[BADGERParticipant]

Hello Tony
sorry you have had to join but welcome You will find much help and advice here as well as moral support the myeloma help line is invaaluable they are able to answer most of your questions good luck with your journey
Regards Jo x

[TinaPParticipant]

Hi Tony,

I am 63 and starting my treatment on Friday 20th. I have also been accepted on the Myeloma X1 trial.

You will be a couple of days ahead of me, so I will watch your progress on here. I will let you know how I get on too

Tina

[tonyfParticipant]

Hello Dia, thanks for the welcome, no doubt we will swop stories over the coming months, good luck and thanks, Tony

[tonyfParticipant]

Hello Badger, thanks for the welcome, cant say that I am pleased to be here, but bowled over by the support. started the myelomw X1 trials on monday morning, so far no disasterous side effects, long may it continue.
thanks again for the welcome, tony

[tonyfParticipant]

hello Tina, Yes I started the myeloma X1 trial last monday, had a bowl of porridge, then took the tablets with water, included a soluable aspirin and the anti sickness tablets, then took the dog out across the countryside for an hour and half, fell asleep in the afternoon, did the same again today, tuesday. So far no disasterous side effects. fingers crossed it continues. I am at the Leicester Royal Infirmary, I find everyone including my GP and the surgery staff, the hospital staff, the consultants, receptionists, care workers, nursing staff are brilliant, even the doctor who had a real problem taking a bone marrow sample was good. Talking of bone marrow, I was given gas /air, very soothing!
Good luck for friday. Let me know how you get on.

[andygParticipant]

Hi Tony
Welcome to the group. You'll find out most things you need to know from your friends on this forum. Everyone's story is different and everyone's journey is also different. If you get stuck for advice then there's the helpline.
I myself was diagnosed in oct 2011 so I've not long started my journey. It's been a bit bumpy so far for me. Hopefully you'll have a smoother journey.
Best of luck with your treatment
Andy
(it's nearly 4am – a DEX night)

[eveParticipant]

Hi Andy
I have the same problem,and I am not the patient,cannot blame the Dex:-P
Wake up, and just cannot get back to sleep,usually play scrabble with my daughter in NZ but she is not always available as its 3pm over there.

How did the visit to the hospital go,??? Eve

[OutdoorsPaulParticipant]

Hi Tony
I was diagnosed in Aug 11 with light chains myeloma (Bence Jones)type,started off on the myeloma 11 trial which worked well and got me into remission but unfortunately my myeloma came back.Now on PADS induction and its working as my levels have come right down.I am due for Stem cell transplant (SCT) early June and allo graph transplant a little later.As most people have said its a good site to stay in touch with and we are all at different stages with our various MM issues. I'm only 40 so one of the younger end,always happy to help where can.
cheers Outdoors Paul

[shirleyParticipant]

Hi Tony, hello & welcome to our site,you have enrolled yourself to the best support group for myeloma,but please remember we are all at differant stages of this disease,i was diagnosed 3yrs ago with 1gg kappa,at the moment i'm in remission and doing ok,i do hope you find this website useful,gonna blow me own trumpet but we are a great group,were funny,witty,serious and sometimes very sad,but everybody on here are always here for you.I do hope all goes well for you,take care Shirls, 🙂 🙂

[DebsParticipant]

Hi there Tony

Nice to hear from you. I am on the Myeloma XI trial too..I got picked for revlimid and had 4 cycles of this before I plateaud and moved onto velcade for 4 cycles. Between the 2 they brought my pp levels from 50 down to 8 and I had my SCT in July last year. 9 months on and doing fairly well bar a few more coughs and colds than usual.

I found that the revlimid had limited side effects for me apart from a v strange taste in my mouth that made everything, even water taste odd. I ate like mad to try to get rid of it which was a bad mistake as I piled the pounds on!!!

Velcade was a bit harder and that exhausted me at certain times in the cycle.

Good luck with it and shout if you have any questions

Debs x

[andygParticipant]

Hi Eve
My blood tests came back good – hopefully when they check my paraproteins next week we'll see some downward movement – however I'd been feeling a bit under the weather since Monday and my temp has been rising. It was 38.2 today so after my zometa they did all sorts of tests to find the source of the infection. They think it could be my waterworks! I'm back again tomorrow so they can keep an eye on me.
Good news – my potassium level was ok so I've got some spare bananas now 😉

Andy xx

[HelenParticipant]

Hello Tony
Its a funny place to meet people, I too am on myeloma xi trial. I have oligo secretory light chain (lambda) mm and was diagnosed in feb11. I had 4 cycles of revlimid etc which took me to complete remission, then sct in August 11. I've been on the maintenance arm of revlimid since then and am slowly returning to fitness.
Hope your journey is uneventful.
Helen

[kaychappersParticipant]

Hi tony lovely to meet you. I too was on trial. SCT last September and doing well. Keep in touch with the people here. They will either have been through or going through similar stuff and are supportive and knowledgeable of this illness. Good luck one day at a time kay x

[CarolBradley1Participant]

Hi Tony
Just wanted to send a word of welcome although so sorry we have to meet here.
You must feel pretty rattled at present so hope this helps. I was diagnosed many years ago (2005) and after chemo and stem transplant last year I am now doing really really well.
Keep calm, keep your chin up – I was on the myeloma trial too and it does ensure that you not only get access to new drugs etc. but that you are monitored closely so any probles will be dealt with swiftly – eg. infections.
I have found this web site to be such a help when I was really worried and the people here are smashing and we all truly understand the worries, frustrations etc.
Thinking about you.
Carol xxx

[eveParticipant]

Hi Carol
Were have you been??? not heard from you for awhile .Hope it was sunny were ever you were.8-)

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