Sick, sore and sorry

[Calluv]

I just started treatment on the 24th for , I’m not sure if it’s still the first recurrence as the treatment for it was 4 lots of carboplatin and I got down to CA125 of 30 but couldn’t finish carboplatin as I was reacting badly and I’m now platinum resistant, or a 2nd recurrence. That was the end of last year. I was hoping for a trial but could not qualify because it turned out I was technically refractory not resistant and not enough measurable disease ( horrible that). So my normal oncologist wanted me to start treatment again as my count was going up and not wait longer than a month to start so as to get ahead of it, he said. When I started the first round of a scheduled 4 of Caelyx, I was 244. I have been sick, sore and sorry ever since. Today is the first day I have felt human and that’s not the greatest. Still so tired, cramps like labour pains and bouts on the loo for 4 or 5 goes at a time. Sore stomach, nausea and aches and pains. I’ve got 2 weeks till next treatment and I’m dreading it. My bloods were very good when I started but I have not felt like taking the supplements I take that help deal with the bad effects of chemo so I’m even more worried, although I should be able to start them up tomorrow hopefully.

Do others have the bad effects from Caelyx, Keith, my oncologist said he has had woman on it for maintenance for a couple of years. I can’t see how.

I’ve heard nothing about what the hospital will do as regards treatment but I’m in Australia and I go to a private hospital, so it could be all different.

I hope you are all doing as well as can be expected under these trying times. It certainly does not help to feel so stressed by the virus and all the negativity it brings

Cheers

Judy

[Hidden]

Hello sorry to hear you are suffering so badly. I had 6 cycles of Caelyx and carbo and compared to taxol I found it very easy, my only real side effect was fatigue. It reduced my Ca125 Quite a bit but not in normal range so they have put me on Niraparib which is a parp tablet which I am also finding easy to take.

You mention that you take supplements normally, could they be interacting negatively?

I hope you can soon find a treatment that suits you and gives you the good quality of life that you deserve. Good luck 😉

[Calluv in reply to Hidden]

Keith knows and has no problem with them. They were fine with the first line carbo/taxes and my CA 125 went down real fast. I was 88, 45,28,18 10 and stay under 9 for 2 1/2 years, then it started to creep up and a laparoscopy at 75 showed sand like disease. It’s still like that but this treatment and stress are making me feel sicker than the disease. It’s driving me crazy, especially now with all this fear and being deemed vulnerable.

[Hidden]

Hi Judy. I can't talk about supplements - never been one to take them. But I did find Caelyx hard going. My side-effects were so bad that my onc reduced the amount of the dose by 10% after the 2nd dose. Gave me a good remission though.

The women who've been on Caelyx for 2 years as maintenance are almost certainly on a reduced dose. Best wishes. Pauline

[Calluv in reply to Hidden]

Thanks for your info, I’m planning on asking to have the dose reduced even if it means more times. Glad to know it gave a good result❤️

[Madmolly]

For abdominal pain I was given hyoscine butylbrom I think people with IBS are given it (irritable bowel syndrome) and I found this helped. I live in Scotland but you should be able to get something similar. Sorry you are going through such a bad tme

[Calluv in reply to Madmolly]

Thanks for your reply, I’m starting to feel better now and I feel guilty complaining because of the state of the world

[delia2]

I just finished six carbo caelyx. The side effects may be different. I did have six bad days every time but followed by three good weeks except for low platelets. Are you taking anti-nausea meds? And Imodium for diarrhea? Or maybe a prescription version to calm stomach cramps? Good luck with it!

[Calluv in reply to delia2]

Thanks for your reply