So, my first date with Caelyx. I hope there's ... - My Ovacome

My Ovacome

17,715 members19,966 posts

So, my first date with Caelyx. I hope there's a second date on the cards...

Kryssy profile image
18 Replies

Here is one of my stupid ramblings girls to make you smile a little. Today was my first day with Caelyx, but I'm a past Carbo user. First my heart was scanned and the outcome is that it's strong and normal. I told the guy that at least I've got something working properly. Always a bonus.

Then the pre-Carbo and Carbo went in as per - no problem. The nurse then came with four ice packs inside gauze cases and strapped them to my wrists and ankles. Very eye catching, especially as I needed a pee and without boots shuffled to the loo looking like Mr Frosty. This was followed by this new miracle cure - orange squash. It's as cheap as chips but apparently does the job. The ice packs are because the orange squash makes our hands and feet go hot, nursey said. Mine didn't - probably the ice.

Then I was given all the nasties, including the orange pee, nausea (yeah thanks, hate that), sit in the shade all summer and cracked and dry skin, I remembered the cow cream advice and thought, "That'll do me, Tommy!".

So girls, if you bump into an Oompa Loompa who moos, it'll be me :-)

You've gotta laugh ain't ya. xxxxxxxxxxxxxxxxxxxxxxxxx big love to all of you xxxxxxxxxxxxxxxxx

Written by
Kryssy profile image
Kryssy
To view profiles and participate in discussions please or .
Read more about...
18 Replies
Yoshbosh profile image
Yoshbosh

I find hot orange squash makes my hands hot. Must be the boiling water I use 🤔😄

If only it were the miracle cure... <sighs and looks wistful>

Hope the next few days aren’t disastrous, and the orange squash is kind to you.

Vicki xxx

Kryssy profile image
Kryssy in reply to Yoshbosh

If it were as simple, none of us would have cancer. I have orange juice every morning but I guess it's not the same. It just made me laugh today. Yes, I am weird. I confess that when the echographie thingy was put onto sound and I could hear my heart squishing the beat, that made me giggle too. I only had one drink last night too. Must be sleep deprivation.... big love to you Vicki xxxxx

Ossett profile image
Ossett

Think of it as gin and orange it might go down better, lol

Hope your ok love.

Trish xx

Lily-Anne profile image
Lily-Anne

It’s good to see you keeping the fun in the treatment. I usually take lots of pictures but last time in my flurry or excitement that was actually fear I left my phone at home on charge. I had a lift to the hospital and so couldn’t even message Hubby. I remember my kindle which was stuffed in my handbag though.

There were a few people there with orange liquid. One told me she came every couple of weeks for a top up and was a ‘lifer’ funny enough there were two of us who were paying for our treatment. Wonder if we were the no hopers.

Flush that goo through your kidneys and try to eat well

Thinking of you tonight

LA xx

Kryssy profile image
Kryssy in reply to Lily-Anne

Thank you sweetie. I am drinking water every second I'm awake. I'll drown soon. Feel a bit sick but I did eat 8 gluten packed chocolate biscuits before bed. Piggy me. Itchy skin too. Woke me up now and then. See what the day brings.

How do you feel after the avastin? I am so angry that you have to pay for it. I had a small fortune pumped into me for months and it shouldn't be a lottery. If France gives it free then why not UK? We do have a health system here and although we have insurance too to pay for things over the standard health system cost, for people with disabilities or serious illnesses everything is free, even our transport to hospital. I know for sure that if I was in UK now I would be dead as I wouldn't have been bothered with at such a bad level on diagnosis. This is going to upset the staunch NHS supporters but it's not the medical staff at fault. They are working their arses off for peanuts. It's the whole structure of how the NHS is managed. As a good friend of a retired hospital manager, now living here, I know how she agrees that it's the system that needs a good shaking up, but no government will do that. Too scared to lose votes. Crazy.

That's my rant for today. Looking forward to our get together on the 18th. Can you choose venue and time? Going to pm you about another matter. Big love and hugs xxxxxxxxxxxxx

CallmeMum profile image
CallmeMum

Aww my babes ❤️❤️❤️😂😂😂❤️❤️❤️ That made me chuckle xxx

Kryssy profile image
Kryssy in reply to CallmeMum

That's the spirit xxxxxxxxx

Hi Kryssy . I hope Caelyx give you the good results I had , It can be hard but manageable you know we are here for any advice or encouragement you need .

