[CarolsymonsParticipant]

I will be having the dreaded melphalan on Monday with my stem cells returned Wednesday. Hammersmith Hospital does not provide ice for the chemo infusion…in fact the consultant basically laughed at me when I asked about it. So to all of you experienced SCT people out there does ice help to prevent or lessen mouth sores or not? I need a quick answer as I am being admitted Sunday and will need to buy my own ice before then!

Carol

[MicheleParticipant]

Carol, where I was treated in Poole,the moment my melphalan infusion started a trolley load of ice and ice-lollies were wheeled in beside me and I was told to suck as many as I could to keep my mouth constantly freezing cold.
As a consequence, I had no mouth problems at all. Keeping the mouth frozen seems to stop the chemo. damaging the delicate cells inside the mouth.

I’m surprised your consultant laughed at you. Quite a lot of hospitals do this automatically now.
I would definitely take my own ice in if they can’t provide any for you.

By the way, only one downside….it’ll put you off of ice-lollies for months!

[MicheleParticipant]

Carol, where I was treated in Poole,the moment my melphalan infusion started a trolley load of ice and ice-lollies were wheeled in beside me and I was told to suck as many as I could to keep my mouth constantly freezing cold.
As a consequence, I had no mouth problems at all. Keeping the mouth frozen seems to stop the chemo. damaging the delicate cells inside the mouth.

I’m surprised your consultant laughed at you. Quite a lot of hospitals do this automatically now.
I would definitely take my own ice in if they can’t provide any for you.

By the way, only one downside….it’ll put you off of ice-lollies for months!

• This reply was modified 10 years, 10 months ago by  Michele.

[MicheleParticipant]

Oh rats…..the double posting gremlin strikes again!

[jmsmythParticipant]

Carol when Frank started melphalan he also had a supply of ice lollies. After cells returned they supplied a mouth wash and he was for ever using it – he had no problems with his mouth

Good luck
Jean

[meganjaneParticipant]

Hi Carol,

When my husband Phil had his Melphalan he chewed on ice chips before and during the chemo. We got the ice from the ice machine in the ward kitchen. Phil also used the mouth wash provided during his stay in hospital and when he got home. He had no mouth ulcers.

Good luck and keep us posted.

Megan

[HelenParticipant]

Dear Carol
As said by the others take your own or get your own brought in, I sucked ice cubes I’d made from fruit juices I like and sucked them for 10 minutes before, during the infusion and 10 minutes after. I also had lots of mouth washes.
I had no mouth ulcers, in fact my mouth was the only bit of me that seemed to escape unscathed from the Melphalan.
Helen

[DizzylizParticipant]

hi Carol,

good luck for monday, kev did all the above and got away without having any problems with his mouth,so ice and mouth wash are well worth it all the best and take care!

love liz xx

[mandyphillips41Participant]

Hi Carol

I had iced lollies and they seemed to work for me, good luck withheld transplant, I had my first on in May 2013 and in November 2013 was told I was in remission. On Monday I was told the cancer was back so remission was only 7 weeks, looks like I have to do it all agains
Anyway, try the iced lollies and as I said before Good Luck ❌❤️❌

[CarolsymonsParticipant]

Thanks everyone
Well I did the ice thing and have no mouth sores yet, but I am only up to day 2 since transplant, so not out of the woods yet.

Mandy.I am so scared that I will go through ths transplant and then only get a short remission…. 7 weeks – that is worrying! It is such a gamble but I felt I had to take the chance.

Carol

[mandyphillips41Participant]

Hi Carol
Please try not to worry I don’t believe I was ever in remission. I suffered side effect from the start and I told my consultant last week about this as I never felt well. Also I have no faith in him whatsoever this is the main reason for me going to the Christie centre. I just hope & pray that this time around they get it right. Good luck to you Carol I am sure you will be fine
Mandy xx

[DizzylizParticipant]

Hi carol,

How are you feeling? Hope everything is doing what it should be.
Just thought I’d check in to see how you are?

Take care liz & kev xx

[CarolsymonsParticipant]

Hi Liz and Kev

Well it is day +11 after transplant and I have had my 2nd growth hormone injection to shock my cheeky but shy new stem cells into action. Every day brings improvement now. I had a few rough days especially due to mucositis in my oesophagus….terribly painful but after all the ice debate I had no mouth sores so I believe the ice works….just a shame I couldn’t get it down into my oesophagus…OUCH! I am still unable to eat much, but today I can swallow water at least. I have had diarrhoea which is also expected but that is also improving. I have had a few bouts of vomiting and dry retching but nothing too disturbing but throughout it all have managed to do everything I needed to care for myself. My husband visits every 3 or 4 days but that is only because I asked him not to come as I kept falling asleep while chatting with him. How embarrassing after he has made the effort to get here! Really the staff has been amazing…the haemotology ward (Dacie Ward) at Hammersmith Hospital has an A star rating from me, so there is not much my husband could do except take home my washing. Well it is past my afternoon nap time so I must sleep……3 hours of an afternoon is not unusual for me nowadays…..FATIGUE!

Carol

[Ang287Participant]

Hi Carol
My husband Graham goes in for SCT tomorrow as had chest infection last week and could not go in. I still read your posts to him. Glad you had no mouth sores but bad news about your oesophagus – I am sure it will get better each day and hope you are soon home again and have a long remission.
Best wishes, Angela x

[VickiParticipant]

Hi Carole

Just wanted to wish you all the best and that you are on the mend a bit. Fatigue has always been a problem for Colin. Hope you throat is feeling better. That was a real problem for Colin too x

Every day is a day closer to full health

Best of luck

Vicki and Colin x

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