eve replied to the topic allogeneic SCT in the forum Treatment 13 years, 8 months ago
Hi Penny
First may I say I cannot help you,but I have replied to boost you up to the top again ,otherwise some post get lost
I think I am correct in saying Shirley has had one from a sibling and there are a few people in the process,I know Shirley does not post much,so look out for a girl in a cowboy hat LOL.I think she is based in…[Read more]
tom replied to the topic Starting CDT in the forum Treatment 13 years, 8 months ago
Hi Mavis
Well am sorry the Honeymoon is over.
I was on CDT prior to my SCT, so Bad news is it made me tired and weak:-/ Good News It was the start of putting me into remission:-D (still no hair loss) then SCT I had that December 2009 it was OK Ish?
Would I go through it again? well it has to be a big yes. oh and lost my hair when in…[Read more]
eve replied to the topic Spring is on it's Way! in the forum General 13 years, 8 months ago
Hi Chris
Congratulations on your forth coming wedding,you can say one thing about this B—-y Myeloma,it does put every thing into perspective.
Slim and I lived together for 30 years decided to get married before mm came along just never got round to it,finally set a date,but never made it as he ended up in ITU,so are marrage took place in…[Read more]
tom replied to the topic Water in the forum General 13 years, 8 months ago
Hi Dai
Thanks for that info I have had a little bit of dicomfort on my shoulder but I put that down to doing too much and or sitting in a drafty room at work ?
And re your new? treatment I have said before if anyone can do it your the Man 😎
All the best Dai
Tom "Onwards and Upwards"
tom replied to the topic NIGHT CRAMPS in the forum General 13 years, 8 months ago
Hi Valerie
Not sure how I missed this post?
But am Pleased it is getting sorted out, have a great time in Venice (Am jel)
Love Tom "Onwards and Upwards" xx
tom replied to the topic Spring is on it's Way! in the forum General 13 years, 8 months ago
Hi Chris
Pleased you are doing good (well as good as we can be) The blue badge is a godsend saves you money and park nearer to where you need to be (cept in Scunthope General Hospital).
I tried to get something from the State and all I got was £63 per week and when I went back to work after a few months I got told by tax man I owed them…[Read more]
tom replied to the topic Water in the forum General 13 years, 8 months ago
Hi Dai
The frozen shoulder being a new area of MM can you throw more light on that for me please as I have discomfort rather than pain in my right shoulder (lol i hade to check which side it was on L/R lol)
I hope you dont suffer too much on the early days of your treatment.
I dont kow if you buy water I used to as our water aint that…[Read more]
tom replied to the topic Hi Susannah, how is Michael in the forum General 13 years, 8 months ago
Hi Sue
Yes am sure it is all down to the cost :'-( and that makes me angry.
Good Luck for the bloods next week
Tom xxx
tom replied to the topic Hello I am a Newbie from across the Pond in the forum Newcomers 13 years, 8 months ago
Hi Terry
Re work ::::: I had my diagnosise in Jan 2009 was working still, I work on an Inland Dock loading and unloading Ships/Lorry's which is hard physical work and the treatment I had was CDT.
I had 3 cycles of that and was too tired to carry on working so went on sick may 2009 I had a total of 5 cycles of CDT and my stem cell transplant…[Read more]
eve replied to the topic Water in the forum General 13 years, 8 months ago
Hi Tina
Fluid is a must,I have the same problem getting water down Slim,I bought 2 plastic jugs with lids,and fill them up with week juice,and put in fridge,Slim found it easier to have a small glass,so kept it filled up constantly,he went through a stage of fizzy drinks,my attitude was anything that goes down,you will find your taste alter all…[Read more]
tom replied to the topic Hi Susannah, how is Michael in the forum General 13 years, 8 months ago
Hi Sue
Am so sorry to read that Michael is not able to fit the criteria to help him? how bad do we have to be to fit the bloody criteria :-S because for all intent an purpose we are all dying this Bloomim MM is at the moment a Terminal Illness so we should fit the criteria or am I just too thick to understand it all:-S
I dont know what…[Read more]
tom replied to the topic Water in the forum General 13 years, 8 months ago
Hi All
Well I love the Irish they are great people but I cant stand that black stuff they Make 🙁 but that said it might be better in dublin? who knows I just might try a trip to dublin and try a half?, hope you all are enjoying your 3 ltr of fluid ? lord knows how much vodka I had last nit lol
Love Tom "Onwards and Upwards" xxx
eve replied to the topic Hi Susannah, how is Michael in the forum General 13 years, 8 months ago
Hi Sue
So many years of fighting for drugs,again like Bridget it seems so unfair,I am amazed at these criteria they have,MM patients lay them selves out to become guinea pigs ,and they get choosy who they take,are MM patients part of the grand scheme or just a by product to be disposed off if you do not meet the criteria.
Sorry I sound so angry…[Read more]
andyg started the topic Newcastle info day 2012. in the forum General 13 years, 8 months ago
Hi all
My wife and I attended the info day at Newcastle yesterday. I would recommend everyone who has access to info days to attend one. The information and support provided is excellent. It was nice to meet fellow MM battlers and their carers. As a new member of the MM community I feel I'm more equipped for the journey ahead. My wife was also…[Read more]
jmsmyth replied to the topic Water in the forum General 13 years, 8 months ago
Hi Jo and Tom and all
Frank says to tell you to add guinness to the list!!!
Love jean xx
jmsmyth replied to the topic HERE WE GO AGAIN !! in the forum Treatment 13 years, 8 months ago
Hi Bridget
I have just read your post and I just don't know what to say. Others have said Bridget but you are an inspiration to us all – your courage, compassion and your love of life. I will pray that they come up with something you can try. My love and prayers are with you.
God bless
Love Jean xx
tom replied to the topic Terrified in the forum End of Life and Grief 13 years, 8 months ago
Hi Joe
I am sory to read about the sad loss of your Dad, I send my condolances to you and your family.
Stay Strong and know that your Dad is no longer in pain, remeber the good times and put the bad days to the back of your mind.
Keep in touch and hope all goes well for the funeral.
Regards Tom x
tom replied to the topic Just to frighten you all!! in the forum General 13 years, 8 months ago
And a lovely Photo it is 🙂
Tom "Onwards and Upwards" xx
tom replied to the topic Water in the forum General 13 years, 8 months ago
Hi Tina
Yes it is hard to do but i was told 3 ltr a day :-0 and that can include tea, coffee and or fruit juice I myself have also added to that list "Vodka,red wine and of course beer" ha ha.
Good Luck and Happy Drinking 😎
Love Tom "Onwards and Upwards" xxx
tom replied to the topic John is due for his 2nd sct in the forum General 13 years, 8 months ago
Hi Amelie
There is alays a chance for a long remission with the 2 SCT yes I know that some dont last that long but we all differ in the way that the treatment works, I honestley cant answer the reason why some work and some dont :-S Lord I wish I could.
Please take care and I wish with all my heart that John has a long and trouble free…[Read more]