CommunitiesLiving with Metastatic Breast CancerWill medication help with pleural effusion in Stage IV breast cancer?

Will medication help with pleural effusion in Stage IV breast cancer?

EL

Community Member

9 months ago

Hello, everyone. My sister was diagnosed Stage IV, hormone-positive, HER2-negative on 1/30. She has mets in pleural fluid, bones (back of head, sternum, and ribs), stomach wall, and lymph nodes. Her oncologist has started her on both Verzenio and Kisqali. Her primary symptom (actually, the same symptom that brought her to urgent care, that led to the hospital, that led to the diagnosis) is fatigue and breathlessness due to pleural effusion. A pulmonologist did a thoracentesis of one of her lungs while she was in the hospital, but said it was too risky to do the other lung. Her oncologist said that the meds should help clear the remaining pleural effusion within one to two months. She remains about the same in terms of being weak and short of breath, and now we’re in to March. Anyone have a similar experience who can help provide some reassurance that the meds will, indeed, help with the pleural effusion situation? Thank you for listening. And I’m sorry if I’m not getting some of the terminology correct; we are so new to this. Blessings to all of you. 

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accepted answer

Accepted Answer

Treatment responses can vary significantly from person to person, and while some patients do see improvement in pleural effusion with targeted therapies, the timeline can differ from initial expectations. It's encouraging that you're advocating for your sister and staying connected with her medical team - consider discussing her current symptoms with the oncologist to explore whether additional interventions might help with comfort while waiting for the medications to take effect.

3+ patients found this helpful

NN

Community Member

6 months ago

Hi there .. i am a bit in a similar situation. I have hormone positive HER2 negative with mets to my pleura (no effusion) so far but also multiple bone mets, including my skull, rib and sacrum, and L5. I started kisqali and letrozole in November and had CT a couple of days ago, still waiting for results. The idea is if my mets have grown, then I would be switched to next line of treatment, which in my case would be medication to treat my mets, which are PTEN deficient... so ur sisters doctor has likely run additional genetics on the biopsy of mets.. to see if there is PTEN deficiency or ESR1 .. I think u gotta wait for next set of imaging and based on the findings of tumor biology there are other options...

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EL

Community Member

6 months ago

Thank you so much…very helpful. And I am sending you every hug, prayer, and positive thought. 

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NN

Community Member

6 months ago

Thank you 🫂🙏likewise.. best for your sister 🩷🩷🩷

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LI

Community Member

6 months ago

I had BC 1-1/2 years ago.Stage 4. I had in my breast and bone(spine). Because I had fluid in my lungs I was tired and hard to breathe and I had cough. After they took the fluid out the cough was caming down every day. My medication are Letrozole and Ebrance thay are working for me

EL

Community Member

6 months ago

Thank you, Liljana. That’s so helpful. Sending many prayers your way.💜

PP

Community Member

6 months ago

Elaine, Dec 1, I was hospitalized with a pleural effusion and diagnosed with stage 4 MBC. The cancer somehow stimulates the yucky pleural fluid. I’ve had two thoracentesis procedures early on. I’m on Arimidex and Kisquali 600mg also oxygen. I’ve had two pulmonary checks since then. Both show some fluid but it’s not increasing. It’s still too early to know for sure what the meds are doing since I’ve only had the Kisquali for six weeks. I’m not sensing significant side effects, but my red and white blood counts have dropped. Time will tell. Being on oxygen has helped me feel better, yet I still can have it off 20% of my day now.

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EL

Community Member

6 months ago

Patricia - you are so kind and helpful. Thank you. She ended up back in the hospital a few days ago shortly after I wrote this. They drained out another 1.5 L of the gunk. Same lung. She was on Kisqali, but they had to pull her off of it because her white blood cell and red blood cell count dropped. She does have oxygen at home, which they gave her when she was first diagnosed at the end of January.Wishing you healing! Thanks again. 💜

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PP

Community Member

6 months ago

Her experience seems most similar to mine of all the conversations that I’ve read here. Sending hugs to both of you.

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GD

Community Member

6 months ago

My mets were in the pleural fluid. I had 4 thoracentisis in the first 3 weeks i had three thoracentisis. The last one was hard because it was borderline for fluid. It probably took at least 2 to 3 months for my lung to heal from being collapsed due to the fluid. On top of that, the CDK4 made me feel exhausted. I would says it was a good 4 months between the medication dose reduction and healing to begin to feel better, breath better, and start regaining energy. Has the pleural effusion resolved?

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EL

Community Member

6 months ago

Hi, Glenda. I’m sorry for all you have been dealing with and my thoughts and prayers are with you. Her pleural effusion really hasn’t consistently resolved. She has now had three thoracenteses on the same lung just since 1/30. she just got her first shot of CDK4 yesterday (second one today) to try to get her white blood cell count up. Sending blessings to you. 💜

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GD

Community Member

6 months ago

Elaine CDK 4 are not shots they are pills. Is she on Fulvestrant? I was on aromatase inhibitor and Ibrance in the beginning. They usually don't do two CDK 4S together. Recently switched to fulvesterant, which is also a hormone blocker because of side effects I get to aromatase inhibitors.

