24 replies to this topic

[jenn]

So until you have a zero @ BMB then you are not PCRU ? Should you then continue w/ BMB every 6 months ? .089 and negative seems way off to me

.... I thought  the blood draw was enough.. o well, thanks  Gerry !

[GerryL]

Hi Jenn,

I'm only having PCRs done (hopefully forever, as going back to having BMBs will mean something is wrong) if I eventually get a PCRU I am going to celebrate even if I do have a few of those little leukema cells floating around in my body somewhere.

I think this is why you can't think about doing things such as reducing your Gleevec for example (and I'm not talking about people reducing meds due to side effects)  until you have had at least 2 years of PCRU.

Remember it is a response to the medication binding the leukemia cells, most of us will still have leukemia cells being produced back in the stem cells, which is why it usually comes back for people when they go off their TKI.

[jenn]

Hi Gerry,

Not considering reduceing , my husbands dr wanted to switch him to Sprycel due to lack of responce, he said he  has to be pcru @ 1 year . Besides shats and fatigue he is all G with the G. We have asked for a second opinion and will see another dr in a few weeks and go over his progress then.

[GerryL]

Definitely get a second opinion - we have a saying in Australia from one of our home grown movies "Tell him he's dreaming" - you might need to watch "The Castle" to understand.

Some people may reach PCRU by 12 months (on Gleevec) but they are few and far between. Gleevec works a bit slower than the other second generation TKIs, but as long as your husband is trending downwards that's the main thing.

As for the sharts, get your husband to start taking some probiotics, it will take a little while to get his gut back to normal functioning, but it does work. I take one everyday.

[CallMeLucky]

Jenn

A PCR is a type of test and they can run that test on either a bone marrow fluid specimen OR on peripheral blood specimen.

From what you wrote below it sounds like you are saying thre was a PCR done on bone marrow in august and the result was .089 and then another PCR was run in Sept on peripheral blood and that one came back negative.

If this is the case and the doctor still wants to switch drugs, you should report him for malpractice.

Maybe I don't understand all the details but from what you written, there would be no reason to change drugs at .089 and there certainly isn't a reason to change drugs if the PCR is now negative.