Hi Sarah I would like to add my welcome too. You have been lots of good info about sct so far and I am sure you will have more specific questions nearer the time. You have probably realised myeloma is a very individual disease and as we all react differently its hard to predict each persons response The one thing that is the same for most of us…[Read more]

Hi Sarah

You are more than welcome and am sure what with the treatment getting better they are thinking of downgrading it from Terminal to severe so am happy with that 😎

I see you ask about work? well Henry I was told that I had to stay off work till my (think) my 100 day check up, then I was told I should stay off work (mine is heavy…[Read more]

Hi Keith
Great news (though sorry to hear about the itching!). I'm doing well thanks, unfortunately I have to go back every month due to being on the Revlimid maintenance arm of my trial. But I think I am lucky to be offered it so I shouldn't complain!
Feel like this week has been a breakthrough as I haven't had a sleep all week (apart from the…[Read more]

HI Sarah,

Sorry to hear about Henry….rubbish news and I'm not surprised that it is hard for you at the moment. Life does get easier once you have had time for the news to sink in, and you learn coping mechanisms.

I had my SCT in July..I am 36. I have to say that I think one month post transplant is optimistic, but it really does vary…[Read more]

Hi there.

Helen, still in the Myeloma XI trial and doing well. The hair is growing…seems to be sprouting all over the place now! May even need a hair cut soon…lol!

Keith, as David says, it may be different consultant to consultant, but mine said that I didn't class as complete remission because my pp wasn't zero. Apparently you need to…[Read more]

Hi Roz

Sorry about your problem re Holiday's 🙁 is their no groups that you could join that help people with disability's to go on holiday,

Hope you can find a way as we all need a break from our own homes now and again

Love and Hugs ((())))

Tom xxxxx

Hi Sarah and Henry

Sory you had to join this Band of folk, but you have done the correct thingthe folk on here are a great help with words of comfort, advice and of course the well used "Cyber Hug"

I had 5 cycles of CTD leading up to my Transplant in Dec 2009.

The SCT was Ok, Not a walk in the park but OK, I found all the treatment Pain…[Read more]

Hi Everyone
First to Helen,make sure you do that trip.wonderful country,we spent three months there mainly to see family but did spend 3 weeks travelling in motorhome,from Christchurch to Auckland,one thing MM makes you realise is never put of doing things you want to do.:-)
Caro,hi have a friend in Hamilton,scouser who moved there years ago,its…[Read more]

Hi Gina

I am Pleased your Mum is in better spirits now and also pleased you have unlimited visiting to your Mum.

Good Luck for Monday and hope all moves go smooth.

Love and Hugs to you all (((()))

Tom xxx

Morning Glyn and Hubby

Gosh Glyn you were late in bed or an early riser looking at the time you posted 😀

Thanks for the Info on Hubby's route so far, he was lucky the Dr spotted it early as for the ups and down when in treatment think we all have that:-( always wondered why something they give you to make you better makes you Ill:-S but…[Read more]

ESSENTIAL only thing I can think of after a couple of G & T's. I A L next.

Jean xx

I've just realised what SCT is – and yes that is planned after 4 cycles of CTD ( it's surprising how quickly the acronyms creep in! ) and providing that I have a good response. Sounds as thought that is when all the hardwork starts -so a long way to go!

HAKA means challenge! This is what myeloma is !!
Caro

Hi Helen,
We're not from NZ, just had a daughter who fell in love with the country and met her husband there!
Carol

Hi Eve
We are lucky to have a daughter in Hamilton and it was a special occasion (always to NZ).I hope you get to Mapua as planned.
Sorry haven't replied earlier but have just started my CTD and coming to terms with the numbers of lyctic lesions in my spine/ head. Thanks for all your helpful advice. I have cards and emergency numbers…[Read more]

Hi Jo

Sorry to see your on the BIG Anti B's 🙁 but we know they will kick its A S S) (now lets see if i got away with that one Lol)

You will soon be better and forget all about the Anti B's

We are doing great just got a iccle cold of Baby Max 🙁 just hope i dont get his conjunctivitis :-/ but looking good so far (no pun intended He…[Read more]

Hello dear Tom

always cheerful advise I hope you are keeping ok I have hd a bad week very heavy Anti B's some sort of stomach bug hope its on its way ou now!!!
Big ((HUG))
lOVE jO X

hello Jim

Sorry you have had to join It must have been such a shock for you as it is for us all I think the first question is why me!! but you are only 40 where a lot of us are in our 50 and 60s we all have to be positive there seem to more drugs and treatments everyday soCHIN UP:-)
Love Jo

I know the Marsden is finally giving it subcutaneously but also that if you are on a trial it ISN'T available. Hopefully one day even that will change as there's no way I'd have velcade again unless it wAs subcut. The pn has been too uncomfortable.

Gina
So sorry to hear that. Must be so hard for you and your family.
I hope you have some time ahead to unite as a family
Debs x

Hi Glynis

A warm welcome to the site to you and your good Husband. I wish you a good journey on this MM trip to remission (and it gets their)

Love and Huhs (())))

Tom "Onwards and Upwards" xxxx