Hi Bridget
Do not understand it myself LOL loosing the plot I think:-P Eve

Dear Gill

I am so sorry to read of the horrible time you and Stephen are going through. My heart goes out to you both. The only thing I know about Dex is what I read about it on here. As Eve and Bridget say is there nothing else he can take? I have been following your journey and am so sorry that you find yourselves here. My love thoughts…[Read more]

Hi Scott

Frank is also like you – if he needs to know anything his consultant will tell him. That is great. I only look at myeloma uk, myeloma beacon and ASH.

best wishes
Jean

Hi Gill

Gill you should never feel like that,this is when you need this site the most,because it,s hard to talk to family about it,and most of us carers have earned are stripes with DEX.:-/

I am able to say to Slim is it the DEX talking or Slim and he does calm down,its a bit harder in public ,when he makes a remark that,s uncalled fore. I…[Read more]

Hi Liz
I'm not bothered about thinking or talking about it, it was way worse than childbirth but does get less horrible as the time from it goes further away, if that makes sense. I saw it as an essential process to extend my life as much as possible, as, despite all the new stuff coming in for myeloma, we can only have what is the best available…[Read more]

hi Everyone
Can some one tell me what has Gary O Brien??????? Eve

Hi Helen
I don't know anything about Cardamon although i am doing some research on it. Going to ask consultant about it. There was a thing going round a couple of years ago – think it was Curcumin. Not sure if is same thing Myeloma Beacon is an organisation in America which gives information on Myeloma. Not sure what other members of forum…[Read more]

Hi Clare

Sorry to hear that you are feeling down. My husband has MM and when diagnosed I went to pieces. It was organised for me to see a counsellor through Action Cancer. I went and it was a disaster. Although I just met the counsellor, there was nothing between us. I got the impression that she would rather be elsewhere. I never went back.…[Read more]

Hi Chrissie
I am so sorry for your loss,I am also awake in the early hours wondering what the future holds,we never know what to do for the best, you just try to do your best and try to remain positive.

People who have been through the same thing will reply to you,and try to help you get through this awful time,just try to remain positive,and…[Read more]

Thank you everyone for your good wishers and advice on SCT.

Still waiting on letter from Kings.!!!

Slim stopped Chemo a week before Christmas and has not been well since,it started on Christmas day,and has gradually got worst,on his last blood test on the 28th his kidney level functions were just starting to rise,so more blood test this…[Read more]

Well:………. My experience was pretty awful, I had sailed through the chemo induction phase by comparison and worked until the stem cell collection. I was going to be mostly out patient treated for the transplant. Many people have a couple of bad weeks with it and some have little trouble at all, we are all different.
The high dose treatment…[Read more]

Hi Everyone

Its now 2012,time goes so slowly when your young,but as the years pass they seem to fly,so my word has to be

YEARLY I know it leaves RLY

But it seemed to fit into the new year. Eve

Hi Amelia

What is cardamom and where do you get it? I have never heard of it before. Any info would be appreiated.

Jean

Dear Dai
Good luck with the trial, I do hope you randomise to the new med. I see you as an intrepid traveller and are setting off on a new pathway, a trailblazer, we watch and wait to see where it takes you…. It is a brave choice keep us posted.
Love Helen

Hi Dai

Just been looking at a site about the trials,sounds very interesting you better hurry up with that 24 hr bottle,as I got the impression that it,s only 700 per country.
Those big bottles get heavy,cannot tell you how many Slim has filled plus they are heavy to carry any distance,so as well as the brown bag it pays to use a couple of…[Read more]

Hi David

Just watched the video,it does bring home about lack of wards for seriously ill teenagers,as you know,my grandson who has CP spends a lot of time in hospitals,last time because he is now 16,he was put on an adult ward,one side an old man coughing phlegm all night,and on the other side,a man making the most fowl smells,with my daughter…[Read more]

Hi Sarah

Just looking in ,could not help with headaches ,but hope the consultant helped on the last visit.Eve

Hi Gina
What is a fright night ????

Glad to see you are getting on with your lives,it,s hard but it is what your mum would have wished,remember you have good memories there,and that is important,i found the worst thing in the early years was wanting to pick up the phone to tell my mum some news,that,s what I found hard.

But life goes on,and…[Read more]

Well Dia
lifes a bitch:-( I am so sorry about the short remmission I will be praying for you in the hope your results are right In America they are using carfilzomid a lot I have been reading James Berensons blog and he has great hopes for this drug.:-) It will be a long haul but I would definately go for it you have nothing to lose
A GREAT…[Read more]