Diagnosed with advanced metastatic adenocarcinoma of the peritoneum

Hi Sue, sorry to hear your news. I share your shock and disbelief - it felt like a bomb had gone off in our lives when I was diagnosed with Stage 4 Peritoneal cancer last November. "Treatable but not curable" and so the chemotherapy commenced.

A different kind of Peritoneal cancer and so the chemotherapy drugs I was given for 6 cycles were different to yours. Keep positive - the chemo reduced the cancer sites.

I was also told I would lose all of my hair but I opted to try the "Cold capping" treatment at the same time as the chemo sessions. It might not save your hair but claims to allow hair to grow back stronger and more quickly. In the event , my hair thinned considerably (I lost about half)  but not enough to warrant wearing the wig I had ready! Cold capping is just that- cold! So take warm layers and ask for a heated pad and lots of cups of tea! You must start at your first chemo session.

Good luck with your treatment - and your hair.

xxx

Hi. I was diagnosed with Stage 3c high grade Peritoneal cancer in January, they originally thought it was ovarian , but after surgery it was found to be of Primary peritoneal origin . I had to have four rounds of Paclitaxel and Carboplatin before debulking surgery, once I’d recovered from surgery I then had another three lots of chemo. Without treatment I would have had less than a year . I was given the all clear in September and I am now taking Olaparib as a maintenance chemo,  as I am also BRCA 2 positive. 

That is wonderful news, Karen. Well done.

As my cancer was stage 4b,  I was told debulking surgery was not an option as it had spread to too many places eg lymph glands, pleural cavity and a lesion in the liver etc

My 6 sessions of chemotherapy were carboplatin, pacliotaxel and bevacizumab. Finished these in March this year.

CT scans showed a good response with lots of reductions in the sites.

My Maintenance Treatments are a bevacizumab infusion every 3 weeks ( 16 sessions  - have done 10 now) and olaparib tablets ( 2 in the morning and 2 in the evening - total 600mg) every day.

The Olaparib can cause nausea sometimes; I am taking it after meals and eating more carbohydrates to counter this. I also get tired/fatigued!

Are you experiencing any side effects?

Good luck.

xx

Hi Putter

Like you, I've been told surgery is not an option. I'm pleased to read that your chemo has had a good effect on the cancer. Let's just hope that mine does similar. I'm really not ready to finish my story any time soon! 

CH x

Hi Cry Havoc

Your online name describes how I felt when I was told I had cancer last October 2023 -  like a bomb had hit!

When did you find out?  What stage is your peritoneal cancer?  I did not have any symptoms so it was a good job I fell down some stairs at home and broke my collarbone so the CT scan showed the secondary cancers!

What chemo are you on?   I hope it all goes well for you.

Well,  none of us know what the future holds but, like you, I intend to "hang on in there" - I am not ready to finish my story any time soon either (Even  though I am retired and have been blessed with a good life - so far!)

Good luck! xxx

Hi Sue. Like you.my peritoneal cancer came undetected and it's spread to the lining of my lungs. I had 6 bouts of chemo (like putter below), then a break and then tried chemo tablets which didn't work as gave me high BP.. I'm now on different chemo (number 3) but as my oncologist said where.theres options there's hope. All they can do is try and keep the cancer at bay so it isn't going away..I just live every day without planning too much in future.

By the way, my first round of chemo saw me lose my hair in the 1st week which was devastating but with a good wig I got over it. Now my hairs growing back and I've had a few issues with health but I manage. Tiredness is the biggest issue. 

Good luck

Jules

Hi Putter.

I was diagnosed in early September but didn't get told it was at stage 4 until after I had my biopsy done at the end of that month.

I had been getting some abdominal discomfort since summer 2023 which I likened to a stitch but the pain wasn't going away. My GP fobbed me off initially but I went back and saw a different GP who initially referred me to a gynae consultant. I had a CT scan of my pelvic area which showed what they thought was diverticulitis so I got referred to a colorectal consultant. He sent me for a colonoscopy that they couldn't do due to me hanging off the ceiling so I had a CT colonoscopy which was when they discovered the peritoneal cancer.

The drugs they're giving me are Irinotecan with 5FU and Folinic Acid. My cancer nurse had told me that I can expect my hair to thin out a bit but she's never seen anyone completely lose their hair on these particular drugs. We'll see! 

Everything kicks off on 28th October.

Well done for persevering and getting the tests done!

At least you/they now know what they are dealing with.

Good luck on the 28th. Wonderful what Oncologists can do these days.

xxx

Hi Jules

It is all very difficult isn't it?

I am "treatable but not curable" and I like what your Oncologist said about options and hope!

I am also trying to "keep the cancer at bay" with 3 weekly infusions of bevacizumab and daily Oliparib tablets. That and the after effects of 6 chemo sessions means that fatigue and some nausea at times ( when I do too much) are unwelcome side effects. 

Have realised that "doing too much" for me can include mental and emotional stuff, not just physical! 

By late afternoon, I have "run out of spoons" and need a power nap!

See the Spoon Theory on how to deal with Fatigue! You start each day with 12 spoons; each task you do eg dressing, washing/hair, shopping, housework, computer work etc takes one spoon away. You will have to "ration" your spoons if you hope to do anything in the evening!

Good luck everyone - sending you all the entire cutlery drawer!

xxx

xxx

Do you know that's one of the first sensible and usable bits of advice I've had so far and I'm going to try it from tomorrow. Even having phone conversations can physically and mentally drain me...I have to have a very slow day and do virtually nothing if I want an evening out. I too have nana naps to help me through a day.

Best of luck