PIQRAY side effects

[Lilian848]

Good morning All Happy Monday

So this is Day 6 on PIQRAY and it has been a rough weekend due to one side effect. High blood sugars. They have ranged from 288 to 475. This morning when I woke up I tested it and it was 401. Waiting for my onc’s office to open in 12 minutes. I don’t think this is going to work for me. My diabetes was under control before this and now it is all over the place. The things we have to go to beat this. I will keep you all posted. Have a blessed day and stay strong and positive

[MacroMom]

It's easier to stay positive looking at your smiling face - what a lovely photo! I hope your onc has some good ideas. I wonder if a lower dose would help? Wishing you strength, support and clarity as you weigh options and move forward. Thank you for the updates!

[Francesca10]

Lilian

My doc told me that 70% of people on piqray develop diabetes. I am waiting for the mutation test to come back. What would be next step for you then?

Pretty picture of you♥️

[Lilian848 in reply to Francesca10]

Thanks for the compliment on my picture. I am waiting on a call back from my onc I am not sure what the next steps are , maybe they will lower the dose as the high sugar levels are the only side effect. It is frustrating that I worked hard to get my diabetes under control and off insulin

[SoCalLady in reply to Francesca10]

Hi Francis, has your mutation test come back? Also, can you ask your doc where the 70% people who take this drug will get diabetes info comes from and why? If so, why would they put someone who already has diabetes on it?

[Francesca10 in reply to SoCalLady]

Not yet. When I see him again will ask. Most docs will say because the benefit outweighs the risks. In your situation, were there any other options given?

[SoCalLady in reply to Francesca10]

Yes, let us know. I can't find anything on the 70% getting diabetes. I did find about 35% got a rash and 62%got hyperglycaemia in clinical trials. My guess he's using hyperglycaemia and diabetes interchangeably? I've seen different things here getting rid or helping the rash, but nothing on helping the hyperglycaemia.

[Mindysooty]

oh no, sorry to hear that. Hopefully by now you've seen your Onc and got a plan. Keep us posted. Best wishes. x Josie x

[hdhonda]

Lillian, I hate that it has effected your diabetes. I hope they can get it down without insulin. I am diabetic too. Blessings Hannah

[Barbteeth]

Hi beautiful lady

So sorry you’re struggling...we just have to trust our oncologists to get a plan together

But it’s so hard

I wish you all the best

Barb xx

[mariootsi]

What a beautiful happy picture! You are beautiful. Hopefully maybe lowering the dose will stabilize your diabetes.

If it isn't one thing it's another. So interesting the side effects of these meds have.

You wonder how they work But Piquay is such a specific targeted treatment. I pray it will work for you!

[hopenowandtomorrow]

Hi beautiful! I hope you got blood sugar down. Thank you for sharing your experience with Piqray! What did your onc recommend? Praying for a viable solution for you.

❤️🙏❤️

[SoCalLady]

Any news from onc yet? Are you on a clinical trial with this? Also, are you still on Fulvestrant? And, lastly, have your markers gone down while on this drug?

[SusieIM]

Thank you for your update. I love your picture.

[SoCalLady]

Lilian, when they put you on Piqray, did the Onc advise you or give you a low/no carb type diet to use? I know you already had your diabetes under control, but maybe a more extreme one? I am overweight and not once has my onc even suggested I lose weigh considering that Estrogen is made by fat (carbs & sweets). I no longer have female parts to cause Estrogen,so one would think these meds could adequately control it, but no, my mets seem to be slowly winning.

[Francesca10 in reply to SoCalLady]

I gained weight also through treatment and asked about taking my ovaries out at 65? The onc told me that’s not the only producer of estrogen?! And yes he did tell me the more fat cells the more estrogen. ❤️

[SoCalLady]

Haven't heard from you in awhile. Is everything okay? Are you still on Piqray?

[Lilian848]

Hi It has been a rough couple of months. I was on 300mg of Piqray for a week and it was not playing nice with my sugar levels. They were in the 400/500 so the doctor took me off it for a week to get the numbers down. Then I ended up in the hospital on 9:16 for 3 weeks with new lesions on my right leg, so I had to do radiation and rehab got out on 10/3. Started on a lower dose 250 mg of Piqray still didn’t play nice so I had to go see an endocrinologist on the 20th of October who decided that I needed to be on Insulin (I haven’t been on insulin for 15 years diabetis was under control) so to make a long story short yes still in Piqray and insulin Sugar levels are better still in the 200 but the good news is that I saw my oncologist last week and had my blood work done and my cancer markers have gone down so we will continue this path to see what happens. The main thing is that I am still here like the rest of us giving the good fight