I've had a quick look through the forum and have found some members who also have this diagnosis. Farmerfroll found out they had PCC a few months ago and EAH was diagnosed last year. Two members, Ticker and fox123 , have been living with peritoneal cancer for the last five years. All these members have made posts on the forum within the last 3 - 5 months and now that I've mentioned them in this post, they will hopefully stop by when they can to say hello and offer their support and advice.
I hope your treatment is going well so far Ellie1669 but if you have any questions or concerns you would like to discuss with one of our cancer nurses, you can do so on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very easy to talk to and will do all they can to support you at this time.
Hi, Ellie1669, I was diagnosed in February last year with PPC but because of waiting lists it was June before my chemo started. I had the same chemo as you and was offered a cold cap to try and keep my hair. I did wear the cold cap and after the first treatment I lost a little bit of hair where the cap hadn't fitted properly. After that I was given a smaller cap and I lost no hair but it did thin. I did feel very sick afterthe first session and was sick so stronger pills were prescribed and thereafter no sickness. I had 3 sessions of chemo then following a CT I had surgery. I had had a hysterectomy when younger at which time my ovaries were retained so, what remained of them were removed along with the omentum. I recovered quickly and resumed 3 further chemo sessions. These last 3 sessions I found more difficult, taking longer to recover and feeling very tired. Two sessions had to be postponed due to blood count which meant my CT didn't happen until after Christmas whereas if everything had gone to schedule I would have had my results before Christmas. In January I was told the cancer was in remission and I would now have 3-monthly checkups. My last checkup showed the CA125 markers had doubled in the 3 months but were only 29. The oncologist said though he wasn‘t worried about this level I should have a CT. I get the results next week.
I hope this information isn’t too much and if you have any other questions please ask.
I got diagnosed stage 1 - 1c ovarian cancer in 2019. Had total hysterectomy and omentum removed aswell as pelvic lymph nodes. Was doing fine with regular checks up and then May hand my routine appointment and my CA125 was 88. Got told to go have CT scan and then got the diagnosis again. PPC but it's classed as recurrence ovarian cancer. Absolutely gutted I was. So now it's 6 rounds of chemo and see if it's worked.
Ive just had round 2 but not handling the sickness well and the tiredness.
May ask what they gave you that was strong for nausea?
My diagnosis was Stage 3c PPC. II was on Metoclopramide 10mg tablets for sickness and when they weren’t enough was prescribed Cyclizine Hydrochloride 50mg 1x3 as required. I also found during the first 2 sessions my joints ached. Hope you get something prescribed for your nausea that works as it is horrible feeling sick all the time.
Hi Ellie1669, Hope you have now been given something else to help with your sickness. . In September at my 3-monthly checkup my CA125 count was up to 66, more than double 3 months earlier. I have had another CT and this week a blood test. I see the Oncologist next Tuesday for the results. I have been having quite a bit of abdominal pain and all this us making me think that the cancer is back again. I am trying not to dwell on it but the time seems to be dragging waiting for the results. Sorry I haven’t written back to you before now. We have been catching up on holidays we had to postpone last year and go on a couple of others that were booked for this year. It was nice to get away on holiday again. Have you now finished your chemo sessions, and how are you?
Hi EAH Glad that you went on holidays. I was so looking forward to booking something this month, but after 6 rounds of chemo, the tumour has shrunk slightly but they found a small nodule between my abdomen and colon (am annoyed why it wasn't picked up earlier) so I've asked for surgery to remove the tumours. Annoyingly I had to insist on it. So seeing 2 surgeons this month and hopefully they'll operate beginning December. Still recovering from chemo though. I'm sorry to hear your CA125 is up, fingers crossed for you. Keep me updated on your CT results and what they say. I'll shall be thinking of you. X
Sorry to hear that a nodule had now been found but glad to hear the tumour has shrunk with the chemo. Hope all goes well with your surgery, assume it will only be one op? I will let you know how it goes next week. Hope it isn’t too long before you recover from your chemo. I can’t remember how long it took me to feel “normal” again after my chemo. Will be thinking of you too as you go to see the surgeons and have your surgery. Please let me know how things go. xx
Just realised I haven’t replied to you, sorry. My CA125 markers were 69 so had another CT which is all clear. Oncologist said if CT is clear they don’t bother too much about the markers. I assume unless they shoot up. See oncologist again in February. How are you?
