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New treatment for PIK3 inhibitor

Hi Ladies!

I saw my onc earlier this week and she mentioned that one of the big news items at the San Antonio conference was the likely imminent FDA approval of a new treatment for BC patients who have the PIK3 mutation...It DOUBLES the PFS (progression free survival, i.e. the duration with no progression).

Like most/all (?) of us, I did the Foundation One genomic testing shortly after diagnosis. BTW, not sure if insurance covered it but I ignored the $3000 bill for a couple of months and it went away...

...anyway, that testing did reveal one mutation that was potentially actionable: PIK3. A high percentage of BC patients have this mutation...something like 17% of triple negative patients and like 40% of ER/PR+ (these are from memory...). At that time there were several treatments in trial...this is actually how I ended up w/ my doc at MSKCC...she was working on one of the new drugs...

Anyway, three different drugs - by different pharmaceutical companies - were tested, and one came out a real winner: Alpelisib by Novartis (btw, this is not the one my doc was working on...). In combination with Faslodex it doubles the duration of PFS, on average, from about 5.5 to 11 months.

Now, if you're like me, you look at 5.5 extra months and feel a bit deflated. But I remind myself that this is an average...e.g. Ibrance, which many of us love, doubled PFS from a little more than a year to a little more than two years. But many women have been on it for four years or more with no significant progression. And the fact remains that double is double, and I'll take it! :)

So I think that when my current Faslodex/ibrance combo stops working, I have a new next course, which will be this Alpelisib, after which I'll move onto what would have been my next treatment...so this could buy me an extra 6 months or more... :)

Anyway, it's not yet approved, but my doc was under the impression that it will be soon...

Here's a link to one of many articles..

novartis.com/news/media-rel...

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Thank you for the information. Enjoy the holidays :)

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I live with my daughter and grandchildren, before the Mets l would follow their vegetarian diet at home but much of the time wouldn't if l went out and sometimes not at work. After the Mets diagnosis in July, 2017 the whole family went plant based, whole foods, no dairy, low low salt, no oil of any kind at home, low oil as possible eating out, no sugar (use date sugar or pure maple syrup, very little), and low salt. So we are technically vegan but do use raw honey medically as it is so good and healing.

This way of eating is good for you, good for the planet and delicious. It provides everything you need except that you do need to take a 1000 mg vitamin B12 daily.

I am so very fortunate, my daughter does all of the cooking ♥️

When recipes call for oil she doesn't use it, some things come out just great that way, some things you use applesauce (remember she's the cook, not me). If you have a specific question, she will answer it for you.

We eat occasional small piece of chocolate (high cocoa content, fair trade, and she looks to see what's added). 6 days out of 7 we have stone ground whole oats oatmeal for breakfast (easy in the instant pot). You can make granola in the oven, potato fries and other crispy things without oil (on parchment paper, it just takes longer to make).

That's a lot of information from a non-stop! I just wanted to encourage you and others in this healthy way of eating.

Check out:

nutritionfacts.org

How Not to Die Cookbook, Dr, Gregger

Forks Over Knives Cookbook

Forks Over Knives quarterly magazine

Dr Estylstein

Ezekiel 4:9 products

Fire Engine (or house?) 2 products

Happy holidays and happy meals 🙂

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NPmary,

Thanks for the great info! I, too, went vegan post-diagnosis; at the time not so much for the health benefits but because I am an animal lover and wanted to die with a clean(er) conscience! But the health/energy benefits became apparent almost immediately! My onc agrees that this is a great anti-cancer diet.

One book I'll add to your great reading list is The China Study, which details many thought-provoking facts re: the link between diet and cancer.

And Kudos re: being able to maintain such a strict diet...As in every area of my life (! :) ), I fall well short of the ideal, but just understanding what that ideal is at least points me in the right direction...

I really don't put any more effort into my diet than pre-vegan...a pot of veggie chili or pasta, a grilled bean/quinoa burger from Trader Joe's, or some carry-out Indian, Thai, or Japanese and I'm all set! :)

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Hi Mary,

Thank you for these resources. I am always trying to find ways to improve my diet and live a healthier life. I eat a mainly vegetarian diet, with a little meat from time to time, but I go some days with no meat or dairy at all, so am vegan on those days.

When I saw my oncologist in November I showed her my "six month health summary" and went over all the changes I had made (I saw her eyes glaze over a little!) Then when I read her doctor's report that was sent to my GP (she didn't send me a copy this time, but she normally does!) she was a bit patronising and said she had told me it wouldn't hurt if I had a piece of chocolate or a Chinese takeaway! But taking more control over our diet can make a huge difference. Just look at Kris Carr and others who have been living with metastatic cancer for years, sometimes decades. I don't know why some doctors say otherwise.

I stopped adding salt to my diet when I was 16 because my mum was diagnosed with high blood pressure and I wanted to make it easier for her to make the needed changes. It has also benefited me too over the years and my blood pressure remains normal. I also do not cook with oil, but use cooking sprays, or sometimes a splash of water will do. I do use coconut oil in some recipes (and sometimes to condition my hair) though.

I agree that apple sauce is a great substitute for oil, especially if you are making a cake. I like to make homemade apple sauce. It's so easy to make and I love how you can control the ingredients. I never add sugar to it, just apples, cinnamon, nutmeg and a splash of water. We had a glut of apples this season, thanks to the apple trees across the road in the woods, so I made some apple sauce. By the way, I have an instant pot too. My husband and I have not used it much, but I have a lot of ideas of what we can make next!

I really appreciate the list of books and other tips you included. I will write them down and see if I can order them at the library.

Have a good weekend!

Sophie x

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Good for you ! Most docs have little nutrition education and just tell cancer patients to eat what they want, eat ice cream, try not to lose weight. Better to not even talk about food to these folk!

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Thank you! Doesn't it seem ironic how it is drummed into us as children to "eat your vegetables" and to go easy on sweets, but the moment we are diagnosed with cancer we are told to eat whatever we like?! I had a Macmillan cancer cookbook that I thought would be useful for me, but a lot of it is geared towards helping patients put on weight or help with side effects of chemotherapy, so I gave it away to someone else who can use it. x

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Yes!

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Thank you. This may be something for future reference

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