[wendyduffieldParticipant]

Hi all,
I haven't been on the site for a while as waiting for my SCT which took place on 1 September and out of hospital on 15th September which I was pretty pleased about and I seem to have got off lightly compared to some people. Mouth relatively ok, mild diarrhea and sickness and nausea. I was expecting to have no appetite but after a couple of days it returned and I was ordering off the halal menu in hospital and was getting some great curries! As I had been fattening myself up prior to transplant I am now faced with the unusual dilemma of watching my weight post transplant as I didn't really lose any weight and am now relatively inactive.

My main problem 2.5 weeks post transplant is fatigue, sooo tired all the time and depression. It is all a bit of an anti climax after this year of treatment focusing on having the SCT, now it's over what now? Don't know if this is a common feeling and I take comfort from the fact that those a bit further on post SCT are gradually feeling better with more energy. On the hair front I went to skinhead a few weeks before transplant and was told I looked like a Buddhist nun. Post Melphalan it is now falling out and looks patchy so I may shave all off and wear hats and scarves. I got an nhs wig but dont really feel comfortable wearing it. I wish unwanted body hair had fallen out but no such luck!

Wendy

[wendyduffieldParticipant]

thanks for all your replies, I was discharged today from hospital (wasnt staying on haemotology ward) feeling alot better. The tests didnt show any particular bug and the docs reckoned I just picked up something in Portugal which because I am immunosuppressed couldnt fight off as easily. Anyway glad to be home and not rushing to the toilet every half an hour!

Wendy

[wendyduffieldParticipant]

I think your mum
Is doing really well. I started on thalidomide in January but was unable to complete the first cycle due to an horrendous skin rash. I also felt fAint so they reduced the dose. I remember the feeling of being in a black hole and very tired. I started a second cycle after the skin rash cleared but had to stop
Again due to nerve damage. In spite of my intolerance to it and only having 1.5 cycles it worked a treat.I would ring your mum's support nurse to report any side effects.

I too live on my own and don't have a particular carer. I was extremely anxious about my diagnosis and my treatment and could not even concentrate enough to cope with taking all the medication. Imhad some counseling at a local cancer support centre and my gp prescribed me mild anti depressants'as I was also going through relationship breakdown. Your mum may not need or want to take anti depressants but i am sure there will be support in her area. She can also talk to
A myeloma uk peer member which I found useful too. As time goes on I have coped better with my treatment but it sounds like your mum is doing pretty well with all the side effects she is experiencing.

All the best to your mum and you.

Wendy

[wendyduffieldParticipant]

well at least its not just me, I have an appointment with an ENT specialist on Wednesday and shall see what they can do, however I have a feeling it will be nothing so will just have to try and enter a state of blissful ignorance as Dai does.

Wendy xx

[wendyduffieldParticipant]

Hi Derek, I am on CTD (Day 21) of the first cycle and getting numbness and tingling in my spine especially when tryinng to sleep at night and extreme shakiness. I have reported it to the doctor and they say it can be one of the side effects but didnt advise if there was anything I can do to alleviate it. I will take Geoffs advice and ask the GP for some amitryplene and zamadol if it gets unbearable. I always thought periperal neuropathy was in your feet and hands too.

[wendyduffieldParticipant]

Hi phil I would like to join the under 50's group. At 49 I think I just qualify. I was diagnosed with light chain myeloma on 24th Dec following admission to hospital with kidney failure. I am still coming to terms with it and started treatment with CTD about a week later but I thought better sooner than later.Its all been such a shock and I cant take it in
but I suppose its early days.

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