hi all , I have had lots of chemo since diagnosis and ultra radical debulking op 4 years ago but now have few options left .
I was just started on Caelyx every 4 weeks . Unfortunately , I had incredible pain in my back a few days after the first treatment . My Onc thinks it may be lysis of the tumours in that area !
is anyone on this course of treatment plus has anyone had a similar response . I ended up in hospital for 4 days and them home with painkillers . I am improving and hoping this is a sign that the Caelyx is effective !
any positive comments ???
sending prayers and love to all .
🙏🙏❤️
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Lookingahead
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That is really interesting Lookingahead I am on round 2 of carbo Caelyx and took a bad pain in my back about 10 days post round 2 Onc helpline said GP assessment who said it was muscular and to use simple pain relief My muscles did feel as if they were in spasm after that I am also improving Next scan end of Dec I would love if it was tumour lysis! But I do seem to have had more muscular symptoms Did they do any investigations for you in hospital?
Hi, I have never heard of tumour lysis before. I too am on Caelyx but also with carboplatin. I noticed muscles aching actually. For example the first cycle I bent awkwardly in the bathroom and felt like I’d cricked my back for about three days. Then, towards the end of the cycle I had done some stretches on my yoga mat followed by a supposedly relaxing corpse type pose, only to find back pain when I got up which I had attributed to a draft but odd nonetheless. So that lasted a day or so. I think I took paracetamol. Let’s see if anything happens this cycle….. I hope you feel better soon. Always interesting too to meet someone else who has had the ultra radical surgery. I needed that as my first op indicated as such. So had chemo then a v large second surgery. Fortunately with the same surgeon who knew all my insides very well!!!! A bizarre feeling. Best wishes.
Thank you to both Marie and Rosado . That is rather reassuring that you both had back pain after Caelyx . I saw my consultant today so she could assess if I can have the 2nd round of Caelyx and it is going ahead on Tuesday ( phew) . Apparently , my lymph nodes near my spine have swollen and this may be causing pain .x x x x 🙏
Hi, I have a recurrence of ovarian cancer after 5 years and just had second cycle of Caelyx and Carboplatin and have had back ache during the first cycle and it is worse with second. Seems to be more muscular but any fast movement feels like my discs are about to slip. First week is the worst and eases after.
I did not have any back pain with Carboplatin only on first time around.
My ALT has increased just above normal after 1st cycle (the good old google doctor says ALT shows how liver is functioning - if too high can indicate liver disease) guess my liver is just working harder because of the chemo but my also be playing a part in the back aches.
My CA125 has decreased (although did not really go up that high to start with 6, 14, 27, 38 (mid between 1st & 2nd Cycle), 26 day before 2nd.0 - praying this is a good sign that it is working.
interesting seeing your ca125 figures. I asked re mine when the oncologist told me I needed to restart chemo and it was 34 / so I was surprised to be restarting. When I had chemo last year for first reoccurrence it was 150 and had been doubling. I decided not to ask re my figures and just wait for the scan results after cycle 4.
I was on Caelyx many years ago. I didn't have that side effect but had plenty others! I was on it 4 weekly along with cisplatin. It was a most unpleasant chemo, but I got good results, complete remission, and have been well since then.Best wishes.
PS I must admit there was always some doubt with my consultants if I had peritoneal/ovarian cancer or endometrial cancer, and as it has responded so well to ibuprofen as anticancer treatment I suspect I had endometrial cancer with small primary cancer and massive secondaries in abdomen. Nonetheless Caelyx was a lifesaver
I have widespread extensive recurrent disease in my abdomen I know outcomes very different for everyone and this will not necessarily be me but it does give me a lift to hear of someone with widespread secondaries in their abdomen doing well and with Caelyx too A little lift helps get from one day to the next Thank you
Hi there, I had Caelyx several years ago and had an instant reaction in my back...unbearable pain, didn'didn't matter if I was sitting or standing. They stopped the infusion then slowed it down to 3 hours instead of one hour and there was no pain. All my treatments after that were over 2 hours and there was no pain.
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