Hi Jet

Nice to hear from you,must have been heavy going with back to back SCT,they do say it is the best thing to a cure.Have not heard about vaccination for shingles,but do know if you catch it early,have less side effects.
I believe you have to have all your childhood injections again with donor transplant:-S Helen got whooping cough,seems…[Read more]

Hi Chris and Lena
Well I hope you are waiting for your drugs now and ready packed. Dont forget to get some Anti Sick Tabs as I needed them for a month or two after SCT :-/
Take care when you get home now is when the healing starts stay away from infections and you might (i did) need some sleapy pills also.

Vickie and Colin
It wont be long…[Read more]

Hi Stuart and Vanessa

A Warm welcome to the site.

I am Tom had CDT and SCT in Decenber 09 am now in remission and Drug free am pleased to say.
Good Luck on your road to remission as its a hard one some days but stick with it and stay strong you will soon be my side of it and it feels great 😎

Ask away and this is the place to vent out…[Read more]

Hi Vicki and Colin

Well Honest it is going the correct way and to be fair its one not to rush.

I didn't have Injections post SCT but I do remember them prior to SCT and yep it was Bloody awful, the pain was in my ribs,back and arms and my pain lasted about two and a half days, I was told it was theCells getting pushed out into the blood…[Read more]

Hi Eve,

I suppose it is similar to any stressful job where you suppress your angst in order to carry on with the job in hand… your body couldn't afford to have these minor but painful problems before and almost the second the stress is lifted they are allowed to play havoc. Normally that occurs when you go on holiday… many women catch…[Read more]

Hi Karen,

It's good to see that you will be going through your SCT at the City Hospital, Nottingham. It is where I and several others here attend (I live 18 miles from the hospital one way and 12 miles from Grantham the other).

The City Hospital has a first class, purpose built Haematology Centre with a Day Case Unit (Where your stem…[Read more]

Hi Deirdre
Welcome to the site,yes the whole thing does seem so unreal,it is all a bit mind blowing,how are you managing in yourself are you getting enough rest??

It must be hard work,going to the hospital 3 times a week,why are they talking of ( crancking up the chemo??? )

How long has he been on treatment and what chemo treatment is he on.??Eve

[quote][i]I know that I have to find my own "normality" but as my kids always said Stephen and I were "joined at the hip" My weaknesses were his strength and vice versa.

He has been dead for 2 months now and I still feel as though part of my body has been ripped away.[/i][/quote]

Hi Gill,

I can empathise with the idea of being 'joined at…[Read more]

Hi Kes,

Hopefully you will have MM for a long, long time (not something you would usually wish a cancer patient). 😉

Like Eva said, you could have MM for 10 years or more… a 5th of your life… it is with you now and it will never go away. There was Kes pre-MM and there is Kes post-MM… the old life has gone and you have to make a new…[Read more]

Hi Babs

Get that letter from the consultant and book it,it will do you the world of good,since remission,we have had a cruise,been to France and now NZ,we do not have a lot of money,but when you now your chances of living until you are 80 are not great,it,s not important.
Hi Jean
Thought I would say hello while on,we never seem to be on line…[Read more]

Hi Babs

IT is a bit of a bummer,comes and knocks you side ways,all your plans for the future,flying out of the window,well i am a carer and I felt like that:-P, still do some times,it,s a big learning curve,but look around you,all ways someone worst off than you:-S

My husband had his SCT in May so a little ahead of you,and we are off to NZ…[Read more]

HI Keith

Well,you answered your own questions,so does that mean it was not so much of a shock or is it a combination of relieve plus your ready for the next hurdle,??? I am amazed that I could not find a lot of trials for people in your position in the uk. To put it bluntly you must feel any new trial offers some hope. I looked at cancer…[Read more]

Hi Keith,

I understand the difficulties about getting on a Pomalidomide trial…. but how come the Bendamustine? It's not licensed… so there must be a trial of sorts.:-0

I have read extensively about both Pomalidomide and Bendamustine and both seem good with a median of 12/18 months and rising (as all new drugs seem to do…Revlimid had…[Read more]

Hi to you all
Thank you so much for your very kind thoughts – much appreciated. I knew it was back really by the fatigue and pain levels but we always hope for the best don't we?
Had Hickman in yesterday and will start chemo (PAD) on Monday so may not be on 'air' for a little while!

Best wishes to you all and fingers crossed that we don't…[Read more]

Hi Keith

I hope this works for you when i was at the MM info day in London they were talking about third and fourth sct i wonder if you could get a referal to to Kings or Uch it was the consultants from there that suggested it they also prescribe drugs from the Rare cancer fund if needed
which included pomalidamide
Regards Jo

Hi Keith,

I am looking forward to the results and I truly hope that the prognosis is carry on carrying on… with Rev & Dex… even if it means limping along with little change for good or ill, until one of the licensed drugs from America reaches Europe and the UK for licensing here.8-)

If not.. then what?:-0

My consultant was quite…[Read more]

Hi Vicki & Colin

Janet was with me for the Mephalan but then felt a cold coming on which turned into something akin to man flu… either way it meant she could bring in vital supplies to the nurse's station but no further… I didn't want to see anyone else so I set out for my SCT on my own. Janet was declared fit and well the day after my 0.1…[Read more]

Hi Ali

Must admit I felt cheated for Slim,I had done a lot of research and 33% chance of no treatment and 66% of treatment,Slim got no treatment,to be truthful felt deprived,and I am just a carer lol.

Saying that have got my head around it,now looking forward to 6 weeks free,then 2 weeks of test and consultant,so there are some good points…[Read more]

Tom I have to say it,you are as bad as Slim,

Slim was being sick and I went out to the desk and spoke to the doctor who said he could go home,as long as he was not sick, mhhhhhhhhhhhh.He had told her he was not being sick earlier,I told her," he tells lies",who did she believe,An ex marine who could look you in the face and lie.

I rest my…[Read more]