to my note below:  1.71 on MD Anderson scale = 0.59 on international scale.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

No, 0.59 on international scale.

JC
Sent from my iPhone(Please excuse any small-keyboard typos)
On Aug 3, 2011, at 6:31 AM, "Michael Zeitlin" <mzeitlin@sbcglobal.net> wrote:

Just to clarify:

1.71 on the MDACC scale = 1.01 on the international scale ?  Is this     correct?

On 8/2/2011 9:25 PM, Cortes,Jorge wrote:

Thanks.             In the international scale the results at MDACC are 0.59 so             we are doing well. Some patients are indeed very sensitive             to the treatment. As long as we keep it constant we have a             good chance of having a good response.

Best,

JC