Hi all,

No news on whether we've got the prelixafor yet! Hope that no news is good news!. The cyclo-prime has worked for something……..Monday saw colins hair start to come out in clumps. Col was upset (he expected this later during SCT and not after cyclo-prime),just goes to show he does not listen to me because I told him Stephens hair…[Read more]

Hi Craig and etta,

Just catching up in posts. Really so pleased that it's worked out ok. As Ali and Helen has said, one day at a time. Ali, your mum sounds like she is going great guns. Not too fast though, rest as well 🙂

Vicki and Colin x

Hi eve,

How's slim doing after his SCT?

Helen, sorry to hear you've got a chest infection. Its typical and this weather does not help, cold one minute and boiling the next. Really cold here tonight and it's almost heating on…..have we missed the summer LOL!

Ali, how's your mum getting on?.

Vicki

Hi chris,

Just wondering how you got on with your harvest. Hope you got millions of those little stem cells out and that plerixafor did it's job. Hope you haven't got too many bruises from the paint balling 🙂

Vicki and Colin

Dear Gill, I am so so sorry for your loss. Your post brought tear to my eyes. Stephen will rest in a pain free peace.

My love and thoughts are with you

David

Hi Joanne,

There is no doubt that this mm thing is a roller coaster. Colin has been in and out of hospital more times in the last 10 months than I can remember!. But each time they made him better and we moved on….if only we can get these blooming cells out :-(. there always seems a little something to tax us. Today Colin phoned me at work to…[Read more]

LEs,

Welcome, hi and do not give up. My partner Colin was diagnosed age 55 last October 2011. We thought our world had come to an end, and it's true to say we are experiencing a different life at the moment, but things do get better..Colin has had 7 cycles of treatment and is awaiting an SCT. It is has not been without it's ups and downs but it…[Read more]

Pat

You stick here and we will learn about AL and you can learn about mm…..shame not to share 🙂

Vicki and Colin x

Hi there,

Welcome to the forum. My parter Colin was diagnosed with mm in October 2011, following a random blood test due to back pain. He went then from test to test, blood and urine with a final bone marrow assessment identifying myeloma due to high amount of plasma. I saw you other thread with test results. I can't really comment on what they…[Read more]

Hi Andy, Tom, and Peter and ann

Peter, ann, sorry I missed your post. Hope you guys are doing well and Peter is progressing well with his treatment. We have been through the mill this last week, but now we are calmly waiting to hear about those other injections…..

Andy, we cannot believe that you had FOG!, you can see for miles down here ,…[Read more]

Blimey Charlotte, you have been through the mill too!

Thanks for all of your background information that's really useful. You sound like you have made real progress and had to work really hard for it. It all sounded so very scary for you but really glad younger keeping yourself active. Colin is doing quite well thanks but is having…[Read more]

Hi Ali, Tom and Andy

Thanks all for your support. Ali, we did see biker chris's post and we are so so pleased for him, and hopefully us. My pessimistic side comes out a bit always but I have been positive up to now :-). I was glad I asked lots of questions despite promising to take it slow (woman's prerogative) and it has helped us. Andy you…[Read more]

Hi chris

Firstly congratulations on your marriage. And the very best of luck with your second try at harvesting. We are so pleased to hear that someone is the southwest has got prelixafor and hope it is successful for you. Colin has had two goes at south mead and both failed but that was without the magic injections! Wed be really interested to…[Read more]

Hi Andy, Sorry to hear that you cannot go down the Allo route. There is a train of thought that it is overrated anyway and the pure drug route gives more remission – I have not got a clue I leave all that up to the experts:-D .

Enjoy the Lakes Mo and I had a great walking holiday there many, many years ago. The weather was terrible but we…[Read more]

You are not "ignorant" my friend.

I have a South African branch to my family and four years ago when I was originally diagnosed with Myeloma, and things looked real bleak, one of my Nieces sent me an Africans word to hang onto "Vasbyte". Its literal translation is grit your teeth. But she informed me that in South Africa it is used more to…[Read more]

Hi all,

Here is plan c then! Colin and I discussed our questions beforehand and he said I excelled myself as I had a million and 1 extra ones just as our consultant answered the planned ones! I am sure it was stress :-).

Anyway the plan is they have already started the application for prelixafor and apparently they are hopeful because there…[Read more]

Hi Joanne

Glad you posted, it took me a while too but the support gained from this forum is amazing and most welcome :-). I recently contacted the nurses as well and the responses are so detailed and quick so if you ever want to know anything, theynare great. My partner Colin was diagnosed late October 2011 and like your dad it was shocking.…[Read more]

My impression is that Myeloma is undetectable in the initial stages unless you are lucky enough to have a really switched on Doctor!

My MM was diagnosed after it ate the 4th vertebrae in my neck, however the Consultant, after studying my medical records, said that she thought I had had it for at two years. Two huge clues which were missed…[Read more]

Hi Amanda,

My partner Colin is also on the myeloma 11 trial. He is awaiting an SCT if they could only get the stem cells out!!. The treatment proved effective and although we were very apprehensive and worried did the job to get him to complete remission. Yes our lives changed, but as Stephen said it's still possible to have a life. It just…[Read more]