Hi Tracey,

Like Jo, my kidneys were too damaged for SCT. I achieved near remission and am on maintenance therapy now so SCT is not the be all and end all for myeloma. In the US they seem to prefer to do without SCT as it is still a lottery re how long it would help.

Good luck

Scott

Hello Stephen

Its interesting that you started with Revlimid and moved on to Velcade. It was the opposite for me. I was on Velcade for three months and it nearly killed me. I was too ill to continue that treatment. My consultant switched me to Revlimid and that worked. My kidneys were too impaired for SCT so I am now on maintenance therapy…[Read more]

Hi Pete

Just saw this thread of comments. Your situation mirrors mine. I was 57 when I got this in 2010. Like you I had bad back pain and had to stop playing golf for 5 months. I was diagnosed in Sept 2010. I'm now on maintenance therapy and going OK so don't worry as there is still a lot of life to live.

Stay strong

Scott

Hi Dai,

Many thanks for the information. I often wondered how to do that so now its done!

Keep well

Scott

Hi Helen,

I was far too ill for ages to even think about what I could claim. Handily enough there is a South East Cancer Centre just down the road. My wife and I went there a while ago to see what it was all about. They do alternative therapy which really helps. They also directed me to the local Citizens Advice Bureau and some chap there…[Read more]

I saw an occupational health chap too. He reckoned I would kill myself if I tried to go back to work as my immune system is pretty much non-existent. Must be the same for you too surely with all the chemo treatment. He said I would pick up every germ on the train which in the rush hour is always packed. That is on top of low energy levels etc.…[Read more]

Good idea to skip "My Way". I think everyone has overdosed on that one. Acker Bilk is a great choice. Not sure if he was Trade Jazz, more like TRAD!!

I'm thinking I'd like Jerusalem played at some point. Good and rousing.

I'm off to sort out my will now.

Thanks for getting me thinking about these things.

Scott

Wow. I'm impressed. I haven't even got round to making a will yet.

Off the top of my head I'd like Spirit in the Sky played or maybe a good tune from Status Quo .. Down down deeper and down!

This has given me the push to get organised. I must at least get my will sorted.

Let's hope we both keep going for a while yet though.

All the…[Read more]

Outstanding. I'll be fascinated to hear of your proposed order of service to go with it!

Cheers

Scott

I guess from your sign on name, you live in Javea. We are hoping to get out to our casa in Villamartin for 10 days next month, but thats a bit far from Javea.

Hope you get started on the maintenance therapy soon.

Scott

Hi James

I started maintenance therapy last July straight after the main treatment. I didn't have stem cell transplant as my kidneys were wrecked. I'm also on lenalidomide (Revlamid) and its working fine so far. I'm encouraged to see that Annette has been on it now for two years. I do have neuropathy as I was on Velcade and got it from…[Read more]

Hi Nadine,

I didn't have the SCT as my kidneys are only working at about 20% and there was a higher risk. I've been on maintenance therapy since July and so far so good…

All the best

Scott

Hi Jean

Thanks from me too for the info. I'd never heard of the beacon info site either. I haven't bothered to do any research. I just take whatever the good Professor Schey prescribes for me. He seems to be pretty clued up on myeloma developments anyway.

All the best

Scott

Well, its pretty EARLY in the new year, so that still leaves RLY!

There seems to be different varieties of cardamom. The one I know is the Indian type and comes as cardamom seeds. Always found in curries and its annoying when you bite into a cardamom seed.
This type seems to come from a Chinese plant so a different variety I think. Be very careful if you order some on the internet from China. Who knows what…[Read more]

Hi Chris

I had a similar experience to start. I had really bad back pain from May 2010. I thought it was just muscular but it didn't go away. In Sept I had an MRI scan and they found a broken bone in my spine plus blood disorders. In Oct I got the diagnosis of myeloma. At that time I had never even heard of it! Not a happy time for the…[Read more]

Hello Keith

I had a flu jab years ago and got the worst cold of my life. Never again any flu jabs for me.

I did get a bad cold a few weeks ago and as usual was left with a hacking cough. It was a form of asthma and I got two different types of inhaler – one preventative and one for when the cough gets bad. They worked brilliantly and the…[Read more]

I've started to get dry skin and the specialist seemed pretty relaxed about it. I guess it is fairly common. He just told me to use E45 cream which I do. It hasn't cured it but at least there isn't a shower of dead skin whenever I take off my clothes now. My wife had to keep hoovering up wherever I went!

All the best

Scott

Hi Jo

I've just logged on to the forum and have read your news. Absolutely fantastic. I am so pleased for you. Lets hope for a good long remission period for you. There's hope for us all.

Have a great Christmas. Dec 1 tomorrow – unbelievable!

Scott

Hi all,

It is interesting to see that everyone is pretty well spread all over the country. Myeloma is clearly totally random. I live in Purley, Surrey and go to London Bridge Hospital for the cancer and Kings for my kidneys (currently at about 20% function). I'm 58 now and hopefully will last another year or two.

Good luck to all.

Scott