MBC spread to pleural space

Posted by mom23boys @mom23boys, Mar 8, 2022

Good morning. I have been on Ibrance/Letrozole for 2 yrs. 8 months and was doing fine. Somewhere between Oct. 2021 and my recent CT scan 2-28 I developed 2 pleural-based masses with small amounts of loculated pleural fluid. How in 4 months do you go from stable bones and reduction of lung nodules and no pleural effusion to a 1.5cm and 2cm tumors within the pleural space? Somebody missed something somewhere last scan I expect. They removed my port in November due to never using it and skin cancer needing removal along the edge. Now I'm looking at a treatment change. Has anyone else had these tumors within the pleura and if so how were they treated? Another site I visit has a lovely, knowledgeable lady who's heard Kisqali with Faslodex may be worth looking into. Any input or comments would be greatly appreciated.
Thank you
Peggie

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@mom23boys, Peggy, I'm just seeing your message now. I'm sorry to hear that this has happened all so suddenly or at all! @pbnew @leeann66 are talking about ribociclib (Kisqali) over here:
- Ribociclib: Looking for information about efficacy and side effects https://connect.mayoclinic.org/discussion/rebociclib/

When do you discuss treatment options with your team?

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This is just heartbreaking news. I would like to add a dollop of hope to this conversation. I don’t have the same exact issues as you, I don’t believe any of us have the same things happen in the same way. I have progression free MBC, there is more hope today than ever before, and more treatments available to us than ever before. It isn’t just the death sentence it used to be. Many oncologists consider this to be a managed disease at this point. I would love to hear about what choices the doctor discusses with you. I will try and remember to check back in here with you in a few days or please tag me or reply if you would like to talk more. In the meantime try not to make yourself crazy with “what if’s”.
Has your doctor ordered a pet scan yet?

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@mom23boys how are doing? Have you gotten any more information yet? Have you seen your doctor and talked about your options yet?

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@colleenyoung

@mom23boys, Peggy, I'm just seeing your message now. I'm sorry to hear that this has happened all so suddenly or at all! @pbnew @leeann66 are talking about ribociclib (Kisqali) over here:
- Ribociclib: Looking for information about efficacy and side effects https://connect.mayoclinic.org/discussion/rebociclib/

When do you discuss treatment options with your team?

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Hi Colleen, how have you been? Good I hope. I just saw my Onc yesterday. We looked at the CT Scan and he apparently spotted one of the possible pleural lesions in October but it was so small he didn't think it worth mentioning. I did my research prior and found some little ditties called "pseudo tumors" which are actually not tumors at all. They are fluid collections that are found in the fissures of the lung and along the outer edges I guess. They can be mistaken for tumors. Due to this and pain in my left hip I was hoping we could radiate to relieve pain, he's ordered a PET Scan. Hopefully my insurance will approve it. He said it may take a "peer to peer" ( I guess like a tumor board to justify the need). I'm a bit worried about the loculated effusion. It sits in my upper rt. back of the lung and they won't be able to simply drain it like my original pleural effusion. It's basically "trapped" a bit in from the lung edge but he says too close to the heart so it would require a thoracic surgeon take a look. He said we'll watch closely and see if it gets bigger (CT in 3 months rather than my ones that have been extended out due to stability). We discussed Faslodex as a change if the PET shows these as new tumors and "possibly" any number of others, including infusion chemo. I've heard to try to hold off on that until after other things have been tried. Lots of unknowns.
Thank you for the links to those with Kisqali info. Knowledge is strength.
Have a great day.
Peggie

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@auntieoakley

@mom23boys how are doing? Have you gotten any more information yet? Have you seen your doctor and talked about your options yet?

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Hi Chris. Thank you for responding. I'm doing pretty good, all things considered. Please see my comment to Colleen as I feel like I wrote a book, ha...ha.. Should be about a week for a PET Scan approval and then scheduling. Until then I'm still taking my Ibrance/Letrozole and we'll go from there.
Thank you again for asking.
Peggie

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Two years and 8 months on this drug is so good to hear, years past you wouldn’t have had the 8 months. I am hoping this turn out to not be cancer and you can keep counting.
@eku , I hope this can bring you hope.

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