Is any one on an immunotherapy trial - SHARE Metastatic ...

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Is any one on an immunotherapy trial

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16 Replies

clinical trials

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library2019
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Malibu5 profile image
Malibu5

Yes, I started a trial with immunotherapy January 2020. It is along with herceptin & perjeta every 3 weeks. (First 6 months also was on taxol). The immunotherapy was approved for triple negative so they are trying to see if it helps with er-/pr- and her2+. It’s a two year trial. Let me know if you have any questions. Happy to answer them!

Pbsoup profile image
Pbsoup in reply toMalibu5

Thank you for doing this! I hope it is successful for you—and subsequently for all of us. ❤️

love2golfwell profile image
love2golfwell in reply toMalibu5

Yes thank you for participating in this clinical trial. Wishing you much success.

bubblystream profile image
bubblystream

I just did it for two 9 week cycles.It did not work for me. I have normal breast cancer hers 2 neg. its not yet approved for the garden variety breast cancer. They are hoping it can be approved. I had it with faslodex shots. One liver tumor kept growing so they took me off. Tomorrow i will start on Piqray.

in reply tobubblystream

Hi bubblystream -

Thanks for sharing the info, I just want to confirm: You have ER+ BC and were in a trial for immunotherapy? Would you mind sharing the name of the med, the trial, and/or where you get treatment? I'm ER+ and would *love* to try immunotherapy when I need to make a change...

Thanks!

Lynn

bubblystream profile image
bubblystream in reply to

I am Estrogen positive Her2 negative. Also progestrone negative. it is a slower variety.

I was in a study for immunotherapy of pembro also with faslodex shots. It works for other cancers and they want to approve it for my kind of breast cancer. Ibrance quit working after 5 years this past spring. During the 5 years i only bone mets. Did a scan last March 2021 and now I have a few spots on my liver now. So they put me in that study. The cycle is 9 weeks long with immunotherapy every 3 weeks. Then scans. After 2 cycles one liver spot grew .9cm by 1.5cm in 4 weeks. So they took me off. Today I am starts Piqray. Lord willing it will work. I did not have any side affects from the immunotherpy.

I hope this helps. If you have any other questions let me know. :-)

bubblystream profile image
bubblystream in reply tobubblystream

Also, I got the treatment at Nebraska Medical Center in Omaha.

in reply tobubblystream

Very interesting, thank you so much for your response!

Can I confirm that you're saying that ER+/PR-/HER- is a particularly slow-growing subtype? That is what I have...

bubblystream profile image
bubblystream in reply to

Yes that is what I have. Oncologist says its garden variety. I am 67 with no other medical conditions. This pembro had worked for less than 50% of his patients. The case manager for that study did not tell me what percent of people do have success. She said it was less than 50%.

in reply tobubblystream

Interesting!! I've chosen to read stats re: success in the following way: Even if it's less than 20% or 10%, all that means is that 80 or 90% of people won't benefit...but for those who do, it might be life changing, you don't know until you try! I hope that is the case for this immunotherapy and other treatments! Thank you for your insights...Lynn

Malibu5 profile image
Malibu5

My liver meta are gone. All other tumors (breast & lung) have shrunk 70%. It’s been stable for a few months. I go in September for another CT scan. It is a blind trial so they won’t tell me if I am receiving the immunotherapy. Praying for all of us 🙏🏻

bubblystream profile image
bubblystream in reply toMalibu5

Was your immunotherapy medicine with Pembro? If not what is it? you are having great results. :-)

Malibu5 profile image
Malibu5 in reply tobubblystream

Tecentriq is the name.

Adele_Julia profile image
Adele_Julia

I'd be curious to know what clinical trials ladies are on. I'm ER/PR positive, Her2 negative. I have looked for some but I guess I'm not qualified. Diagnosed MBC in Nov 2020. On iBrance and Faslodex.

love2golfwell profile image
love2golfwell

I was offered one when I first met with my oncologist here in Florida which was also this past November. It was for a clinical trial for an aromatase inhibitor instead of Letrozole that they said would cause less side effects. They did not tell me the name of the new medication. I would have had to go for scans again right away and then every 2 months but would not know if I was on the Femara or the new medication. I was so new to this diagnosis and had just been through several scans and was just not ready to go for more so soon or have them so often and perhaps still be put on the medication they were going to prescribe anyway. I felt a bit selfish saying no, but I was not in a good place emotionally. I think now that I am further along with treatment, I would be interested in trying a clinical trial if my current treatment stopped working.

Malibu5 profile image
Malibu5

It’s a big decision to make in the beginning. I also went for scans every 8 weeks the first year, now every 12 weeks. There is a lot of information you have to be willing to share. There are many requirements. I , overall, have felt very happy I was able to join a trial. I think we all try to make the best choices at the time we have to.

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