Hi Debs your dinner sounded awful !When I was in having my sct all I wanted at first was jelly!!My mum made some and brought it in but you can also buy it in individual pots too Get someone to get you a couple Fingers crossed the next bit isnt as bad as you fear it will be Keith good luck with your sct , it will be over before you know it and…[Read more]

Hi Pam so sorry your dad is having such a rough time , it must be awful for you watching him go through it . It sounds as if your dad is being well cared for in hospital which must give you some peace of mind If it does turn out to be myeloma I am sure they will be able to manage treatment to suit your dads health , they wont give him the strong…[Read more]

Hi John I do hope you remain symptom free for a very long time yet The treatment can be demanding , although consultants are generlly very good in working with you to find the right treatment to keep some quality of life balance The other thing in your favoir is the time to research all treatment options Provided you are generally fit and after a…[Read more]

Sorry Jet typing error,don't watch the screen oops it was GCSF injections, just to help the stem cells that are being transplanted and make a few more.
ps like the bold bald look it suits you
Min

Hi Jet I love your pic , you really suit having no hair it shows what great bones you have ! My sct was 4 years ago and I was petrified going into hospital , like most of us going into the unknown. I had the sickness and diarrhoea but I was lucky not to have too many problems with my mouth or gums . I had absolutely no energy whilst in hospital…[Read more]

Hi Gillian its good to hear you are doing well and I hope you can get home next week, there really is no place like it Your new house sounds exciting , even if it is a big undertaking !!You will get some normality back , probably sooner than you can imagine right now ! The main thing is to rest when you need to , dont try and rush yourself to do…[Read more]

Hi Jet.
Good luck for the SCT and hope its a walk in the park so to speak. Peter my mm man, had his stem cells given at 9am and was home by 3pm and did all of his recovery at home. Stupid man even cut the lawn when he got home. But no one told him he should not. He had a week of being off his food and very tired where he slept a lot but…[Read more]

Hi Eve
Thanks for asking we are plodding along, Peter's appetite is improving daily and he is doing some small weights to try to build up his strength. Blood appointment tomorrow to see if he needs another bag of blood or two. I feel most likely as he can sleep for England. Then another two weeks before the next clinic appointment.
Im back on…[Read more]

Hi Eve
We have been going through a ton of food lately most of it into the 3 dogs!
I bought everything he normally likes and he didn't want it, or anything else. Then I made him porridge with milk that had gone off( I swear I didn't know) but it gave him 24hrs of D and S lots of vomiting and loo runs. Oh dear was I in the dog house.
On the…[Read more]

Hi John
You are so lucky that you asymptomatic, long may it last as the alternative is to start on a regime of medication which is rather debilitating in many ways.
The main thing is you are being monitored and if your situation changes they will step in and start treatment. Just make sure your fit as its possible to be, and the intensive…[Read more]

Dai
I can just picture you looking like a spotty pin cushion. Knowing what peter looked like when he was in a few weeks ago after several attempts at canulas then them wanting blood while he was hooked up to a drip. He was sick to death LOL of needles. His arms are now fully recovered just in time for the next lot.
I hope you remain temperature…[Read more]

Hi everyone bless you all for caring Sorry I havent been around but I have been struggling with Revlimid and changing these wretched painkillers! Half the time I am out of it and the other half I am asleep Last week I saw a consultant who specialises in palliative pain care and he altered my Oxycontine dose from 70mgs twice a day to 200mgs twice…[Read more]

Hi Gill
I was once very differnt to how I am now and similarly Peter was too. He was a man with no temper, and slow to rile. Now he responds with the occasional burst of anger.
I was the one who went off it often, but I seem to have mellowed. I have changed but I defy anyone affected in any way by this blu-dy disease and not find themselves…[Read more]

Hi
Ive just been away on a quick breakaway, to my daughter and grandchildren in Warks. Cant see any activity on Bridgets facebook so sent her a message.
Min

Hi Gill Sorry to hear Stephen is not well, as I remember it took Michael a while to get over his second SCT so fingers and toes crossed for both of you.
I know what you mean about treatment, we really dont have a choice, I think what really concerns us this time is that we have had to move hospitals and consultants ( as they dont have clinical…[Read more]

Hi Dai
Amy obviosly inherited her talent from her dad, you must be very proud of her and I am sure some time soon you will be on a plane to go watch her wow the crowds.
It sounds like she has a very exciting life and hope it continues for quite some time.
Love the sound of her voice and your accompaniment
Cheers
Min

Hi Claire,
Its good that your mum has been diagnosed early, as many are not and the treatment for a late diagnosis is not pleasant. But in you mums case. It sounds like she has a smouldering kind, which means the professionals watch and wait.
There is no point in starting treatment if it is not yet necessary. Far more pleasant for you mum and…[Read more]

Hi Joanna Sorry to hear Bendamustine has not worked, to be honest Im dreading the trial Michael has infusion twice a month thalidomide daily and dex 4 timeas a month 40mg, its the dex i fear it changes him so much.
Were you on a clinical trial?

Sue

Hi Sarah Michael doesnt start with the dex until a week on Friday otherwise you would probably her us shouting. When i here the word dex i freeze Michael has such a reation to it, i dont mean rashes etc but a personality transplant, hes such a nice man, bit that horrid stuff changes him completley.

Hi Min Michael has had Velcade, but not…[Read more]