New to Ibrance and Fulvestrant

[jstickrod]

Hi all! I am new here to the site. I was diagnosed Aug. 31 with Stage 4 MBC. I had Stage 1 Breast Cancer 3 years ago which was treated as a lumpectomy and radiation, no chemo. I am still in shock how this could happen, but I am trying my hardest to research and stay positive. I was on Letrozole for approximately 1 year, but kept getting recurrent UTI's. So my oncologist switched me to Tamoxifen for the past 2 years. Now I have started on Ibrance and Fulvestrant. He does not want to put me on Letrozole and run the risk of UTI infections again. I'm hearing such success stories with Ibrance and Letrozole. Can anyone share success stories with me that is on Ibrance and Fulvestrant. Just looking for some hope......

[bankusboysmom]

Good Morning jstickrod....this is my first time to reply (I've only just discovered this site). I, too, am on Ibrance and Fulvestrant. I was first diagnosed, Stage I, in 2005 and spent 5 years on Tamoxifen (hated it) and then 3 years on Letrozole (hated it even more!). In December, 2013, I was diagnosed Stage 4 with mets to the bone. I was switched to Aromasin and stayed on that for about 1 year. I was not happy with my oncologist or the system she was in and decided now was the time to find a new doc. My current oncogolist put me on Ibrance as soon as it became available, March 2015, and added monthly Fulvestrant injections. I have done really well with both. Fatigue is the only side effect, but it is manageable. My latest scan, spring 2017, showed no evidence of active disease in my bones and my tumor marker continues to go down. All things considered, I'm really happy with this combination and hope to stay on it as long as possible. Oh, one other side effect, I've gone from thin straight hair to "chemo curls". All those curls sure makes my mornings easier and has taught me to just "let go" and do the best I can each day. There is hope! When I was first diagnosed with mets it was devastating. But after 3 1/2 years of doing well I'm beginning to think this can be a "chronic" thing. Ibrance was such a game changer and there are more things in research and coming down the pike. Hope this helps.

[jstickrod in reply to bankusboysmom]

Wow! So happy to hear you are doing so good on this combination of drugs! It definitely helps my spirits and hope that there is a ray of light! I'm hearing such good things about Ibrance, and I am praying that the drug works in my body. Thank you for your support, and I wish continued health for you!

[Gypsypublisher in reply to bankusboysmom]

Thank you... i will be going on this combo after finding a spot on my spine. Thankfully the tumor and lymphnodes in the breast are somewhat stablized, but it was hard to hear about the spine..... this post helps me stay positive, so thank you for sharing!

[lweaver]

I have a friend who took fasilodex with Ibrance and is doing well. Maybe I can get her to join this forum.

[Epinto in reply to lweaver]

I am also on Ibrance and faslodex. Would like to hear from others on how they r doing.

[jstickrod in reply to Epinto]

I have only been on these drugs for 11 days. I am surprised I really don't have any side effects yet! My oncologist says it will take a couple months for the drugs to take full effect in your body. My only side effect would be fatigue. I really need to hear success stories of women who have been on these drugs for a long time. It is good for the soul and spirit to cling onto hope. How long have you been on Ibrance and Faslodex, Epinto?

[Epinto in reply to jstickrod]

Hi. Have been on this regimen for more than one year. Grateful!

[Newtkim1 in reply to Epinto]

I am on Faslodex and Ibrance. I just finished my second month. No real side effects yet. My latest blood work showed my tumor markers were down a bit. I try to eat a very clean diet, with lots of fresh green veggies and fruits. I exercise and get as much rest as I can. I go in for CT scans in the next few weeks to see how things are going. Trying to stay positive...hoping it all helps!

[Jersey-girl]

Hi, not sure I can really help as not heard of the other two drugs ibrance and faslodex but have been on letrozole for three months and as yet no adverse side effects . However it doesn't seem to be working as my ca 125 has risen massively, so due to see consultant next week and maybe change to tamoxifen- wishing you all the best and keep your chin up 😊

[Andibo]

I was intitally diagnosed with Stage 3 BC in 2012. Did nasty chemo for 3 rounds (can't remember the name but we called it Red Death!), then 12 weeks of Taxol. THen surgery for bilateral mastectomy and then reconstruction. Did Tamoxifen for 5 years and hated it. Remission until October of 2019, I had a spinal compression from cancer in the spine. Also had it in the hip and shoulder. I started with Xeloda and it did not work. Fractured my hip in January of 2020. Had partial hip replacement and got a really good biopsy from hip that allowed us to discover my tumor was estrogen loving. Started Ibrance and Fulvestrant with Xgevia shot every 3 months in February 2020. Scans have been stable and CA25-29 is down to hovering around 35 from 500. Blood work all looks great. Only side effects are fatigue, which sucks but I just do things in bits and pieces and hair thinning. Otherwise, I have tolerated it really well. My Oncologist is very happy with the results. Hope this helps...best of luck to you

[ScoutnFlower]

It’s 12/29/2021. Hi All I’ve been on Ibrance and Fulvestrant (faslodex) now for two years and I get fatigue but I thought it was from my retail job and sometimes I’m a little bit moody but the cancer has not returned. I had a mastectomy in 2007 with reconstruction took tamoxifen for 5 years, Then 2017 cancer came back like 5mm In my mastectomy breast who knows could’ve been in the skin, then I refused chemo because I was unemployed and had to pay rent and look for a job, and the cancer came back in 2019! Had Lumpectomy and I said I would do chemo but my oncologist at UCI put me on fulvestrant and Ibrance. It is now 2022 in a couple days …originally thought maybe I’d be on this combo for a couple years but now I am coming to the realization that this is a maintenance drug and will do for a long time. I used to go to the main hospital cancer center but it was kind of crowded and I was uncomfortable so I looked around for other places and found out that UC Irvine has a location nearby me in Newport Beach California. The staff and nurses are amazing there they know my name I don’t even know their names but I am realizing I need to make friends because I’m gonna see everyone there once a month …I’ve been going there for one year. Good luck to everybody stay on the medication and if you’re uncomfortable talk to your doctor I was on a competitor to Ibrance it made me very sick 😳diarrhea so I switched to Ibrance no problems now 😎Three weeks on one week off and sometimes two weeks on one week off. Have a great day everybody 🥰happy soon new year 2022 may we all have good health …big hug to everybody. Christine