Hi I have just come home from my second transplant. The ice is essential if you want to keep the terrible mouth sores at bay.
I had dreadful mucositis with my first SCT and it really hindered my recovery. You suck lollies, crushed ice or ice pops half an hour before you have the Melphalan and for 2 hours afterwards. Perfectly doable and I…[Read more]

I am also due to have a second SCT in Jan 2018. I would advise taking with you, based on my previous stay in hospital, ear plugs, eye masks, relaxation tapes or audio book CDs etc. With my previous SCT I was in hospital for 3 weeks, but my hospital has moved to ambulatory care now as they say there is less chance of infection. Not sure about…[Read more]

I have just your read your blog paulapurple and I am in awe of you for keeping such a great sense of humour after all you have been through and are still going through. It’s good that you have family around you for support.

Your blog has made feel a right scaredy cat as I was getting so worried about a 2nd SCT, when I should be celebrating the…[Read more]

I have just your read your blog paulapurple and I am in awe of you for keeping such a great sense of humour after all you have been through and are still going through. It’s good that you have family around you for support.

your blog has made feel a right scaredy cat as I getting so worried about a 2nd SCT, when I should be celebrating the fact…[Read more]

I have just your blog paulapurple, I am in awe of you, keeping such a great sense of humour after all you have been through and are still going through. It’s good that you have family around you for support.

your blog has made feel a right scaredy cat as I getting so worried about a 2nd SCT, when I should be celebrating the fact that I have…[Read more]

Very interesting article Andy. Like you, I had pain for months and went to see my GP several times, but was just told, see a physiotherapist, which I did for months, spending several hundred pounds, until I was completely bedridden. Even then I was not given a blood test, which would have immediately told the tale as my calcium levels were sky…[Read more]

Hi Phil
Thanks for the advice re Coca-Cola, I’ll certainly try that if I should get mucositis again, but I am going to try everything I can to avoid it if at all possible!

Neither the doc or nurses ever mentioned how horrendous it can be, just you might get a few mouth ulcers, no mention that ice before and after the Melphalan could help reduce…[Read more]

Well I might be able to manage some flavoured ice pops rather than had ice cubes, we’ll have to wait at see!

I wasn’t on maintenance after my SCT and didn’t start taking thalidomide as a maintenance until my light chains started to head toward the 100 mark, about 18months ago, so its now been almost 9 years since my first SCT. I think if I…[Read more]

Hi Sue

Thanks for your reply. Sorry to hear that your oesophagus was so badly affected, mine was too, by the Melphalan. I’m sure that why I get throat infections now, as I rarely had them before. I have since heard that it’s best to suck ice chips 30 mins prior to Melphalan, and for 6 hours afterwards!! I suppose it’s similar to wearing a cold…[Read more]

Dear Jan

Thank you so much for your reply. I can see that ice chips are the way to go, I wish I had know this when I had my first SCT, it wasn’t even mentioned and I am having my SCT at one of Europe leading transplant centres (Hammersmith)! Just one ulcer must have been a great relief – fantastic!

I didn’t get the terrible sickness like…[Read more]

Thank you for your reply I will certainly try doing just that this time round. I do hope your husband gets through his 2nd SCT without too many unpleasant side effects.