Hi Tom

I can tell you lots of hospitals do not do Pet scans ,Babs told me the reason why is the amount of rays it has to use,this explains why Slims consultant is against Pet scans,he says it will not tell you what is going on in the Bone Marrow,but when you have no firm readings for PP or light chains,it’s a long time to wait between BMB,Slims…[Read more]

Hi folks
Thanks for your support it really means a lot.
Carol I do feel blessed four good years was more than I expected and to be honest it’s not that much of a shock to us.

I am being treated in Scunthorpe General under Dr Jalihal and the Velcade would as he said in 1998 be his first choice but at that time they wouldn’t let him.
As for the…[Read more]

Hi Pauline and Marc

Well a warm welcome to the forum, pull up a chair and get comfy, great folk on here that can and will help you both get through this.

Yes I got a bit "Blown up" when I first had my first line of treatment CTD then SCT all in December 09, and as of now doing great and Drug free 😀
Stay well

Tom Onwards and upwards…

Charlie & Mary

Am pleased all is well, and I bet you loved looking after the Kids.
as for the Levels I know nowt about them am sorry to say.

Keep well

Love Tom Onwards and upwards x

Keep on keeping On and you stay well, am sure some folk have escaped it with little side effects lets hope you are one of those.

Tom Onwards and Upwards xxx

Hi Gill and Dave

Am pleased you mad your choice, and I hope you get many a year out of it.
Good Luck in your Road to Remission.

Tom Onwards and Upwards x

And a Thanks from me Alex, I always wondered what is the best way to help bones when they are dodgy as my Grandkids call them.

Tom Onwards and Upwards 😎

Thanks for the Link Tom will have a read Lata

From one Tom to another, Onwards and upwards

Hi Eve
Well for me I think NICE has got too tight a hold on the why's and wherefore of peoples treatment.

I don't know how many are on the NICE panel nor how much they get paid?? but that must be coming off the central funds, I say let our Dr's and Consultants say what treatment is best for us.

Tom Onwards and Upwards xx

Hi Dick

It's not just sad,it's wrong!!

The fact is the treatments involved are excellent plus the best for most Myeloma patients. New patients in the right post code have the avaliblity of trials,but the patients that are not responding have little choice the consultant has no choice.

My husband had on trials MX1 was randomised for…[Read more]

Hi Helen

Good to here you are being pro active as young Tom would say, I would gladly have a bet with you,they will still make you wait,they know best attitude !!!!!

The Velcade takes so long because it ends up going to five different departments and if there not on the ball,or forget to send it to next department,!!! And as you say they…[Read more]

Hi Margret

Welcome,
Bonefos question I cannot help,but I was surprised you have been a drug so long,you do not give a great deal of detail,have you been Diagnosed with Myeloma or are you looking for an illness for symptoms????

With the drug you are taking plus quantity and length of time,it must have some effect,why have you been on them…[Read more]

Hi Maureen

Good to hear from you,it will do you both good to get away from hospital,I use to sneak Slim out a lot,as he hated the hospital and they had no day room,We use to spend a lot of time in the chapel .

I married Slim after 30 odd years together,are anniversary is 24 May married in ITU,we tried for 14 February but Slim was in…[Read more]

Mandy it dunt matter what junk you eat it puts the weight on before you lose it.
Can I just remind you to use Mouthwash please use it every time you go into the bathroom, every time you have nothing to do and every time you get up to walk around the room, use it as if its going out of fashion and hopefully like me you will have little mouth…[Read more]

Hi Jo

Yes we can wait as we know its going to be ok 😀 just means we will have a weekend of celebrations 😛 and that can't be bad can it he he.

Hope your still doing well.

Love Tom xxx

Hey Mandy

Don't rush that poorly bit lol, it will be here before you know it. Hope you are eating as much as you can and some as soon you won't want to eat.
Hope your X ray is ok, stay well and strong.

Love Tom Onwards and Upwards xxx

Hi Gill and Dave

It isn't a walk in the park but its a doable, I had mine in Dec 09 and am now still in remission and doing great thanks to my SCT.
Would I do it again ? In a heartbeat.

Good Luck with it all.

Tom Onwards and Upwards xx