update: Well after a pretty horrible month of... - My Ovacome

My Ovacome

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update

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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!

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29 Replies
HogwartsDK profile image
HogwartsDK

Hey Jeanette!

So happy that you got to see the twins! Sorry you are having a rough time with the Caelyx, hopefully it's doing it's job!

Take care and good luck with the infusion!

Dx

in reply toHogwartsDK

Thanks D, so far so good, although I was ok till the 5th day, so see how it goes. xx

Janet235 profile image
Janet235

So glad you ticked the grandsons box! 👶🏻 👶🏻

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?

Let us know what happens after the next round...

All the best Janet xx🌈

in reply toJanet235

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,

Cropcrop profile image
Cropcrop

Hi Jeanette, you must be so happy to have seen your grandsons, what a treat for you and you also must be happy with the drop in your CA125.

Good luck tomorrow with the caelyx I hope the side effects aren’t too arduous for you and that it does what it’s supposed to do for you.

Big hugs and love ❤️Xx Jane

in reply toCropcrop

thanks Jane, just hope side effects are kept to a minimum this time round xx

antheamary profile image
antheamary

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.

I am now waiting to go on a trial at RM.

I hope the caelyx works for you.

in reply toantheamary

Thanks Anthea, I hope it works too. xx

Biscuitqueen profile image
Biscuitqueen in reply toantheamary

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

in reply toBiscuitqueen

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

Solange profile image
Solange

Good luck for your next infusion. Hope you don't feel too poorly this time. So pleased you saw your precious twin grandsons. Love, Solange 😊

in reply toSolange

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

Katsmum profile image
Katsmum

Hi Jeanette

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

Jane

in reply toKatsmum

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

Maxjor profile image
Maxjor

Hi Jeannette,

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

in reply toMaxjor

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

Lily-Anne profile image
Lily-Anne

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.

Hope it goes well today

LA xx

in reply toLily-Anne

Thanks LA, yes I hope it keeps working, I would hate to go through all this and not get a good result. Hope yours works for you. xx

January-2016-UK profile image
January-2016-UK

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.

Hope your anti-sickness stuff works well.

in reply toJanuary-2016-UK

Thanks, only time will tell if it works or not, fingers crossed it does, and not too many side effects this time round!! xxx

JanePW1965 profile image
JanePW1965

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

in reply toJanePW1965

Jane, your mum was stable for 18 months, wow, something to maybe look forward too. xx

JanePW1965 profile image
JanePW1965 in reply to

Yes, fingers crossed Jeanette. It was so lovely for mum to have some normality. Hope you are doing OK. Jane X

Bet the grandsons gave you quite a lift, hope your treatment went well

in reply to

Thanks Suzuki, it was wonderful seeing the twins, they had grown so much since I last saw them. xx

SarahsJourney profile image
SarahsJourney

❤️ Stable scans & a reduced CA125 sounds good!

Wonderful news re grandsons. So happy for you! xxx

in reply toSarahsJourney

Thanks Sarah, hope it keeps that way xx

Jessica-DianeB profile image
Jessica-DianeB

You've been through a lot Jeanette, I do hope the reduced dose is more tolerable xx

antheamary profile image
antheamary

Hi am at Rm on monday to find out which trial i am starting. I will let you know.

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