Gill,

I have started a reply to you a number of times but nothing I can say seems adequate.

Thank you so much for sharing yours and Stephen’s story. My heart goes out to you. I hope that over time you can gain some comfort by knowing that you made the best decisions for both of you, and that you can draw on the good and happy memories of your…[Read more]

Hello J,

I don’t know if anything I can say is helpful, but my husband had collapsed vertebrae in his neck last year (C6 & C7). At that stage he had not been diagnosed but, after a lot of investigation, a plasmacytoma in his neck was confirmed, and this has now progressed to a diagnosis of myeloma. He had been having treatment for severe back…[Read more]

Hi Everyone

As some one who is a carer to my husband,and over a period of 3 years,and going to are local hospital 15 miles plus Kings in London 86 miles,now Royal Marsden in Sutton just on 100 miles,double with return journey I know a fair bit about it.

As Ellen says unless you are on Trials treatment by NICE is adhered too.
If your local…[Read more]

Great news! Long may it continue.

Thanks for sharing this encouragement.

Sarah

Hi Fiona

Well it is really nice to catch up with you princess lol !!!

It is a hard decision when it comes to an Allo ,if you are on Facebook and go into a private group called UK MYELOMA SUPPORT GROUP, Jet has put up some stuff on Allo plus there is a separate group,!!! So lots of information, Jet had hers over a year ago she only got 5 months…[Read more]

Hi Liz and Kevin

Thank you for your kind words,one of the reasons I posted this was for people to have an incite,because by the time you get to are position,all the upset and fear has gone.i suppose it’s knowing the situation before it’s confirmed,you do not ask,but wait to be told.
The bad thing about that is,since coming off Revilimide the…[Read more]

David what great news. Long May it stay there

Love Jean x

Well done David! Hope it stays like that for a very long time
Love Helen

Thanks for your replies, Angela, Megan, Helen and Fiona,

You’ve given me a lot to think about. I think the main message that comes across from everyone who has replied is that it’s sensible to keep my options open. I do have virtually all last year’s annual leave to use, as well as this year’s, so that gives me a bit of  leeway. My GP is…[Read more]

Hi Graham,

Good to hear from you. Well done on keeping positive. I hope your recovery from SCT is going well and you can feel yourself getting stronger.

We’ve had a much better week. M’s consultant suggested he took the cyclophosphamide over 5 days rather than all at once and he hasn’t felt sick since. He’s been eating well and has generally…[Read more]

Hi David

So glad for you,are the putting you on maintenance ?????

The bloods are good too,just watch out for those horrible DVT,read that e mail,wait till the wife goes out, lol

Seriously glad things are near normal long May it stay that way. Love Eve

Hi Fiona
How are things going!!! Is hubby responding to new treatment,or are you still at watch and wait,because you have not been posting I have lost track a bit,he came out of remission!!!???
Please correct me if I am wrong,the last 6 months have flown by,just when you do not want them too.

You must stop typing and delating response !!! We…[Read more]

Hi Carol

Sounds like you are getting there. Hope you get home soon. Re the vaccinations. Frank had his SCT March last year and only started the re vacInation about 8 weeks ago. I kept asking consultant and her reply was “the jury’s out on that one”. Then On one visit she said she had informed our doctor to start the procedure. So far he’s had 3…[Read more]

hi Tigger
I think you mum has had some poor information there are several treatments that will be available to her I have not had a stem cell because of renal damage first treat I had was thalidomide and DEX I got over 3 and a half years remission had velcade treatment last year finished last September which again has put me in remission again I…[Read more]

sorry David
didn’t mean to repeat myself x

WOW David

wonderful news its what we need to cheer us up long may it last for you as they when the going gets tough the tough get going that’s you
Love Jo

WOW David

wonderful news its what we need to cheer us up long may it last for you as they when the going gets tough the tough get going that’s you
Love Jo

WOW David

wonderful news its what we need to cheer us up long may it last for you as they when the going gets tough the tough get going that’s you
Love Jo

Hi Trigger

The best thing you can do is ring Ellen on the free number above 9 to 5 weekday she can answer your questions,the reason I say this is some of your mums information plus yours seems in correct,but I could be wrong.????

My husband has had the following treatment CDT CDV and CDR these are the three chemo,s that NICE allow if not on…[Read more]