Where to...

[333Stevens]

I have been off treatment for 6 weeks from hormonal treatment and 5 weeks off chemo as my last treatment did not work and bone mets progressed along with a small mass appearing under my sternum - Kisqali and Faslodex. I see my onc this week to find out what next line of treatment I am up for. Any one ER+ run out of hormonal treatment options? What came next?

A trial will probably be next stop - if you have been on a trial how rigid are they as I don't want to stop taking things like supplements that have been keeping me healthy?

Hoping for a positive way forward.

[klhowe]

I went from Ibrance to Piqray (I had the PIK3-CA mutation). I am now on Xeloda which is an oral Chemo that is not used with an AI. My Oncologist hopes the Xeloda clears the liver tumors, then in 6 months he plans to put me on Tamoxifen.

I have bone and liver mets, but it is the liver he is concerned about.

[Wintervt in reply to klhowe]

How are you tolerating Xeloda?

[klhowe in reply to Wintervt]

I feel great. Piqray was so harsh that the 3000mg dose of Xeloda is nothing. I take an Immodium daily to prevent diarrhea.

I just finished my first 14 days. I won't have a scan for another 4 weeks. So, I hope Xeloda does it's job.

Your trial seems to be going well. Have you had a scan yet?

[Wintervt in reply to klhowe]

So glad you are feeling well, I’ve heard good things about Xeloda.

I had scans last week, my bone mets are stable and suspicious liver lesions are smaller.

[333Stevens in reply to klhowe]

Thanks - I have already had 18 months on xeloda so I did well on it - good luck. I am thinking the Piqray might be my next port of call..... funny how different oncs do things in different order.

[Wintervt]

Hello,

I am ER positive and currently participating in a clinical a trial. There are some supplements I still take and only two that I can’t. Thankfully, my body is responding to the meds, my tumor markers have halved, my bone mets are stable and the suspicious lesions on my liver are smaller..

[333Stevens in reply to Wintervt]

Fantastic, I am so pleased for you. Do you mind me asking what drug is used in the trial you are on?

[Wintervt in reply to 333Stevens]

The drug is LY3484356

Here is the trial: clinicaltrials.gov/ct2/show...

[333Stevens in reply to Wintervt]

Thank you so much for the details of the trial.... please keep posting how you get on and thanks for sharing.

[Wintervt in reply to 333Stevens]

Will do! There are two other phase 3 trials that are similar to mine and quite promising, EMERALD and ELAINE. I was not eligible for them due to the fact I was not post menopausal. Wishing you all the best with your next treatment!

[Hidden]

I have been on Abraxane (Chemo) since May and see my oncologist tomorrow for m bone scan report. He said that my only options are different chemo drugs as there are numerous ones that can be used. I live in Canada and Covid has stopped most trials 😞. We also don’t seem to have access to some of the drugs others mention on here.

[333Stevens]

Praying that your scans give you some positive news.

[Beryl71]

Hope all goes well.x

[ChrisVict]

I am on my first semi chemo Affinitor And exastamane has anyone had a good run with this My onc said Xeloda would be

Next no clinical trials at the moment but diffentalky keeping my ears open

[Selmac in reply to ChrisVict]

Hi, I was on Afinitor and Aromasin for 2 and 1/2 years. It was easy treatment for me,

[ChrisVict in reply to Selmac]

That is fantastic news andIt gives me hope had you been on hormone treatment before it? I sped through that in 15mos 2 different hormone drugs and riding a lot in this Mtor inhibitor.

[Selmac in reply to ChrisVict]

I was first put on Ibrance and Faslodex. After 6 months I had progression and Oncologist did a gene study and said I needed to be on Afinitor and Aromasin. I have had progression and tried verzenio. I got very sick immediately and had hives and scabs over my body. We assume i am allergic. I'm running out of options. Right now I've been put on Xeloda.

[333Stevens in reply to Selmac]

Thanks for the feedback that is so good to hear.

[Buffwright in reply to ChrisVict]

I just finished 6 months, following 3.5 years on Ibrance and Letrozole. I know some people do very well on Afinitor. It didn’t do anything for my cancer and caused issues in one of my lungs. On the good side, my thinned hair got fuller! I’m moving on to Piqray and Fulvestrant

[PJBinMI]

Are you still on a bone drug like Xgeva or Zometa? Those are usually given to those of us who have bone mets. I'm a very long timer (over 16 1/2 years with bone mets) and have learned alot about mbc in those years. When I was first diagnosed, women who did well on several (3 or 4) hormonal treatments for E+ mbc, getting some time with each med before it finally failed, would often take a low dose Estrogen for several weeks to kinda "reset" the receptivity of the cancer cells and then take the first hormonal treatment they'd been on again to see if that would work. When I asked the bc specialist onc that I saw for a second opinion about a year ago about that, he said that they don't do that anymore because the estrogen can have "alot of side effects." I didn't push him for more info and now I wish I had. Xeloda or one of the Taxanes (Taxol, Abraxane, Taxotare (sp?)) are often the first real chemotherapy for those of us with E + mbc. Side effects are very very individual but alot of us find them very manageable. One thing I recommend to everybody here is to see a bc specialist onc, meaning an onc who sees only bc patients! The best places to go for that are the "Comprehensive Cancer Centers". Most of those, maybe all, are affiliated with medical schools, and their oncs both see patients and do research and tend to be the oncologists who give presentations at major bc conferences. There is a list of the CCCs on the home page of this group, on the right side of my screen right now, under "Topics" and then "useful resources." If you are in the US, those are really the best places to go for second opinions or even on going treatment if you live close enough. Those oncs will know about trials, too! I've not done any trials myself, but one of my friends was. A phase 3 trial should be much "safer" than a phase I or 2 trial. If you have not had the extensive genetic testing that's available now, that would be something to consider and ask your onc about. Also, if your onc is not a bc specialist, they will probably support you seeing a bc specialist at a CCC for a second opinion. Find out where the nearest CCC is and mention it at your next appt.

[333Stevens]

Thanks so much for sharing your experience. Yes Im still on xgeva. I also agree about choosing a onc who is a breast cancer specialist - I made the move 2 years ago because the onc I was seeing just was not on the ball because it was not his speciality. I'm off to see the onc today to find out what is next - I am feeling quite anxious but know deep down it is just another step in this journey.

[333Stevens]

Update - have been put on Afinitor and Exastamane - have been warned about the mouth ulcers but onc has suggested dexamethasone diluted in 40ml of water and swished around my mouth 4 times a day is a good way to prevent.

I need another blood transfusion first but ready to give the new regime a good go. Thanks to everyone for your support.

[Arisgram in reply to 333Stevens]

It was suggested to me to put the tablet in an empty gel cap. Then, swallow the gel cap in a spoonful of yogurt. I only had one ulcer. Good luck!

[333Stevens in reply to Arisgram]

Thanks so much will give it a try!