Hi. I have Primary Peritoneal Cancer

Hi

I was first diagnosed in 2017 and had 6 rounds of chemo and surgery. I was very poorly throughout and had lots of complications. 

After a year things were stable and I returned to work.

Nov 20 it returned. My ca125 had shot up and scans confirmed things.

I had more chemo and another surgery to remove the cancer and my spleen. It was a difficult surgery and I have already been advised the surgeon would be very reluctant to operate again. More chemo and again things started to settle. My ca125 dropped to 36. Last chemo was 1st Feb 2022

Now my ca125 has risen again. It was 220 and last month 288. I had more bloods done last week and if the markers continue to rise then I will have another ct scan. The last one showed a small growth..they were not sure whether it was cancer. 

To say I'm worried is an understatement but to add to my worry I am suffering with dreadful side effects to the chemo maintenance tablets I  àm taking.

I can be just nauseous some days which is managed with meds but then with no warning I can have a full day of sickness which knocks me about for 48 hours. I work 2 days a week and it has started to affect my job. I am a registrar so I have a full day of face to face appointments registering legal documents and just cannot afford to be ill.

I spoke to my nurse today who is going to contact my oncologist. ( i have regular phone constultations) to advice me on the best steps.

I'm really scared of having to make the decision of staying on them, leaving work, losing money and have not a great quality of life versus giving them up and losing my life sooner. Its a decision that nobody should have to make and its causing me enormous sadness.

I am by nature a very 'sicky' person... pregnancy, travel sickness, tablets on an empty stomach , so its no surprise i suffer. The general list of things to alleviate it just don't work for me. 

I ended up with a syringe driver the first diagnosis and that helped. I dont think I'm as bad as that this time but still bad enough to disrupt my day and my sanity at times.

I have a great support team of husband, son, family and friends who are there for me but I'm finding things very tough. 

Even if no one reads this, it has helped to type it all down.

 

Thanks and I wish everyone on here well wishes.

  • Hi Tillberry,

    Welcome to Cancer Chat. I'm sorry to hear of everything you've been through and that things are tough at the moment. It's good that you've been in touch with your nurse and that you are due to hear back from the specialist. See what happens and what they say - and of course be sure to discuss your concerns and dilemma with them, to see if there is a workable solution that also improves the side effects.

    Glad to hear that you have good support around you - this is important so keep speaking to others where you can. This forum is also always a safe space to write things down and reach out to others who understand, so I hope it can be a support to you - we're always here.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator