Hi Tom

Please could you send Bridget my good wishes and love too.

Dear Tom and others,

I have joined Face Book but am frightened to use it because of security worries. Have you any words of wisdom? Are there ways of using it without exposing yourself to too much risk?? Folk are always asking to be my "friend" and at the moment I just…[Read more]

Belated welcome from me too Tony.

Sorry you have had to join us, but at least you got diagnosed reasonably early which does help.

Glad you've been admitted to the Trial. Do hope it works really well for you. Is it with a view to have a Stem Cell Transplant later? Or maybe they are leaving that because of your age.

I am 67yrs and have…[Read more]

Good to see faces instead of black aquares, Scott and Teresa!

It helps to make the forum feel more friendly 🙂

Eliz
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P.S. Good clear instructions, Dai! Thanks for posting them.

Hi David
You know what they say "love is blind" LOL Eve

Hi Teresa

My thought are with you,do not bother replying individually unless it helps you,we all have some idea what you are going through at this time.

This is a very sad time for you and your family,enjoy ever day as much as you can,and any time you feel like unburdening yourself,if you do not want to do it through the site,lots of us have…[Read more]

Hi All

Now settled back at home. Not without its problems but I am getting lots of help, if very fragmented. I am now getting more mobile, if somewhat slowly. The pain is much better with the oxycontin.

I started on my second round of chemo on Wednesday, It would have been Monday if the ambulance had been booked! They have doubled the…[Read more]

Hi Jean
It looks if hubby has a bit of man flue bugs,if you feel worried about them before having a good holiday,for your own peace of mind,go to the doctor,s

Jean if you have an infection your pp go hay wire,
I would press for an early scan,I still find it hard to understand why a PET scan in not used in Myeloma,that shows any activity…[Read more]

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

Hi Mari
Have nothing to add about Velcade.
Did Steve only get enough stem cells for one chance,from what I can see for allo SCT,you would have to convince them its viable.They like a back to back ,your own sc then a few months later a donor .Eve

Helen
You just go and have a wonderful time,if you have not seen your sister for a long time you are going to find it very emotional too.Love Eve

Hi Helen
Looking at Elaine,s reply,I cannot help but think she has it just about right,we would all like to think that people will get a good run of collecting there pension,but it does not work that way.!!
As for the fact they are more concerned about your blue badge,well every company has to fill there disabled quota,you will then tick one of…[Read more]

Hi Lynda
I am on PADS induction which includes Valcade this "mixture" has brought down my PP from 2300 down to 37 after only 3 cycles so it works. (I got the myeloma bounce when I came out of remission i.e it came back during Myeloma 11 trail).So pass onto Pete to stay optimistic.
I am now lined up for stem cell harvest 23/24/25 may…[Read more]

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…[Read more]

Hi Michele
How are things going,did your husband make any decisions concerning whether to go for SCT??
How are things going in general.Eve

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

Hi Tom
Thanks for info,do not have a kindle but do have an i pad ,so will look on there.
Good to see you are doing well,try not to worry about smm.why worry about it if you cannot do any thing about it,Ask for an I pad for next Christmas they are amazing. Love Eve

Hi Wendy
I thought the Myeloma X1 trials were world wide with all data being combined and results published world wide,to come up with results that will eventually be accepted as given results of CTD against RCD.May be I am wrong.Eve

Hi Teresa
I had problems posting that picture,I tried one of Slim and me sitting together,and just got his ear and mine,resorted to dog as only picture i could fit in,there are instructions on how to do it at the start,the web team will help you,you can contact them by E Mail,or someone reading this might come on board with a solution.
I get…[Read more]

Hi Andy
my local hospital is Canterbury which is 15 miles away,but the nearest hospital for SCT is kings in London. That is were the problem lies for most people on the SE Coast,but as I said my daughter lives nr Sevenoaks,so Camping on her drive,I wonder how much she will charge me:-/

I do not know if its any help,Slim had low potassium ,and…[Read more]

Hi Lynda

Good to hear things are OK with Pete,I think we all feel the same,just want a result and an ending,but it is early days for Pete.

I know he will have to go the hospital more,but if it works!!!!is Pete having sub cut or infusion???,Slim had to go,for blood test morning then infusion afternoon,the actual injection takes all of 3…[Read more]