To start ibrance or not?: Hi everyone... - SHARE Metastatic ...

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To start ibrance or not?

Jac-genova profile image
13 Replies

Hi everyone. My mom recently had SBRT radiation to two bone metastases. Her CA 27.29 markers have dropped from 55 to 34, however her oncologist still wants her to start Ibrance in addition to the fulvestrant she is on. We are on the conservative side and would like to just stick with fulvestrant if we can. I wanted to ask if anyone had a similar experience of going through radiation, seeing their tumor markers drop, then deciding whether or not to start ibrance. Thank you

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Jac-genova profile image
Jac-genova
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Maludagui profile image
Maludagui

Hello 🌺 nice to greet you. my story. In August 2010 breast cancer and radical mastectomy, then 6 years tamoxifen. In August 2018 Metastasis in the left hip, immediate radiotherapy, tumor markers Ca27-29 was at 51 and low at 32, immediate improvement, then I started Ibrance and Letrozole. I have been 29 months. There is currently no evidence of active cells. I am stable. I work full time mostly standing and walking. If I feel pain in the bones and fatigue. But in general I feel good and active. I am 52 years old and counting. I hope it helps you make a decision. You have to have faith in science. Happy night 🌺

Jac-genova profile image
Jac-genova in reply toMaludagui

Thank you! You have a very similar case to my mom’s - she had stage 2 in 2008 followed by a mastectomy and we found out 2.5 years ago she had mets in t2 and l4 region of spine. She was on letrozole for past 2.5 years and just did radiation and now her dr wants her to start ibrance with fulvestrant. Did you have any side effects with the ibrance?

Maludagui profile image
Maludagui in reply toJac-genova

Yes. Fatigue and join pain

Alimonro profile image
Alimonro in reply toJac-genova

Good morning, I've got bone nets in spine vertebrae and chest lymph nodes, I've been on inbrance and letrozole for 4 years it's not moved and still stable. I lead a pretty much problem free life. Xx

Maludagui profile image
Maludagui in reply toAlimonro

This is good news. You are a warrior 🌸🌼

13plus profile image
13plus

IBrance has been very tolerable for me . Fatigue for the first few months but bow feel pretty normal, going on 2 1/2 years. She has had mets in two places where they could see lesions. . Radiation is not going to work systemically. It’s possible the Fulvestrant may be enough by itself to offer time but I think I read the other day some study results that showed people who had combo seemed to have longer progression-free time. Some people might not tolerate iBrance so well but by posts on here I’d say most find it very tolerable. She shouldn’t fear it. It is way, way better than any other drug I’ve been on.

hurricaneheather profile image
hurricaneheather

it is a personal choice. as one who prefers holistic over western medicine, and implements an integrative approach to well being, i was not thrilled with the treatment plan that was presented upon bc mets to the right pleura and lung dx, with pleural effusion: Ibrance, Letrozole, and Lupron. and, the tumor markers were "so high." after pleurodesis and VATS bronchoscopy in July 2015, i chose to begin the treatment, in Aug 2015, because i was determined to live. immediately, the tumor markers dropped and the tumors shrunk drastically. by the end of 2015, the body was on the lowest dose of Ibrance, and Letrozole was switched to Anastrozole. with the March 2016 PET/CT scan, there was NEAD; scans continue to show stable, NEAD. i am grateful for the treatment and continue to revisit it with the onc. the focus is more holistic and less medicine, now...

Jac-genova profile image
Jac-genova in reply tohurricaneheather

I couldn’t agree more. I too am a huge holistic medicine advocate. Hope you benefit from this information-

wellnstrong.com/category/ca...

13plus profile image
13plus in reply toJac-genova

I just looked at this site. She has some very interesting case studies resources regarding supplements!

Jac-genova profile image
Jac-genova in reply to13plus

Yes! The she is me:). I try to use pubmed for most of my research - incredibly fascinating information on turkey tail and maitake mushrooms against metastases.

PDD2MOM1 profile image
PDD2MOM1 in reply tohurricaneheather

I am very reluctantly beginning ibrance next week, because my CA 27.29 marker is above 9000. If it's not too personal, may I ask how long you stayed on ibrance? I also do holistic treatments (diet, supplements, mistletoe). My plan is to stay on ibrance the shortest time possible until my CA 27.29 number comes down.

hurricaneheather profile image
hurricaneheather in reply toPDD2MOM1

i had a similar mindset to stop Ibrance, asap. i have chosen to remain on it. the onc is ok with me stopping Ibrance. however, after speaking with a new DO, metabolic nutritionist & research, he has suggested to remain on it, for now.

terrylou profile image
terrylou

I am there right now. Trying to weigh the risks and benefits of adding Ibrance. $$$ Is a major factor.

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