[AvrilParticipant]

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 have not even one mouth ulcer or a sore mouth, which want I could continue to eat and drink all the through, which has made the process a whole lot easier this time round.

You don’t really feel ill just out of it a bit and weak, so try not to worry too much, I did too and its turned out okay. I am 70 now my first transplant was 10 years ago, so it’s worth it, even if you just get 4 or 5 years remission without having to take any drugs and life can go back to normal.

God luck I hope you don’t find the process too difficult.

—–Original Message—–
From: WebTeam [mailto:webteam@myeloma.org.uk]
Sent: 26 February 2018 13:48
To: noreply@myeloma.org.uk
Subject: [Myeloma UK] Due to have stem cell transplant Jan 2018 any advice about getting through it

NO-REPLY: Please do not reply to this email directly, use the post link below.

caroler wrote:
ice/ice pops as this is not something I have heard about. Is it supposed to help with the mucositis?

[AvrilParticipant]

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 this as it means going to the hospital every day for blood/infection checks, so surely still at risk and I gather 60% of patients end up in hospital anyway!

Anyway, good luck with your SCT. I also had a damaged hip and pelvis after a large plasmacytoma and could hardly walk, but although a lot older than you the large hole in my pelvis reformed itself and I now walk with barely a limp. I hope this helps you have a positive attitude towards the SCT and to remember that everybody’s experience is different, some people just sail through it and others find it more difficult, but the end result is worth it.

[AvrilParticipant]

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 fact that I have enough stem cells for a second and not keep over analysing and getting worked up about the side effects (the last one was pretty awful!)

However, having read your blog I feel in a much better place now and can only hope that things start improving for you for you. I love your hair by the way, as I was thinking of going pink myself when my hair grows back after my next SCT. Keep going with the blog I shall check in every week or so.

• This reply was modified 6 years, 9 months ago by  Avril.
• This reply was modified 6 years, 9 months ago by  Avril.

[AvrilParticipant]

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 high. Finally had a private CT scan and was diagnosed.

I am about to undergo a second SCT in 3-4 months. My Consultant says if that gives me another good remission, some of the drugs mentioned in your article will hopefully have been approved to add to the Myeloma drugs arsenal. Thalidomide as maintenance didn’t keep my light chains under control, although I know of patients that have done very well with it as a maintenance therapy.

Keep well, Avril

[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

[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.

[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.

[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

[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.

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