Petscan showed progression. Moving from Ibrance to Piqray. Terrified.

[Adele_Julia]

I'm ER/PR positive, Her2-Negative with the Pic3 mutation. My last Petscan showed progression in the right breast where my open tumor is. Working on getting that removed in the next month. Also a few bone mets showed up. Now my onc is moving me to Piqray, Fulvestrant (which I'm already on) and adding Zometa for the bones. My question is what's next if Piqray stops working ! Maybe I'm reading Dr. Google too much but my understanding is Piqray is the only drug available for the Pic3K mutation. Trying to ease my mind. Thoughts? Trust all had a wonderful holiday season ! Blessings - Julia

[Ardie1970]

Join the Piqray group on Facebook. Lots of great info there and the ladies are fantastic!

[Adele_Julia in reply to Ardie1970]

Hi Ardie, I joined ! xoxo

[Buffwright]

Terrified must feel awful! I hope this helps. I have been on Piqray, Fulvestrant and Xgeva for over a year and have no evidence of disease. I don’t know the next therapy, but my Onc assures me there will be something. The fact that we have the mutation is good news…it means we can take Piqray to good effect. It doesn’t mean nothing else will work. I was on Ibrance for over three years and it did a great job til it didn’t. The next great thing in the pipeline will avoid the eventual work-around our cancer cells are able to do. Breathe!

[mariootsi in reply to Buffwright]

So relieved to hear you are on Piqray with success. When the time comes for me, I pray for good results also. What side effects do you find with Piqray?

[Buffwright in reply to mariootsi]

Side effects….tolerable though not welcome! My hair thinned…after recovering from Ibrance; And got stick straight—was curly. Occasional diarrhea. And the usual fatigue and slight nausea. My torso skin is very dry and itchy…as is my scalp. Mostly all treatable. I don’t let them slow me down. I was in Zimbabwe and South Africa in November (no COVID!). I was NED with Ibrance too..til it quit after 3.5 years.

Happier New Year!!

[mariootsi in reply to Buffwright]

Thank you for your response. I really appreciate it. As everyone here I'm afraid to switch meds when the time comes.

[Adele_Julia in reply to Buffwright]

This is wonderful that you're NED ! I was on Ibrance / Fulvestrant for a year before it gave up the ghost. I'll stay on Piqray, Fulvestrant and Zometa for the bones. Was it the Piqray that got you to NED? Blessings my new Piq Friend ! Julia

[Adele_Julia in reply to Buffwright]

My nutritionist said that Piqray can make your sugar and insulin spike so focus on a Keto low carb, low fat diet. Interesting that the inventor of Piqray Lewis Cantley was actually on a Youtube video talking mainly about Keto but how Piqray has much more efficacy. Here is the link !

youtube.com/watch?v=S395qX6...(Not working as expected?)

[Pbsoup]

Ugh. Progression is no fun! I am sorry to hear this.

It doesn’t sound like it’s huge progression though and your doctor seems to have a plan. Maybe don’t worry too much about what’s next right now— between impending surgery and treatment change you have plenty to wrap your arms around.

You’ve got this!!! ❤️

[Hidden]

What a difficult time for you.Sorry I can’t offer any advice but there will be p,entry forthcoming I am sure.

I am pretty sure there will be more treatments.

Wishing you all the very best

Clare

[jersey-jazz]

Dear Julia Who knows! Please just concentrate on having a completely successful surgery to remove the open wound. Healing from that after having to deal with it for so long will hopefully cheer you up to no end. We of the cheering squad are rooting (spelling?) for you!

[mariootsi]

I have the PIC3mutation too. It is in my future also. It is scary to change meds, but if Piqray is specifically targeted to our mutation it is probably the best med for us! Let us know how you do and glad you are having your tumor removed. Sending prayers and hugs.

[Adele_Julia in reply to mariootsi]

Thank you sweetie. I made it one year on Ibrance at 125 mg and all scans over the year were stable if not regressing until this last one Dec 17. Boom. Showed progression almost overnight since my September 7 scan with now tiny bone mets. One of my first oncologists that I subsequently fired (lol) 6 months was so fatalistic. She said, we'll start you on Ibrance, then move you to Affinator, but if that doesn't work, Piqray. Piqray is the last stop because once you get on Piqray, you cant revert back. Yikes. She made it sound like the buck stops there and good luck after that. I got a second opinion. My current onc doesn't want to put me on Affinator or Verzenio because they're in the same class of drugs ( CDK4/6) blockers.

But you're right my first focus now is getting this masectomy done. Ardie and I are the gals with open tumors. Her surgery is today. I'm hoping mine is mid Jan.

Heart Hugs ! xox Julia

[Buffwright in reply to Adele_Julia]

I hope the surgery goes well for you. My mastectomy was a drive by. Home that night and out for breakfast the next morning (probably stupid, but at least I didn’t have to cook!). Be sure the doc gets the tail under your arm. Having my offending breast gone was a relief. I swim for exercise and no longer wear a prosthesis…. Who cares? (I am small breasted…)

[mariootsi in reply to Adele_Julia]

Julia, I wish you well with your surgery. Love and hugs.

