Karen

Thanks for your thoughts I think you are right and I will speak to my GP about a 2nd opinion.

David

Hi Karen / Anne.

Anne did you get any answers to your bloated stomach? My Stomach is very bloated at present, seems more food is going in than coming out. I try not to take co-codimal no more than 2 a day so am not sure if the bloating is caused by pain killers or MM.

Karen glad to hear you finally got diagnosed can’t belive it took 4 years you…[Read more]

Hi Anna

Thanks for your reply.

I like you had back pain and the first doctor gave me an exercise sheet and said take some paracetamol. The 2nd doctor asked me if I wanted a “sickie note” and gave me naproxine which gave me kidney failure. Fortunately the 3rd doctor a locum was on the ball and realised I might have Myeloma. After an x-Ray which…[Read more]

Hi Anne

Slightly off topic from your post but I am interested in your back OP. I was diagnosed in May 2013 and had my SCT in Dec 2013. I was told I was in complete remission by my consultant recently so am currently not on any treatment. I have 2 crushed vertebrae which I am seeing a consultant about next Monday so will have to decide if I want…[Read more]

Hi All

I was on maintenance Revlimid after my SCT last December as part of the Myeloma X1 trial. I took the Revlimid for 3 months May-Jul but my platelet count was below 100 so they took me off it. I do feel better now I am not taking anything and feel at my best for 2 years. I have my 3 monthly Consultant appointment on the 24th so am hoping for…[Read more]

Just a suggestion.

I have a smart phone and use a voice recorder APP to record all my appointments with the hospital. I find them invaluable as a reference which I return to again and again especially my earlier appointments when I didn’t understand the terms being used. Also very good as I forget much of what was said as soon as i walk out the…[Read more]

Hi Susie

Do not fear the Zometa Infusion it is pretty painless apart from the needle for the drip. I have never had any side affects from my monthly infusion in the past year. I drive myself to the appointment and have never had any problems. The nurses at The Pines clinic Darenth Valley Hospital, Dartford are brilliant and make it a pleasent…[Read more]

Hi Susie

I am fortunate to have wife as my carer and for support. I don’t know how I would have got through without her. I was diagnosed in May 2012, had my SCT at Christmas and now am fortunately on Maintenance X1 trial drugs Revlimid. I an having a bad week and am very tired with lots of aches and pains at present so Myeloma never goes away.

I…[Read more]

Hi Sarah

I had my SC harvest in November last year. I had it at Kings London about 1 hour each way from my house in Kent. Mine only took 2 days, but on the 1st day they had only collected a small proportion of the cells but the next day with help from the nurse they managed to get 8 million which is the requirement. The machine I had was…[Read more]

Hope your SCT goes well and you achieve complete remission.

Best Regards David 🙂

Ps. I put this on the bottom of my previous post but it was left off when I hit post.

Hi Deborah

You are in for a bit of a tough time but don’t worry it is not too bad and you will get through it. I had my SCT just before Christmas 2013 about 7 months ago. I am in partial remission and currently on maintenance drugs mainly 10mg of Revlimid but I have to take up to 32 pills a day. Mostly to counter the side effects of chemo. These…[Read more]

Hi DXS
As I understand it the standard treatment in the UK as allowed by NICE is 4-6 cycles of CDT followed by SCT and then no further treatment until the Myeloma returns.

Also you get 2 lots of chemo to a SCT. The first a small dose by infusion as an outpatient followed by injections to stimulate you stem cell growth. Then if you have sufficient…[Read more]

Hi Author. Sorry to hear of your wife’s problems.

When I had my SCT in Dec 2013 after the Chemo I was very violently sick. Then I had very bad diarrhoea for about a week. I remember one particularly low point when I was sitting on the loo with my pants full of poo. I hadn’t been quick enough dragging the drip to the toilet. Blood running back up…[Read more]

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…[Read more]

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…[Read more]

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

Hi Mandy

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

David

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…[Read more]