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pleural effusion

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i told my dr 14 months ago that i had a right lung pleural effusion (pe).

(i have/had been take 100mg sprycel for about 4.5 years, interrupting about a month ago.)

i gave the dr the report noting a moderate pleural effusion.

they did nothing.

6-7 months later i delivered to dr another, new, report saying the pe was now large.

(the dr who found the large pe said i must call drs right away.)

my cml dr office said they would do nothing. then my every 3 month appt, 1 week later, they repeated, if i have problem go to ER.

i saw a pulmonary dr on my own and had thoracentesis (1000ml removed), another 4 months later.

now at another cml dr for second opinion and follow up.

i told him that i discontinued sprycel myself. dasatinib + pe protocols are all over internet. 

he said i was right to interrupt.

he gave me steroid and lasix and in two weeks to go to 50mg sprycel.

i said case studies suggest pe will return, how about another drug? he said no, this is standard.

i say: yeah but. i don’t want a permanent routine of chest xrays and thoracentisises. this is probably no choice for me.

i did ask: at what point would/do you interrupt sprycel if pe shows up?  because other dr did nothing. i NEED to know if i should have interrupted sprycel on my own sooner.

he says impossible to answer. <— this is why i write. WHAT?!!!
baloney. what is your/dr experience then?
i await answer. 

ps. what is best cml hospital in america?

 

Tedro,

What is your current PCR level? This is reported as a percentage. If your PCR is less than 1.0%, ideally less than 0.1% you should consider reducing your sprycel dose to 20 mg (strongly consider it!).

Anyone who suffers pleural effusion (PE) from sprycel never should be taking full dose or even half dose sprycel. Research has shown patients who develop pleural effusions from sprycel are exquisitely sensitive to sprycel's action. This means you are likely to have very good response to sprycel for CML on a much lower dose than other people. If you can stay on sprycel and manage the PE's, you are likely to have an outstanding CML response.

Any time you develop a PE, you should stop sprycel and resume only after the PE resolves. When you resume therapy, cut the dose again so you can eventually see if you can stay on sprycel without PE's. I managed to cut my dose to 20 mg every other day and achieved an "undetected" status. I currently do not take any sprycel as I test treatment free remission. You may get there too taking a low dose.

M.D. Anderson in Houston is an outstanding Leukemia center. Memorial Sloan Kettering in New York and the Georgia Cancer Center in Augusta, Georgia are other excellent facilities.

Thank you!
Is this the same as PCR (yes, I have seen PCR before, just wondering if this the same):

BCR/ABL Ratio IS % 0.0082 %

Also, very important, at what point after pe discovery should you interrupt Sprycel: Mild? Moderate? Large?

Thank you.

Tedro,

As I suspected, your bcr-abl (PCR) is less than 0.01%. This level is below the precision of the test and indistinguishable from "undetected" statistically.

For comparison, when I was at 0.1% (two logs higher than you!), I dropped my sprycel dose to 20 mg every other day. And my bcr-abl percentage dropped further and eventually disappeared. I believe you can easily achieve the same.

You are very sensitive to Sprycel as most people who suffer pleural effusions are also as sensitive. By cutting your  dose, you may be able to avoid PE episodes so you can continue your great response.

(sprycel is a so-called "threshold" drug. Once you achieve response, more drug is not better (and this is especially true with P.E's). You only want to take sufficient drug dose which leads to a downward trend in CML. Once that trend is achieved, more drug is not necessary and often can lead to poor response as well as worse side effects.)

wow. thank you, scuba.

my chest xray says i still have small to moderate pe. loculated with atelectasis.

the color of the fluid indicates further that it was there a while (too long).

my Dr says we’re going to half dose, 50 mg.

do i have a choice? find another Dr?
 

also, you should know i also have CLL. Dr said Sprycel was chosen for this reason. Dr also said had i showed up with only CLL, then he would not have initiated treatment. (first Dr missed the CML and was trying to get me to ibrutinib for a year. so i went for second opinion where they said he missed the CML and that had i not come there and started ibrutinib… wrong drug, they said.)

i don’t think can take less unless i try to split a 50 mg pill — which i have seen and are pretty small.

?