[davidbrParticipant]

Hi Rebecca, Apologizes to Keith again

My first signs of Myeloma were when I lifted a heavy table in Jan 2013 and my back gave way. Went to docs, 1st DR one gave me a exercise sheet and told me take Paracetamol. 2nd DR asked if I wanted a “sickie note” then he gave me Naproxen which caused kidney failure. Luckily 3rd DR a locum took me seriously and realised I had Myeloma and sent me for tests. Had X-rays which showed 2 crushed vertebrae. Myeloma confirmed after bone marrow test May 2013, then 4 cycles of CDT followed by SCT Dec 20013.
Saw Dr Kamat my consultant at Darenth Valley Hospital 01/04/2014 and he said SCT was not complete success and I should go back on trial with lenithimide and dexamethasone. No BM or blood tests results yet.
My wife was hoping the SCT would be a success and I would be fixed and drug free for a few years but she was disappointed and quite upset. I had to explain I thought Myeloma didn’t work like that and I would always need some form of treatment.
She would like me to refuse the maintenance and go drug free for a while as is seems the drugs make me ill not Myeloma. But I am worried Myeloma might get worse if I don’t.
Any opinions on whether to go back on the trial and have lenithimide and dexamethasone would be very appreciated.

Regards David

[davidbrParticipant]

Hi RebeccaR Hi Keith sorry I am high-jacking your original post.

I am having my treatment in parallel with you. I had my SCT on 8th Dec, 2013 but it went we ll and I was out on Christmas Eve. I am also a similar age 59 so am very interested in your mail and how you are getting on.

I am getting better very slowly and am doing more each day. But I still have aches and pains especially my back and if I walk to our local shops and back about 1.5 miles that is it for the day. There is no way I could play tennis. I have been advised by my consultant that the SCT wasn’t 100% successful but it is early days. Because of this he has advised me I need maintenance treatment on a lenithimide and dexamethasone.

My question is have you been advised you need maintenance treatment? What is next for you.

Regards David

[davidbrParticipant]

Hi Tom

My Consultant didn’t have results from BM or blood tests. But he said my SCT has not been a complete success but it is early days and may improve. He says I need to go onto maintenance and go back on the trial with lenithimide and dexamethasone. I need to start Zometa infusions, calcium and aspirin.

David

[davidbrParticipant]

Hi Mandy

I am so sorry to hear your terrible news. My thoughts are with you, bless you.

David

[davidbrParticipant]

Hi Keith
Had my SCT just before Christmas at Kings College Hospital, Denmark Hill. They gave me Chlorhexidine Gluconate you have swill round your mouth for 60 seconds and Nystan has a dropper which you use to coat you tounge. After reading Tom’s post I used both more than recommended and didn’t have any problems with my mouth.

Had a terrible sore throat though and could not swallow anything for 3 days only cold milk. They gave me anti-biotitic tables which cleared it up.

So make sure you ask for those mouth washes.

I am off to see my consultant today 01/04/13 1:50 for the blood and bone marrow test results to see if my SCT was successful, which I am sure it is.

Hope all goes well.

Regards David

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