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Metastatic Breast Cancer treatment options

Posted by junec @junec, Oct 13, 2020

Hello all, Firstly thank you for creating this forum. Late August I was diagnosed with stage 4 MBC that has gone to @3 bones and through the skeletal system. Bone biopsy confirms BC in bones but PET shows the bones are not hypermetabolic where the breast & lymph are hypermetabolic. I'm in Raleigh NC. My surgical & medical oncologist have ruled out surgery, chemo & rad leaving me with one option, Ibrance with an inhibitor. I've read the trials ( 2016-17) on Ibrance and it seems like 79% of participants have lower immune responses. Firstly, Like to know if anyone has feedback on a newer protocol/drug regime as this seems to have been developed 3-4yrs ago. And anyone have personal experience with Ibrance if they could let me know what their day is like, quality of life. I understand everyone's different... I'm 68yrs, living alone and this decision weighs heavy on my shoulders. Thank you for your responses.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 23, 2021
In reply to @carbut58 "Thank you so much for all information about the ibrance . I started on 125mg in..." + (show)
@carbut58

Thank you so much for all information about the ibrance . I started on 125mg in March.I had my first breast cancer in 1996 went through chemo radiation and estrogen blockers . I’m 2014 breast cancer again had a double mastectomy no treatment. I’m 2021 had a T9 compression fracture In my spine and was diagnosed with stage 4 . It’s in a few bones . Tumor markers are way down. It’s sounds like you are doing really well on the ibrance . That’s always wonderful to hear..I also play golf snd walk but do get tired and have to rest a little more. Do you notice tiredness ?

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Welcome Carbut. I’m glad to hear you are doing well on Ibrance. Good for you to get out and golf and walk despite the tiredness. You might be interested in connecting with Sharon and LeeAnn in this discussion:
- Ibrance and Letrozole: Newly Diagnosed Treatment https://connect.mayoclinic.org/discussion/ibrance-and-letrozole-newly-diagnosed-treatment/

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adanab | @adanab | Apr 27, 2022

I'm kind of amazed that there is so little medical information in this Mayo chat group. But here are my questions:
1) I'd like to know if anyone has feedback on a newer protocol/drug regime as this seems that Ibrance/Letrozole was developed 3-4yrs ago. I have Stage 4 mets BC to the bones, original cancer was in 2006. Was on Ibrance/Letrozole for only 7 months before it stopped working. 2) Am now going to regime #2 - Afinitor 10 mg/Faslodex injections. Anyone want to share their experience with regime #2?

REPLY
3 replies
pjsfla | @pjsfla | Apr 27, 2022
In reply to @adanab "I'm kind of amazed that there is so little medical information in this Mayo chat group...." + (show)
@adanab

I'm kind of amazed that there is so little medical information in this Mayo chat group. But here are my questions:
1) I'd like to know if anyone has feedback on a newer protocol/drug regime as this seems that Ibrance/Letrozole was developed 3-4yrs ago. I have Stage 4 mets BC to the bones, original cancer was in 2006. Was on Ibrance/Letrozole for only 7 months before it stopped working. 2) Am now going to regime #2 - Afinitor 10 mg/Faslodex injections. Anyone want to share their experience with regime #2?

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I had gene sequencing , which pointed to Piqray but oncologist said no , using ibrance w Faslodex shots. From all I've read , these cancer viruses can mutate and outrun the treatments , so there are many to try when that occurs .I'm MBC stg 4 , was on arimidex which failed also , at 4+ yrs . Best Regards, please keep posting . Good Luck with this . PJSFLA

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1 reply
pjsfla | @pjsfla | Apr 27, 2022
In reply to @pjsfla "I had gene sequencing , which pointed to Piqray but oncologist said no , using ibrance..." + (show)
@pjsfla

I had gene sequencing , which pointed to Piqray but oncologist said no , using ibrance w Faslodex shots. From all I've read , these cancer viruses can mutate and outrun the treatments , so there are many to try when that occurs .I'm MBC stg 4 , was on arimidex which failed also , at 4+ yrs . Best Regards, please keep posting . Good Luck with this . PJSFLA

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Try another support/chat group at "Inspire" 43K members there ,much more info . Hope it helps you too .Best , PJSFLA

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leeann66 | @leeann66 | Apr 28, 2022
In reply to @adanab "I'm kind of amazed that there is so little medical information in this Mayo chat group...." + (show)
@adanab

I'm kind of amazed that there is so little medical information in this Mayo chat group. But here are my questions:
1) I'd like to know if anyone has feedback on a newer protocol/drug regime as this seems that Ibrance/Letrozole was developed 3-4yrs ago. I have Stage 4 mets BC to the bones, original cancer was in 2006. Was on Ibrance/Letrozole for only 7 months before it stopped working. 2) Am now going to regime #2 - Afinitor 10 mg/Faslodex injections. Anyone want to share their experience with regime #2?

Jump to this post

Hello, I am also stage 4 Mets to bones. Was on Kisqali and Arimidex for 18 months then it stopped. I switched to Afinitor and Exemastane but has severe reaction, rash and difficulty breathing so that was stopped after 1 month and am now started second round or Xeloda, oral chemo. So far so good! Hope they find the right mix for you, thanks fully for us there are several options!

