First Time Post

[Caab]

Hello Friends, Although I have been reading posts on this site for a while, this is my first time posting. Finally got the courage!

I was initially treated for breast cancer in both breasts and lymph nodes 18 years ago. (Estrogen/Progestrogen +) Surgery, radiation and chemo. I almost died twice and suffered greatly with pain and sickness. I was also left with permanent damage to my brain, nervous system and other physical conditions. I vowed that I would never do this again.

Fast forward to 2 years ago when I was diagnosed with MBC to my bones. After some education and support from family and friends, I agreed to treatment. I was treated originally with Ibrance and Anastrozole. (sp?) Having a very bad reaction to A., I was taken off of it. I continued with Ibrance only and actually went into remission for several months. Eventually, I became too ilI to continue and was taken off for a "rest" for 6 weeks. A PET scan showed mets in my liver after my "rest". My Oncologist then treated MBC with Fasolex injections only, with plans to introduce an adjunct therapy after assessing my tolerance to the Fasolex. My Doc, at this point, felt that I was extremely sensitive to treatments. I had virtually no side effects from Fasolex. I was convinced that this meant it was not working! (smile) In fact, my blood tests showed that my numbers went down to 39. (Normal range is 0-38) What??!!! I am going to have a PET scan in August and my Onc wants to keep me on Fasolex only.

I have been celebrating by swimming in my daughter's salt water pool every other day for hours at a time, walking several miles a day...cooking dinner for friends, laughing , dancing all around the house, ...I never thought this possible. My gratitude is immense and I sit in wonder.

I am also seeing a Liver Surgeon in the next few weeks. There are very different opinions regarding the long term benefit of the surgery. I have read medical journals that support doing so, citing impressive statistics regarding long term survivability vs survivability w/o surgery. Does anyone have any thoughts or information regarding surgical benefits?

Thank you so much for those who have taken the time to read this. Please let my story be of some inspiration to keep trying, trying, trying. I wish for you all, Hope , Love and Peace. Carel

[SeattleMom]

Hello, Carel!

I just finished reading your post and was so inspired by your enthusiasm and zest for life. The nice thing about Faslodex is that it's just a couple of shots once a month! I hope it lasts for a long, long time for you!! God bless you!

Linda

[Caab in reply to SeattleMom]

Thank you Linda. So far, so good with Faslodex alone. Love and Peace, Carel

[Hazelgreen]

Hi Carel, I have had liver lesions of 3 cm or less since 2021. A biopsy confirmed that these lesions are the same hormonal breast cancer as my many other lesions. Since my bloodwork indicates that my liver continues to function well, I have not had surgery.

My understanding is that the liver is a large organ which can tolerate lesions. I wonder whether surgery might do more harm than good. It is a lot to go through...

[Caab in reply to Hazelgreen]

Yes, My Onc feels that it is too much right now. He says that it is a very difficult surgery to recover from. I only want to have as much info as I can in case I have to make that decision...ever. Peace

[PJBinMI]

I don't have any experience with liver mets so I can only suggest that your liver function test is important. Ask the liver surgeon about how that factors into decision making. If you decide to have surgery, push hard to have minimally invasive surgery!!! That will be easier to heal from. I had to have part of my small intestine removed last fall due to a blockage (worst cancer related thing so far for me)and it was done by a surgeon whose specialty is minimally invasive procedures. Caab, I'm a long timer with MBC, 19 + years, and I got over 9 years from Faslodex alone, along with Xgeva for the bone mets. I've gone to alot of MBC and BC conferences, and met more than a few women who've gotten more time from Faslodex than from an initial AI. It's wonderful, and very hopeful that you feel so well! That is often an indicator of cancer stability! The best things you can do for yourself are learning all you can about the type of MBC you have, advocat strongly for yourself, and enjoy the things you've always enjoyed! I've done quite alot of traveling since my diagnosis. Took an Alaska cruise, one of the best trips ever! Cruises are good as we always have a bed available for naps, and there is usually a doctor as part of the cruise staff. Being on Glacier Bay was an incredible experience--no signs of humanity except the ship we were on. The engines were turned down low so very quiet. I hope you have many years left to enjoy!

[Caab in reply to PJBinMI]

Thanks for your reply, PJB. I am a little confused. Were you on Faslodex alone ? And if so, for how long ? Although I am not traveling far just yet, I did play basketball yesterday, swam in a salt water pool, came home right tired! Maybe that's how it is for athletes ! smile.......

[love2golfwell]

Dear Carol, thank you for sharing your story. I am so happy the Faslodex is working for you and that you have been able to enjoy your life again. I hope your scan will yield great results and that you will be able to successfully stay on this medication. Sending you hugs and prayers.

[Caab in reply to love2golfwell]

Thank you! Are you golfing? I truly hope you are. Peace, Carel

[love2golfwell in reply to Caab]

You are welcome! Yes, I have been golfing pretty much every day unless it rains. I feel like it is like therapy for me, both physically and emotionally. The golf course is definitely my happy place, 4 hours to focus on challenging myself to play well, socialize with fun ladies or couples (when I play golf with my husband), enjoy the awesome wildlife , get some sunshine and exercise. Hope you are doing well with your treatment. Sending prayers and hugs.

[mariootsi]

Very inspiring story. You are very strong. I'm on Faslodex and Ibrance. Faslodex has been very tolerable for me too. I wish you continued success with it. Sending hugs and love. Keep posting.

[Caab in reply to mariootsi]

Love and Peace for you!

[NPmary]

So happy for your news. 🙂

[Caab in reply to NPmary]

Thank you. It is so important for us to take the good times and embrace them.