Hi Everyone

Nice to see everyone getting in the Christmas spirit,we have already started eating the Christmas goodies,so might have to buy some more

I am still looking for some of the Christmas decorations???,I think Slim has hidden them away!!

He has a weekly visit for bloods,plus if he needs platelets or bloods another visit,a visit for BMB…[Read more]

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 Carol,

We can’t quite remember when Phil had these tests done but I think they were more to do with the SCT than with the harvesting. I think that you harvest the cells after your treatment has finished and then even if you do not go on to have the SCT immediately the cells are ready for when you need them. I am sure your consultant will let…[Read more]

Hi Tom,

Phil and I were both sad to hear your news but we know you will face this part of your journey with your can do attitude that has so inspired both of us since we joined this forum.

Phil had Velcade with dex and doxorubicin as his first line treatment and had very few side effects and responded well to the treatment. Neuropathy, as has…[Read more]

Hi Carol

I can only tell you Franks experience. SCT was decided but before he was given date for procedure he had to go through quite a lot of tests and heart and lungs were two of them. Has your consultant not mentioned it. Maybe on younger people they don’t carry out the tests. Mind be worthwhile to mention to consultant. Hope all goes…[Read more]

Hi Andy,

I hope the eventful holiday in Belgium was full of good events?

Good luck with cycle 22 and fingers crossed your PPs behave themselves.

Megan

Thanks Stuart, I do find them helpful, especially my own – so Phil and I can keep track of what has happened since his diagnosis 🙂

Megan

Hi Stuart,

The new forum looks very nice. I was wondering if the blurbs we wrote about ourselves could still be found somewhere? On the old forum if you clicked on the picture (avatar) that people had you could see the info they had provided about themselves but I can’t seem to find anything similar on this new forum.

I often found this…[Read more]

Hi David,

That is wonderful news especially as you haven’t noticed any side effects from the Rev.

Will you be doing a set number of cycles?

Megan

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…

Hello Pauline and Marc,

I am so sorry you have had to join this forum but it is a wonderful place to ask questions and get support, everyone is very helpful and friendly.

My husband Phil was diagnosed with MM a year ago at the age of 43 and it was a shock. He started feeling unwell with back and rib pain in November 2011 and it took six…[Read more]

Hi Wendy

I read your blogg and you have had a terrible experience. I remember feeling elated when I read that a mistake had been made in your test and cannot believe that such a terrible mistake could be bade. I hope that that your next appointment brings better positive news.

Hope your mums wrist is ok

Best wishes Jean

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