pain with Caelyx

Hello Ladies,

This is my 2nd time with Carbo/Caelyx, 6 months completed March '15 with very few side effects. I restarted in May of this year as one year without treatment allowed one site of the cancer to grow and a 4th site to develop. For the first 2 months I just had the usual post-chemo feelings of nausea and wretchedness then after month 3 I developed this awful pain in my right buttock reverberating down right leg. At first they thought it was a UTI and was given anti-biotics. Further urine test showed no UTI but pain continued. Oncologist just said Caelyx can cause muscle pain.

It disappeared a few days before 4th treatment but 3 days post chemo I had strong stomach pains as well as usual post chemo problems. The pain moved round from my stomach to the buttock/leg after a week and by this time I had moved up from Paracetamol to Co-Codamol plus hypnotic at night. After a couple of weeks the pain is now anywhere in abdominal cavity/buttock and in desperation I sometimes take Tramadol as well.

I find it hard to believe this is just caused by Caelyx. I'm due for my 5th treatment but the pain is not subsiding.

Has anyone else experienced this?


11 Replies

  • HI Veronique, did you have surgery, by any chance was the tumour attached to the sciatic nerve, this is what happened to me? I have pain on left hand side, on physio at the moment, xrays showed bone loss so had dexa scan and awaiting results on this. The physio is helping to a point but not sure if I will have to get pain management as in steroid injection. I imagine you have had 125 checked while on treatment so the onc is happy enough. If I were you and he is doing nothing about it go to your gp ask for hip and back xray and dexa scan and mri. My mri was negative so showed inflamation only in that area. Hope this helps a bit.

  • Thanks Suzuki,

    Found out today from CT scan results that Carbo/Caelyx hasn't worked 2nd tie around and it's the spread of the cancer that is causing the pain. She's given me Morphine and a very difficult decision to make.


  • Hi Veronique I had carbo/caelyx for my 3rd round finishing April 15. The pain I experienced was chest severe angina type pain, I used GTN spray and some other meds the onc gave me, I also saw cardiologist who prescribed beta blockers . The pain has since disappeared so I am convinced it was chemo related. I am on watch and wait due scan 14th Sept. They reduced the dose for the last 3 doses. I hope this helps and you get some better pain management. Love Bridie

  • Hi Bridie,

    Found out today Carbo/Caelyx hasn't worked 2nd time around and pain is due to the cancer spreading. She's given me Morphine.


  • I've had two doses and nothing like this yet, just severe mouth sores, frequent pooling, rashes under breaths and one armpit and sore hands! Maybe I'll get the pains later. I hope you find something to relieve it x

  • Hi Lesley,

    Found out today that Carbo/Caelyx, 2nd time around, hasn't worked. Pain is due to the cancer spreading so hopefully you wont get it.


  • Hi Veronique, just wanted to say that the Caelyx didn't work for me either so they stopped mine after three. My abdomen OC is stable but I developed a large tumour in my chest abutting my aorta and unfortunately it didn't touch this at all. I've asked to have Gemcitabine again as I only had two on my second line of chemo and did really well on two. This will be my sixth line and I am praying it will work. Hope you manage to find something too. Caring hugs Gilly

  • Hello Gilly,

    One of the 2 options they've now offered me is Gemcitabine but with only 15-20% of success (this may be tailored to my particular case). The other is Cisplatin with oral Etoposide but it sounds dreadful - 3 weekly sessions of iv chemo which apparently makes you lose your hair, very very sick plus plus. I have to decide whether to just let it take its course - very hard. Good luck with yours. I'd really like to know how you get on. V

  • Hello Gilly,

    Just wanted to let you know that I've spoken to my own consultant,. Royal Marsden and Cancer Research and none of them seem to know about the test you had.

    Don't worry if you prefer me not to phone but could you please tell me how you heard of the test, where you had it and if you had to go through any particular medical referer please? My consultant said she would be happy for me to have it (privately) if she knew where to apply.

    You'd think one of the above would know about it!


  • So sorry you got this news, its not nice I am sure, but hopefully your oncologist will have another drug in mind. I read through your words and I gather you are not happy, Sending you a big virtual hug.

  • Thanks Suzuki

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