In my humble opinion you should not be worried. My Paraproteins have gone from 15-45 in the last 3 years but my consultant at my last 3 reviews is saying “you are cured and all Myeloma is gone”.

As I understand it, it is a ratio between your Paraproteins and kappa-light-chains which matter. If I have that wrong hopefully someone will…[Read more]

In my humble opinion you should not be worried. My Paraproteins have gone from 15-45 in the last 3 years but my consultant at my last 3 reviews is saying “you are cured and all Myeloma is gone”.

As I understand it, it is a ratio between your Paraproteins and kappa-light-chains which matter. “<span style=”color: #222222; font-family:…[Read more]

I am 3.5 years post SCT and am doing well with Paraproteins at 45 (was over 4000 pre SCT). While I was there have my stem cells harvested I spoke to a man who said it was 8 years since his 1st SCT.

Not sure it answers your question but my limited experience.

I am very positive about my cancel. Gave me the chance to retire early which…[Read more]

Regards David

Regards Davidbr

I had my SCT in Dec 2013 after being diagnosed in May 2013 and I have never looked back. It took 9 months to a year to recover but recover I have. On my last vist to my consultant in June this year he atually said I was cured. He was quotting an America medical paper which was saying they had cases of Myloma patients who had been in…[Read more]

This is what happened to me but it may not be medically correct but hope it helps. Do not be afraid it is all doable and at most it is unpleasant. You will be given all the help you need as all the SCT staff are the best in the world.

0. They install a Hickman line which is a tube in to a main artery by your neck.
1. You are given a high…[Read more]

This is what happened to me but it may not be medically correct but hope it helps. Do not be afraid it is all doable and at most it is unpleasant. You will be given all the help you need as all the SCT staff are the best in the world.

0. They install a Hick-man line which is a tube in to a main artery by your neck.
1. You are given a…[Read more]

Hope…[Read more]

Hope…[Read more]

I just wanted to wish you well and I am sure all the thoughts of the Myeloma UK subscribers are with you.

Some days I actually forget that I have Myeloma especially when I am with my Grandchildren. My wife does not understand why I don’t feel sorry for myself. But being able to do what I want and not what someone else wants is the…[Read more]

Hope all goes well for you and wish you well for the future. I am 2 years post SCT and doing well. Only have a 6 monthly check-up at hospital now. Just have some aches and pains, don’t know if that is my age (61) or Myeloma. Still not working and enjoying my early retirement, but have to have some good come out of this cancer.…[Read more]

Hope all is going well have you got a sore throat yet?

You surprise me saying you have been outside. I spent 18 days on the ward. They did move me around to 3 different rooms as midway I was infectious. But I was not allowed out of my room apart from that and couldn’t even see the sky.

I was only allowed well adult visitors and they had…[Read more]

Let us know how you are doing. I am sure I am not the only one interested in your progress. Also my thoughts are very much with you as this discussion has reminded me what you are going through.

Best Wishes David

When I was in having my stem cell harvest I spoke to a nice man who was up for his 2nd SCT after 7 years. So I am hoping for a few more years without treatment. I was 58 (2013) when diagnosed and nearly 59 when I had my SCT. My consultant has always said I am in partial remission as my counts have never been zero.

My counts must have…[Read more]

Hope all goes well for you. It is not pleasant but very doable. I am 2 years post SCT and getting stronger everyday.

Best Regards David

I found your post very interesting. I am on my 18th Zometa and have not noticed many problems before. But now thinking about it the last 2 have been terrible.

After my previous infusion I had a very sharp pain in my Right hip if turning quickly or sneezing. It made traveling in a car very painful when the car went over speed bumps or…[Read more]

That is brilliant thanks for letting me know and the more detail the bettr. I find it helps to discuss things with other MM suffers and you have help me thanks.

Just wondering why surgeon said you did’nt need the 2nd Op.

David

Sorry to be a pain but just breifly how did your Vertbroplasty go. What did they do was it just one day in hospital? If you are busy no problem and thanks anyway.

David

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

David

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]

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]

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]

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]

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]

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]

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]

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]

Best Regards David 🙂

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

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]

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]

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]

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]

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]

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

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

David

Had a terrible…[Read more]