Caelyx

[Maggiemo19]

Oh my gosh girls, am suffering big time.

I had my 2nd cycle of caelyx about 2weeks ago and all was fine. The day before Christmas Eve I had a sore throat. Now when I eat it feels like a bad swelling on the right side of my throat but more unsettling is the sensation of heartburn/indigestion which I have never suffered with in my life. I have been sick a few times as I bring up wind which is painful. I had my latest ct scan done on Xmas eve and seeing my oncologist on 9th Jan.

Has anyone else suffered similar symptoms on caelyx or any other drug.

Love to all, maggie

[Jessica-DianeB]

This is exactly how I feel. 10 days post Caeylx. Along with pain, blurred vision and headache.

Wondering if it's a bug or the chemo?! I know there are no specific patterns to this drug. However I did have a week in and out of hospital at the same stage after my 1st dose.

You have my sympathy, it's horrid xxx

[Jessica-DianeB]

Interestingly I had my chemo on 2 weeks ago too and started with symptoms on Boxing Day!

[Janet235]

Some do well on this drug and others don't. It was my second line on its own earlier in the year - and I had to come off it after two sessions of which the second was a 25% reduced dose .. my problems were loss of weight, and muscle mass, General weakness, decreased energy and stamina, abdomen pain and soreness, peeling redness and soreness on soles of feet. Eventual pleural drainage needed due to breathlessness from pleural fluid around right lung.

Monitor, document and date all symptoms. I was able to write above because I had done this...

We all have different reactions and symptoms to the different chemo regimes...need to disicuss yours on your next appointment

Hope things subside and you can continue but don't be afraid to let the doc know if your body is telling you this is not right for you..

Janet x🌈

[Maggiemo19 in reply to Janet235]

Thanks Janet. Depending on scan results will determine if I continue with caelyx or not. Got feeling it’s not working as I now have peritoneal and have developed a large swelling in the area they told me the affected area was. Anyway will keep everything crossed for the 9th Jan and will keep you posted. Xxxx

[Janet235 in reply to Maggiemo19]

Are you at Christie's by any chance? I have a follow up appt on the 9 th also after a scan on the 3 rd... yes my scan after the caelyx treatment showed increase of disease.

[Maggiemo19 in reply to Janet235]

No Janet I am being treated at Birmingham Heartlands Hospital. I couldn’t ask for better care.

How long since you were first diagnosed Janet? Xx

[Janet235 in reply to Janet235]

June 2016, on ICON8B trial until Avastin failed me half way through, then caelyx 😬, just finished 18 weeks of taxol , scan next week hoping results match how well I feel at the mo...x

[Maggiemo19 in reply to Janet235]

Will keep everything crossed for you Janet xx

[Emalou71]

Hi, I had really bad heartburn on Caelyx for a reoccurrence, and was given omezrople to take twice a day which helped, I would also get shingles after day 8 and had to take acclovir for 7days and I also had the weird throat thing that made me feel as though something was stuck that feeling would go around day 13. I would then get just under two weeks of feeling normal. I found this regime hard but it did its job. I hope the scan reflects that it's working and you can get some meds to help with the horrid side effects xxxx

[Gilanros]

Hi Maggie, I’ve had 2 doses of Caelyx and feel horrid

I’ve had a slight sore back of mouth but my main problem is loss of appetite and nausea, I’ve lost about a stone and I’m feeling weak.

Dreading my next dose which is due on the 10th of Jan, but will speak to my CNS on Tuesday

Best wishes Gill

[Maggiemo19]

Ah thanks emalou. That sounds very similar to my symptoms but praying I don’t get shingles 😕. Xx

[Emalou71]

I hope you don't get them, I it was horrid but the meds worked quickly xx

[Maxjor]

I'm on carbo and doxil (your caelyx) and I was told prior to starting the heartburn would be bad if I didn't take preventative meds--here they're over the counter and I was taking Prilosec every morning (but was NOT working well--so added TUMs to the really bad days which were the ones right after treatment--but now going to try Nexium (more expensive but I hear it works really well). I had an "attack" one night where the pain in my esophagus just would not ease up but steady anti-heartburn meds seem to be the key. Hopefully your doctor can prescribe or recommend others that would help. Good luck!

[Maggiemo19 in reply to Maxjor]

Many thanks maxjor. I am at the point where I am afraid to eat as it’s getting hard to swallow and I know I will suffer badly after. I will head to the pharmacy today and stock up until I see my consultant. Xx

[Maggiemo19]

Hi girls, I saw my consultant on the 9th Jan and was told that at the moment things are stable. Best I could hope for after 2 doses of caelyx.

Had my third dose on the 11th and will be scanned again after my 4th dose. Other than still suffering with heartburn and tiredness I am feeling pretty good. Hope one day to return to my job as phlebotomist in hospital where I have my chemo 🙁. Xx