My cancer was found on January 2023 during an emergency surgery for acute peritonitis, excessive scar tissue and severe pain. The CT scan showed ascites (small amount) and other organs with inflammation. I Had 6 major abdominal surgeries prior to this. Two nodules were found size 0.4 and 0.6 cm on the mesentery. Pathology revealed poorly differentiated aggressive gynecological cancer. My CA125 was 250. Before my first chemo My CA125 dropped to 40.0 and at chemo #2 it was 4.5. My CA125 since April 2023 has been at 4.0 except when Covid caused a false positive with a CA125 of 35. Three weeks after Covid it was back at 4.0 or 4.5.
I have had 7 CT scans and 2 PET/CT scans. No tumor or mass has ever been found. I was diagnosed with Primary Peritoneal Cancer. My 8th abdominal surgery was my debulking and staging surgery. There was no evidence of disease found. However I was told I was stage 3C.
I have questioned my oncologist and I can’t get a clear understanding of how I can be stage 3C. I always feel on the defensive when I ask about my cancer. The only cancer ever seen was the 2 tiny nodules that were sent to pathology. I don’t know how this could be. Primary Peritoneal Cancer is very aggressive and has a poor prognostic life expectancy I have been treated for this cancer for 2 years and 2 months. My insurance company has been billed close to $1,000,000 (yes a million). I sometimes feel like I am a cash cow to my Cancer Clinic. My doctor said my cancer was mysterious. All of my records have a diagnosis of Primary Peritoneal Cancer and Cancer of Unknown Primary. It seems that PPC always has CUP added to it according to medical reports googled.
I was told in August 2024 that I am in remission; cancer free. I am taking Lynparza and Avistan. Every month my cancer maintenance cost $57,000. With no cancer found my Lynparza and Avistan was changed from 1 to 2 years 2 months ago when I was so excited that I was almost done with treatment. The side effects are horrible and I don’t want to have this treatment any more. By the time my maintenance treatment ends I will have been treated for my curious case of Primary Peritoneal Cancer for 3 years. I’m 69 years old and I hope I outlast this treatment so I can be side effect free and living a better life.
Hi Dow
That's great that you're cancer free but I'm sorry to read that your maintenance treatment has horrible side effects and I can understand you looking forward to it's end.
I'm not a member of this group so hopefully others who are will pop along soon to share their experiences of side effects whilst on adjuvant treatment.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Update!
After writing the above post with great consideration I let my oncologist know today I no longer want Avistan infusions beginning immediately. She let me skip my 2/24 infusion and after feeling my health restored I knew I was ready to stop this part of my maintenance treatment. The original plan was to have 22 infusions. I had all of these. It was at this infusion I learned they were adding another year of treatment. I have made the decision to stop the infusions with confidence and no fear.
It has been a very cold year in Ohio. This week we are having our first warm weather. I want to look forward to travel, outdoor activities and selling our old house that is way too big for two people. I bought an electric tricycle last year and today I put the battery on charge. It was a lot of fun but last summer I was only able to use it one week out of three. Below is a picture of a lot of fun.
Diana
Hi Diana
You sound like you're making some big changes. My husband and I downsized 8 years ago to a 2 bedroom home which is easy to look after and only has a small garden.
We have a motorhome and like to spend big periods of time away, both in the UK and on the continent. You never know what's around the corner and, as my husband likes to say, "it's memories not assets that count".
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Big update
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Today I was on my feet all day and felt energy than I have felt in more than 2 years. I rode my trike 2 miles and did a bit of yard work. The whole day was fun! I even sang along to music and danced. It’s been almost 6 weeks since my last infusion.
On Avistan I didn’t have the energy to get dressed. I am so glad I made the decision to stop the infusions. I could not imagine continuing this treatment through this year and just existing in a zombie state.
Diana
Hi Diana
I really enjoy walking and trying to get out for an hour's walk every day around the village where we live.
We have a couple of electric bikes so take them away in motorhome with us so we have the option of walking and cycling.
Looking forward to the better weather so we can get out more.
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
