Dai
Slims writing home about his HL,4 hour job,veins thinning as HL progressed,then getting it round a bend,head honcho called twice,Slim coming up looking like death warmed up,saying he will never never have that done again.( may be that,s why his HL is still in).
I think it does vary from patient to patient,but as Stephen has had one before…[Read more]

Tom
You do not need luck,I can see you standing there with a big red box in front of you.Got to give them an angle,EG terminal cancer,want to take the wife on holiday of a lifetime will donate some money to Myeloma uk for all the good work they do.Can I fill your CV in for you LOL:-P 😉 🙂
I forgot the best bit,good looking guy with a cheeky…[Read more]

Hi Helen
Just to save any mixup its not Kings I am talking about when I talk about 1 designated nurse.I am talking about the south east England corner,Margate,Canterbury and Ashford if the information I was given is correct they only now have ONE designated Myeloma Nurse,use to be 4 and because of cuts it,s down to one. Eve

Great news Mari, Stephen has done well to get to 2.1m… exactly the same as me. Due to my extended week on the harvester my Hickman Line fitting had to be moved but they had already booked me in for my Mephalan for the following Wednesday (presuming my HL had been fitted on the previous Friday).:-P

So I had to have my Mephalan and rinse…[Read more]

Hi Tina

A holiday is what you need away from the Myeloma Bubble,Lets hope for 10 days of sunshine and you coming back in the right frame of mind to tackle the next stage.love Eve

Hi Everyone
Amilea in UK first line treatment for people not on trials use to be CTD then SCT or not,then no maintenance!!!!,do not know if its changed but trial people had a lot more options this is why trials are best.

Helen it is finding out information that is my problem,I do try to do as much research as possible,as nice as the nurses are…[Read more]

Hi Vicki and Colin
Good Luck with the injections and the pain is ???? but copeable (not sure if that a proper word lol) but the more pain the better seems you get more cells the more pain you have 😎 its only intermittant when the cells are shoving themselfs out into the bloodstream.

Hope the collection is done all in one day 8-)…[Read more]

Hi Mike
Think I was 53 when I found out ??
But a warm welcome to the site ask away and if you need to moan winge and nearly cuss feel free this is now your sounding board.

Where are you or will you be treated as some one on here might be having/had treatment at your area and can give you a heads up on that.

Stay Strong Mike and Good Luck…[Read more]

Hi Tina

Well you have a good rest before sept and am sure your face is cute I lost my Fat Face soon after stopping CTD but it did come back more than once lol.
Keep well

Love and Hugs

Tom "Onwards and Upwards" xxx

Hi you all well how Elaine puts up with me?? I ought to get Elaine to start a thread on here Lol

And Thanks for sending me your Luck am sure I could throw the MM into the show and bring it into the forefront:-D

Love Tom "Thank you but No Deal" xxx8-)

Hi Dai well done you and thanks for sending the sun to us here in Sunny Scunny 😎 but I think av burnt me bald head ?

That "Onwards and Upwards" Chap x

Hi Vicky and colin, hey I get tired and I aint having any treatment am sure its just a MM thing or old age (well for me anyways lol) and yep the Nurse is correct she will make Colin Poorly but trust me its well worth it 🙂 as for your cold well Elaine kids and grandkids had all that even when I was at my lowest and thank the lord none was passed…[Read more]

Hello Tom
I wish you all the luck in the world I am sure you will make it
love and ((hugs))
Jo x

dear Liz and Kev

what wonderful news a new granddaughter she will bring more light into your lives
Love Jo x

Come wind and rain, blow and drench,
Drizzle and fan the leaves on the trees
For I am well and well enough
To take whatever you bring with ease
But Summer is here despite your trials
And look the sun has found a space
That I may walk my garden path
Enjoying the warmth from Sol's bright face

Hi Eve,

All's well here and it looks like…[Read more]

Hi Amelie,

When Calgene were granted their European licence the 7% risk was not known… that evidence was gathered during the first couple of years in use. The European licencees then asked for further evidence/trials from Calgene who decided instead to withdraw Revlimid as a partner drug and maintenance drug to concentrate on its values as a…[Read more]

I asked my consultant about Curcumin last year, just as I was about to start my Velcade treatment. Unlike her she gave a big sigh and placed her hands on her desk. Not verbatim but this is the gist of her reply:

'I am sure that there are a number of supplements and vitamins that will help Myeloma patients with their general health… but they…[Read more]

Hi Andy

So glad to see thing are going looking up,I would go for all three big time, I know even without MM back problems in the low spine,cause a lot of problems so I hope this treatment does the job,and gives you some of your life back.

Hi Mari
Yes they do not hang round at Kings,Slim was due the same ,Hickman line day 1,then other events took over and he came out of hospital.

So glad you are managing that holiday,it will be the best thing in the world to build Stephen up ready for his SCT,and give you a well earned break before you start the next round.

A few months ago…[Read more]