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Itovebi

Frenchgirl69 profile image
13 Replies

After almost two years on Ibrance and letrezole, I had progression. I only have mets to my liver. It was discovered I have the Pik3CA mutation. In late December I started Ibrance, Fulvesterant, and Itovebi. Within a few days, my glucose level went to over 300. The Itovebi was stopped for a few days, and I was given Metformin with the combination. The Metformin didn’t seem to help. Again, within a few days, my glucose level went over 300. I was told to stop Itovebi, continue Metformin, and Ibrance. I see my oncologist tomorrow. I am very frightened. I am afraid Itovebi won’t work for me. I am taking 500 mg. of Metformin a day. I started Fulvesterant in late October and continued with Ibrance.

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13 Replies
Trissh profile image
Trissh

i was on a clinical trial with inavolisib (Itovebi) and had to take metformin twice a day and watch my carbs to keep fasting glucose in check. It did work for over 9 months. Stay on the 9mg if you can. A few months after I lowered to 6 I had some progression. --Trish

Saltandlight profile image
Saltandlight

Hello! I was on Ibrance and Letrozole until had more bone mets and also discovered the Pik3CA mutation. My onc put me on Piqray and I had the same results as you so she pulled me off. She gave me no alternative except Fulvestrant alone which didn’t work.

I’ve read about Truqap but have no experience with it but may be worth asking about as an alternative. I wish you all the best! 🙏🏻

Merma profile image
Merma

I don’t know how drug doses work with each other, but I’m on 500 mg of Metformin twice a day. Maybe that could help?

Hazelgreen profile image
Hazelgreen

Perhaps your oncologist will let you try Kisqali (400mg) with Letrosole (2.5mg). I have extensive (including my liver) mets, and this combination has kept all in the normal range for this senior citizen for several years now. It seems obvious to me that you should not be taking Metformin! Remember this is your body (not your doctor's), and it is the only one you have! Good luck, Cindy

bikebabe profile image
bikebabe

I can understand how anxious you must be. If you have a hormone sensitive cancer then the change to fulvestrant may give you a breathing space to try another cancer suppressant whether a different cdk one or the other treatments that you see on here xeloda etc. May also be worth considering some form of distraction therapy (hypnotherapy, tai chi, new hobby) to help redirect your concentration/thoughts away from the anxiety.

MettavivorDS profile image
MettavivorDS

Have you tried taking benfotiamine? It’s a more absorbable form of B1 (thiamine). B1 helps regulate blood sugar. It also helps with nerve regulation. I’m taking Truqap which ca also cause high blood glucose, but the benfotiamine has prevented it from happening. It’s worth trying a vitamin. Lots of side effects can be helped by rebalancing vitamin and mineral deficiencies.

Adele_Julia profile image
Adele_Julia

I was on Piqray for 14 months with no glucose issues. I took 2 500 mg Metformin tablets twice a day and Jardiance. The trick with these Pik3ca drugs is to absolutely cut car and sugars. The scientist behind Piqray recommended a Keto diet. Cut out orange juice and any type of juice or juicing. Test your glucose daily !! What you eat is critical

WhippetX2 profile image
WhippetX2

I agree with Adele_Julia above. I have been on Piqray for 13 months and take 500mg Metformin twice daily. In addition I had to completely redo my diet. Basically I eat proteins, vegetables and a little fruit now and then. Yes, it's restrictive and no I don't enjoy eating this way but so far it has given me 13 months on this treatment. Perhaps you are already doing this or are going to have glucose issues on this treatment no matter what. Just a thought.

Mimigram profile image
Mimigram

I take metformin three times a day with meals.

Mimigram profile image
Mimigram

I also take 500 mg of berberine twice a day with meals. Is it also lowers glucose. You buy it on Amazon.

ba5083 profile image
ba5083

I was put on Metformin by an integrative Oncologist. A lot of research suggests, although not conclusively, that lowering glucose levels prevents progression. I was also told to exercise within 30 minutes after eating (starting about 15-20 minutes after finished eating) to try and get the muscles to take up the excess glucose from the meal. Something as easy doing 20-30 minutes of continuous house work or walking can help tremendously. It stands to reason that even sitting aerobics or chair exercises would also help.

Dragonfly2 profile image
Dragonfly2 in reply toba5083

Such an interesting bit of info! It’s always been good practice to go for a walk after a meal… and here you have the explanation… to use up the extra glucose! Thank you for this !

13plus profile image
13plus

Can they let you try just iBrance and Fulvestrant, without the other? I had used letrozole before getting my dx of mets, so when I started treatment for my mets I was put on iBrance and Fulvestrant, which lasted at least 2 1/2 years. My doc said at the time that there was no real way to know if the Fulvestrant might be enough by itself to keep my cancer in check!

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