Piqray/Alpelisib (plus Fulvestrant injections) Trial so far

[Timtam56]

Hello everyone. From Stevie and me.

Just popping in to let you all know that I am nearly 2 months into my Piqray journey. (The trial is called CAPTURE here in Melbourne)

After having a terrible, terrible slump when I came off 5 1/2 years of Ibrance and Anastrozole, due to new mets in my liver, after having only ever had considerable mets to my bones. I am feeling soooooooo much better. (I didn’t know that I would have the most awful withdrawals from coming off the previous meds. No on told me. So I also had to deal with the shock and the fear)

Yes. I have medication induced diabetes now. So that means I have to be on medication called Metformin. And that stinks. Because of course there are side-effects from that medication as well.

And…. Yes. I have awful side-effects in my mouth, which means I can’t taste any food. Everything tastes bitter and my mouth is constantly dry. But I think maybe the dryness is getting a little better. The bitterness and the taste is still upsetting me. But I’m losing a bit of the unwanted weight I put on over the years with Ibrance and Anastrozole. 🤪😆🥂

So, other than all of this, I must say that this drug is being kind to me at present. I am on another site for Piqray users, and I know that we can turn it any time.

I don’t have high hopes, but I’m also not overthinking it. I’m just hoping I do as well on this as I did on my first line.

I am sending love to all and hoping that there are others out there that may be helped or given some hope by my story.

[Discocat]

Hi its good to hear from you.

Sorry to hear that you've been through such a tough time switching meds.

I've never heard that there were withdrawal symptoms coming off ibrance either....I've only switched from Kisqali to ibrance so far and am now nearly 3 years on those type of meds.

I've had symptoms come and go in that time that I thought would never go....so I hope the same applies to your new combinations, and that you settle into them asap!

Wishing you all the best and a prosperous new year.

Love ×××

Zoe

[Timtam56 in reply to Discocat]

Well maybe it’s because I was on the one line of treatment for 5.5 years!

[Discocat in reply to Timtam56]

YupYou had a good run on that!!

Hope you get great results off the trial meds.

Stevie looks like he's there for you on the cuddle duties!!

[bikebabe]

thank you for the update - always good to know how people are doing with changed treatments. Hope the diabetes and other sfx stay continue to stay manageable. Do you still have bone strengthening meds?

[Timtam56 in reply to bikebabe]

Yes. I’m also still being administered Xgeva/Denocumab once monthly.

[Hopeful4Cure]

So nice to hear from you. Thank you for the update. Glad to know that this new med thus far is working. Hopefully it will continue too. Blessings

[RachH20]

great to hear about this trial, this is a drug considered for me at some point too. Hope it’s works well for you for a long time x

[LDR1]

hi Timtam, thanks for sharing the photo of your cute doggie, mine is a source of comfort for me too! I’m in the US where Piqray is an approved course of treatment so I was on it recently for about 5 months before switching due to progression. I tolerated it well and had no side effects except mild diarrhea which was manageable (and led to some weight loss, allowing me to fit back into some old jeans!). I’m curious if your trial includes pairing it with an anti-hormonal drug. Here I’m the US we’re required to pair it with Fulvestrant (monthly intramuscular shot which I also tolerated well).

I hope your side effects subside over time and that you get great results from this drug!🙏🏼💜🐾

[Timtam56 in reply to LDR1]

Yes. I will fix my initial post, so it explains that I”m also on fulvestrant. And I’m sorry that you got progression after only 5 months. Where and how bad was your progression LDR1?

Did you feel anything happening where the progression happened?

[Dragonfly2]

hello TimTam56…so good to “see you” with your little dog! I too have decided to go on Piqray after 38 months on IBrance. Briefly, I had thought to go to Zeloda but since I have the pik3CA mutation, I figured I should follow the stand of care recommendations. I was shocked to read that you described “withdrawal” pain from IBrance …is that what I had?

Radiation did not seem to fix my pain issues though I must admit I do not seem to have pain in my sacrum and spine…it’s all in my hips now. I will see if more radiation is recommended on the original tumor in the iliac.

I wish you continued good luck with Piqray…I was wondering if you are also taking Fulvestrant injections? The hormonal therapy that goes with Piqray. The diabetes side effects are another concern but I pray the metformin helps you.

Stay in touch…❤️‍🩹❤️‍🩹

[Timtam56 in reply to Dragonfly2]

Yes. Yes. Sorry. I should have said that in my post, I am taking fulvestrant injections. Forest off, I had them 3 times in a row, two weeks apart. Now i”m on to 4 week intervals of them. they hurt. Yes. But it’s really not that bad depending on the nurse you get to administer them. And if they go nice and slow and if they wam them up first. Much better.

Yes. I had pain, Felt sick and felt like it might be th end of me back then, when I came off the Ibrance system. It is only my opinion that it was withdrawals dragonfly2. No one else suggested it and no one has agreed with me since..

But, if you’re willing to listen to what my doctor said to me when I asked her how long they would have to live if I came off all medication’s for Cancer, she told me around 3 to 6 months. I know that this could be controversial to say on this site, and I’ve never wanted to mention it, but I’m a realist, and I wanted to know the truth. so if that’s the case and I was off all medication for Cancer for a little over one month, my guess is that my body was losing its Mojo real fast.

