Caelyx

[cupakediva75]

Hi guys, if anyone out there has had caelyx, or is on it, experienced mouth ulcers? And the horrible taste that comes with it? I'm just getting over it but have another treatment this week. I have x 4 to go after this one. Any help would be great tks. Tess.

[jennybutler]

Yes I am on caelyx with carboplatin use a mouthwash called diflan it helps keep ulcers at bay tiredness my main bugbear with it only had 1 so far next on Friday cant wait. Best wishes

Love Jenny xxx

[cupakediva75 in reply to jennybutler]

Tks Jenny, and did u lose u r hair?

[jennybutler in reply to cupakediva75]

Not yet I did with taxol but so far not even thinning out fingers crossed I wont,

Love Jenny xxx

[cupakediva75 in reply to jennybutler]

Hi jenny, thanks for getting back to me, and that's great, I have my 2nd treatment this wed, can't wait not lol good luck with u rs on fri, glad to hear u haven't lost u r hair I haven't either thank god. Take care

[ketchup]

Hi, I was on caelyx last year and had terrible mouth sores I was given diflam and gelclair to help. The gelclair coats the mouth and makes it easier to eat. I did have to change what I ate and ate very bland foods as the acids in fruit and tomato based meals stung like hell. Good luck and I hope your mouth improves. X

[cupakediva75 in reply to ketchup]

Tks ketchup, I will try that. Did u lose u r hair at all?

[ketchup in reply to cupakediva75]

Hi, I kept the hair on my head and most of my eye brows but my eye lashes went very thin and I didn't have to wax or shave under my arms or legs. X

[sharonforce]

I was on Caelyx three years ago and fortunately I didn't suffer with mouth ulcers. I did use mouthwash on and off although not all the time as I felt that the mouthwash was making my mouth sore. On a previous chemotherapy treatment I was also on heavy antibiotics (chest infection) and the combination made my mouth/throat/oesophagus extremely sore and I just drunk nutrional shakes for a while as anything else caused pain.

My hair actually grew back whilst on Caelyx. I had lost all my hair following two rounds of Paclitaxel (due to the severe side effects of the Paclitaxel I had to stop and change to Caelyx.)

Hope the side effects improve and good luck with the treatment.

Sharon

[cupakediva75 in reply to sharonforce]

Hi Sharon, sorry to hear that, it's horrible going through this stuff hey, tks for your feedback, my mouth ulcers are ok just hurt a bit, I'm more worried about if I will lose my hair, I'm hoping not. Hope you are doing better now? Take care, talk soon

Tess xo

[MargaretJ]

Not sure if this helps!

I am on Caelyx and I do get a sore mouth and ulcers. I have mouthwash from the hospital and I use Bongela. I counteract the nasty taste, which I have had with all my chemo's I counteract with strong flavoured food like pineapple and cheese! I also get nausea which I deal with by taking anti nausea medication when it seems as if I am likely to be sick!

Good luck

Margaret

[cupakediva75]

Hi Margaret, thanks for your message, yeah the taste after the chemo is horrible, it's stayed in my mouth for weeks I only just got rid of it and now I'm having another treatment this Wednesday, so that shld be fun. Lol. I have been eating kiwi fruit, and drink lots of green tea. Lol. Hope you are doing well.

Take care.

Tess.

[MaggyH]

Hi Tess l am currently on number 5 caelex and carboplatin. Sadly my hair has gone (but it was very fine & thin to start with), and I have mouth ulcers too. I rinse am and pm with corsodil mouthwash, and use bonjella which does seem to help. On the plus side the treatment is working and my car 125 has dropped to 10, which is the lowest it has ever been. Good luck with the rest of your chemo

Love Brenda x

[zuzana in reply to MaggyH]

So pleased treatment working for u, i had number 2 and hoping for good results as my ca125 raised after number 1

[cupakediva75 in reply to zuzana]

Hi zuzana tks for your message, not sure if caelyx has worked yet will be getting my cat scan after my next treatment to see if it has shrunk it. I'm praying it has. Can I ask what yours raised too?

Tess

[zuzana in reply to cupakediva75]

Fingers cross for u it has worked. I have scan in 2 weeks as well so will see. My ca 125 went from 250 to something over 300,,

[cupakediva75 in reply to zuzana]

Hi zuzana tks for that. And wow really, why did it go up? Did they say?

Let me no how u r test results go ok.

Tess

[zuzana in reply to cupakediva75]

They said they would like to see it go down but needs time as well, that's why i have ct to see if is working xxx

[cupakediva75]

Hi Brenda, tks for your message, I'm glad to hear your ca125 has dropped, mine was only ever 17 now down to 10, but since my first round of treatment didn't work, which was gem and carbo i was never nauseas but had the horrible taste of lead, but it went away after a week. But that treatment after 3 months didn't work so now I'm on caelyx I'm hoping it works and gets rid if my 2mm growth. I have to sept to go, so I will be glad when it's all over. I hope you are doing ok? Take care.

[Hidden]

I was on Caelyx last year. Didn't loose my hair or have too much trouble with my mouth. I did have blistering on my skin mainly arms. Remember to cover up in the sun and use plenty of cream, I was prescribed Epederm and lots on your feet. No spicy foods or hot drinks,baths or showers. I did try a mild curry but only managed 2mouthsful before it burned like the devil. Good luck with the rest of your treatment,

Chris

[cupakediva75 in reply to Hidden]

Hi Chris, thanks for your message, glad u didn't lose your hair and your mouth didn't have ulcers, my ulcers are not to bad but annoying lol I'm just rinsing my mouth with warm water and salt I avoid the sun like a hermit lol trust me I'm not pale for nothing haha thanks for your advice, I do drink green tea a lot not sure I can give that up hehe. Hope you are well. Take care.

[buffymin]

I've just had my 4th dose Caelyx along with 2nd cisplatin (allergic to carboplatin ) I had lip blisters and mouth ulcers initially but not now. A recent change was skin itching and discolouration around bra side straps and armpits.. Apparently this is another side effect especially where there is heat. I think because Caelyx is a slow burner for effects various symptoms may pop up over the course! Aqueous cream good for calming down and piriton for itching.. Hope this helps!!

[cupakediva75 in reply to buffymin]

Hi buffymin, thanks for your message, sorry to hear all about what you have been going through, I had my 2dose of caelyx yesterday, and my white cells were down but there's not much you can do, it's the chemo, have u heard of Astra 8? It's for the immune system I have it in a liquid and have been using it? Any thoughts?

Have a great day, talk soon

Tess xo

[buffymin]

Not heard of Astra 8 but will look up thanks..I'm looking at lifemel honey too?? Good for blood and steering away from cannabis oil that people have kindly recommended!! I think friends and family are so desperate to help you get a bit bombarded with suggestions!! X

[cupakediva75 in reply to buffymin]

Hi buffymin, tks for u r message, and yeah Astra 8 is a liquid u can have it in tablet form but I don'tike it lol , it's good got the immune system western medicine I brought it from my health shop I'm in qld Australia not sure where u are from? But it has made me feel better. Not sure also if u have got this but now that I have had my 2nd dose of caelyx I found that the next day after it I woke up with my heart beating really fast for no reason I was asleep it only went on for about 15 mins but I could breath fine, it was just weird. Have u experienced it?

[vipervictoria]

I have heard of a mouthwash that contains lidocaine, which is only available on prescription. Maybe worth checking out? Hope you are getting some help. Hugs, Vxxx

[cupakediva75 in reply to vipervictoria]

Hi Victoria, thanks for that bit they have gone now thank god . I was told by my sisters doctor that ulcers if they don't clear up can lead to throat cancer.