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Ibrance and Fulvestrant for Stage 4 MBC, Lung Fills w Fluid

Posted by pjsfla @pjsfla, May 26, 2022

Hello All, Just done w the 3rd cycle of Ibrance , and also taking the faslodex (fulvestrant ) shots / My R lung keeps filling w fluid , having a drain procedure called thoracentesis , at the hospital , roughly every 10 days , just to breathe . I have been searching for someone who has anything like this , as their reality ,and have found ZERO . I feel like it's a "Wait and See " situation , and am hoping for anything positive to give me hope. Anyone ?? I feel like it's all for nothing sometimes , and then jump back into positive hopefulness , all I have to hold onto for now ... So discouraging ,but at least the side effects aren't stopping me , so count my blessings for that anyway .

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adanab | @adanab | Jul 6, 2022
In reply to @pjsfla "Hello All, 5th cycle of Ibrance , also faslodex (fulvestrant ) shots / My R lung..." + (show)
@pjsfla

Hello All, 5th cycle of Ibrance , also faslodex (fulvestrant ) shots / My R lung keeps filling w fluid , having the not fun drain procedure thoracentesis , at the hospital ,every week now , just to breathe . Searching for someone who has anything like this , as their reality ,and have found ZERO . I was told by oncol it's "Wait and See " situation, "see you in 3 mths" .… main side effects are huge fatigue, very short of breath ,some neutropenia , with a dose of pain and fear , to just exist 1 week at a time . PET seemed to indicate treatment is working against the stage 4 BC, but my week to week existence has me feeling it's useless postponement. So discouraging.

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https://connect.mayoclinic.org/comment/723588/
I think this link will get you to the “fatigue” discussion

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jul 6, 2022

@pjsfla I noticed you are still having issues with fluid in your lungs. I have been really hoping this would start to resolve as the cancer shrunk.
Are you getting any new answers about this? Have you looked into a second opinion?

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2 replies
seagoat3 | @seagoat3 | Jul 7, 2022

I am a breast cancer survivor, ER and PR +, not like your case. However, I am on a soccer trip now with this mom who is now almost 5 years out. Just throwing out an option. All the best!
https://www.usatoday.com/story/life/parenting/2019/10/25/triple-negative-breast-cancer-mom-fought-functional-profiling-treatment/4062474002/

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pjsfla | @pjsfla | Jul 7, 2022
In reply to @auntieoakley "@pjsfla I noticed you are still having issues with fluid in your lungs. I have been..." + (show)
@auntieoakley

@pjsfla I noticed you are still having issues with fluid in your lungs. I have been really hoping this would start to resolve as the cancer shrunk.
Are you getting any new answers about this? Have you looked into a second opinion?

Jump to this post

New answers ? Ha ! Thats a joke . They say " I don't know " and "See you in 3 mths " THATS IT . This is my 2nd oncologist , and I have seen "the best" pulmonologist and also at least 6 interventional radiologists , all "I don't know" and "See you next week" . I'm SO tired of this , just living 1 week at a time , the stress of gasping for breath by Tuesday nights (I go every Wed at 10:30 ) and getting the "You're not dead yet " from family also , like I should be dancing for joy . What garbage .

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pjsfla | @pjsfla | Jul 7, 2022
In reply to @auntieoakley "@pjsfla I noticed you are still having issues with fluid in your lungs. I have been..." + (show)
@auntieoakley

@pjsfla I noticed you are still having issues with fluid in your lungs. I have been really hoping this would start to resolve as the cancer shrunk.
Are you getting any new answers about this? Have you looked into a second opinion?

Jump to this post

Forgot to say , TY for asking . You are 1 of 1 .

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jul 7, 2022

Ugh, for the no new answers. This has to be terrifying and exhausting. I cannot imagine how awful this is. This patchwork of I don’t know answers seems like the trouble we have in our little rural area. We have to travel for good care.
Can I ask if you are close to a large cancer center you might be able to get a comprehensive look?

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1 reply
pjsfla | @pjsfla | Jul 11, 2022
In reply to @auntieoakley "Ugh, for the no new answers. This has to be terrifying and exhausting. I cannot imagine..." + (show)
@auntieoakley

Ugh, for the no new answers. This has to be terrifying and exhausting. I cannot imagine how awful this is. This patchwork of I don’t know answers seems like the trouble we have in our little rural area. We have to travel for good care.
Can I ask if you are close to a large cancer center you might be able to get a comprehensive look?

Jump to this post

That IS what I need , but it seems in Portland, OR ( where I moved to ) the hospitals are understaffed and I'm always fighting my way in , as the squeaky wheel saying goes. Even after many phone calls and then also getting my records and sending my scans and files to Providence , no reply or follow up , nurses about to strike also .. OHSU is another option . It's been "at my cost" to get in there ,and no one will say how much it will cost , for the 2nd opinion there , as Kaiser has refused to cover it . It's exhausting !!

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jul 11, 2022

Sadly what you are describing isn’t just Oregon. Since the pandemic, this is the situation everywhere. I have family having this same issue in 3 separate states. Are you being seen by Compass Oncology? If not, that might be another place to try for a second opinion. I believe that is in Wilsonville, I have a friend who lives in Portland and was treated there. Worth a shot.

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