6 replies to this topic

[scuba]

I received my 3 month PCR test results from M.D. Anderson.

No change from last test. I am borderline "undetected" at 0.003. Three months ago I had the exact same result.

Limits of detection I was told is 0.01 meaning that this result is merely that there was a bcr-abl protein blip and rather than report a "zero", they report a number. They could have easily reported it as "zero".

Dr. Cortes told me that I could reduce my Sprycel dose back to 20mg from my current 40mg if I want. He expects that I will continue at this residual level for some time and will eventually fall below any detection.

I'm tempted to stop Sprycel altogether and see if my PCR number stays flat, but I would want to be re-tested at six weeks, not 3 months. If the CML clone is going to expand, I prefer it only have a few weeks to grow drug free before I bombarded it again with Sprycel. But then - it would be interesting to see if my body has managed a way to keep the disease in check as the normal population.

20mg or 40mg doesn't seem to make a difference in my case - so I will probably return to my 20mg. dose. Less drug, less toxicity, less unseen side affects. Worst case - my PCR number goes from 0.003 to 0.006 or 0.01.

So damn close to the magic number.

Merry Christmas!

[Dina36]

Hi Michael,

My latest PCR ratio was 0.00003% so are we the same then? I would love to reduce my Tasigna dosage I take 600mg every day. I've asked my doctor about it then he looked at me and said: Why do you want to do that? I said well les toxicity in my body, he goes nah why reduce something if it's working ughh doctors!! I would love to reduce my dodage at least to 450 and yes to see those zeroes one day, that would be awesome.

Dina

[Dina36]

Ohh btw Michael I know that you are always up do date with CML news and stuff , do you know anything about ASH meeting this time, any good/ positive news?

[LivingWellWithCML]

Congratulations Michael.  Good times and good wine await you!

[scuba]

Dina - I don't believe that non-research doctors have an incentive to 'speculate' on custom medicine. Scientists in the field, however, who make their reputation and credentials by writing papers and getting published need lots of data from many situations. These doctors have incentive to try different things. Their work requires it. The entire field for them is largely trial and error. And they gain a lot of experience and insight as a result. That is why I chose Dr. Cortes. It was he who first put me on 20mg. Sprycel - 1/5th the normal dose. It was he who told me and I verified by reading that CML while in chronic phase with low to zero blasts is a slow disease. This slowness allows for prudent experimentation. It was Dr. Cortes who let me play with dose to see what works best (both in response and in side affects).

We know that cutting dose is a viable treatment option. Trey has cut his Gleevec dose more than half and remains PCRU (he could actually eliminate taking Gleevec and probably remain PCRU, but he's scared to try). Others need more dose to get response.

In my case, 20mg. worked. 40mg. may have worked a bit better, but so far the results show that my PCR level is unchanged. So I am going back to 20mg. and will probably just live with CML in this low level state. Dr. Cortes mentioned that he has patients that were like this for years (0 < PCR < 0.01) and then suddenly went to PCRU. He believes that will happen to me.

When side affects are an issue - it behooves a patient to try a lower dose. Worse case is three months later, PCR has gone up some, maybe even a log increase. One can always increase the dose again and regain response. It's art at this point. Not so much science.

[scuba]

The big news out of ASH this year was more results on the T-cell treatment for Lymphoma leading to cure (Dr. Carl June's work in Pa.). Their were discussion panels on next steps to try this approach on other Leukemia's. It is noteworthy that CML is not considered a high candidate for this approach because we have a treatment that basically lets us live normal lifespans. People with AML and other Leukemia's don't necessarily have the options we do, hence the focus on these other Leukemia's using the novel T-cell approach.

[Susan61]

Congratulations Michael on your good results.  Whatever your doing is working for you, so I wish you continued good results.  Have a Very Merry Christmas