MBC Journey so far

[Matthew2004]

I was diagnosed with Primary and MBC the same time in 2017 they started me on Letrozole which worked well for about 3 years since then tried a number if other hormonal therapies that did not work for long or not at all (Ibrance and Everolimous) they have now decided to move me onto Chemo Xeloda, had some terrible side effects (vascular spasms) so not sure whats next will be sending me for some heart tests then deciding what next Taxol seems likely! Good luck everyone with their journeys whoever is doing well please enjoy it because when things are not going well its not a nice feeling!

[Iwasborntodothis]

I had Taxol chemo for a year and wrote detailed posts about the experience. It worked very well for that year - please read my posts!

[Kerryd22]

I had Abraxane infusions for six months. I didn’t have any problems aside from the hair loss. Taxane based IV therapy isn’t as bad as people fear or that’s what I feel from limited experience. My next drug will be chemotherapy but not a taxane so I’m assuming it will be xeloda. I’m a little nervous at the prospect but I don’t have to start worrying about it yet because the doctor is waiting on another scan to be sure that I have progression. I’m actually contemplating asking if I can go to a taxane instead of one of the newfangled drugs that people do report horrible side effects of. 

Hopefully you’re pleasantly surprised about Taxol!

[bikebabe]

I’m sorry that you’ve not yet had success in finding an effective alternative. I hope there are some more effective newer drugs for you soon.

[Lavern2]

Hello I have been on Letrozole since June 2022. And I was given Zometa. Then radiation therapy which has left me like a drained slow moving duck Lol. Had my first mammogram since sugery. Everything look good have scar tissue that's uncomfortable but I'm told it will get better. I also have Lympphedma in my right arm because plastic surgeon didn't put drains in after surgery. Have to wear a compression sleeve and glove to keep swelling down. But with all that I have gone through and knowing that there are people in worse shape than me. I just thank God for life and being able to move in slow motion. We have to keep an positive mind and keep on going. I am adding you to my prayer list for comfort and strength. You keep the faith in God and Trust his will. Just know someone in East Texas is praying for you.

[Mumberly]

I don’t have a similar experience to share, or advice on the new medications they’re recommending, but I wanted to let you know that I’m thinking of you and hope you find the perfect combination that brings you continued hope and improved well-being.

[mariootsi]

Hopefully your next treatment will be successful.

[macspow]

Hi Matthew2004. I was on Ibrance and Fulvestrant for 6 mos. before it stopped working. I just started Taxol infusions - 3ks on, 1 wk off, and I am on my first wk off week. I'm sorry I can't add more becuase I'll need a couple more treatments before a scan to measure things.

I will be looking at Iwasborntodothis' posts on Taxol as, like you if you go in this direction, I'm new to the treatment.

All the best to you, Jim

[fancydog]

Matthew2004. My story is different but I wanted to share, although I only got in 7 treatments on Taxol before having a bad reaction and had to stop it. Scans showed it had cut my tumor load in half which was an exceptional response!

[Hidden]

My mom was on Imbrance for 3.5 yrs and it stopped working. She tried Kisqali and fulversarant which didn't slow her cancer down. She delveloped acites when the ibrance stopped working. It has really taken a toll on her. Weak in the legs, tired, no appetite etc. She just had her 3rd iv chemo ot taxol. She has some mild side effects, sore mouth, delayed itching. Each good day we have we are so thankful. My mom is 78 and this MBC is wearing on her and it's heartbreaking.

Wish you all the best.

[TammyCross]

I am a little confused by your story. You were on only one aromatase inhibitor (AI) or hormonal therapy. The other two you were on are "targeted therapies." The AI's basically starve the cancer. The targeted try to go right after the cancer cells by different mechanisms.

What is puzzling is that you didn't go on another hormonal therapy, either another AI (anastrozole or exemestane) or a SERD (fulvestrant). Usually Ibrance is given with fulvestrant. If that doesn't work, usually a different targeted therapy is tried, like Verzenio. I wonder if you have a type of mbc that is dictating this different course. Are you ER+ HER2-, the most popular variety of mbc?