Hi all

Thank goodness I’m not the only one with logging in problems! First of all, happy new year all. Apart from the login in issues we’ve been busy. Colin’s mum is moving down close to us and so we too have been doing the packing, and all the other things that go with it! D day is this next Monday so fingers crossed.

Tom hope you have a great…[Read more]

Hello Carole

Merry Christmas! Ultimately the decision has to be yours. My partner Colin had the transplant. He had this in November 2013. At the time it was hard going andnthere are days now when Colin gets anxious when he thinks but to it. However we took the view that we would grasp everything to give him as many chances as possible! I spend a…[Read more]

Hi nick

Welcome to the forum. My Larner Colin was diagnosed age 56, no interim just straight into mm. One back bone fracture which was amazing given the level of his light chains (31000) and pps were 17. It was a real shocker! Luckily no kidney damage. Colinnhad 7 cycles of revlimid, cyclophosmahide and dexamethasone. It was tough as he had lots…[Read more]

Hey all

Well done chris glad you are doing ok! Hope you are continuing to feel well. Colin still gets very tired but am convinced that’s to Do with the fact he’s on heavy duty pain killers for the initial back fracture. That’s got him down as he gets confident, does a lot and then is wiped out for 3 or 4 days. For me the worry is mm on the…[Read more]

Hi Tom,

I’m having real problems logging into the new site. I’m so sorry to hear your news…..your drug free remission has always been something I think of when I get down! You are a real positive guy so here’s hoping for you that that next phase of treatment will whack mm into touch again! Tom you have clearly not been drinking enough vodka for…[Read more]

Firstly hey chris how are you doing post sct….Colin still gets very tired but qualify that with doing too much and then wiped out for three days!

Hey all welcome if you are new to the site and hi to the old stagers. This is really a tough road to follow for supporter because you feel helpless and sufferer because its a tough lot of treatment.…[Read more]

Hi there,

My tip is be positive, think positive and try to only read sites like this. The rest scare you. I know it’s hard to be positive sometimes as it can look bleak, however try to as it will make you and hopefully your dad feel better. Remember 70 is the new 60 🙂

Good luck with the treatment.

Vicki and Colin

Hello all

A happy Christmas to you all, enjoy every moment. Life is for living. Take care and enjoy xx

Dear Janet and family,

I’ve had trouble logging in and have only just read this very sad news. To you all I send our condolences. Dai’s ability to paint a picture of his circumstances, even when they were some what messy….cdiff stories, could always inject a sense of humour. He was so encouraging and enormously knowledgeable. These words don’t…[Read more]

Ohno dammit I can’t believe this! I’ve not been able to log on and have only just got the hang of this. Oh bugger, i feel really upset….what happened. Dai was an absolute inspiration, and poor Janet. I feel sad for Dai. He was a huge encourager. I am sorry sorry. A great guy, poetic and so descriptive. Who could forget the cdiff stories.

I am…[Read more]

Hey graham,

Good luck with your treatment. It has taken me a long time to get the hang of the new forum and even longer to work out how to login! Wishing you all the best

Vicki and Colin x

Hi Scott

Yes, I’m still taking my daily curcumin and I still believe it’s helped me over the past three years of remission. After a bad cold and chest infection last Christmas, my light chains appear to have increased at a much steadier rate over the last year. Although that was my only cold for three years, with no other infections, which is…[Read more]

Hi Tom

I’m so sorry to hear your sad news. It must be such a shock, disappointment and big concern about what the next round of treatment will bring. Fortunately, there appears to be quite a few treatment options available for first remission including some clinical trials, Velcade and the possibility of a second SCT. Apparently the results of…[Read more]

Hi there

I too was convinced that my Colin had been exposed to radiation. He had shingles then was just getting over it and went somewhere where I think he was exposed. He won’t have it but I’m not sure. However with caution I am the sort that I need a reason for something and I won’t ever make sense of this mm!

Vicki

Blimey Helen,

I was just going to do an email to see how you were doing and If you had started treatment…..yep I can see that you have and that dex is doing its magic :-). I so hope we don't have to spend any time at hospital any time soon other than the 2 monthly check up! 🙂

Glad things are going reasonably well, and sorry for the other…[Read more]

Mary and Charlie

Paraproteins undetectable is good! Means the treatment is working 🙂

Vicki and Colin x

Gosh what a shocker Wendy, doesn't bear thinking about too much, lets hope there's some stability and right results soon xx

Vicki and Colin x

Hi Pauline and Marc,

Sorry to hear of your troubles….my partner Colin was diagnosed in October 2011, going on the m11 trial with rcd, after 7cycles went to zero pp and few light chains. He had an sct in October/nov 12. We have had our ups and downs…..Just when we think its ok he goes into a spiral of being absolutely exhausted etc. however…[Read more]

Ps I think Dai and Tom are superstars 🙂 too

Hi Andy and steph,

Glad to hear you are sunning yourselves in Greece….my money is on your pps being right down when you come back. It's the sun and the beer :-). But for now you guys have a great time 🙂

Hi Christine and chris….wishing you so much luck with chris.s treatment, there's alway a plan and always hope. You guys have really…[Read more]