[DAVE1Participant]

HI ALL
My name is Dave and im 47 years old
In july 2011 had plasmacytoma removed from my spine which caused being temporary paralsyed from waist down,i had a 9 hour op and 2 metal rods and 12 screws put in my back,i was told i will be lucky to walk again,but the op was a success and i would be on 2 crutches for 12 months then 1 crutch for life,but with my determination i was out of hospital in 6 days and now can walk round the house unaided and on 1 crutch when out for a short walk depending on confidence and legs,the problem was it compressed my spinal cord
im on my 4 month of cdt,my paraprotien was 8.7 at the start and is now 3.7 and my myeloma 4%,everybody has told me that this is very low,and now i have been recommended sct which scares the life out of me
anybody had problems with there eyes on cdt which i have,side effects not to bad at the moment just mentaly torture,a bit worried about nerve damage taking thalidomide due to already having some nerve damage in my legs
not much support from my doctor or nurses,all they care about is getting my counts down not my symptoms
any support welcome
cheers Dave

[ChelleMcParticipant]

Welcome to the forum, sorry it's under this situation. I am 37 and the carer of my husband (also 37). You're levels are very low which actually is a good time to av a SCT. I wasn't with my husband when he had his in 2005 but I do know you will need a lot of support. It is a difficult recovery, in some aspects more emotional. It's the only time he lost his hair and was in hospital (Birmingham) for about 3-4 weeks. It's too bad you medical staff isn't more supportive, that is 1 thing we are VERY lucky with. We av a wonderful support with our nurses and Consultants and I say we because I know I can count on them as well. Where do you go for treatment? I started a support group and can't recommend them enough! Phil was skeptical about going to one but has become my co-leader. They can really do a world of good getting different ideas and learning about things that you may face in the future. Stay positive! This site is wonderful as well as Myeloma UK themselves. You're not alone.. Hope all goes well for you. Keep us updated…
Chelle x

[PerkymiteParticipant]

Hi Dave, Welcome (?) to our little group. Myeloma affects everybody differently so you cannot set out any rules or firm guide lines. Everybody goes roughly alone the same path but that is about it. The good thing is that the group here has a wide experience of Myeloma and somebody will have been there before you. You sound as if you have the one thing you do need however in abundance and that is determination.

I did not find the SCT process that bad. I had a real bad sore throat and was ill with a bug during mine but all in all it was well worth doing, and I am 68.

The Myeloma UK site is excellent and you do not really need to look any further for good, accurate up-to-date information. They also have a resident Myeloma Nurse so if you have any problems that need a discussion with ?somebody who knows? then you can telephone her for free. I do not know where you can get a better deal 😉 😀

Kindest Regards ? Vasbyte

David

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