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 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 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]

Hello Peggy
So sorry that you have joined us – but at least you know what your dealing with now and this site is a big help – just about the only place you can have a "little rant" as everyone understands completely – were all in that place at times. It´s difficult to let off steam with loved ones as you don´t want to upset them any more than t…[Read more]

Hi Susanah
Im really interested as indeed will others on here in the same position as Gordon and Sarah. My husband is what I thought of or think of as at the last chance saloon. Having has a failed sct, velcade and revlamid. All of which worked for a very short time. His current treatment fills me with dread for what happens next. But it is…[Read more]

Hi Sarah,
I empathise with how you must be feeling. When Peter got his bad news it was devastating for both of us. But there are other options out there and going back wards to CDT or in Peters case MDT is the way for us( the royal we here!) having tried Revlamid which was good, but not good enough for the aggressive cato mm
Given the past few…[Read more]

Brill Keith
Have a good break, see you there probably as Peter is going in about the same time
Love MIn

Hi Gill
Welcome to the merry band of MMrs. Sorry you find yourself here and can understand entirely how shell shocked you must be. B
You about to step onto a roller coaster and might feel like throwing yourself off from time to time but bare with us/ it. We may not have all the answers but someone on here will be at the same stage as you are or…[Read more]

Hi
So sorry your having such a frustrating time and feeling so low – no surprise you feel so unwell when your on such a demanding treatment regime. Like you, I always feel so less able to cope when my blood count is low. My doctor put me on Aranesp (there are lots of other names for it too) and this did help a great deal – don´t know how…[Read more]

I think anyone on Velcade dex/Revlamind and dex deserves some sympathy and understanding. Compared to Thalid they are good but the downsides are worse. I have watched Peter try to overcome the side effects of V&d and R & D and he was struggling constantly with side effects.
He went back on Thalidomide the other night… after a big break whilst…[Read more]

Hi Gill

Truly sorry that you have had the rotten news – you must be shell shocked and everything a blur.
Please take heart – things are moving at an incredible rate in this field and in the almost six years since I was diagnoesd there have been huge steps forward and progress has been incredible.

There are some lovely supportive people on…[Read more]

Hello Dai,
Peters time on velcade was reasonably good, except for the time it gave him pulmonary embolisms. He managed to go to work while on it, (Revlamind made him very ill) But on his visits to the day unit depending on his bloods and his responses to questions he frequently saw the Dr.
I am sure if you ask next time you are in they will…[Read more]