Just keep moisturizing any good moisturizer will work. I did get blisters my oncologist gave me a scrip for steroid cream or go to your gp, you a can buy a lower range over the canter at the chemist, this cleared it up.

you might not have any of these effect as you know we are all different the main thing is it works,,take care my friend ..Lorraine xx

Kryssy profile image
Kryssy in reply to lorraine71-Australia

Thank you Lorraine - again. Always good advice. I've got some cortisone cream that I'm using on a damaged tendon at the moment until I get a jab when we get back. Don't suppose it's the same thing though. Daft moo that I am. No, diss that idea.

I'll see what happens. Fingers crossed it's easy peasy. Does everyone get the ice bracelets I wonder?

Take care and be well soon xxxxxxxxxxxx

Chickysha profile image
Chickysha

Hi Kryssy,I found Aveeno cream to be very good and Sudocrem good on and rashes/blisters.Lots of strange colourings on my skin,like a really poor fake tan.My briefs would rub my groin so ‘comando’ for the last 8 months!!! Take care,lots of love.

PS my Picc line went yesterday after I had Caelyx number 8 as it is working well.Scan soon.xxx

Kryssy profile image
Kryssy in reply to Chickysha

You cheeky thing! Have to rename you Nicholas. I heard I may go a bit brown. That could be a bonus as I can't go in the sun. Goodness knows how I'm supposed to work in the garden. C'est la vie I suppose.

All my best wishes for your scan. xxxxxx

Maus123 profile image
Maus123

Ice packs.. you lucky girl!

Here in Germany - at least at my regional hospital - you've got to bring your own support system for chemo including all things ice. I'm convinced the cooling box which supplies the many ice packs for my hand and feet during the 3.5 hrs Taxol infusion will break my husband's back the next time... that or the cooling box handle. We generally look as if we were to go camping in the hospital anyway, when we enter through the chemo ward door with our numerous backpacks and sports bags :) .

Hope the side effects won't clobber you too much and the chemo will work as it should.

Moo and hugs to you, Kryssy.

Maus

Kryssy profile image
Kryssy in reply to Maus123

Wow. Now that surprises me for Germany. I thought they were much more au fait than France. I didn't even know about hot hands and feet. Didn't research beforehand. Google's too scary for me.

Happy camping. No, that's cruel but I know you have a sense of humour.... Kumbaya xxxxxxxx

xxx x.

ellseybellsey profile image
ellseybellsey

Kryssy stop making me laugh I am going to burst my stitches open.

Hugs Ellsey xx

You gotta laugh the things we go through! Thank you for the smile. Maybe get them to put some vodka in the orange next time, you've already got the ice.

best wishes Dawn

Kryssy profile image
Kryssy in reply to

Like it. Didn't get the red/orange pee. Feel a bit cheated. Wonder where it all went then. Have a great weekend and try to find something to laugh about. It's good for the soul, but bad for the wrinkles. Take care xxxx

Hi Kryssy, Don't feel cheated I never had the orange wee and with all the Caelyx that I have had was never offered any cold packs but the best was the 3 day supply of steroids.

Keep you chine up this will also help with a double chine..Take care Lorraine xx

Kryssy profile image
Kryssy in reply to lorraine71-Australia

Morning Lorraine. That's put my mind at rest. Thank you. I'm feeling very weird though. Did some gardening yesterday and almost passed out. Body seemed to shut down and felt as if a plug had been pulled out of my body and I was being drained out. Big time headache and signs of neuropathy. Didn't like it. I must learn to take it easy. Very hard for me though. I'm a do-er.

I have steroids for two days after but because I started treatment day after seeing onc I didn't ask so took that day and day of treatment so now four days in all. No more for four weeks. Having lots of water and cream all over. How long before the skin starts cracking I wonder.

5am here so should try a bit more sleep. Take care of you xxxx

You may also like...

First of 6 caelyx/carbo today.

then 90 minutes caelyx (in slowly first time) flush, one hour carbo, flush. Caelyx is a pretty...

UP DATE ON SECOND OPINION

First week on Caelyx/Carbo- lungs hurting

the 7th day post infusion of my first round of Carbo/Caelyx. I went in on Monday feeling healthy...

First Caelyx

Had my first Caelyx treatment today, not a great introduction to this drug as had a allergic...

Update this is my 6th line of treatment Carbo/Caelyx

for me. I went to day for my 6th treatment Carbo/Caelyx as this has proven to be a good combo for...