[comfortablynumbParticipant]

So sorry to hear about poor Sandra. I’m on Fb all the time. Is there a myeloma group?

[comfortablynumbParticipant]

Avatar seems okay now. But still can’t see where my personal info in my Profile has gone.

And my username has gone weird.

And when I try to edit a post, the old text disappears.

• This reply was modified 10 years, 10 months ago by  comfortablynumb.
• This reply was modified 10 years, 10 months ago by  comfortablynumb.
• This reply was modified 10 years, 10 months ago by  comfortablynumb.

[comfortablynumbParticipant]

Hi. How do I restore my Avatar and where can I find my profile please? It seems to now be empty.

[comfortablynumbParticipant]

I had my SCT in 2009. I am feeling better than ever and work 12 hour shifts – all very physical work. I also play in a wedding band and have a normal life in every way.

I hope you make the right decision and that all goes well for you and your mum. X

[comfortablynumbParticipant]

Tom. I was told by one consultant that once you have had just one infusion of Zometa, you never need it again. Then another consultant told me it was best to keep on it as it was thought that it may fend off relapse. There has never been any suggestion of ever being able to stop taking it. (I get it every 2 months). This is East Surrey Hospital, by the way.

Debs. What does "it changes the way the bone turns over" mean please?

John (Comfortably Numb).

[comfortablynumbParticipant]

I have been on Zometa since my stem-cell transplant in 2009. I have been very well since the transplant (other than catching coughs/ colds every five minutes which never used to happen). I have also had loads of dental work recently with no problems caused by Zometa (ie Necrosis).

I have had intravenous Zometa every two months since Sept 2009 and I have never had any side effects at all from it. I was told when I first started having Zometa that there may be side effects at first, but that these would subside after my body gets used to it.

I hope this helps.

Best wishes to you all.

CN

[comfortablynumbParticipant]

Dear Carol.

I hope you feel better today. I am taking a bit of a risk, but I thought I'd share a story about my Dad. He was an extreme practitioner of 'gallows humour" as you will see, but there is maybe a bit of inspiration in there as well.

I sat with him in front of a grim-faced Consultant, a nurse and a McMillan nurse to receive the results of a biopsy he had had on his lungs. The Consultant said what we had expected – you have lung cancer – and he began to put a series of questions to my Dad. Part of the questioning went thus:

Consultant- Do you smoke?
Dad- Yes I do.
Consultant- Have you smoked all your life?
Dad- No, I didn't start until I was 12.

:-0

[comfortablynumbParticipant]

Thank you both.
My Mrs thought they said that the cells would only be stored for two years and then they "go off". She was probably thinking of cake or something.

Cheers

CN

[comfortablynumbParticipant]

Hi David. Hi all.

I have had zero paraproteins, or at least "immeasurable" amounts since my stem cell treatment in September 2009. The Consultant I saw most recently told me that the levels may have now increased, and I am waiting for the definitive result.

My question was going to be – At what level do they start treatment again? – but I see some of you have been quite stable with levels higher than mine.

Anyway, best wishes to you all.

CN

[comfortablynumbParticipant]

Stay positive, fella. Good Times.

Nile Rodgers from Chic has cancer – like us! Watch him play and it'll cheer you up!…

http://www.youtube.com/watch?v=mMqRxDZpWIg

[comfortablynumbParticipant]

My SCT was September 2009.

I still take the anti-histamines and it sorts it out.

I get Cetirizine on prescription, but you can buy it over the counter in Boots, etc. It's what sufferers take for hay fever and other allergies. I am not medically qualified to recommend it for John of course, but I hope you can ask his doctor about it.

[comfortablynumbParticipant]

I think bone cancer and bone marrow cancer are two separate things.

I saw little kids having treatment whilst I was in the Marsden. It is very humbling.

[comfortablynumbParticipant]

Since my auto graft, I have had skin problems – not as bad as those you describe – but an annoying itch usually starting around the feet and moving around the body in stages. I take an anti-histamine for it which is prescribed.

When I first got home from the hospital, I was very itchy and after showering, my skin would go blotchy red/blue!

To be honest, the doctors haven't seemed that worried about it although they have admitted it is probably a side effect of the SCT.

I hope this helps.

Has John tried anti-histamines?

[comfortablynumbParticipant]

Nutshell reply…

Felt very rough from about two days after stem cell transplant. Sickness. Not wanting to eat. Tired.

Went home feeling weak, tired and sick.

Felt better about four months after stem cell transplant.

Been feeling better than ever since then (18 months).

CN

[comfortablynumbParticipant]

Back on the original subject, I spoke to the consultant about this at my two-monthly checkup.

He said I have slightly lowered calcium levels and this might be something to do with it. But he said it is more likely to be repetitive Stress injury due to the guitar playing.

He even suggested I might give it a rest for a while. :-S

Anyone coming to the West Chiltington Beer festival in Sussex on Saturday will see me with my band the Ant Hill Mob on at 20:30. Then I am at The Sun pub in Godalming Surrey on July 30th with another band called "Fraize". And on August 26th at the Garibaldi pub in Redhill Surrey with my blues band – Midnight Mover.

Sorry doc.

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