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 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]

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]

Andy

Enjoy your break away with steph, and the beer. We think the weather is looking good for a while so no brollies!

Good luck with the treatment regime.professor Jackson will have a plan, they mostly do 🙂

Vicki and Colin x

Hi all,

Ali, I have posted you a reply to your messages, thanks 🙂

It has been a rubbish day and we have both felt quite fed up. It is absolutely soul destroying when they tell you the magic number has not been reached. It really is a case of so near yet so far. It is a real shame that the prelixafor is not available as a matter of course.…[Read more]

Hi Tina,

Colin has had his line in for a while now. It is really useful for the blood samples etc. Whilst he thought it was s bot of a nuisance to begin with, it has been very useful.

Hi Stephen, how are you getting on after your SCT. We were wondering how you were doing. Colin has had two goes at stem cell harvest and neither worked. We are…[Read more]

Hi Dai/all,

Just got back from the hospital. His numbers had not budged from yesterday. We saw a young doctor who told us the scores this morning and was very sorry for us. He did not however want to preempt what our consultant might say. When we came home yesterday we thought this would happen today so contacted the hospital to get an…[Read more]

Jean,Ali,Helen,Andy

Thanks for your support. I felt quite emotional and supported when I read them. Colin will read them too. He was almost tempted to post himself and thats a first.

Andy, I feel bad moaning because you seem to have had such a struggle to get your pps down and here you are taking the time to support us. I so hope your pps…[Read more]

Congratulations Wendy,

Good on you! And your cells!

If only we could get colins out to start on this trail 🙂

Vicki and Colin x

Hi Jean

Thanks so much. I hope your husbands treatment is going well (Frank isn't it?). I have also been following your posts too. We are expecting a complete failure tomorrow and so phoned to get an appointment with the consultant on Thursday this week so that we can get a good understanding of where we go from here. We were so fed…[Read more]

Hi Ali and all,

Day 1, FAILED. absolutely gutted. Score was only 1. Worse than last time, it started at 5 then. The chances of it working tomorrow would think is less than a snowball surviving in hell……and this is hell.

No hope for tomorrow and we don't have a plan c and the stem cell nurse is on holiday for a fortnight and no one to…[Read more]

Hi Ali

Hope your mum is still on the onwards and upwards ladder!

We've had a good weekend thanks, but I've found lots of jobs to do to keep me busy. Colin has felt like he has the flu and some aches and pains today …..:-), could this be stem cells!

Bit nervous tonight as we are off to Bristol in the morning for a second go…..fingers…[Read more]

Hi lyn,

We can really sympathise with you and the timescales, and now getting close becoming nervous…….we are, but Colin with mm is less likely to admit that than me! It really is a roller coaster of what happens next. Last we Colin had his cyclopriming. At first they thought his blood count was too low so may not be able to do it, upset…[Read more]

Andy

Keep your chin up….at least the pps are going in the right direction. You have a lot to fight for. You have been so supportive to Colin and I so we need you to stick with it. :-). I get what you say about the mixed emotions, and the highs and lows. It must be hard for you because the progress is slow……but it is progress now…[Read more]