Well after a pretty horrible month of side effects on Caelyx, my oncologist gave me an extra 4 weeks to recover properly, Today when I saw him, he recommends I continue on Caelyx at a 25 percent reduced dose and see how it goes. My scan showed stable, and ca125 was down from 2000 plus to 1800 so I was happy with that. I have come home armed with a mountain of anti sickness meds, (hope they work). Well 8 oclock tomorrow is my next infusion, fingers crossed all goes well.
Take care all teal warriers.
xxx Jeanette
Oh, and I did get to the UK to see my twin grandsons last week!
I also had caelyx for my second line chemo and made decision to continue another reduced dosage with trepidation.... but none beyond that
However I kind of knew it wasn't working for me... although I did not sickeness , only slight nausea I felt a lot weaker, despite eating fairly normallyand had much reduced strength and stamina. I lost weight along with muscle wastage. I woke up flushed each day and got the redness, peeling skin and soreness on my feet. My abdomen was tight and uncomfortable. I could hardly walk upstairs or indeed walk anywhere except slowly and with a walking stick. I was prescribed two mg. daily steroid
My CA never went down but instead started rising rapidly.. to the thousands and scan showed disease progression, so definitely did not work for me.??
Do any of these symptoms match yours ...or anyone else's ..I am interested to know?
Thanks Janet, I am fine at the moment, but early days, I did have a lot of nausea last time as well as couldn't swallow, mouth soars, and pealing skin on my fingers. so spent two sessions of 5 days each being fed intraveniously and re hidrated. hope not to have to go through that again. xxx,
I was stopped taking caelyx about 3 months ago. My ca125 levelled off but my scan showed progression of my lymph nodes. I had 3 infusions. My feet were peeling, i had anti sickness & ant acids tablets.
So sorry to hear you had a hard time on caelyx. Could I know what drug you might be having on the trial? My mum isn't responding to Caelyx as hoped and her CA is going up. Totally unsure of what the next option is
not on any trial, just caelyx! so far so good, but early days, this chemo takes time to work and side effects can happen anytime during the 4 weeks!! xxx Jeanette
Thanks Solange, loved seeing the grandsons, they had grown so much since last time I saw them. I hope side effects can be kept to a minimum this time round. xx
So glad you managed to get to see your grandsons, that must have been wonderful! But sorry you are having such a rotten time with the caelyx. I am due my last dose next week but had to have a delay on no5 because of low blood count but the serious fatigue wasn’t quite as bad this last one and the constipation wasn’t a problem which sort of surprised me so maybe the side effects you have been getting will not be as bad as the last time either. My feet peel and crack too making them painful but I have a couple of pairs of soft shoes ( not very stylish) but that helps. So here’s hoping it goes better for you too and sending love and hugs x
Thanks Jane, good to hear you are getting through your chemo with not too many problems, hope this reduced dosage will help me and also do the trick.xx
So sorry to hear about your rotten time with caelyx. Hope the anti nauseants work. Do you have EMEND in your list of anti-emetics? Its quite expensive but in the arsenal at Memorial Sloan in New York. They can infuse it and there is also a pill. Hoping that's a possibility for you to help or that a 25% reduced dosage does the trick! Good luck. ox
Hi, no I have not been offered EMEND. perhaps it.s not available in Spain, the pain killers and antisickness I have I hope will get me through this time xx
I'm on a reduced dose of Carbo, I think it's great that they are more flexible these days, so you can have some treatment rather than all or nothing as it was before.
You must be so pleased you were able to see your grandsons, before starting again. As Lily-Anne says, it's a good thing that reduced doses are now possible, rather than the all or nothing approach.
Hi Jeanette. Mum had 2nd line Caelyx and had really sore and cracking hands and sore feet and other soreness after the third dose. The Onc reduced it by 20% and things improved. She was stable for around 18 months after that then the beast woke up again. She's just had Carbo/Taxol recently and is pretty steady at the moment. Jane XX
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