I was dignosed with primary peritoneal carcinoma about 4 months ago, stage 3 C. Paclitaxel and Carboplatin proved too much for me and I ended up in hospital. Just on Carboplatin now and have my 5th chemo on Monday. My tumour markers have come down. Is this good news?
Manetta
Hi, sorry to hear you were in hospital.have HGS 3c ovarian cancer, so different from your diagnosis. I had carbo on it own frontline treatment, it did shrink the tumour . Tumour markers coming down is positive. Good luck with your treatment. X
Hi Manetta
I was diagnosed with HGOC stage 3B a year ago. I had a week in hospital too after my first treatment. I reacted to paclitaxel and then caylex on a second date so was put on gemcitabine. Debulking, chemo and maintenance treatments didn’t leave me with NED unfortunately so I’m now starting six months hopefully of three weekly treatments of paclitaxel followed by a week off. I’ve have it over a 5-6 hour slow infusion and am given high steroids and antihistamines to help calm everything down. I’m coping well with it so far which is a big relief as I was originally told I couldn’t have it again after passing out on it! It’s my best option at this time. Too early to tell if it’s making a difference but I’m hopeful. Not too many options left for me going forward. Any reduction in cancer markers is good in my opinion. You weren’t able to cope with it before but you might if it was given as a lower dose spread over three weeks. It has been proven to be effective further down the line.
Good luck and hugs to you and everyone else dealing with this rubbish condition xxx
Hi Manetta, sorry to hear you couldn't cope with carbo/paclotaxill. Fortunately I coped with six rounds of it one dose every three weeks and my CA125 fell to 36. I'm now on maintenance Naraparib parp inhibitor which I take daily. My CA 125 has risen again over several months and is now 350. However a PET scan in November was clear. My oncologist said that it could be for any number of reasons for the rise and some people are more sensitive to it. She said that whatever is there it must be so small that it couldn't be picked up on the scan which is good news. I have another scan at the end of Feb so I hope it'll still be clear 🙏. Hope this helps and stay positive.
Thank you for getting in touch. So pleased to hear that your health has improved since diagnosis and you sound to be coping very well. I'm not really coping no matter what good news I hear and my mental health is suffering. Can't sleep, have no appetite and I always feel cold. Words to cheer me up please. Manetta
When I was first diagnosed I suffered with severe anxiety and saw a clinical psychologist. I'm not sure it helped but perhaps it would be useful for you to talk to someone if you haven't already done so. As for not sleeping ask for some sleeping tablets to help you. I suffer with insomnia caused by the PARP inhibitor and take a sleeping tablet when I get desperate to sleep. I really hope you'll start to feel better soon.
Thank you for your reply. I did mention my anxiety and not sleeping to the oncologist yesterday and she was very sympathetic. Wants me to get my last chemo over on Monday then if things haven't improved, to ask for help. Take care and keep going.
And you.
Hi Marietta
This is such a terrifying process isn't it? Like the other ladies that have replied to you I had a different cancer to you - stage 4 HGS Ovarian Cancer. We probably get different doses of the 2 drugs mixed with different other drugs. One would need to see your hospital charts to see what dose triggered the reaction, after what period of time and then tweak the dose down and increase the frequency as someone suggested OR if the oncologist says you have to try a different drug, that may be good news for your body and your cancer. This should not be one size fits all medicine. What I can take and what works for my cancer will differ from what you need for your genetic profile and for your cancer.
Just remember to adopt a healthy lifestyle and as hard as it is, try to have some fun. Laughter is the best medicine. Dwelling on which drug is best is your oncologist's problem. You could get another opinion if you think that would help. With my cancer I was always told the treatment would only provide temporary relief. My scan was NED for 6 mths after pacli/carbo for 6mths and then the cancer returned. I refused further treatment for obvious reasons and so far so good. The cancer has been stable and I feel well since it reappeared on a scan in March 2023.
Carboplatin bringing down your markers is very good news I don't have your type but have been on Carboplatin and found it to be tolerable I'm sorry you ended up in the hospital
hello there yes it’s very good new try and stay positive and I hope you get stronger every day
That is good news I been on carbaplatin for a while but last time I was 10mins of my session and had a reaction so the dose has been lowered good luck with your journey x
Hi Manetta
Yes it’s definitely good news that your tumour marker has come down. My diagnosis in 2022 is similar to yours, it’s either primary peritoneal or gynaecology origin stage 3 but treated like Ovarian cancer. I’m on Niraparib and the CA 125 has remained under 10 , all the best with your treatment and enjoy the good news X
Hi to all you lovely ladies who have replied to my posts. I had my last dose of Carboplatin yesterday and have been in bed most of the day feeling drained. Apparently the Oncologist says it's normal to feel this way. I have to see her in about 6 weeks' time with some up to date news on my condition so until then I am trying my best to be positive each day. Someone suggested sleeping tablets so I will take one tonight. Thank you for all your replies.
Take care,
Manetta
Update
Update on Vertex trial after 8 cycles (24 weeks)
Update on my mom and seeking advice
Update!