[Iwasborntodothis in reply to Adele_Julia]

Hey Phoenix friend - what doc did you end up switching to - if you don't mind me asking

[Adele_Julia in reply to Iwasborntodothis]

Hey girlfriend ! Well I'm currently with Dr. Martin Langford for the past 5 months or so. He's far better than my first onc who was Meh at best. What I like about Langford is that he does - for the most part - spell things out. The last time I saw him , he decided to put me on Piqray, Faslodex and Zometa for the bone mets that recently appeared. What I found interesting is that he said "And I want you to schedule a oncology visit with Dr. Shakeela Bahadur from MD Anderson. She focuses strictly on breast cancer and has access to many clinical trials and other medications that between the two of us, she can help facilitate. When he initially mentioned that, my brain went something like this "why... because you don't know what you're ....". But when he went on to say that he wants her as an extra set of eyeballs, I'm like "Game on !" I see her early Feb. I also had Todd Erickson and Brandon Curley on my list but with my first priority being to REMOVE THE DARN BREAST, I'm sticking with Langford with Bahadur as his side kick. Who do you have again? Heart hugs and Happy New Year ! Juls

[Iwasborntodothis in reply to Adele_Julia]

Thanks for the good info! Glad you made the move. I am with Dr. Albert Wendt at St Joe's Dignity Health. I like him because he is a data nerd and he treated my sister for six years so I feel like he is part of the family. Hopefully we will run across one another sometime soon in our little world of Arizona. I'm here in town if you need any support after your surgery.

[Adele_Julia in reply to Iwasborntodothis]

I too am a data nerd. Is he boob centric as an oncologist? Let's do keep check on each other. I'm not adverse to always having a second opinion when it comes to Oncologists. xoxo

[Iwasborntodothis in reply to Adele_Julia]

Yes and the center is named after his wife who he lost to breast cancer in 2019

[Adele_Julia in reply to Iwasborntodothis]

What? How sad . Xoxo

[USIrishcolleen]

Adele_Julia,

I am sorry that I cannot be of much help with your treatment question. I just wanted to let you know that I am thinking of you, and wishing good thoughts and great news that you will be dealing with that open tumor. I will be praying that all goes well for you.

Best,

Colleen

[Georgiamjb]

Sorry to hear about your progression. I am in the same situation and will switch to Piqray from Ibrance due to progression in my abdomen. It was hard to hear the news, but am hoping for a good response and thankful to have this drug! Take Care!

[mariootsi in reply to Georgiamjb]

I wish you success on your new treatment.

[8576]

It does sound terrible switching but there are lots of medicines out there. Get a second opinion if you can.

Cheers, June S.

[8576]

good advice below.

June S.

[Adele_Julia]

You are simply amazing Sandra. Thank you for your insight, wisdom and encouragement ! Heart hugs to all the ladies who replied as well ! xoxo

[tab78FN]

Hi Julia, great information from everyone. I too had the PIK3A mutation so switched to Piqray (ILC MBC ER+/HER2- in 2017, Ibrance/letrozole x 3/5 yrs). I found the Piqray Facebook page very helpful (although not quite as user friendly/helpful as this page) and the members shared some really good information. It was encouraging to hear about folks who'd been on Piqray for 2-4 years or so. Unfortunately for me, it did not work out. The tumor in my adrenal gland progressed and I had side effects that caused me to stop after 5 cycles (5 months) -- my onc actually called me a "poster child for Piqray side effects".

So now we're on the hunt for the next treatment in the MBC rolodex. I have some other options based on my genetic testing and some clinical trials to explore (that is a whole new experience!). I don't know which direction I'll end up going with what is my 3rd line of treatment. As time goes on, more treatment cards get added to the rolodex, so I remain hopeful and grateful.

Blessings to you on this journey that none of us wished for!

Tami

[Adele_Julia in reply to tab78FN]

Hi Tami and happy new year ! Really appreciated hearing your story re: Piqray. I was on iBrance for a year and candidly, was a tad bit bummed that it gave up the ghost so to speak. My onc didn't want to put me on Verzenio or Affinitor because they are simply in the same class of CD4/K blockers as iBrance so "whats the point". Just started Piq yesterday ! Keep me posted on your next steps sweetie. Its so encouraging to have an onc that actually has a vested interest in their patients. Blessings ! Julia

[Teddielottie]

Thinking of you Julia and sending love ...wish you well with the surgery and on the new treatment . Hope Piqray works well for you for a very long time ! x ❤️

[Adele_Julia in reply to Teddielottie]

Thank you sweetie. I'm desperately waiting to get these last scans (breast MRI and Chest Ultra Sound) done so my breast surgeon can get this thing scheduled. The pain is killing me with this tumor .... hoping it will be before the end of the month or check for me somewhere in the Looney Bin. lol