EL

Community Member

6 months ago

Glenda - I apologize. I confused it in all of this alphabet soup. What she was started on yesterday was tbo-filgrastim (Granix). And that was specifically added in four doses by shot over four days to bring up her white blood cell count. No, she is not on fulvestrant. At this point, she is only on Verzenio regularly, and we are waiting to see if she can resume Kisqali if her white blood cell count can come up. I should add that she will start Zometa infusions once every three months on Tuesday. 

GD

Community Member

6 months ago

Elaine, I am very confused. I have never heard of Kasquali and Verzenio being used together because they both do the same thing. Usually, it is verenzio or Kasquali with an aromatase inhibitor like arimidex or letrozole. Aromatase inhibitors are the heavy lifters and actually do the most work in treating cancer. Hopefully, she is on either an aromatase inhibitor or Fulvestrant. Double check what she is on. If she is not on some sort of hormone blocking drug, you may need to consider encouraging her to get a second opinion from a facility that specializes in cancer. I only had mets to my pleura, and it resolponded within a few months. I also had issues with low white counts, but 2 week breaks and lower doses help. The lowered white count from cdk4 do not respond well to drugs used to raise white counts from other types of chemotherapy.

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EL

Community Member

6 months ago

This is fascinating. I am 100% sure those are the two drugs she is on. She’s just temporarily off Kisqali because her white blood cell count crashed. EDIT: well, I thought I was 100% sure because that’s what I had in my notes from her last oncology appointment. But I just looked in her medication list and it turns out she is taking Arimidex. Sorry to cause confusion. My newness is showing. 

ES

Community Member

6 months ago

Hi I have stage I’ve MBC to my bones. Was on Verzenio and became so short of breath, could not walk across a room without stopping. I had a 1% lung reaction( no pleural effusion) to the Verzenio which I am now off. Six weeks ago started high dose Prednisone, an antibiotic and inhaler. Almost gone but scary. Not feeling you can breath is awful, hope you all continue to improve and regain some normalcy. Thankful for wonderful support group that I have

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EL

Community Member

6 months ago

Hi, Ellen. Sending so much support your way. I’m sure that was/is very scary. Reach out anytime, please. Take very good care. 💜

GD

Community Member

6 months ago

Elaine, that sounds more like what she should be on. It takes time to recover from a pleural effusion. The meds will exhaust her. Kasquali has lung side effects, as well as the other cdk4"s. She needs to watch for them. The pleural effusion should be starting to go down. A white count drop is normal. My oncologist lowered my does to manage my white count. That is why some of these drugs have time off. So the white count can recover. I have been told the medsto raise white count ussually don't help a lot and are not worth the side effects. But everyone's situation is different. I would suggest a second opinion at a different cancer center. I did and found many hospitals approach things differently. Also it can be helpful to get a better understanding of the disease and treatment. I switch to my second opinion facility. My new center approaches things differently. As a result I feel and do so much better.

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EL

Community Member

6 months ago

Glenda - you are a wealth of information. Thank you so much for helping us even as you traverse your own journey. I really appreciate you. Take good care.💜

GD

Community Member

6 months ago

Elaine. I have been on this journey for over 10 years. One thing I have learned is that you must educate yourself, advocate for yourself, and practice patience while at the same time if you're not feeling like you are getting somewhere with your current drs get a second opinion. I have switched almost all my drs. Two years ago, when I was diagnosed with my pleural effusion, I felt like most of my Drs wrote me off and didn't think I was going to live long. My primary care Dr told me not to worry about my BP. It was 170 over 90 for a year. My oncologist was good, but he retired. My new one was not so good, and I did feel comfortable with his planning. My new facility is great. I now have quality of life. I have been No evidence of Disease for about 22 months. Keep learning and ask your sisters drs questions. Get the best care you can.

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EL

Community Member

6 months ago

Glenda - very wise advice. That’s incredible. Thank you!

GD

Community Member

6 months ago

At the bottom of the main page is a button labeled resources. Click on it. Look for the tailored discussion guide. You may find that helpful when visiting the Dr.

EL

Community Member

6 months ago

Glenda - thank you! I’m still trying to figure out this site and the resources. I appreciate that. 

PJ

Community Member

6 months ago

Glenda!!! We love you and thank you for helping us through this journey!

DM

Community Member

6 months ago

Hello! I had the same thing, Plueral Effusion with surgery. What has helped me is using that breathing thing they give out at the hospital. It helped me to increase my lung capacity. Walking slowly might help too.

EL

Community Member

6 months ago

Dawn - thank you so much. They gave her one of those things (called a spirometer, I think?) in the hospital this week. But then they told her to stop using it because she had a pneumothorax. But she’s determined to get back to it. And yes, she is taking very brief walks inside her home. Thanks again, and sending you blessings on your own journey. 

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