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Snallygaster profile image
10 Replies

Thanks everyone for helping me put the liver mets into perspective.

My Oncologist said it was a change in treatment and I did well on Ibrance for 22 months and should do well on my new treatment.

So now I am to take Fulvestrant and Alpelisib( as the genetic testing I had done in December showed I have the PI3K mutation.

This is The Snallygaster. He has limited sight in his "good" eye and has the soul of an old wise one.

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Snallygaster profile image
Snallygaster
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10 Replies
MacroMom profile image
MacroMom

So nice to see Snallygaster! His wise old soul comes through.

I also have the mutation that Alpelisib is designed to work with and it would be so helpful if you can share your experiences and expand our bank of experience around it.

Thank you!

Patty

Barbteeth profile image
Barbteeth

Oh he’s a sweetie!!

I love cats and have two...Twinkle and Marmaduke...and a bunny called Honeybun!

Pleased you’re feeling confident..I’m having the genetic testing done soon and hope it gives some clues to what will work for me as well

All the best and a kiss for Snallygaster 🐈

Barb xx

Hi,

I'm glad you are feeling good about your treatment. I also have the PIK3CA mutation, which piqray (alpelisib) targets. My oncologist said that it would be used as a second line treatment, along with faslodex, when my current treatment fails.

Snallygaster is gorgeous! I love cats and would have my own cat sanctuary if I had the land.

Sophie

Betbop profile image
Betbop

Thanks for sharing the picture of Snalygaster he's quite handsome.

mariootsi profile image
mariootsi

Good to hear your news. I wish you well with your new treatment!

Loulie profile image
Loulie

I’ve had several changes also with liver mets. I tried to see the posts that helped you with your perspective but can’t seem to find them. When I search Snallygaster I only get this comment.

hdhonda profile image
hdhonda

That treatment should be good for you since it is specific to your genes. Let us know how it goes and how you feel on it. It looks like Snallygaster rules the roost. I am pulling for great results on your new treatment. Blessings Hannah

SoCalLady profile image
SoCalLady

Warning! I am on Piqray (alpelisib). Please, please make sure your onc puts you on an allergy pill(s) a week before taking this medicine because the number 1 side effect is hives. I got severe hives twice in the beginning because my onc didn't know to put me on an allergy pill (and I don't have allergies). In clinical trials, they used an allergy pill to prevent hives although they don't seem to advertise that fact. I now take an allergy "cocktail" every day with the Piqray. Also, Piqray is famous for raising your blood sugar in 60% of its patients. Nice name they call it is Hyperglycemia (real name is diabetes). Yes, I got that too, and now have to take diabetes medicine and have to prick my finger every day for high blood sugar. Had to eliminate or limit carbs, which is difficult for me because I love my carbs. Have been on Piqray with Faslodex going on 6 months. Have no idea if it's working except my markers have gone down, but have not been able to have a CT scan to see actual results. I would greatly appreciate it if you and anyone else on this forum taking Piqray would share their experiences with this drug.

in reply toSoCalLady

Hi,

That's interesting you should mention the hives and hyperglycaemia as side effects of piqray. I have read about that elsewhere. As I have the PIK3CA mutation, I have been told that piqray will be used, along with faslodex, as my second line treatment when the time comes. I already take loratadine and metformin off label. I hope you are able to tolerate the drugs you are on.

Sophie

Arisgram profile image
Arisgram

What a cutie! Thanks for the photo!

So glad you are able to try piqray. I was disappointed not to have the option. I have been on Ibrance since Feb 2019, but now have a lesion on my liver. I guess they'll change my treatment as well.

Here's hoping you have tremendous success with very few side effects!

Andi

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