Caelyx/carbo: Good morning all. I am about to... - My Ovacome

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Caelyx/carbo

gina profile image
gina
17 Replies

Good morning all.

I am about to start my 5th line of chemo, this time Caelyx and carbo . Are there any tips about this

combination.I know the hands and feet can get sore so I will stock up on the udder cream.

But what happens to the hair? I managed to keep my hair when on my last line of weekly taxol

by using the cold cap it has not been mentioned this time.

its a lovely sunny day here in Sussex I hope you all enjoy the weekend x

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gina profile image
gina
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17 Replies
rjhs profile image
rjhs

Hi Gina, I had C and C for 2nd line and found it much better than carbo/taxol. It is a four weekly infusion which seems to be so much better for recovery and 'normal life.' I did not lose my hair altho it went a little dry and only had a slight hand foot problem. TBH I found that good old Sudacream seem to help more than udder cream certainly with the itching. The downside is that is really knocks blood counts for six and I had an initial reduction of 20% and two deferrals. I know some ladies on the forum have had a far rougher time with Caelyx but I was pleasantly surprised after the carbol/taxol experience. Best of luck with it, Rita

gina profile image
gina in reply torjhs

Thank you Rita.

Lovis profile image
Lovis

Hi Gina. You don't lose your hair with Caelyx normally. Keep yourself cool for the first week after every chemo; No very hot baths or roasting by the fire! You do feel rather nauseous but it's not too bad. Have a lovely weekend from Lovis in sunny Suffolk. x

gina profile image
gina in reply toLovis

Thank you Lovis that's good new about the hair.

My fourth line was carbo calyx did not lose my hair . I had six carbo and four calyx and it wasn't too bad and gave me 8 very good months much much easier than carob taxol It's beginning too cloud over in my part of Sussex. Good luck and have a great weekend. X Janis

gina profile image
gina

Thank you Janis x

Celtic6648 profile image
Celtic6648

I kept my hair with Caelyx had almost no side effects but did not get rid off the bloating . The scan showed stable still not near organs so hope your lucky

gina profile image
gina in reply toCeltic6648

Thank you . I hope it kicks it away for a while. I do wonder how many

more lines of chemo I will be able to have. This is my 5th .I live in hope as we all do that something new will come along.

francescahannah profile image
francescahannah

Hi Gina

I've had 3 lots of caelyx and carbo so i'm half way through. After the first session I had bad sickness and had to go into the Christie for 2 days to get it stabilised but since then I've been given different anti sickness drugs and although I feel very nauseous for a few days I've been ok. My hair is still there ok and my hands and feet have been fine but I use the udder cream every day too. I get pins and needles in my feet and calves for a few days but then it eases and i've been pretty well for 3 of the 4 Weeks. Good luck with yours.

Love francesca x

gina profile image
gina in reply tofrancescahannah

Thank you Francesca.

I am pleased to hear you are doing well on this regime now. Are you having scans ? My Prof has told me I will have 3 sessions and then have a CT and MRI to see if it is helping.

It would be nice to keep my hair , I have lost it twice in the past and feeling

rather attached to it at the moment.

Best wishes Georgiex

Hi Gina. My onc told me I'd lose 10% of my hair with caelyx & I'd say that's right. I'm in remission again now and no one has mentioned any lack of hair - so not a problem. Probably my worst reaction was ulcers & sore wisdom teeth & sensitive gums. I swilled my mouth regularly with salt water which I'm sure stopped some of the less determined ulcers before they took hold. I did feel nauseas but only for a couple of days. My hands changed colour (orangey/red). Body skin, in warmer areas (eg elastic lines) can turn darker - this is only a problem in warmer weather (I live in Australia) - apparently the caelyx comes thru in sweat.

About half way thru my 6 treatments, I had a bad month of side effects (including sore & peeling hands) & so my onc reduced the caelyx dose by just 5g - that helped a lot. I had occasional headaches, but not severe.

5th line - you're an inspiration. Enjoy the Sussex sunshine.

Best wishes Pauline

gina profile image
gina in reply to

Thank you Pauline for all the info . I will go back to using the Corsodyl tooth paste

this seemed to stop the ulcers the last time, awful taste though!

Glad you are in remission again. Georgie

goinggaga profile image
goinggaga

Had 5 of the 6 doses and apart from mild nausea for first 3-4 days been well. Hair thinning slightly bit not bad and dry skin. Did notice a rash afte fist dose but been ok since. Face like a beleasha beacon for the first day or 2 but putting that down to the steroids :)

Good luck with your treatment. This is my 3rd line, first 2 Carbo/Taxol so this seems easier. Have had no problems with bloods delaying treatment so hopefully won't for the last one! :)

Love Wendy xxx

gina profile image
gina

Thank you for response Wendy. Steroids always give me a hot red face for a couple of days. The only time I have had blood problems in the past was with the Gem/carbo

so I hope I will be like you and have no probs with this one. I wish you well with the last one.

Georgie x

AndreaW profile image
AndreaW

Hi Gina, I can't give you any tips I'm afraid as I've only had carbo/taxol and now on Avastin until September. But I was just wondering if you could answer a question for me? If this is your 5th line does it mean that you've been in remission 4 times and it has come back again so you are on chemo for the 5th time? How do they know what chemo to give you and what combination? I'm grade 4, diagnosed in April 2014, I had a scan 2 weeks ago as I was feeling under the weather and it was clear apart from a little tiny lymph node that hasn't changed since my last scan in September, so that was really good news. thanks in advance. Andrea x

gina profile image
gina in reply toAndreaW

Hi Andrea

I am pleased you are doing well. I have never had the word remission spoken to me but I have had some breaks in treatment . I have had Taxol/carbo after my surgery 6 years ago then Taxol/carbo again. Then Gem/carbo. Then weekly Taxol for 18 weeks with Avastin then 5 weeks of radiotherapy and have been on Avastin only for over a year...Phew! what a lot! My CA125 has been rising slowly for a few months so now the Avastin has been stopped and I will start the Caelyx/carbo in 2 weeks time.I do not know how they work out what comes next I can only say I am happy that there is always something else to try.......Thank goodness...... I hope I have the strength to carry on with it all and my poor little body can take it.

I wish you well Georgie x

AndreaW profile image
AndreaW

Thanks so much for your reply, I too have never been told I'm in remission but I prefer to call it that as it's easier for friends /family to get their heads round. I'm glad there's always something to go for in terms of treatment though. Thanks for explaining, there's always hope isn't there? Xx

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