A newly approved med!: I probably will... - SHARE Metastatic ...

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A newly approved med!

24 Replies

I probably will not be a candidate because of blood clotting issues, but it seems a hopeful one and I hope and pray it continues to be successful for those that will get this!

fda.gov/news-events/press-a...

24 Replies
Francesca10 profile image
Francesca10

Thanks for posting this. Will discuss with my onc💕

in reply toFrancesca10

You're welcome Francesca Please post what your onc thinks about it.

MacroMom profile image
MacroMom

I have the mutation this is designed for and have been waiting for it to be approved. I’ll be getting a second opinion Tuesday at Dana Farber in Boston and will share what I can learn about it!

in reply toMacroMom

Thanks MacroMom! It received accelerated approval, so it seems a successful med. Yes, please let us know what you'll learn Tuesday. Fingers crossed!!

Mimigram profile image
Mimigram in reply toMacroMom

Thank you please keep us posted.

kduck profile image
kduck

I read this article, it's wonderful that the fda has approved another drug for mbc! So is this new drug, a chemo pill or Endocrine treatment?

in reply tokduck

I thought I read it's a chemo pill. I agree. I'm so happy to see treatment options🙏

kduck profile image
kduck in reply to

Thank you!

Mimigram profile image
Mimigram

Thank you. I sent the article to my ONC just to bring it to her attention. The side effects seem concerning.

Mimi

in reply toMimigram

Yes, I saw that too Mimi but

The way I understand how listing of side effects work is that during the phases of the trial anyone on that trial who develops just about anything, (headache, runny nose, minor or major, etc) they list as a possible side effect. Cover their bases I guess. But I'm sure some of these look pretty debilitating.

RLN-overcomer profile image
RLN-overcomer in reply toMimigram

I am also concerned about the side effects, but it is still an option for the sister/warriors who may want to use it, or try it. I do pray there will be a treatment with less debilitating side effects, and I do thank God for the medications that are being provided yearly, monthly, and weekly., and the research to direct specific treatments for specific breast cancers. Amen XoXoXoXo P.s. On this Memorial Day weekend I celebrate, and pray for the families who lost loved ones because their loved ones served in the military.Amen

in reply toRLN-overcomer

Amen! Respect to all those who served.

Mimigram profile image
Mimigram in reply toRLN-overcomer

Amen 🙏

mariootsi profile image
mariootsi

Thank you for the info. How do we get tested for Pik3?

in reply tomariootsi

Mariootsi, I think it's through a bloodtest. They need the tumor's DNA, which is in the blood.

mariootsi profile image
mariootsi in reply to

Oh. Thank you.

in reply tomariootsi

You're welcome!

Francesca10 profile image
Francesca10 in reply tomariootsi

Hi

From what I read about this it has to be from biopsy or tumor fluid. I haven’t been biopsied with mbc- it is based on the first breast cancer I had in 2009. That scares me- I have bone Mets and any biopsy would have to be under anesthesia to go into bones. Then I read all the side effects; while I am glad this is another option I am also very leary of it. Just me.

in reply toFrancesca10

Hi Francesca, I read that a liquid biopsy is the oncology term for a blood test, but how it works for bone mets I don't know. The side effects listed are definitely scary. We have tough choices to make, don't we?

Francesca10 profile image
Francesca10 in reply to

Definitely sigh💕

in reply toFrancesca10

❤️

Some scary side effects 😞

in reply to

Yes! :(

MacroMom profile image
MacroMom

Regarding getting tested for PIK3 mutation, they used tissue preserved from the breast tumor biopsy they did when I was first diagnosed. My hospital was doing a study and I guess they keep biopsy tissue because it was done months later. The oncologist I just saw at Dana Farber didn’t recommend Alpelisib as the next best choice for me after Ibrance, even with the mutation. Her concerns were the side effects, that it is so newly approved, that it might not be easily available yet and that the dosing won’t have the flexibility of older, proven drugs. She did say it’s a good start and may be useful down the line.

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