[jersey-jazz in reply to Timtam56]

Dear Timtam56---Thank you for your informative entry. I too have the PIK3CA mutation but have not been offered PIQRAY, possibly because of many malignant tumors in my liver. Incidentally, most of them have been ablated. I read of the side effects which are bad for the liver. Knowing that your cancer had progressed to your liver, did your doctor discuss the side effects of PIQRAY on your liver? It seems to me if they bother to test for mutations and find them, that the doctors would act upon that information. that information.

This past year has been a complete disaster with the interventional radiologist slipping with the instrument and making a hole between my liver and my colon. Other bad medical things happened to me as well. Consequently, I went off all treatment in order to regain some of myself back and have been off since July. Aside from having Covid just now, so much of my general health and well being has returned. I am preparing to go back onto treatment which is why I ask about PIQRAY>. Thank you for any info about PIKRAY you can share with me.

[Timtam56 in reply to jersey-jazz]

Dear Jersey-jazz

You have mentioned a few things here that worry me. No….I have never heard an about Piqrays effect on the liver. No one has ever mentioned anything!!! (See this is what I love about this forum. We all keep each other informed so much more than some of our medical practitioners do.)

Also. What do you mean by liver ruours being ‘ablated’?

[jersey-jazz in reply to Timtam56]

In answer to your questions, I looked up the side effects PIKRAY and possible damage to the liver is mentioned.

The ablations were done at Sloan Kettering Cancer Center in NYC by a very talented and daring IR. She is the one that slipped with the instrument after having removed nine tumors on three previous occasions. I know this sounds strange but I would recommend her to anyone.

[michelangelina]

What a great picture of you and your dog! So cute. Anyway, I have been on Ibrance/Letrozole for 5 years and 9 months. Still stable as of my last scans. I had not heard about withdrawal symptoms after stopping Ibrance. Can you give us a little more detail about what you experienced? So glad you are feeling better now.

[Timtam56]

hello MichelAngelina.

If you go back to my previous posts, you’ll see what I wrote up about how terrible I felt during that time a few months ago. It was around November.

so basically I had been on my Ibrance and Anastrozole for 5 1/2 years approximately. And my Cancer markers were rising during the previous months last year before I was taken off. And my doctor wanted to wait until she saw the scans that would correspond with rising markers because she’s always said that markers don’t mean as much as the scans.

When I did have the scan it showed that I had progression from bone only, into my liver as well. So she suggested I go on the trial. I would say I was off my med my medication for just over a month.

I’m trying to remember, but I think it was about a week or so after I’d stopped that my pain started to get so much worse in my spine and ribs, I didn’t know it, but I’d also broken two bones in my upper ribs near my right shoulder, and I hadn’t known what that pain was all about until the scans. But with all the pain, I was basically almost bedridden. During that time, I only remember being on the couch or the bed and just wanting no one around me yet feeling very very alone and scared. All the medication I was on for pain., and I’m on a lot, didn’t stop the pain that I was going through.

My Palliative care nurse recommended that I go on a higher dose of a drug called Lyrica or pregenisolone. Which I was already on. But he raised the dose. So then I started to be really really sleepy as well as in pain until that kicked in properly.

I hope this explains things properly for you. Feel free to ask if you need more info.

[RedwoodLady]

Hi TimTam,

Ilene here from Northern Ca

I am into my 4th year of Anastrazole. I haven't had much trouble with it, but my CA 27.29 Blood Test Marker has been rising, so I'm having more images taken Feb. 2nd at Stanford Hospital. Wish me luck!

[ClarenceO]

That’s great news. I can’t believe you wrung out 5 1/5 years from Ibrance! Mine worked for 18 months and now I am on the same regimen you are. I was able to avoid Metformin. When Piqray makes my glucose too high, I skip it for several days w my onc’s blessing to keep my glucose in line. After 9 months, it’s held the cancer stable without many side effects. For dry mouth, I use Biotene at night. It helps a bit although I still wake up every few hours parched. Best of luck on your new line of treatment.

[TammyCross in reply to ClarenceO]

I found these wafers that make you produce saliva. Tuck it into your cheek and go back to sleep. I have a CVS brand, called Dry Mouth Discs, with Xyllitol. (Don't tell me Xylitol is bad, or interacts with our meds!)

[Timtam56 in reply to TammyCross]

I’ll try to get some. Are they shaped like a tablet? I can’t see the wafers anywhere

[TammyCross in reply to Timtam56]

Yes, like a big flat tablet. They call them "discs." I guess "wafer" was misleading.

[Timtam56 in reply to TammyCross]

Ha Ha. I got it. I’ll order some now then.

The mouth thing is driving me crazy. My oncologist (sight unseen) has decided to treat me for mouth thrush, but I don’t think it is that at all. I think it’s just the Piqray effects.

[Timtam56 in reply to ClarenceO]

Ha Ha. that dry mouth at night thing. You nailed the explanation of waking up parched. And do you have the bitter taste ast well?

[ClarenceO in reply to Timtam56]

no bitter taste, just a greatly reduced appetite which I can live with since I’ve lost a few pounds! Someone mentioned xgeva causing bone fractures. I used to get xgeva monthly and do have femur fractures. It’s now quarterly. Cartilage in both hip joints is gone so I have to have both hips replaced. Walking is very painful and movement is constricted. No more Zumba. Because of the femur fractures, the pins that will go into the femur connecting to the hip joint will be longer than usual.