[tonyfParticipant]

Good luck with everything Tom, it will all too soon be a distant memory.
Hope it all works for you, just as it did for me.
Regards
Tony F

[tonyfParticipant]

Well done Chris, just keep going. My pp is at 1.8 following my SCT in February, gradually getting back to normal. Not seeing the doctor until August.
Good news, hope work gets you going.
Regards
Tony F

[tonyfParticipant]

Oh Karen that's brilliant news, you were looking more than a little worried when we saw you on Thursday.
Well done just keep going.
Kind regards
Tony F

[tonyfParticipant]

Hi Tom and Michele.
Can I join in with the good news?
My last hospital appointment was on Thursday last. I had my SCT early February, had decided at the previous appointment not to go on any maintenance regimes, so have been drug free, except for some antibiotics since February.
Had a sleepless night before Thursday ( that's normal for me before any appointment ) so the good news my pp is down to 1.8, doctor tells me it probably won't go much lower, now go and have your 'baby injections' and get on with your life, come back and see me in 2 months………..no more drugs, no more treatment, just a monthly penidronate infusion! Wow, is there life outside? have to go and find out!
Hope it continues.
Like Michele, I hope that this encourages everyone.
Thank you everyone for being there and good luck to you all.
Regards
Tony F

[tonyfParticipant]

Good luck with the whole process, hope it goes well
Regards Tony F

[tonyfParticipant]

Hi Sara, is this the same survey that was mailed out a few weeks ago? If so I've done it.
Regards Tony F

[tonyfParticipant]

Hi Anthony, I will add my welcome, not where we want to be, but here we all are.
Strange these comments re paraprotien readings, at worst mine were at 38 now after stem cell transplant they are at 2.2 and I am in partial remission.
You mentioned BMB, I attend the Leicester Royal Infirmary, I've had 1 BMB and I was given gas and air while they struggled to do the procedure, the gas n air really gave me a high and obviously helped with any pain, great. I thought that gas and air were the norm but obviously not.
I am sure that 24 June will come round quickly. List all the questions that you want answering, hopefully you have someone to go along with you.
If you get concerned about anything the staff at Myeloma UK are really helpful.
All the best for the future.
Regards Tony F

[tonyfParticipant]

Morning Jacquie.
Hope it all goes well for Geoff over the coming days, not much fun being isolated!
Not much fun for you either, rushing up to the hospital.
Will think of youboth.
Regards Tony F

[tonyfParticipant]

Hiya Pauline and Mark, along with other forum followers, I would like to add my welcome to you. Not a place any of us want to be, but here we are, you will get a lot of support from here, lots of experience and knowledge.
For my part I was diagnosed in march 2012, I was lucky it was a very quick diagnosis, thanks to my persistent GP, I had no bone problems, lucky. Was put on Myeloma XI trials for 5 months, no further drugs then a stem cel transplant early February, not a pleasant experience, but you live with it and come out fighting at the end of it. Now a few months down the line I am in partial remission waiting for my next clinic appointment early June, wait and see what they say!
Best of luck to both of you.
Regards
Tony F

[tonyfParticipant]

Dear Dave & Gill. I am sure that you have made the right decision. I hope it all goes ahead inthe next couple of weeks.
Remember if you have any fears about the transplant process or any worries about the after effects, just ask the forum.
Good luck.
Regards
Tony F

[tonyfParticipant]

Hi Mandy, hang on in there, sounds as though you have the right attitude to get through it all, regardless.
I know where you are at, was there earlier in the year and am ok now, even the hair has come back. Any hardships are only short lived, just think when you get home the weather may possibly be summer, sunny and warm, and you can recoup in the garden!
Best of luck
Tony F

[tonyfParticipant]

Hello Gill and Dave. I am 68, was diagnosed end March 2012. Had lenalidomide, cyclophosphamide, dex and ranitidine for five months, no further drugs until December when there was an aborted attempt to harvest stem cells ( got an infection ) harvest restarted mid January with the transplant beginning February.
Like you Dave during those months that I was not taking drugs I felt fantastic, there was a lot of family stuff going on and I just joined in, great.
Right from the outset the ambition was to go for the stem cell transplant, so I just went for it!
The transplant team gave us the worst case scenario regarding the effects of the treatment, but I only felt rough for about a week, stayed in hospital for just about 3 weeks and recovered at home. Within a month I was country walking the dog and driving short distances, took a while to visit the supermarket and socialise, but now it's back to normal.
Last visit to clinic told me that I am in partial remission, all bloods ok, parap 2.2, hoping next visit will be even better.
I admit to still feeling occasionally fatigued and do worry if the SCT has been a success and worry about the long term.
I don't regret having the SCT, if I was in your shoes, go for it, short term feeling rubbish will soon pass.
Hope you make the right decision.
Regards Tony F

[tonyfParticipant]

Hello Buzzin Helen, you really are Buzzin!
Let me tell you a little tale about open plan clinics, back in January prior to my stem cell harvest I was in the day clinic for my monthly penidronate infusion. ( i chat to everyone, so would probably get on your nerves! ) Some weeks later, after the stem cell transplant, I was recouping at home, the post arrived and there was a letter from the hospital telling me that I had come into contact with a TB sufferer, not something you want to hear after going throu the stem cell treatment. I later determined that it was at the day clinic that the contact had been made! Needless to say I had all the checks, yet another blood test, and was found to be clear, but it did give us a few sleepless nights, as you can imagine. There were a lot of people having the tests done, so it must have been a real aggravation for the hospital.
Next time I attend the day clinic I'm wearing a face mask! haha
So if the mm doesn't get you then your fellow patients just might!
Regards
Tony F

[tonyfParticipant]

Wonderful, how right you are about the appreciation of the smaller things in life.
Glad that you were able to do it, doesn't it make you feel good!
Regards
Tony F

[tonyfParticipant]

Dawn.
So sorry to read of your diagnosis, not the place that you really want to be!
People here are all in various stages and are more than willing to share help advice and experiences.
If you feel like it let us know your treatment, don't wish to pry but maybe we can be of support.
Regards
Tony F

[Author]

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