10 replies to this topic

[scuba]

I had my 3 month PCR blood test taken today. This afternoon they reported part I of the two part results: blood counts and metabolic numbers. I won't receive the PCR results until next week sometime.

What's interesting is that for the first time since before diagnosis (3 years ago almost), my white blood and Neutrophils are normal. Not just low normal - but solid normal like they used to be. Three months ago, my Neutrophils were 1.5 - and were like that for a long time.

Neutrophils are 2.5! WBC's are 4.6. Now that could be the result of one of two things. Either I am failing Sprycel and my counts are rising or my blood system is finally normalizing. I am very curious what my PCR numbers will be with this test. I was borderline PCRU last time, but still with suppressed counts. The fact that my red blood is still below normal gives me a sense that Sprycel is still at work.

It's hard to know without the molecular study - but it feels good to be able to expose myself to germs like I used to do with impunity.

7-10 days and counting. This will be a big test result. Am I PCRU?, holding steady? or jump up a log?

I did change the Curcumin I was taking (I take one with so called higher bio-availability) during these last three months.

Also - my C-reactive protein level was 0.66. Anything less than 1.0 is considered very low and a good indicator of low cardio risk. I attribute this to the Curcumin. It is a strong anti-inflammatory and C-reactive protein is a measure of inflammation internally.

[Susan61]

Hi Scuba:  Sounds like your doing really well.  Don't think about failing Sprycel.  Your always so positive, and determined to get there your way with the Curcumin etc.  I will pray that you give us a PCRU result when it comes in.

I will be watching for your update.

Take Care

[scuba]

Thanks Susan. I'm looking forward to the day I can stop taking Sprycel.

[scuba]

Blood test results Part II:

I just received my PCR results. PCR doubled from 0.001 to 0.002

I did do one thing different during these last 3 months. I changed my Curcumin from Physician Naturals C3 (1000mg) w/Piperine to Meriva Phytosome (4 grams). Meriva is supposed to be two to five times more bio-available than C3 (hence my taking 4 grams).  I think for the next 3 months I will go back to my original full 8 grams Curcumin C3 and see if my PCR levels change. In the mean time I still remain at 20mg. Sprycel.

Interesting disease. The good news is I start back on my wine at the end of this week. I gave Lent 40 days.

Post note: I just heard from Dr. Cortes, he still wants me to stay at 20mg. ! No change in dose.

You guys want to lower your dose and I can't get my Oncologist to increase it !!! Think about the irony of that.

[CallMeLucky]

Stable MMR. I can think of worse things:)

Sorry not what you wanted but glad it is a good result nonetheless.....

[scuba]

Absolutely - I can think of worse things. Given the nature of PCR testing - even if it had dropped further (or below detection) would have been pretty much the same.

Dr. Cortes doesn't even want me back for another three months. Until there is a more than one log trend, he is not concerned. The change is in the noise.

He has other patients who are very much in need of his expertise.

Still - I would have liked to come up with a formula that would have worked for me getting to PCRU. Not there yet. I'll readjust and get back to what I have been doing (a full 8 grams of Curcumin) and we'll see three months from now.

[Pin]

Wow - great result though on the low dosage! I remember how I felt when I went from 0.004 to 0.0039. Boy was I disappointed that I wasn't PCRU at the time. But then I jumped up to 0.03 and I wasn't so disappointed with that older result anymore! Hope I can get back there eventually, my last one showed 0.016 (before that, 0.014). I think you'll get there, I'm not so sure about me anymore - either I just have to be more patient, or it'll just not happen on this drug/dosage and I have to accept that. Time will tell though. Good luck!

[scuba]

It's the trend that I care most about. 20mg Sprycel is quite effective for me (probably with Curcumin added) - but the reality is it is only 20mg. - 1/5th the normal dose. I believe that if I increase my dose to 40mg. I will punch through to PCRU. And this is where it gets interesting.

On this forum many people describe how their Oncologist won't let them lower dose even though they have great response. "Side affects be damned", "live with it", and all that. All these Oncologists care about is their liability insurance (which is understandable - but also why people should change doctors when this is their doctor's motivator). These doctors follow the NCCN guidelines not realizing the word "guideline" is not the same as "rule". I have a doctor who could easily increase my dose, but won't. To him, quality of life without side affects on these drugs is a driver for his clinic. They have an entire section devoted to side affects management through dose modification. And so I have been dose modified. My PCR would have to jump another log before I get to go to 40mg. But we negotiated. I told him that if I don't see a drop in PCR next test, that I will go to 40mg. He agreed.

I am o.k. with the 20mg., however. Apart from the 3 month blood tests, I would not know I have CML or take a blood cancer drug. I have no side affects that I can feel. It's just that I so want to be PCRU so I can get on with my next experiment. And the truth is - I am stuck at this level - which tells me my CML is reproducing and getting killed in a steady state manner. I wanted the population to be steadily decreasing and it isn't.

