Ali,

So pleased to hear that your mum is doing well. It's a real shame they can't conquer the acid and mouth ulcers. They do seem standard fare so you'd have thought someone might have come up with something very effective by now. Glad to hear your mum might be growing some hair, that must be a good sign….and even better that she feels like…[Read more]

Hi Jacqui

That's interesting. At the moment Colin doesn't go to a regular clinic because he's now for the elusive SCT. We used to go once a month on a Thursday. It will be useful because we can all swap notes! Glad geoffs pps are going down , the RIGHT direction!

Vicki and Colin x

Go for it pat. Beat it in to submission 🙂

This site is a godsend isn't it

Vicki and Colin.

Hi Mari,

All good wishes to you for doing the supporting role, and Stephen doing the really hard work. Hope he sails through it will few/no problems and soon on the road to recovery.keep us posted :-). Colin has some revised dates but I'm not putting them in print….only when the little cells are in the bag literally.

Hope that steve…[Read more]

Hi Tom and ann,

Tom, we did enjoy the weekend :-). We went to our friends early retirement do and wait for this stayed out til 10pm. I don't think we have done that too many times since colins diagnosis, except when we had to go to hospital cos colin felt Ill ! Had friends for lunch on Sunday, nice and sociable. Col a bit tired but able to do…[Read more]

Hi chris,

I thought Pam Ewing died in a car crash? Haven't seen this new series!

Chris it has been a blow when Colin failed twice but at least we have a hope now. So pleased for you and that you managed to get out for a meal in the evening. We've got not dates for the next go yet, but look forward to watching your progress with interest.…[Read more]

Hi Dai/Tom

Battle cry heard loud and clear. How right you are. There is only one way to deal with this…..head up and look it straight in the eye….well except when colins backs a bit achey then it's hard to stand with shoulders back LOL. That said there are only two ways to go and the positive route is always the best :-).

Waiting to hear…[Read more]

Hi Sarah Jane,

Welcome to the forum. My partner Colin was diagnosed with full mm in October 2011, so like eve we never did smouldering. Whilst I can't help on the symptoms etc I can say that this forum is most helpful Nd useful to gather support and help if you're feeling fed up, worried or in need of a chat 🙂

Vicki and Colin

Hi all,

Just seen bikers chris good news….great news for him and hopefully us! Hope you enjoyed the fundraising day and the peas and chips Tom. You are so right and we just need to gird our loins again, pick ourselves up and get that energy going. Helen, will have a look at the great north run tomorrow. How is your chest infection? Colin…[Read more]

Chris,

That is so so wonderful! That's absolutely great for you. We were getting worried as we hadn't heard. What a brilliant result and it also gives us some real encouragement too as Colin has got the funding agreed for plerixafor too! So so pleased for you. I think the wind will be blowing through colins scalp as that number one cut is…[Read more]

Hi Tina,

Wishing you all the best for the next few weeks. Fingers and toes crossed for you!. Colins hair fell out this week too! He was a bit shocked to begin with but now has a stylish number 1 cut!. They do some great wigs don't they! My friend Delia had one when she had treatment and she liked it so much she ended up having a similar style…[Read more]

Hi all,

Some 'good news', the funding for prelixafor has been approved today :-), no dates yet in terms of when and how but at least it's a step in the right direction. The only dampener for Colin was that they were suggesting another dose of cyclophosmahide to go with it……which made him feel really rough and low. They are not sure yet…[Read more]

Well done Les, keep going. At this rate you'll be off to Oz in not time 🙂

Vicki and Colin x

Andy,that's a real downer. Why did they not just cancel the appointment, and it's even more infuriating when you see someone that appears to know nothing about you and you case! Ahhhhhhhhhh!

Hey I'm with eve, anything new is worth a few questions. Onwards and upwards as Tom would say 🙂

By the way coli. Has had prelixafor approved…[Read more]

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

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]