Hi trish,

When kev had his sct April 2011 he was started on his vaccines in August 2011 I think one them was tetanus and then in oct: flu jab and in may of this year he had a jab for meningitis and was told he's up to date, hope that helps also this was all done through our GPs practice nurse,

Regards liz xx

Hi Amelie,

Glad to johns doing well on his second sct, kev had his first sct April 2011, achieved CR in the sept 2011, and the end April this felt unwell and it was confirmed in may that he had relapsed. He's now on velcade/ dex and hopefully second sct? He also managed enough stem cells for two so wouldn't have to go through harvest…[Read more]

Hi Mike

Well as you know,the patient does not get much choice,it,s either trials or treatment as laid down by NICE and all of this is still a post code lottery, If you are lucky and can find a Haemotologist that has a special interest in Myeloma and also has some perspective about the awful damage and pain it causes,physically and…[Read more]

Hi Amelie
Well i hope John has a good recovery,and starts to feel better,I do not envy you a winter in Denmark,but I suppose as we are use to wet weather you are use to the snow and cold,my husband spent many a winter in Denmark,one of his hobbies,was blowing wholes in the ice and diving,use to be in the Marines!!

I was interested in your…[Read more]

Hi Andy

Good luck with the Radiotherapy,
As to the catheter,well the question must be why did they put it in????loss of control or your condition at the time it was put in?????.
There seems to be grey area,s with your low back,chemo works on any form of cells,they know chemo has not worked to reduce your cells,so why have they not given you…[Read more]

Hi Eve ,
Thank you for the welcome .Ive come to terms with SMM especially after avoiding treatment for four years having been told CDT was imminent . Clearly I have researched SMM but have also kept abreast of relevant clinical trials ,an area which I have had expertise since 2005.
Clearly I have not been on treatment but I do know that there…[Read more]

And same from I and i wish you both a very very long remision.

Love and Hugs to you both

Tom "Onwards and Upwards" xxx

Hi All

Am Pleased it works for you David 😀 having those bottles in the fridge and facing you every time I go for the lemonade for my Vodka is a great reminder Lol

Keep the water flowing 😎

Tom "Onwards and Upwards"

Ah Thankyou everybody!

We walked into daycase today for kevs velcade we took a bag of goodies for the nurses and shared our news with friends also having treatment there, and showing of the photos, so you can imagine the talk quickly turned to grandchildren and for a while we all forgot why we were there! Even kev looking a bit like a cheshire…[Read more]

Hi Dai
Well you know this MM lark more than most I would say and am sure you want the levels to drop but a straight line is good so far 😀 , you will have to make sure you are BUG free and those around you are also bug free or just wave through the window at you.

Keep strong My Friend.

Tom "Onwards and Upwards" x

Congratulations to you all Kids let alone Grandkids enhance our Lives 😎
And I should know am on our sixth 😎

You will need a Cuddle chair like mine 😀

Love to you all and enjoy your new Granddaughter. xxx

Hi Mari and Steve

Well no rush to drag them out they must be comfy where they are 😀 so they will soon settle back in when SCT gets going 😎

Hope its a good phone call today

Love
Tom "Onwards and Upwards" xxx

Hi Liz and Kev
Congratulations on another granddaughter, Myeloma puts everything into perspective,for all the family. Also you appreciate the event a lot more when you thought you would only have the one grandchild.
I hope you have lots of first ahead as a family,first steps,first school,first boyfriend,and lots more. Love Eve

Hi Amelie

John is lucky to have enough stem cells for a second sct,and not have to go through another harvest,is any after treatment planned after sct. ??????

How long did John get from first sct to mm coming back?????

Am I correct you are based in Holland,do they have a criteria to follow or is John on trials,or is he treated more as an…[Read more]

Hi Mike
This is just a welcome to the site:-)

When I read your post,my own immediate thoughts were so selfish,one was we will have our own resident expert,as this is what you would become,you might not know much about Myeloma at present,you will learn,just to prepare yourself[just incase]:-P
Then my thoughts were for you as a person,and I…[Read more]

Hi Beverley,and all your respondents .
I am 64 and am a virtually retired Consultant Gastroenterologist and have had smouldering myeloma(SMM) since 2008 .I have been on this forum before but you seemed to have provoked a good discusion on SMM ,with some of your respondents highlighting diagnostic problems which reflect some of the questions…[Read more]

Mari

I'm so sorry to hear that Steve is having a hard time stem cell collection. I'm still new to this treatment (frank hopes to have SCT after his cycles of CDT are over) and no nothing about plerixaforbut I will keep everything crossed for him for tomorrow and pray that all goes well. Enjoy your holiday.

Love Jean x

Congratulations Liz and Kev and what a lovely name. Grand children are a joy we have just had 2 of our grand daughters over from Kent. Hard to say goodbye to them

Enjoy them they are a blessing
Love Jean x