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

Just want to say that your attitude is inspiring and so sorry for the fluid in the lungs. I hope the side effects continue to be tolerable and hope the meds work well.

Hello All,
On 4th cycle of Ibrance , and also taking 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 . It's a "Wait and See " situation , and am hoping for anything positive. 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 . PET SCAN tomorrow has me worried , since I don't know why it would keep filling , if the treatmt is retarding the cancer .... wish me luck !

Hoping your PET scan has good results regarding your treatment and gives some answers regarding your right lung. Best regards,💚🙏

Is the fluid a side effect of the Ibrance? I haven’t seen this issue discussed on other forums. It must be an awful experience. I stopped Rebociclib because it made me so breathless I almost collapsed. But it wasn’t a lung issue. It was a nosedive in the white blood count.

Hi pbnew,
Good question . No, I dont think its a side effect since it started first . Initially I had a GP who started prescribing all kinds of asthma inhalers , but I took myself off that , since I had side effects like couldn't sleep well , shaking hands , and developed a cough .. I do not have asthma either . She is now my former GP , hahah. The weird thing is just so much liquid , 1500 cc each drain ! Thats like a huge bottle of Pepsi , or a football sized bag of nastiness . At least then I can breathe better , and sleep better , so I am grateful when it's done and I'm heading out the door to go home. Had that neutropenia / low wbc also with Ibrance , but the lower dose of 100mg works better now . What treatment are you doing now ? Best , PJ

All that fluid has to be just frightening, and annoying. Has your doctor addressed why you are having all of this? Is it getting any better since you have been on treatments for the breast cancer, is this ascites, related to the cancer itself?

YES it is just awful , with NO relief in sight . Oncol has nothing to offer , and yes thinks the cancer and nothing else is causing it . NO , not getting better tho my recent PET shows very positive results as in resolutions and things gone now . So they say "it's working" but I feel awful as the fatigue is so bad , sleep 12 hrs some days and still wake up not any energy . VERY worried and they want me to dance for joy .... bizarre since it's every week now, 1500 cc each time . Losing hope /

I didn’t want to say like, so I gave a hug but, I do want to share that I liked that you are getting a good response from treatment. If that continues, at some point you might have less ascites (fluid) as well. I know things aren’t easy, I have followed what I see from you even though I haven’t posted much. I will share with you, there has been some agony in my treatments, but also much joy when I get some happiness that I never thought I would get. If you can hang on to those joyful moments, it can help you through the worst moments. Do you have moments of happiness than can help you through the hard times?

@pjsfla
I don't know if this video applies or might be helpful so will just post it FYI from the recent ASCO conference.

Robert Hugh Jones, MD, PhD, on Breast Cancer: Updated Overall Survival Data on Fulvestrant Plus Capivasertib
https://www.ascopost.com/videos/2022-asco-annual-meeting/robert-hugh-jones-on-breast-cancer-updated-overall-survival-data-on-fulvestrant-plus-capivasertib/

How did they find new cancer? I had it in 2016 and now lymph node biopsy said bc is back....scared I am 85 and was cancer free I thought.... Now what??