plureral Effusion with lung mets

Imagine
Imagine Member Posts: 165
edited November 2020 in Stage IV/Metastatic Breast Cancer ONLY

I have a question for the lung mets ladies or gentleman out there. I am now on Xeloda because Ibrance/Falsodex failed after 8 months. I will not know this is working for about a month with scans. I have a small plueral effusion that does not cause me any discomfort. I was doing some research and I was stunned to learn that with plueral effusion survival times are 3-12 months??? When I read that on a PUB med study which was done in 2018 I was so shocked because I am sure I have read on these posts that people have lived years. I just hope the Xeloda works and gets rid of the effusion. Thank you in advance, and because I do not see many people on these boards with lung mets I will post this question or reassurance plea on several different topic areas.

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited October 2020

    Imagine,

    I had severe pleural effusion 4 years ago. They removed 3 liters of fluid the first time I was drained. It all came back a month later and I needed to have a Pleurex catheter inserted and drained my own fluid every few days for six months. Eventually I was able to have the catheter removed. I still have a small amount of fluid in a pocket-but like you-it doesn't cause me any problems. I only notice it when I am upside down in shoulder stand-I sometimes feel it gurgling. So don't get too worried about statistics or what Dr. Google says. I know there are other women on the board who have also lived a long time after having pleural effusion. I hope that Xeloda will be very effective for you. Best wishes.

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  • Imagine
    Imagine Member Posts: 165
    edited October 2020

    Chicagoan

    Do you have lung Mets? Mine are pleural based

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited October 2020

    When they checked the pleural fluid 4 years ago there was no cancer in it-the pulmonologist seemed skeptical and almost disappointed by that. The stentosis really hurt so he kept saying "Your body is full of cancer!" I have a few spots in my lungs-very tiny-which are assumed to be cancer but they don't seem to be growing or increasing.

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited October 2020

    Hi Imagine,

    My metastatic disease presented as a right pleural effusion almost 16 years after my original diagnosis of stage 2a. I also have pleural mets in that lung which now is damaged from all the fluid I had at the time. Like Chicogoan, I had about 3 litres drained off but it just came back. I had a pleurx catheter installed which allowed them to drain my lung twice a week. It took about six months but finally three fluid dried up with the exception of a few loculated pockets which still persist. They don’t give me any trouble.

    I’m almost four years from the lung full of fluid and doing well. My MO certainly seems to think I have plenty of runway left as well. I also have extensive bone mets but so far my liver remains clear.

    There is a thread for lung mets but it isn’t very active primarily because once you have them under control the lungs don’t seem to be a big issue. Folks seem to gravitate more to the treatment threads or other areas of concern.

    All to say, ignore what you read. It’s not accurate.

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  • Imagine
    Imagine Member Posts: 165
    edited October 2020

    Hi Sadiesservant,

    We have a few things in common, I was DX with Stage 2a also about 13 years before my Mets showed up in lung pleural area.

    You are right when you say don’t believe all you read on Dr. Google. I also noticed you had been on Ibrance in 2017 and then Xeloda, are you now on Verzenio? How did your ONC determine you could go back on a CDK46 type drug?

    I was wondering why not many are on this thread for lung Mets, I like what you are saying about once under control, it doesnt seem to cause many issues!!

    Thanks again for the encouragement.


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  • Imagine
    Imagine Member Posts: 165
    edited October 2020

    Hi Sadiesservant,

    We have a few things in common, I was DX with Stage 2a also about 13 years before my Mets showed up in lung pleural area.

    You are right when you say don't believe all you read on Dr. Google. I also noticed you had been on Ibrance in 2017 and then Xeloda, are you now on Verzenio? How did your ONC determine you could go back on a CDK46 type drug?

    I was wondering why not many are on this thread for lung Mets, I like what you are saying about once under control, it doesnt seem to cause many issues!!

    Thanks again for the encouragement.


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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited October 2020

    Hi Karen,

    Ibrance didn't fail me. I had to stop due to issues with severe anemia. Blood just couldn't tolerate it even on a relatively low dose. My time on Xeloda was short but I will probably go back to Madame X at some point. At the time I just didn't feel it had things under control and then hand foot syndrome reared it's head early on. Switched to Faslodex which has been holding steady for some time.

    Starting Verzenio was a strategic decision on my part. It had finally been approved for use in Canada but was still difficult to access. (I believe it still is.) While it’s approved as a monotherapy in theory, in practice I think it will be very difficult to get the okay to take it alone here. I was already on a second line hormone treatment having had progression on an AI so felt it was now or never. Fortunately my MO agreed to try to get me on it. Just reached the one year mark and so far so good. It’s not a picnic but tolerable on a lower dose.

    Sounds like you and I both have more indolent disease. Perhaps that explains the affinity for the pleural space.

    Take care!

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  • lsharvey822
    lsharvey822 Member Posts: 257
    edited November 2020

    Chicagoan - was the pleural effusion from the Ibrance? Did they let you continue Ibrance after that? I was dx stage 4 in January and have spent the year getting myself thru IV chemos (Taxol/Taxotere) holding onto the idea that I'd switch to Ibrance at some point and life would go back to something closer to normal. I managed to do 2 rounds of Ibrance before I was diagnosed with pneumonia. At this point they haven't allowed me to go back on Ibrance yet but haven't said they won't. Just worried! I had heard so much good about Ibrance and now I'm terrified they won't let me have it and I'll be back to IV chemo.

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited November 2020

    lsharvey-The pleural effusion was from untreated cancer. Ibrance dried up my pleural effusion in about 6 months. I would try and get back on it if your pneumonia has cleared up. I haven't done IV chemo yet-I went straight to Letrozole and then Ibrance once I was diagnosed Stage 4 de novo. So far it has worked for me. I wish you all the best with your treatments.

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