[mhnevillParticipant]

Hi John

I am also in a "wait and see" stage having been diagnosed last October following the discovery of a tumour on my spine which was removed in LGI and followed by Radiotherepy. I am 66yrs old.

I am very happy to wait and I am in no hurry to begin chemotherepy – although I do take Bonefos. Having read very widely around the subject there doesn't seem to be any advantage to rushing into what, if you intend to have SCT, is a very punishing regime of treatment. For myself, for all sorts of reasons, I can't see me going down that particular route.

My paraprotein level was 9 on the last blood test and, although a little aneamic, there doesn't seem to be any other problems at present. I wonder what your pp count is?

These are all very difficult decisions aren't they. My very best wishes as you traverse this minefield which is Myeloma.

Mavis

[mhnevillParticipant]

Hi

Thank you for this. Just the information I needed.

Mavis

[mhnevillParticipant]

Hi Sarah

So sorry to hear that Gordon's SCT hasn't worked. Thank goodness there are more options about these days. Fingers crossed that they find a good combination that works.

All good woshes.

Mavis

[mhnevillParticipant]

Hi Gill

Just to say we will all be rooting for you.

Keep strong.

Mavis

[mhnevillParticipant]

Hi Kay

Just wanted to send good wishes. Hope your wigs prove a knock-out!

Love Mavis

[mhnevillParticipant]

Hi Peter

Don't know if you read the American Site "Myeloma Beacon" but they were sugesting that it isn't licensed for all US yet, but said UK would follow. You do wonder why things take so long when it is obviously going to make things better for all of you on Velcad.

Take care.

Mavis

[mhnevillParticipant]

Hi Dai

I can really feel your frustration. No, it is not too much to ask for that someone reads your feed-bcak sheets and has a sound conversation with you. It doesn't sound like rocket science you are asking for. And is it really that Drs are so busy? I don't know, but do get the feeling that Drs find time to do what they think is important. You would think, by now, with all the computer technology, that someone would have invented a programme that enabled the feed-back to be processed in a way that only took the consultant seconds to read and evaluate.

Do hope that this dreadful time is going to be worth it by being followed by a really long remission period.

Do hope your fingers are letting you keep playing. I have enjoyed your site and your songs.

Very bast wishes.

Mavis

[mhnevillParticipant]

Hi only me

I've just caught up with these posts. Don't be down hearted about your Mum not progressing straight to SCT. Not everyone has a long remission following it and the immediate effects can seem pretty horrid. At least it isn't ruled out for her. For myself, I am in no rush for any treatment and have decided, at 66yrs and with other health issues, that if suggested to me, I wouldn't want to go for a SCT. (Of course i might change my mind, but i don't think so.)

I do hope you Mum is tolerating the Velcade well without the dreaded NP.

Very besrt wishes.

Mavis

[mhnevillParticipant]

Hi David

So pleased that things are working out for you and that the SCT worked.
Enjoy the next three months and forget you are someone with this dreaded MM.

Mavis

[mhnevillParticipant]

Hi Dai

This song is great. Makes the idea of a Concert seem real. Any progress on that?

All best wishes.

Mavis

[mhnevillParticipant]

Dear Min

Do hope that Peter improves soon and that he continues to manage to get some sleep in Hospital. I always think if you can sleep it helps.

God bless you both.

Mavis

[mhnevillParticipant]

Hi Keith

Can I join the others in wishing you a good break before your next SCT. Do hope while you are away you can feel like a "normal" person for a few days!

Very best wishes for all the future holds.

Mavis

[mhnevillParticipant]

Dear Bridget

I do hope that you got a satisfactory plan of action for your pain at last. I feel so cross that your GP doesn't take your pain more seriously. He should live with it is my feeling. I know they can get busy, but it's not as if you'd make a request for more help if it wasn't necessary.

All love.

Mavis x

[mhnevillParticipant]

All the best Dia! Keep that music coming!

Good luck for the forthcoming meeting. It is "our life in their hands" isn't it!

Love

Mavis

[mhnevillParticipant]

Dear Mari

Great to hear of Steve's success. Congratulations to him!
Thanks too for such a positive and encouraging post.

I was also diagnosed following a tumour on the spine (Sept 10). I have not gone for early chemo, but it remains there as a threat/promise! Can you remember what Steve's paraprotein readings were when he started on chemo?

May Steve's remission be very long and his energy levels remain high.

Love to you both.

Mavis

[Author]

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