Hypermetabolic PET results

[Tuckermom]

Hi everyone...God bless you all in this fight. I have only posted once before, I think. But, sure do keep up with all on this board...so helpful!I have triple pos MBC with Pik3ca mutation. Diagnosed about 2 1/2 years ago. Not much luck with treatments...am on my 4th or 5th line...have lost count. My latest is Verzenio. A little over a month into it, my ca15 had come down from around 60 to 37! I was so excited to see that and felt so encouraged. Then a few days later I got covid and strep at the same time...sympyoms not all that bad, but got so sick afterwards and dealt with it for weeks. My ca15 then spiked up to 58 and the last one almost doubled to 94. My PET scan last Thurs says I have extensive hypermetabolic areas in multuple places...it is all over my bones. Brain scan coming up to see if it has spread there. Dr wants to start Doxil. When I told him I was not sure I wanted to go through chemo again, he said he could set me up with palliative care ot hospice. I told him I am noy giving up on treatment, just want to see if there is anything else. I am taking 2 weeks to pray for guidance and we will meet again. Jusy wondering if the covid infection set me up for all of this...the inflammation, etc. Is there anything to reduce inflammation and if so, will Verzenio start working again? Sorry foe rambling. I am still trying to process it all. I so appreciate ANY input. Thank you all!

[HelenWi]

hi, Tuckermom,

I just read your previous post. I think you need to escalate the refusal to get Piqray. You r oncologist should help with that too. There is a newer drug for piq3ca mutation called Truqap. And if you’re her2 low, you could get Enhertu which is a very powerful drug. Honestly if your oncologist offered hospice with all these possible drugs still not used, I’d consider finding another doctor. 👨‍⚕️

Is your oncologist a breast cancer specialist? I’d *definitely* get a second opinion from a breast cancer oncologist from a research cancer center. They usually have a much broader perspective and many ideas. I have a respected onco but I still went for a second opinion from a breast cancer onco who offered several additional drug options.

It’s hard to accept that your insurance won’t pay for Piqray, an fda approved drug. Perhaps your Dr office can help with that? But also check out Trucap. Also, most drug companies have patient assistance programs. Please don’t give up on all these possibilities.

Wishing you the best, stay positive and get a second opinion. You still have a lot of possibilities!

Helen

[Tuckermom in reply to HelenWi]

Thank you Helen! Yes, that is what I thought....surely there are many more options out there, even besides IV chemo. I did try Enhertu...had bad reaction with first dose...ended up in infusion center getting fluids and morphine.My doctor's office did fight for the Piqray coverage. Insurance denied because is approved for her2- and I am her2+ or low+.... They did get me samples and tried me on it...again, had horrible response. I don't know might be worth trying again, if could get it approved...don't know. I was so encouraged by my tumor marker response after starting Verzenio, but covid killed that. But, thank you, I will ask about Truqap...I am in eastern OK so, I guess the closest research cancer center is MDA in Houston. Have not ruled out anything. Thank you for your response. I appreciate all on this forum...such a valuable resource. I lift you all up to the Lord's tender care!

[HelenWi in reply to Tuckermom]

i’m really glad to hear that your office did try to get the insurance to cover Piqray. It’s quite maddening that the insurance makes these calls on your health. If you have both mutations, you should be able to take advantage of both therapies. You might have the same problem with Trucap but worth a try. I would consider going to MD Anderson. You might check on this forum for names of breast oncologists . You never know, they might have better leverage on the insurance company since they’re so big and so well-known.

I took Piqray for 18 months. I was lucky not to have terrible reaction, but I did have a rash and some swelling around the eyes that went away. Trucap is supposed to be easier to tolerate.

With Enhertu , did they consider a lower dose?

Good luck and keep us posted. ❤️

[Jmarkova]

First I hope you can find a good treatment for you. I do not know for how long you have taken Verzenio. My experience with Verzenio and what I read is that it takes 6 to 8 weeks before any improvement shows up. I agree with the other reply, surely go for a second opinion, there should be more options. Good luck.

JM

[Tuckermom in reply to Jmarkova]

Thank you JM! I have been on Verzenio since early May. I agree with you that there should be many more options...and am considering all options! God bless you!

[Bettybuckets]

first I am sorry this is happening now… 2nd/ I was a Tucker mom.. so love your name! And what I really wanted to say is Doxil has been my fav treatment so far… so don’t fear it. Once a month and not much bother other than the day of treatment and I function fine on day 2 but I don’t try to do much… and then back to LIFE for a whole month. No hIr loss. Just didn’t want you to fear it… pretty easy overall.