[scott9Participant]

No, Prof Schey is not based at Nottingham. He is at both Kings College and London Bridge hospitals.

I didn't do too well either on Velcade and dex. Hopefully things will pick up for you both. It seems to be pot luck on how you cope with that medication.

Keep fighting.

Scott

[scott9Participant]

Hello Liz

I'm just back from Spain myself. Fortunately all went well. Sorry to hear your bad news. Do you see prfof Schey. He certainly knows his way round this disease so if it's him, you are in good hands.

I'm on Revlimid as maintenance and have been for the past year. Looks like I could have another couple of years remission with that if I'm lucky. Hopefully something else will come along in the meantime for us all.

Good luck.

Scott

[scott9Participant]

You are absolutely right Dai. The Euros, Olympics and days like yesterday take your mind off MM for a while which is a great thing.

Whoever is appointed manager at Chelsea has a tough year to follow especially as the team will have to be rebuilt soon, as you mentioned.

All the best

Scott

[scott9Participant]

Good luck Keith. Hope you can make your holiday. I know how important that can be as we are off to Spain on Monday and it would be a disaster if the myeloma got in the way.

Keep fighting.

Scott

[scott9Participant]

Hi Jo

Great to hear that you are enjoying yourself. We are off to Spain on Monday. Can't wait. I'm on EPO self injections as well but I have to do it twice a week. It's not too bad once you get used to it. It's certainly a lot better than having to spend a day once a month having blood dripping into you at the hospital. What a palaver though to go on holidays taking all the pills and injections along.

Keep well.

Scott

[scott9Participant]

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

[scott9Participant]

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 ie three Revlimid pills per week. Doing OK so far.

Good luck

Scott

[scott9Participant]

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

[scott9Participant]

Hi Dai,

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

Keep well

Scott

[scott9Participant]

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 helped to fill out the forms that they got for me for blue badge etc. I really recommend you get help for these blasted forms. I could not have faced filling them out.

Feeling terrible does mean that you are entitled to some help.

Good luck

Scott

[scott9Participant]

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. I actually had thought I would be a lot fitter again by now, but just have to accept my limitations going forwards.

All the best

Scott

[scott9Participant]

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

[scott9Participant]

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 best

Scott

[scott9Participant]

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

Cheers

Scott

[scott9Participant]

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

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