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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.

?

It would be best if your doctor prescribed 20 mg. Invite him to reach out to Dr. Jorge Cortes (Director, Georgia Cancer Center). Dr. Cortes is a recognized expert in CML (He writes the protocols) and routinely prescribes 20 mg for patients with pleural effusion and other adverse events (myelosuppression). He prescribed my 20 mg dose back in the day for main line treatment when my CML was much higher (PCR > 1%) than what you have now (PCR < 0.01%).

Also - consider a Keto diet to put your body into ketosis regarding CLL. Read up on CLL and ketosis (i.e. low sugar) and fasting.

In general, cancer requires a glucose rich environment. When forced to compete for glucose in the body, cancer cells have a hard time. Fasting is not a cure - but in conjunction with precision medicine (targeted therapies), may put patients into remission.

How about Moffitt, Tampa, FL, Dr Javier Pinilla?

I was thinking about calling MD Anderson in Houston to see if they have a second opinion program. But now I’m thinking maybe I should call this Georgia Cancer Center. ?

Moffitt is excellent.

Most times I send them a message they write back that it’s too complicated to explain in the “patient portal“. I just don’t understand it. And I am just not convinced at all that I should be going on 50 mg of Sprycel. I have contacted MD Anderson and I await their second opinion set up; I have also contacted the Georgia cancer center where the doctor Cortes is. perhaps whichever comes first I will try to go to. I’m going back to Moffitt Wednesday where we have to drive all the way up there 2 1/2 hours each way for five minutes for them to tell me OK now go home and take 50 mg.

Or it may be possible to talk my local Oncologist, the guy who missed everything and said he wouldn’t do anything about the plural effusion, and when I say he I mean his office. Maybe I can talk him into 20 mg.

 

Yesterday Pulmonary Dr wants chest another xray, depending on what he sees (remaining pe) then he will look for his idea of possible Chylothorax.

ct scan, etc.

if and when he gives ok/all clear to lungs, then —coming back from moffitt today— i should return to local hema dr and tell him that i am eligible to stop treatment! then, they said, he would watch PCR every month for 1 year.

so, depending on my lungs, this was good news. instead of going back on at half, which i was not sure i was going to do without a second opinion from, hopefully, Dr Cortes. i already made those contacts, but this hopefully nixes all that. :)

i self interrupted treatment about 7/2. i remain off through any and all of this. 

thank you, i’ll let you know. might be a month or so.  

Where can I read the different levels of Dasatinib/CML responses?

Eg, I am in Complete Cytogenic Response; I am not in Complete Molecular Response.

Plus, I have CLL. So I’m trying to figure out if I can really go off Dasatinib. 

My CML level (from peripheral blood) is .008xx.

FISH is negative for BCR-ABL1.

The author of the 3rd article linked above prescribed 20 mg dasatinib for me. My CML quickly fell to MMR and within a year to below detection. I no longer take any dasatnib and I monitor for relapse (> 18 months so far). In the case of dasatinib, the key is to find the lowest dose which works. Often it will work better than a higher dose when adverse events (pleural effusion, myelosuppression) are an issue.

Then I must find new Drs. 

I await VA grant or deny to new care, particularly Dr Cortes. 

Thank you.