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 Tom

That is very informative and clear. I always read the new articles as they are posted. I am particularly interested in personalized treatment for myeloma patients based on genetic abnormalities, especially as I work in medical genetics. I think there seems to be huge advances now and not having started treatment yet it makes me feel more…[Read more]

Thanks for this Alex,

I have printed this off as Phil would like to try it to see if it helps. Phil's back continues to improve although some days are better than others. If he can avoid having the kyphoplasty he would like to so hopefully these exercises will help him to continue to strengthen his back.

Megan

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]

Thanks Tom I appreciate that. Will order paperback

Jean

Hi Tom

I had listened to an article on diet on radio 4 by a presenter who has MM and they talked about Mediterranean diets (Wendy posted link on Facebook ). So when i read your post i was very interested so I went on to Amazon to order the kindle version of it and this was the message that popped up

This book is currently unavailable…[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

Tom
I bet you both can't wait fingers crossed
Love Jo x

hi Jean

hope all is well for you and Frank havent heard from you for quite while
Lovc Jojo x

Hi Eve

I also am "Thick Skinned" but I like to say to folk "You wont bother me because I am Thick Skinned" and that Gap between the two words works wonders for me Ha ha. I know you have a soft centre 😀

And trust me the Vodka is Good for well me Lol

Love Tom xxx

Hi Mandy,

I am glad to hear you are feeling so positive and strong. Hopefully you have had your second lot of stem cells by now and then it is just a waiting game, watching your blood counts drop and then the happy day when they start to climb again 🙂 My husband Phil was confined to his room for about two weeks when he had his stem cell…[Read more]

Hi Dan,

It is great to read such positive news for you and your Dad. I don't have any experience of a second stem cell transplant but I think Eve is right that the general outcome is approx half the remission time as was achieved from the 1st transplant, as your Dad had quite a long remission the first time this bodes well for the second…[Read more]

Hi Helen,

Velcade seems to be particularly annoying for wait times. Phil had to go in for the blood tests in the morning and then they had to wait for the results of the tests before they would even make up the velcade and then you had to wait for the velcade to be delivered to the ward and then you had to wait for someone to inject it and…[Read more]