[VickiParticipant]

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 eating and going out and about a bit. sorry to hear mum and dad had to cancel their hols. What immunisations are they talking about? General ones or specifically somewhere in the world?

We were talking about holidays tonight…..we still can't imagine going too far for a long time, but you can have aspirations. Mine are Maldives, Mauritius or Sri Lanka. We can dream for now. It will be so great for you and the family to have a big holiday, you all deserve it.

We just need to get on the SCT route first!

Have a great weekend and hope you enjoyed the shopping with your mum

Vicki and Colin x

[VickiParticipant]

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

[VickiParticipant]

Go for it pat. Beat it in to submission 🙂

This site is a godsend isn't it

Vicki and Colin.

[VickiParticipant]

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 recovers quickly and has a long long remission 🙂

Vicki and Colin x

[VickiParticipant]

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 the lot 🙂

Ann, sorry to hear about your latest glitch, this is not an easy ride and always something to catch us out!. What are they going to do about it? It always seems to happen when you are booking a holiday! That said it could be precautionary as if they are like ours, very thorough and like to have all the boxes ticked.

In general, Colin has been feeling quite tired and generally a bit fed up…..but we have some new provisional dates but I am not going to put it in print this time :-). Try another approach, we'll tell you when we have 2 million plus stem cells!!!!!!

Hope all is well. Ali, how is your mum doing?

Vicki and Colin x

[VickiParticipant]

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. 😉

Best of luck

Vicki and Colin x

[VickiParticipant]

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 when the next rigmarole starts…..

Vicki and Colin 🙂

[VickiParticipant]

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

[VickiParticipant]

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 feels rubbish today and he has slept for most of it, is that normal? He had the cyclo. 3 weeks ago? That said has been to work 3 days this week full time and we went Out! Last night. A colleague was retiring and it was the first time we'd been in a crowd since he was diagnosed last October. It was great to see him chatting and circulating catching up with colleagues. But well shattered today :-(. Number 1 cut getting shorter. I think it helped going to the do last night…..there were people with shorter hair than Colin there and they'd not had treatment.

So bouyed up by biker chris news. Hopefully well get the same x if all goes well entertaining some friends tomorrow.quite a social , could almost forget about mm, almost!

Vicki and Colin x

[VickiParticipant]

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 getting shorter by the minute!

Take care and go for it 🙂

Vicki and Colin x

[VickiParticipant]

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 and colour tones when her hair grew back!

Fingers crossed those little stem cells will spill over and collected for your next stage 🙂

Vicki and Colin x

[VickiParticipant]

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 though.

It's been a strange time really, two false starts and then waiting for this. Colin says it feels a bit like and anti climax and he feels lacking in the energy to be positive and dealing with the next stage. Did anyone else feel like that?, I am trying to keep him positive and upbeat but that's not always easy……especially given the hoops of the last couple of weeks, and the shock of now having a very close number 1 cut,it takes a bit of getting used to for him :-).

It does feel a bit of anticlimax. I hope it went ok for biker chris and his second try with plerixafor, no posts on his thread to update?

Hope you guys are all well 🙂

Vicki and colin

[VickiParticipant]

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

Vicki and Colin x

[VickiParticipant]

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 today…no new dates yet though. Bit worried as we've not seen a post from biker chris, as he was due a second go today and yesterday? Hope it went well for him using prelixafor

Vicki and Colin 🙂

[VickiParticipant]

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 came out and so did Ali's mums ! ( he reckons I did not mention it ha ha!).

Anyway hair did not last long…..up to the barbers today and number 1 cut all over. Colins tolerating it and I think it looks quite good. Might need to get a decent hat, as its quite cold here tonight!

Vicki and Colin x

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