[AvrilParticipant]

Hi I am due to have my second SCT, the first kept me in remission for 6 years, in the next few months and was wondering if any of you could offer advice on how to avoid severe mucositis. I found this the very worst side effect as I had huge ulcers in the throat and mouth which bled into my stomach making me terribly sick and was unable to even swallow a drink. I was also on a morphine drip for 4 days because of the pain. I have heard that sucking ice chips or a lolly whilst the chemo is going in keeps the mouth cold and can help with making this problem less severe.

Have any of you tried this or do you have any other tips that might help? Frankly, for me this was the worst part of the SCT process and I’m dreading a repeat performance! so any advice would be most welcome.

[wifeofParticipant]

Hi,

my husband is due to go in for his second sct in June. I did a lot of reading prior to his first one and I got him to suck ice pops whilst the Melphalan was going in and for a little while afterwards. Thankfully he had no trouble with mouth ulcers so we will be repeating the same process again. Hope this helps and good luck

[AvrilParticipant]

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.

[janwParticipant]

Hi Avril,

Well done for achieving six years of remission following your stem cell transplant. I can understand your concerns about mucositis which causes so much pain, discomfort and misery, because similar to your experience I also had oral mucositis during my first Sct in 2010. My mouth was full of ulcers, which made speaking, swallowing and eating/drinking very painful. The mouthwash would sting and cause irritation. I was worried about the sores becoming infected or bacteria entering the blood. It also didn’t help that the high dose Melphalan caused me severe nausea and vomiting throughout my stay in hospital and for months afterwards. I lost a considerable amount of weight due to these issues.

For my first Sct, I was advised to suck one ice pop prior to receiving the Melphalan in order to help prevent mouth sores. However for my second Sct last September, I was advised to suck as much crushed ice as possible just prior to receiving the Melphalan and continue with the ice for as long as possible.
The hospital provided a jug full of crushed ice and I munched my way through the majority of it. This time, I only experienced one small mouth sore which was such a relief. The nausea and vomiting were also managed a lot better due to a more effective combination of anti sickness drugs, which resulted in my second Sct being a much easier experience for me.

Apparently making the mouth cold from the ice helps prevent ulceration in the mouth, because the cold reduces the blood flow to the mouth by narrowing the blood vessels which in turn limits the amount of chemotherapy drugs delivered to the tissues. Perhaps you could ask your hospital whether they provide crushed ice or whether you need to take in your own ice pops/ice lollies/ice cubes to keep in their freezers, because it’s definitely worth considering sucking on ice to help prevent or reduce mucositis.

I hope your second stem cell transplant goes well and provides you with many years of remission.

Regards

Jan

[AvrilParticipant]

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 you, they managed that side of things really well. I do feel better prepared this time round as I am well enough to research the best way to manage the process. I hope you have a long remission this time round too.

Avril

[susantrParticipant]

Hi Avril

I too had ice cubes commencing 30 minutes prior to the Melphalan, whilst receiving the Melphalan and 30 minutes afterwards. I didn’t have any mouth sores, but my oesophagus still suffered badly. I can’t stomach ice cubes to this day. I wish you well with your SCT and congratulations achieving 6 years remission from your 1st SCT. I hope I am as lucky as you.

Kind regards

Sue

[AvrilParticipant]

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 cap to prevent hair loss, although personally, I found that the least upsetting part of the whole process. Were you offered Paliferm injections to help prevent mucositis? I wasn’t, but again, I have heard from other sources, that these injection along with the ice chips do a good job in preventing this distressing side effect.
I do hope you are even luckier than me and you won’t need another SCT.

[susantrParticipant]

Hi Avril

Wow to chew ice cubes for 6 hours after Melphalan will take some doing! When I had my SCT I wasn’t offered any Paliferm, had I have known that medication existed to help alleviate the mucositis I would have asked for it. You live and learn. Do you mind me asking if you took maintenance therapy after your SCT or were you drug free for the 6 wonderful years? I wish you the very best for your upcoming SCT. I hope you get another long remission.

Sue

[AvrilParticipant]

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 wasn’t going to be 70 this December, there wouldn’t be such a rush towards a 2nd SCT. My Consultant’s thinking is that, if a 2nd SCT can give me another good drug free remission, other drugs not yet available in the UK including immunotherapy and T cell therapy maybe have advanced enough to tackle Myeloma using kinder less toxic drugs than those currently available. There was an interesting article in a newspaper today that stated that the University of Philadelphia have carried out T cell therapy trials on Leukemia and myeloma patients with 33 out of 35 myeloma patients achieving full remission. Let’s hope that these trials continue and succeed in giving us hope for the future with a more personalised and targeted drug programme, rather than the current, one size fits all.

[susantrParticipant]

Hi Avril

I wish you a very speedy recovery from your SCT and hope it’s as successful as the first one.

Sue

[adamsp41Participant]

Hellos Avril…I had my SCT in Jan2011 and suffered badly with mucositis( worst part of the whole treatment) and I tried everything to ease the problem …mouthwashes …ice lollys…gargles…toothpaste…cold yoghurts…etc etc etc…to no avail…but my eldest daughter came in one day and asked if I have tried using cool coca-cola as a mouthwash….well it worked.. to be blunt it acted like a decoke of my mouth/throat/gullet and gave me almost immediate relief…at least I could talk…I know it sounds strange but any relief from the problems associated with SCT are more than welcome and this one worked for me…hope SCT No2 goes well and best wishes for a speedy recovery..Phil

[AvrilParticipant]

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 the effect. Strange that they underplay it so much, particularly as like you, I found that the most distressing part of the SCT process.

I am certainly going to ask if I can have the Paliferm injections. I do feel better prepared this time round as I am more knowledgeable, and won’t be too shy to ask more questions and demand more answers.

I hope your remission continues and you won’t need another SCT in the future.

Avril

[Author]

Posts