My plan for the next 3 months is to increase my Curcumin back to what it was and maybe a bit more. I will test the idea that the extra Curcumin can put me back into a downward trend. In my own tests, I have a 100% correlation between increase Curcumin and decrease PCR while maintaining 20mg. Dasatinib. I have almost a year of data tracking this. And so I'll go back on the higher dose of Curcumin (which is 8 one gram pills - and I hate taking).  I really don't want to go to 40mg. Sprycel if I can avoid it.

[CallMeLucky]

As we've discussed though there is something different about your case from others like me who have asked for dose reduction to lessen side effects.  While side effect management may be something Cortes is much more in tune with than other doctors, that is not the primary reason why you are at 20mg.  You have/had severe myelosuppression.  I am betting that if your counts were in the normal range that Cortes would not only be willing to raise your dose, but likely pushing it.  He is not raising your dose because you are stable and he doesn't want to see your counts tank.  I'm sure he cares much about his patients, but I can't believe he is keeping you at 20 mg because he is worried about you having some fatigue or muscle aches.  I think you pose a very interesting test case for him and he is happy to see where it goes knowing he is fully justified keeping you at 20mg due to your low counts.  If he raises your dose and your ANC plummets then he has a problem (well you have the problem, but he has to deal with it).  By keeping you stable with a low level MMR he is perfectly happy.  I'm guessing he is less concerned about PCRU than you are because even at PCRU there are still CML transcripts below the detectable limit.  What is truly inspiring about your case is the fact that now after a couple of years your counts are actually starting to improve and stabilize.  My guess is, that is what he is most intrigued by and why he does not want to rock the boat too much.  If your counts slowly come back to normal it could drive treatment protocols for people with myelosuppression.  Perhaps they'll call it the Scuba protocol?  Nah, if it works it gets named after the doctor, they only name stuff they can't cure after a patient!!!

[CallMeLucky]

As we've discussed though there is something different about your case from others like me who have asked for dose reduction to lessen side effects.  While side effect management may be something Cortes is much more in tune with than other doctors, that is not the primary reason why you are at 20mg.  You have/had severe myelosuppression.  I am betting that if your counts were in the normal range that Cortes would not only be willing to raise your dose, but likely pushing it.  He is not raising your dose because you are stable and he doesn't want to see your counts tank.  I'm sure he cares much about his patients, but I can't believe he is keeping you at 20 mg because he is worried about you having some fatigue or muscle aches.  I think you pose a very interesting test case for him and he is happy to see where it goes knowing he is fully justified keeping you at 20mg due to your low counts.  If he raises your dose and your ANC plummets then he has a problem (well you have the problem, but he has to deal with it).  By keeping you stable with a low level MMR he is perfectly happy.  I'm guessing he is less concerned about PCRU than you are because even at PCRU there are still CML transcripts below the detectable limit.  What is truly inspiring about your case is the fact that now after a couple of years your counts are actually starting to improve and stabilize.  My guess is, that is what he is most intrigued by and why he does not want to rock the boat too much.  If your counts slowly come back to normal it could drive treatment protocols for people with myelosuppression.  Perhaps they'll call it the Scuba protocol?  Nah, if it works it gets named after the doctor, they only name stuff they can't cure after a patient!!!

[scuba]

All good points. But the important fact you cite is that my counts are normal now. I do not have "mylosupppression" - although my red blood cells are still below normal, but coming up. My hemoglobin, for the first time, is solidly normal now. So I am ready for a higher dose.

You are correct about MMR (and FISH = zero) as most important to Dr. Cortes. He strongly believes that cytogenetic response is what prognosticates future success. To him, PCR is the canary that gives warning should it go up. but if it muddles around 0.1 or below (IS scale), he feels his patient is doing fine. PCR trend is what is important to him not the absolute number. He wrote me that only if my PCR goes up again (1/2 log or so) would he consider changing dose. His concern is with patients who have difficulty getting to a FISH = zero. And he very much cares about side affects. He will lower dose to manage side affects even if it slows response. Speed of response is not as important to him as direction. Although he wants to seep fast cytogenetic response.

In reality, I believe that the Curcumin is what is augmenting low dose Sprycel for me. Every time I try to cut back on Curcumin either by taking a so called higher bio-available Curcumin (Meriva) or just cutting back (because I hate taking so many Curcumin pills), my PCR goes up. It's not statistically meaningful since it is within the margin of error of bcr-abl testing, but it correlates nonetheless. I fully expect that by going back to my original regimen of 8 one gram C3 caplets (Sabinsa) my PCR will drop back again - and maybe even further. And if it does so this time - drop back - as in the past, I will stay using Curcumin at my 8 gram level and see if my PCR continues to fall. No more Curcumin experimenting.

Regardless - I am coming to the conclusion that a higher dose of Sprycel will enable a "below detection" drop in bcr-abl/abl ratio. In other words, to destroy the Leukemic load below what can be measured, I'll need a higher dose for a number of years. My goal after all is to cause the CML stem cells to divide into oblivion so I can stop taking Sprycel and remain disease free. The research I have been reading suggests that coaxing quiescent Leukemic stem cells into dividing will enable eradication. TKI's work only on a dividing cell.