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windyshores | @windyshores | Apr 28, 2022

breastcancer.org is another great site for info

I recently watched a video on MBC on Embrace. There are quite a few in the series. https://www.bing.com/videos/search?q=Embrace+metastatic+breast+cancer&FORM=HDRSC4

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 29, 2022
In reply to @adanab "I'm kind of amazed that there is so little medical information in this Mayo chat group...." + (show)
@adanab

I'm kind of amazed that there is so little medical information in this Mayo chat group. But here are my questions:
1) I'd like to know if anyone has feedback on a newer protocol/drug regime as this seems that Ibrance/Letrozole was developed 3-4yrs ago. I have Stage 4 mets BC to the bones, original cancer was in 2006. Was on Ibrance/Letrozole for only 7 months before it stopped working. 2) Am now going to regime #2 - Afinitor 10 mg/Faslodex injections. Anyone want to share their experience with regime #2?

Jump to this post

Hi @adanab, are looking to connect with medical professionals?
Mayo Clinic Connect is an online community, hosted by Mayo Clinic, for patients to connect with other patients, share experiences, tips, and to get and give support.

You might be interested in these discussions related to your questions:
- Ibrance and Letrozole: Newly Diagnosed Treatment https://connect.mayoclinic.org/discussion/ibrance-and-letrozole-newly-diagnosed-treatment/
- Anyone have experience with Afinitor + aromatase inhibitor? https://connect.mayoclinic.org/discussion/afinitor-everolimus/
- Abemaciclib and Falsodex Treatment https://connect.mayoclinic.org/discussion/abemaciclib-and-falsodex-treatment/

@mhsosa @pampurr @sharonyb4000 @ja5747 @thielmann1 @trivia @nikki727 may be able to share more about treatmentwith everolimus (Afinitor) and fulvestrant (Faslodex).

When do you start the new regimen, @adanab?

REPLY
pbnew | @pbnew | May 7, 2022
In reply to @dianamiracle "@junec. I have met bc to the bones. I have now gone thru all three of..." + (show)
@dianamiracle

@junec. I have met bc to the bones. I have now gone thru all three of the AI’s, as I have had severe reactions to each of the meds to the point when on exemestane had me feel like I was dying. There have been recent articles about ibrance on the mews and there seems to be such a slight benefit it may or may not be worth taking. If it makes you feel worse and only gives you 3-4 more months of pain and agony is it worth it? I don’t mean to sound pessimistic but having this disease is hard enough but the horrific side effects I had were worse. Have decided to take a natural route, but this is not for everyone.

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Hi. I’m new to this thread. Got similar diagnosis in January 2022. I’ve taken Letrozole for 3 months with no issues. Started Ribociclib, similar to Ibrance, end of March. It was awful. I’m disturbed that oncologists are not disturbed by low white blood count, high liver numbers and comprised immune system. I’d like to ask how are you doing with the natural route?

REPLY
murrayann | @murrayann | Jul 26, 2022
In reply to @djwc "I am starting 10th month on IBRANCE & letrozole-my side effects are fatigue, hair loss &..." + (show)
@djwc

I am starting 10th month on IBRANCE & letrozole-my side effects are fatigue, hair loss & joint pain. So far the drugs have stopped new progression of bone Mets. My side effects are tolerable-exercise, good nutrition, prayer & support of family & friends certainly help to counteract & keep me positive & hopeful.
At start, Dr lowered ibrance dosage as he monitored my WBC. With lower dosage, WBC was not as severe.
@junec-good luck to you as you make decisions!

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My husband was on Ibrance and Letrozole for 7 months. It stopped progression and tumors were shrinking. However white blood cell counts were too low so they switched him to Verzenio-just starting. He also had some radiation to back and hip during this time, and I think this affected blood cell counts too. With Ibrance he initially had some nausea, but this stopped. Fatigue was a concern. Not much trouble with infections during that time…maybe 1 cold. We mask up but are still out and about.

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callalloo | @callalloo | Jul 26, 2022

Report today on ASCO Post in case people on letrozole and ibrance want to ask their doctors whether this changes any treatment plan.

PALOMA-2: No Overall Survival Benefit Reported With Palbociclib/Letrozole in Advanced Breast Cancer

"The final overall survival analysis of the phase III PALOMA-2 trial has shown no significant benefit for palbociclib given with letrozole, vs letrozole and placebo, as a first-line treatment in hormone receptor–positive, HER2-negative metastatic breast cancer.

The results were reported at the 2022 ASCO Annual Meeting by Richard Finn, MD, Professor of Medicine at the David Geffen School of Medicine, University of California, Los Angeles."

https://ascopost.com/news/july-2022/no-overall-survival-benefit-reported-with-palbociclibletrozole-in-advanced-breast-cancer/?utm_source=TAP%2DEN%2D072622&utm_medium=email&utm_term=4cf962011c9ee11a42cbb2ed9ce1807f
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