Malignant Pleural Effusion

PompeyPete
Posts:6

Hi all, I’m hoping someone can help here

I was diagnosed with stage 4 in 2018 due to a malignant pleural effusion and have been on Tagrisso ever since due to EGFR mutation. I am still on that but am trying to think ahead for when I do progress..hopefully not for a long while though.

From pretty much day 1 my consultant has warned that it is very unlikely that I will be eligible for any clinical trials due to not having a measurable tumour as the MPE is (all!) I have, no solid tumour has been seen.

Now does that mean;

1) There are no trials for MPE (or similar). If so that seems strange as as far as I understand it’s quite a common issue.

2) What is the common method someone with an MPE progresses? Does the fluid just build up again with no solid tumour or are there cases where a progression results in a solid tumour…and if so presumably that would mean eligibility to clinical trials?

I’ve tried to find stats on this but am wary of google as it can be terrifying...anyone with thoughts/ideas? Thank you.

Forums
Stage IV NSCLC

Reply # - August 27, 2021, 07:38 AM

JanineT GRACE …
Posts: 657
GRACE Community Outreach Team

Hi, a quick note to say I see your post and will get to you soon.

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Reply # - August 28, 2021, 01:00 PM

Jim C GRACE Co…
Posts: 147

GRACE Community Outreach Team

Hello PompeyPete,

 

Welcome to GRACE. As you were probably told by your doctor or have read in your research, a malignant pleural effusion indicates that there are cancer cells in your bloodstream, which is how they reached the pleural fluid and made your diagnosis stage four. With circulating tumor cells, there is the risk that the cancer will progress and solid tumors may form (or the MPE will return or increase), although we certainly hope that Tagrisso will prevent that for a long time.

 

As far as clinical trials, it's true that without a solid, measurable mass, there is no way to compare the response of patients to different treatment regimens. As a result, patients who only have MPEs or bone metastases or other difficult to measure manifestations of their cancer are routinely excluded from trials because it's impossible to compare that patient's response to the trial medication to that of other patients on the trial. Trials may study different ways of managing MPEs, but the mere fact that an MPE increases in size is not deemed a reliable indication of disease progression, as there are a number of other factors which can  cause an effusion to grow.

 

I hope that helps make your situation a bit clearer. Please do not hesitate to ask follow up questions.

 

Jim C Forum Moderator

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