[tonyfParticipant]

Doesn't it just everything revolves around that next appointment!
Keep looking forward to the time when you can have a rest from it.
It took time but I don't go back to the clinic until November, bliss .
All the best
Tony F

[tonyfParticipant]

That's what we are here for! Support.
Good luck with the treatment, now that it is about to start I hope that you feel better about your situation.
Try not to let things get you down, think positively, a smile works wonders.
Best of luck, keep us posted.
Regards
Tony F

[tonyfParticipant]

Hello Dave,well done, they certainly shot you through the process very quickly, and it would seem that it's been successful, well done, you must be a tough old bird!
As a clue to a way forward, I had my SCT in February,decided against any maintainance drugs, take nothing except a daily Adcal and a monthly penidronate infusion, feel good, had my first set of baby injections and am free to travel and enjoy life.
Do get a bit tired,but I'm 68 years old so put it down to age!
Will you go back full time or do it in easy stages?
Whatever you do best of luck.
Regards
TonyF

[tonyfParticipant]

Oh dear Sue, what a mess. Some kind of chaos that a few months ago you never even dreamed of.
First of all welcome to this lot, we are not a bad bunch, whatever this horrible disease throws at you someone here on this forum has been there and hopefully can answer your questions.
I'm sure that after seeing the specialist the way forward will be clearer. Have you got someone who can go with you? I still always write questions down to ask when I attend clinic.
As far as financial aid is concerned try talking to Macmillan nurses, they may help. Or as Andy says Myeloma UK will help all the way.
Don't go reading to many other web sites, they will frighten the life out of you.
This is such an individual disease and therefore an individual journey, we are all at different points, and each response to treatment is different.
I was very saddened to read your story.
But hey, you have life.
The best of luck with everything, keep us posted.
Regards
Tony F

[tonyfParticipant]

Thank you Jean, yes it was good news, very pleased don't mind still having the penidronate.
You're right hope that Frank can get his thoughts away from this MM.
Lets try to enjoy this lovely weather.
Regards
Tony F

[tonyfParticipant]

Thank you for the support, yes a sleepless night! early appointment at the clinic, but they were running really late.
Good news is I've been signed off for three months! Still having the penidronate once a month, until March next year.
Have to give a blood test part way through September, so they can keep an eye on the levels. But back to the clinic in November, wow!
On the subject of a late running clinic, the place was heaving with people, of all ages. Maybe folk are being diagnosed more readily, maybe the treatments given are working and prolonging life, who knows. It was the same situation upstairs in the day clinic where I have the penidronate infusion. Perhaps Leicester Royal have got to look at increasing the size of the departments and clinics.
Thanks again for being there.
Regards
Tony F

[tonyfParticipant]

Jean, thanks for your well wishes for Rob, I hope for his sake and the other 20,000 riders that its not too hot.
Regards Tony F

[tonyfParticipant]

Hiya Jane, I would be a bit cautious about venturing into London on Sunday I reckon it's going to be very busy.
If you do go in, we will be around the Mall, whole crowd of us wearing myeloma tee shirts!
On behalf of Rob thank you for your wishes.
Regards Tony F

[tonyfParticipant]

Maureen, on behalf of Rob thank you so much for your kind donation, yes it's all going to an excellent cause.
Hope Rob does it, I will let you all know.
Regards
Tony F

[tonyfParticipant]

Hi everyone, spoke with Sarah yesterday and completed my questionnaire, quite painless really!
Yes I agree with Eve & Karen it really is important to make doctors more aware of myeloma.
So please if you have not responded, do it now.
Regards
Tony F

[tonyfParticipant]

I was told drink anything but easy on the coca cola!
Try blue top milk, good for the bones as well as kidneys.
I add lemon barley water to mine.
How you doing with the dex, it used to wake me up at 3 in the morning, I would go down for several cups tea.
Regards
Tony F

[tonyfParticipant]

Garry, so sorry to hear about your sister Sue.
My condolences to you and the whole family.
Tony F

[tonyfParticipant]

Morning, I'm sure you will contact a nurse and ask the right questions.
This is just an aside, I had my stem cell transplant in early February, 6 months later, I had the first round of my baby jabs, would one of those jabs be for chicken pox? There were so many given at the sme time, I can't remember what they were all for.
Best of luck
Tony F

[tonyfParticipant]

Hi Peter, welcome to the place none of us want to be at!
Sounds as though you have had an early diagnosis, that's good!
I had a quick diagnosis, before anything really untoward started happening, I was put onto the Myeloma XI drug trial for 5 months, eventually had a stem cell transplant, now 6 months later I am in remission.
It's a difficult journey at times, sometimes one step forward two steps back,
The people on this site are great and will answer any questions you may have.
Get in touch with the folk at Myeloma UK they will furnish you with all sorts of info, try to avoid getting onto to many other web sites, it'll scare the life out of you!
Good luck.
Regards Tony F

[tonyfParticipant]

Hi there, that doesn't seem right to me. Your husbands temperature is high.
Contact the hospital.
During the early days after my stem cell transplant I passed out on three different occasions, mybloodpressure was fine lying down but if I stood up quickly, I went out like a light!
I'm sure he would prefer to e at home but better safe than sorry.
Regards
TonyF

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