Afinitor and it’s side effects

I forgot to send you a hug Stacey. Today sucks and I’m right here with you.

Thank goodness for yoga pants Stacey. I'm living in them and my pajamas.

Moomala

Having a PET tomorrow, Tuesday morning. Can’t say my frame of mind has lifted these last few days. I have done some research, the next drugs in the arsenal don’t look like much fun.

Will let you know how it shakes out. Hope you are having a better day today.

Grateful to have you to bounce this around with. Trying to keep up a good facade for the kids.

Let’s do this!

Stacey

Moomala,

Back pain is the worst! I hope the usual rest and hearing pass take care of it. I’ll let you know what I hear, likely late tomorrow or early Wednesday. I sure didn’t see this coming, but whatever it is I will evaluate and do what will give me the best QOL for as long as possible. Would like to see my daughter graduate from grad school next year and if can ever leave our homes again, take a family vacation. Need to be reasonably healthy to do these things!

Thanks again for lending an ear!

Warmly

Stacey

Nkb,

Which protocol did you go to after A/A?

I am at 11 months! I guess that’s the number on this drug?!

stacey

Hi Nkb,

Do you look into Piqray at all? Based on my Foundation One Assay I am PIk3 positive. It looks nasty! I have read the board and no one has anything positive to say. Will look into Xeloda as well.

Didn’t get the PET, the insurance company denied it as I was going to get into the car this morning to go to have the scan. Another rant for another day! Having a CT tomorrow.

Cancer, what a barrel of monkeys!

thank you for taking the time to reply- be well!

stace

Hi Moomala,

I had the CT this morning. Imagine I will hear something later this afternoon or tomorrow. I want to avoid Piqray if possible, I will have to see what my other options might be.

I feel really well. A few pains come and go, and I do have a little breathing thing but I am able to run and do my power walking without any issue. It’s a mystery to me!

I’ll let you know what the scan says and the subsequent MO convo yields.

take Care

Stacy- I would be worried with TMs going up and CT normal too. Another person on BCO had that and finally the PET was approved and she had progression - never showed up on the CTs

I had a bone biopsy looking at mutations and the results came back while my doctor was on vacation- the on call doctor said the report was “confusing”- but I was still ER+. I forgot to ask my MO because I have been sick as S___. Of course only email and phone visits now- I keep forgetting to ask her. She did tell me that her colleagues who have put patients on Piqray said it was awful - so I don’t know if it is relevant at this point whether I have a pik3 mutation or not- I wouldn’t choose piqray probably if I had another choice.

Moomala- it’s a hemolytic anemia ( you destroy your own cells- the bone marrow spits out immature weird cells and your body destroys them. When I was admitted they did a chest CT and said no clots, I imagine no cancer either. I was too sick to question much.

I think the Xeloda is kicking in- so I am feeling a little better- hopefully it’s a trend.

Hugs

Stacey! That's great news. I hear you on the uncertainty with your TM's rising and the CT showing no progression. This happened to me in October but it just so happened I had a nuclear bone scan the same day as my CT. My TMs were rising and the CT was normal however the bone scan showed where the progression was that did not show up on the CT. I wish we could just have Pet scans. They're easier and I'm not allergic to the contrast AND they seem to show the most. When I had my first one in February this year there was plenty in my ribs that did not show up on CT.

I had monthly check in with oncology this morning. They said they had had one employee with covid but that they'd traced all activity and if I didn't get a call from them, it means we weren't exposed to that person. Ughhhh. Anyway we talked about the rising TMs and she said just don't even think about them until we get scans next month. So I'll try.

Moomala,

Just like you I am going to let it ride until next month, if the markers rise again, we’ll fight the insurance company for the PET and I will do a bone scan.
That Piqray sounds like torture. I suppose, as you said, we could try it, if it too much, we don’t have to stay on it.

I so hope that you haven’t had direct exposure to Covid. I am not one of the minimizers. No one should be blasé about it, it can damage your lungs, heart, and who knows what else?! Hmm, any chance it would kill the cancer?

So we will plow through this month and pick this ball up again in May. I hope your back pain gets better!

Thank you for taking the time to respond!