Dear Min that is totally incredible I am sure Peter would be so proud of you I know I am! Have a great time.

Kindest regards ?vasbyte

David

I do not know whether I have my wires crossed here because I am way behind on the posts, I have been so busy lately. I had my one and only SCT in Nov/Dec 2010 and I have not had any maintenance drugs since then, just Loron for the Dee Old Bones. Probably not relevant but there you go!

Kindest regards ? vasbyte

David

I am on loron and have been since July 2009. I recently had a problem with one of my teeth and I was told that for an extraction I must stop taking loron for 1 month and could not start it for 2 months. As it happened the dentist managed to fill it in and all has been ok ever since.

Kinde regards – vasbyte

David

Hi Tina,

Well done on those cells 😉

Colin had one big dose of RT. He said it made him feel tired, a bit breathless and a bit sicky but not too bad. It was the tiredness more than anything and we had to put cream on the RT site to make sure the skin stayed soft. Other than a brown mark where the RT went in. No visible or ongoing…[Read more]

Sarah and Henry

That's wonderful news for you both"….long may it continue. Relax and enjoy 😉

Vicki and Colin x

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]

Thanks Gill for letting us know about Stephen?s final moments.

I have said to my wife and family that I do not want to be drugged up to the eyeballs when my time comes, pain relief is one thing but total mental oblivion is quite another. Stephen clearly looked Death straight in the eye with two fingers raised, good on him.

I wish you…[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]