Can anyone share their experience with Fulvestrant and Ibrance?

[Gypsypublisher]

Hi everyone. I’m new! ... i was told yesterday that my MBC has advanced to spine. Good news... yep (haha) is that the localized cancer has stablized... but a new growth in lymphnodes .... no progression. My question is has anyone had the cocktail of Fulvestrant and Ibrance? I started with Anastrozole to Exemestane. In two years... thanks for any feed back.

[Hidden]

Hi Gypsypublisher,

Welcome to the community although, as we always say, sorry you need to be here!

And, gosh, I'm also sorry for your news, but pleased to report that I've been on that treatment for more than two years and love it! Very easy (except for the "ouch" from the injections, but that's a small price to pay..) and so really my only issues has been the fatigue.

I hope that the treatment does good things for you for a very long time...

One other thing I want to mention is, is it possible that you'd be considered "oligometastatic" (sp?) ? If you want to learn more about this, enter that word (ideally spelled correctly! ) into the search bar. In a nutshell, it's a quasi-metastatic status, e.g. for people who have just a few mets with a slow-growing cancer. It's possibly a bit controversial in the medical community, but some docs treat patients in this status for a "cure" so, e.g. they might fully radiate that new tumor vs. "only" treat the system.

I'm not explaining this well (not enough coffee yet), but if you think this might describe you, it might behoove you to find a doc who agrees and treats accordingly...

Best wishes for success on this treatment and, again, welcome...

Lynn

[Gypsypublisher in reply to Hidden]

Thank you so much Lynn. I’m trying to read as many positive stories as I can. So really appreciate your response. I haven’t heard of the other treatment. Will look into it. I’ve been working with a doctor to create a healthier way of being and it started with my diet. Happy to say greens and veggies is truly the way to go!!! I’m forever optimistic because why not...right! I’ve got cancer. It is, but I’m learning to live with it and enjoy everyday. So again thank you!!!

[Hidden in reply to Gypsypublisher]

Hi Gypsypublisher -

I couldn't agree more re: being optimistic and I like the way you phrase it, i.e. "why not?".

I'll acknowledge that many suffer from depression, anxiety, etc., and so can't exercise the "choice" to be happy and optimistic, but for some of us it's either innate or a conscious decision that, with possibly a few simple supporting actions, can make a world of difference. As I often note, I've been happier since my diagnosis than at virtually any other time of my life. I wish the same for you (and for everyone (heart)).

Lynn

[Gypsypublisher in reply to Hidden]

Exactly LynnFish! People are perplexed by this, but it’s true!

[Phillipians4and6]

Hi, I’m in that combo now. December will make a year!!! I have very few side effects. In the beginning I had headaches and blurry vision. Drink lots of water.

[Gypsypublisher in reply to Phillipians4and6]

Thank you Phillipians4and6! I think the one thing that is consistent is to drink lots of water... and i do love water. So, I’ll keep it up. This makes the change easier.... have a beautiful day.

[mariootsi]

I've been on this combo for 2 years. Fatigue is my main side effect. This combo has proven very effective and there is flexibility in dosing and schedule depending on you bloodwork .

[Gypsypublisher]

Thank you Mariootsi!!! I appreciate your reply. I’m forever hopeful...

[winterbliss]

I was on that combination for 4 years until the cancer broke through the treatment. I was tired a lot and had diarrhea. Other side effects were hair thinning ( I didn't have shave my legs!), and a dry vagina. I am now on capecitabine. My hair has grown back and not so dry down there.

I am now in my 6th year with Mets to my bones. I wish you well with the treatment.

[Gypsypublisher in reply to winterbliss]

Thank you winterbliss. I also wish you the best too. Have a beautiful day.

[Andibo in reply to winterbliss]

I love hearing 6 years with bone mets and doing well! You are my hero and I wish you continued success. I am just coming up on a year with Ibrance and Fulvestrant. It's so nice to connect with people in the same boat. If you try to find info online, it can sometimes be very negative. My doc says that bone mets is a whole other category when it comes to MBC (in terms of success, life expectancy, etc.) I have no organ involvement so I hope to hold this crap off for as long as possible. Positive attitude is a huge part of it. My sense of humor got me through the breast cancer years ago and it is holding steady now. Only way I know how to go through life! Trying to teach my daughters that its not about getting knocked down. Your true strength comes from getting back up and kicking some butt! I am new to this site and am so happy to meet all of you. Prayers to every one of you fellow warriors.

[caw517]

I have been on Ibrance and Fulvestrant for just over a year. Prior to that I was on Ibrance and Exemestane for 3 years til it stopped working then Ibrance and Letrozole which only worked for 3 months. While on Ibrance and fulvestrant, I have seen the best overalll response. Just last month I had my best PET scan in 4 years. Yes it still shows the cancer in various bones- spine, pelvis , sternum and in my nodes, but overall I have finally not had any new progression and have seen some diminishing of these areas. My counts are low on Ibrance and the fatigue is rough for about 10 days, but this is working so I forge on. The only issue with the fulvestrant is the injections themselves and aching in my butt for 2-3 days. But overall-- not bad-- and I am getting good results. Good luck to you!! Stay strong !!

[Gypsypublisher in reply to caw517]

Thanks caw517. That sounds like my experience e 100%. I hope you are staying uplifted. Everyday I’m grateful for another day.

[Gypsypublisher]

Thank you so much. I’m so glad I’ve asked the question. Your situation sounds a lot like mine.. and i was really worried about the shot... i don’t like needles. And, the fact that’s its been working is even more comforting. I start the process next week, with the pharmaceutical visit for information, labs, etc.... so just the beginning. I wish you the best!

[Andibo]

I'm so sorry. We discovered by MBC after a compression of the spine. I had spine fusion in 2019. I take Ibrance and Fulvestrant and it seems to be holding back progression of my disease quite well so far. Worst side effect for me is hair thinning. I feel pretty good. Initially I had nausea but once I got used to the medication, I seem to be tolerating it really well.