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.

I have not posted here in a very long time because nothing has really changed other than the numbers in my blood work going up dramatically in the last six months or so. When my CA125 went up over 700 it was more than twice what it was before the first rounds of chemo and they decided they were going to treat me even if they did not see anything on the imaging, but I had a pest scan and they finally spotted it in a few places. I wish I could see the films, but all I get is the written descriptions in the MyChart app. So I have now started chemo again Three drugs this time there were only two last time Avastin, DOXIL, and carboplatin, which is the one I had last time. First treatment was January 28 and so far so good.

Does anybody else have anything new to report here? I wanted them to do a biopsy, and my oncologist said it really wasn’t necessary, but if I would feel better about it, he would order it and he did. I was supposed to have a biopsy of the left adrenal, but they canceled it because the doctor that was going to do it said it was not worth the risk and the other locations on the films were all in lymph nodes buried behind other organs and apparently not easily accessible. So they are just going along with the belief from the blood work that this is the same cancer I had before, that being ovarian, even though they never found it in my ovaries! And that was why I wanted that biopsy. Pretty upset upsetting.

Hi, Im Aurora and I was diagnosed with Primary Peritoneal Cancer October 2023. This is my Ist time to be in a group.

I was diagnosed with primary peritoneal cancer that originated in my ovaries. I had a complete hysterectomy 35 years ago so was shocked the cancer was linked to my ovaries. I started first 3 rounds of chemo then have debulking surgery along with HIPEC in June followed by 3 more rounds of chemo. I couldn’t believe how rare this cancer is!

Hi Marilynn, thank you for the reply. Do you happen to know which chemo drugs you were given? They have me on carboplatin, and Doxil monthly and Avastin every 2 weeks. I have two more rounds of the chemo to go and then expect to be on an Avastin every three weeks, but I don’t know for how long. Side effects this time are more noticeable than the first time I had chemo as I am having to take anti-nausea pills several times a week and my acid reflux has returned with a vengeance, even though that was very much under control before chemo. Cancer sucks. Again nothing showed up on my CAT scan last month but the CA 125 is still over 400. But that’s certainly a lot better than the 2500 it had gotten up to when they started this second round of chemo treatments. Best of luck to you and all of us with this damned disease! I just looked up HIPEC treatment as I have not heard of that one before. It sounds pretty intense and serious. I hope you tolerated it well and will have a long remission!

I read eight in one million are diagnosed with peritoneal cancer. It is usually found while looking for something else. Very few or no warning signs. I was stage 3C when found 6/2023. I have been on several combinations Gemzar with carboplatin before surgery. Total hysterectomy and it had spread to my colon and after 6 week recovery started back on it. They found it no longer worked. I was desensitized to Taxol since first round I tried I went into shock. I was allergic to first three they tried. (Taxol, Doxil, and the red devil). The Taxol probably worked 7 months. Took Elahere which is now approved til it quit working. There were a few more that quit working. I am currently on Topotecan and Avastin. I have been on this for 11 months. I have been able to keep it out of my organs,but it is in my lymph nodes. I lost my hair, couldn’t taste food for 5 months except for sweets. I’ve been to Duke, Mayo Clinic and telephone with UVA. Unfortunately there is no cure but trying several different treatments have increased my survival rate for now. I was told 6months, 12 months or maybe 18 months. I am approaching 36 months but have never been cancer free. My CT scan is coming up in June. My CA125 is in the 200’s. I will try to answer questions if you have them. It is hard to find people to talk to since survival rate is low. There is a new treatment just out and is FDA approved. Lifyorli is new drug. Abraxane can be used with it I think. My oncologist has been wonderful trying whatever is available and always looking ahead for new treatments. You have to be aware of what is out there that can help you. Side effects and success are different for each person. I feel very fortunate to still be here

Oh Gayle, you have certainly been going through the wringer! I am so sorry to hear all of this for you. I guess so far I have been extremely lucky, especially since I was not diagnosed until I was already 70. I don’t have any kids or husband, but my dad is still here and extremely healthy at 99 years old so I got a stick around and keep fighting to be here for him. I’m not sure what I would do in your position. I hope you are not in any pain or having any major symptoms, but I can’t imagine what you must be going through. 😢

Luckily no pain or nausea. I am 75 so have lived a good life. My dad died of bone cancer over 30 years ago. Once diagnosed he died in one month. My mom lived to be 104. She died 5 years ago after a stroke (lived 6 weeks after stroke) No cancer. I was told she had aneurysms around her heart so we had hospice for a few weeks. I know of 3 women that have died with peritoneal cancer since I got mine. I have one friend left but hers has recently come back. We are treated at same clinic. In Feb she showed no cancer now in April I think in her liver. She has ascites ( fluid buildup) She is 84 but was diagnosed about a year and a half ago. Again back on Taxol, Avastin and now Keytruda. Hopefully can get it under control. Everyone is different as to how they do with these drugs.