My Solitary Experience

No im here i’ve had PP since 2015 Thank goodness I have a Terrific Dr and his amazing Team You can ask me anything be glad to help !

Hi Sharon, did yours start as ovarian? That’s what they thought mine was so they took out all the girl parts with a radical hysterectomy and didn’t find any cancer under the microscope, but the blood indicators went all the way down so we figured they got it.And then they did chemo and then I did two years on Lynparza and they thought it was gone, but it’s back and the blood numbers are very low so it’s very early, but the numbers are increasing and so far it is not showing up on CAT scans or PET scan

So now thanks to the chemo of course I have CIPN which is not going away, as they said it probably would and of course there is no cure for that.

yes Steffi chemo is a bitch my perennial began in my abdomen, and eventually I had a hysterectomy. Did three rounds of chemo. Did radiation did another two rounds of chemo and now I’m on Hertu which is a target chemo that only kills the cancer cells.  I tolerate that very easily. My doctor said I’ll probably be on it for the rest of my life unfortunately there is no cure for perennial cancer.

OH an Yes i have CIPN I use foot pain relief that I get on Amazon that seems to help

Thanks for the reply. I am currently not on any treatment, but I have another CAT scan coming August 26 to see if it shows up. So far it’s only showing up in my blood work this time.

Are you talking about Enhertu? It looks like that targets HER2 cells in breast, cancer and small cell lung cancer, and Gastro cancers, but I don’t see that it is used for primary peritoneal cancers. I guess maybe yours is different from mine but then we don’t really know what mine is yet so who knows

I’ve been on maintenance chemo, currently on a two month break due to stomach pain and other side effects. Most recently I had pleurodynia which supposedly only last 4 to 6 days, but I get a recurring sharp pain under the ribs and trapezius. It seems like the stomach pain is every day, due to resection & anastomis. anyone else have this?

Yes Steffi that that’s what I am on now and I tolerate it very well. First usage was too much and I lost all my hair but that’s coming back but I don’t get sick and I don’t have any side effects. Good luck August 24. I’ll be thinking of you. 

Thank you. That CAT scan in August still did not show my cancer so it is still not being treated at this time. It’s really kind of maddening. This week I will be giving blood again for another Signatera test to see how bad the numbers have gotten.

Peritoneal cancer can feel like a less common diagnosis, and it's completely natural to feel like you're navigating this path with fewer people who truly understand the specifics of what you're going through. This community is here to connect you with others who share similar experiences, and there may be more members dealing with peritoneal cancer who haven't posted yet but could benefit from seeing your openness in sharing.