Early on in treatment for primary peritoneal cancer

[Jayniiee]

Hi everyone

Thank you for all your lovely posts. They are a huge help in getting back on the right emotional track.

My question is what are people's experience of treatment and whether it is having an effect. I've two cycles paclitaxel and carboplatin for stage 3c. (they are going to do 3 to 4 cycles with a view to rescanning to see if then cytoreduction a possibility). The first cycle I felt had a positive effect with a definite change in signs and symptoms but with this second cycle I had on the 22nd Oct I feel like there's been no change or the tumour may be growing. (not sure if that is the negative gremlins causing havoc with my brain or if that is actually happening? ). Do people feel worse and then get nice surprises? Feeling confused!

[Heart12345]

Hi Jayniiee I had my treatment at the beginning of this year and definitely after first one I felt much better. The next few I was convinced it probably wasn’t working as how I felt hadn’t changed much but when I got my ca125 results it obviously had. Remember the chemo side effects are going to have an effect on your body and can be accumulative as it does it’s job. So don’t worry just imagine the chemo bashing those cancer cells 👍🤗

[Jayniiee in reply to Heart12345]

Thank you heart! That's really good to hear 😊looking forward to getting first ca125 results. And in the meantime getting out and enjoying the great outdoors! sending best wishes 😊

[Tillymint61]

This can be the case. I have started 2nd line chemo only on carboplatin due to complications with Paxotaxol and Avastin. I have had 3 treatments this cycle so far and have generally been ok after 1st week of treatment..Had convinced myself nothing much was happening and was pleasantly surprised after 3 treatments and scan things are reducing so next three treatments will go ahead. As we don't ever get to see a lump that's there, than gone after an operation or you see it getting smaller it is very hard to imagine the positive stuff that's going on inside our abdomen with treatment. The confusion over 'If I feel ok does that mean it's not doing anything?' Against not being able to work out "do I feel so ill because of the cancer or the treatment?" I really work hard on positive visualisation of that chemo going in and swishing around doing it's job, coating what it needs to (thats when I feel yucky) then when I start feeling better, about 7days I still visualise it settled in my system working away. Hope I don't sound too nutty but it gets me through. !!I was diagnosed Sept 2019 with S4C high grade primary peritoneal.

[Jayniiee in reply to Tillymint61]

Thank you Tilly, you've just made my day! I was diagnosed in August after months of symptoms which I ignored and put off going to gp because I thought they were just musculoskeletal. I'd convinced myself this past week that it's too late for me. Feel much more positive now.

You don't sound nutty at all! ..until my bit of a wobble, not only have i been visualising attacking it with arrows, I've been imagining a microscopic me with a tank on my back spraying with a neutralising solution every bad cell i come across.. Yesterday when i was gardening I was imagining me pulling out weeds out of my body... It's all good fun! Actually, I think it might be me who's nuts! 🤪 😂

[Cumbrianlass5 in reply to Jayniiee]

I think we all go a bit nutty with this wretched disease. That is what keeps us sane!!!! After chemo I used to get awful pain for a few days, like rabied animals tearing inside my body. I used to visualise them tearing at the cancer. I am still here and still fighting so maybe they were!! Ha ha. All best wishes and prayers x

[Tillymint61 in reply to Jayniiee]

Brilliant! My first chemo I found myself having a word with the iv bag before the nurse connected me up telling it what I was expecting it do😅😅whatever gets us through it!! Xx

[Jayniiee in reply to Tillymint61]

Love this! I'm gonna try that next time 😊

[Jacky5]

I have Primary peritoneal cancer too.Had symptoms like yours for maybe 4 months then I found a lump in my pelvis.

I was told op not possible and started chemo.

I was in a very dark place and convinced there was little hope .

However I gradually started to feel better.

After the 2nd treatment the lump was smaller and by third I couldn't feel it at all.

I was rescanned, had surgery after all and then the remaining 3 chemos.

But like Cumbrian lass I too had some pretty bad abdo pains after the chemo....particularly after I'd had the surgery but I'm covinced it was the strong chemo doing its stuff.

That was 2 years ago and I'm now on a maintenance treatment and doing well.

Wishing you all the very best.

Liz x

[Tillymint61 in reply to Jacky5]

Thats good to hear.xx

[purfekt10]

I had primary peritoneal carcinoma that was diagnosed in 2018. I had 4 rounds of carboplatin and taxol, then surgery, and finally four more rounds of chemo. I see my oncologist every six months and have the CA-125 test every 6-12 weeks.

[Jayniiee]

Thank you everyone. It is so good to hear all this. It's massively uplifting and I really appreciate your input.

Sending you all much love and hugs xx