14 replies to this topic

[scuba]

I just had my latest PCR result come back at < 0.01% (M.D. Anderson scale). bcr-abl was "detected", but not quantifiable. I no longer have to have PCR tests every three months. My next test will be in six months. If the result is the same, I switch to annual check.

 

But most important .... I don't have to have any more bone marrows which I had to have annually to keep track of other bone marrow issues.

 

I asked that my dose be reduced from 20mg to 10 mg - to see if that will be sufficient to keep me where I am at. We'll see.

[kat73]

Really glad to see you continue to do so well, Scuba!  What do you mean by "M.D.Anderson scale"?  Don't they use International Scale?

[scuba]

Really glad to see you continue to do so well, Scuba!  What do you mean by "M.D.Anderson scale"?  Don't they use International Scale?

 

M.D. Anderson uses their own scale because they can. Correlation studies have shown that International Scale is roughly 0.35 M.D. Anderson's value. So my < 0.01 is roughly < 0.004. Regardless - the value on both scales is too low to be "useful" as a measure. All it means is that bcr-abl protein transcripts "exist" in my blood - or not. The "not" being it could be a false positive. Practically speaking I am borderline PCRU. 

 

(Additionally, MMR in M.D. Anderson scale is reported as PCR < 0.3%, as opposed to 0.1% for I.S.)

[rcase13]

CONGRATS!!!!!!

[rcase13]

I can only imagine taking 1/10th the dose of Tasigna. Please report back if you feel a difference in side effects. I just had my yearly echo on my heart as required on Tasigna. I bet at 1/10th the dose I wouldn't have to have that test.

[scuba]

Rcase - I haven't had any side effects I could feel since taking 20mg Sprycel. I'm sure it is affecting me in other ways because my RBC count is below normal (mild anemia) only when I take the drug.

[PhilB]

Congratulations Scuba.  It's great to know that you are doing so well (and annoying that the pesky tests are so sensitive they can still detect such low levels!)

[Marnie]

Congrats!  Aren't you a little nervous about going to 10 mg with only 6 month PCR test?  I would be. 

 

That said, I've been doing 25 mg Sprycel (cutting my 50s in half) for a bit over a month and my latest PCR was zero (at least that's what the nurse said over the phone, though she did have difficulty reading the report.  I need to get a copy to verify.  I currently have 3 month PCRs, but only see the doc every 6 months so haven't seen the report with my own eyes).

 

Anyway. . . hope your results continue to be excellent.

 

Marnie

[r06ue1]

Congrats Scuba!  

 

If you lower your dose to 10mg, will you get more frequent testing?  Just want you to be safe.

[scuba]

Congrats Scuba!  

 

If you lower your dose to 10mg, will you get more frequent testing?  Just want you to be safe.

 

I just heard back from my doctor and he's fine with me lowering dose to 10mg...but not 20 mg every other day as I had wanted to do. I'll have to wait until I run out of 20 mg tablets as it is near impossible to split the already tiny pills. And the 10mg is a special order. 

 

I won't require frequent testing even on reduced dose. When I stopped Sprycel altogether to try cessation, I never lost MMR even after nine months - well past the six month window. My history is why my treatment is customized. CML can be a very slow disease when in chronic phase and is that way for me (blasts < 3%; zero even better, my blasts are zero). After six months, if my PCR were to climb I would certainly catch it long before it would become an issue. And I would still be taking 10mg at that time.

 

I fully expect 10mg to be sufficient to keep my CML where it is. I just don't need much for it to work apparently. Of course I am doing other "nutrition" based things that I am fairly convinced helps what little Sprycel I take do its job.

 

I actually very much want to try cessation again, but then I would have to be tested every month. Taking Sprycel is almost worth not having to drive/park/wait at M.D. Anderson! When my doctor agreed I don't have to be tested but for every six months, I rejoiced just on that fact alone (no driving there).

[gerry]

Good news Scuba

How small are the tablets, I have a pill cutter and it is triangular near the cutting blade and use it to cut my tiny cholesterol med in half.

[scuba]

Good news Scuba

How small are the tablets, I have a pill cutter and it is triangular near the cutting blade and use it to cut my tiny cholesterol med in half.

 

They're almost microscopic.

[hannibellemo]

Congratulations Scuba.  It's great to know that you are doing so well (and annoying that the pesky tests are so sensitive they can still detect such low levels!)

Scuba,

 

Good news! Especially with no more BMBs in your future!!

 

Hi, PhilB,

 

It's always nice to find a post from you.

 

My onc mentioned yesterday that the tests continue to get more sensitive. 

[Taylor]

Scuba, do you know why Dr. Cortes doesn't want you to do every other day? I'm doing 100mg every other day test on my own, wondering if I should split the pills and do 50mg per day? Or would your dose be so low that it could get concerning to split it apart, considering Sprycel's half-life?

[scuba]

Scuba, do you know why Dr. Cortes doesn't want you to do every other day? I'm doing 100mg every other day test on my own, wondering if I should split the pills and do 50mg per day? Or would your dose be so low that it could get concerning to split it apart, considering Sprycel's half-life?

 

I haven't asked him yet. Personally I don't think it should matter, but his experience is probably at work here.