Hi Maureen

Colin had 750 light chains when he had SCT and got to full remission. It is possible. It’s just important to remember that each person is different. Ian has come along way andnthismis the big chance 🙂 it was lovely to see the post from the lady who has had mm since 1996. What wonderful encouragement.

Wishing you all the best

Vicki…[Read more]

Best of luck Andrea!

The ice pops is a really good tip! Also plenty of soft food. Plenty to drink if you can.

Vicki and Colin x

Hi there

Colin gas just had the first cycle of bendamustine. It certainly has hit him hard, so if feeling rough is anything to go by he should be in remission again! The positive is they only give it to him for two consecutive days once a month with prednisilone steroids, so less trips to the hospital. The bed bits are that he has been rough all…[Read more]

Helen,

Thanks for the info. I hope they find your cells, that would be better than the donors transplant wouldn’t it? I assume the donor one has more issues due to the graft v host, I think I read that? Colin is still rough. He said his arms and legs feel weak. He has no energy at all. I’m worried sick. I don’t know whether it’s the treatment…[Read more]

Hi there,

Yes don’t do anything too rash. Wait and see what the consultants say.,as long as your husband is able to care for himself then try to keep things as normal as you can for as long as you can 🙂

Vickimand colin

Hi Jean

How are you. How’s frank doing?. Velcade didn’t work for Colin so he’s just had a first cycle of bendamustine. It’s hit him really hard. First cycle so no results yet. It’s the first day today he’s felt better today and he had treatment 26th JanuRy !

Hope you are both ok
Vicki and Colin xx

You both sound like you had a good time, keep taking advantage of the opportunities especially when you are feeling well.

Vicki and colin

Hi all

Helen firstly so glad you were able to enjoy the wedding. A great day! We haven’t had a clinic since Colin was given this first lot of bendamustine. We are due on 24th February I think. It’s been a hard week. Since I last posted Colin has continued to be very poorly which ended up with a hospital visit (unplanned) last Monday. Even the…[Read more]

Wishing you the very very best Noel, good luck to you

Vicki and Colin x

Hi Karen and Megan,

It’s a real blow when the dreaded relapse word comes in isn’t it. Never mind wanting 5 year remission, we wanted 10 years and more. In the end we got about the average. It is very very worrying and it’s hard to get your head around to begin with, but try to be positive it is hard!

What will the treatment option be? What…[Read more]

Keep your chins up guys. Remind me is allo the donor transplant and auto the own cells sct?

No one has mentioned the auto one to Colin just the poss of a second own cells sct if we can get to remission and they can get the cells out.
As was well documented had real problems last time! Only just got the two million and they had to throw the…[Read more]

Hi all

Firstly helen, wow love your hat and the outfit. You look stunning!

Helen, I’ve been barred from asking loads of questions without prior approval by my other half……he says I go into over drive! It will be interesting to know about the lights chains v pp. We seem to be suffering a lack of information at the moment. They don’t seem to…[Read more]

Thanks Jill Very much hope that your Mum continues to do well. Its always good to hear the good new s stories as they are encouraging to the rest of us!

Vicki

Hi Katie

We too have heard that turmeric is good. We have bought some but colin hasn’t taken it yet. I hope your mum has some good results and that she will be able to take her holiday. Remember each person is different so often their figures will be different. in colins case his PPS were lowish at 17 but his light chains were 35000 which was…[Read more]

Hi All

Thanks very much for your thoughts and support. We have a clear path of where we are going now! The velcade was prescribed with Dex and Cyclophos so I think we can say it didn’t work. Light chains went up from 4000 to 6950!

So they felt it wasn’t worth giving that another go, So the plan is that Colin will have this Bendamustine. He will…[Read more]

Hi Linda

My Colin had an SCT in November 2012. Full relapse was June 2014. He started velcade in December 2014 but it’s very obviously not working for him. Whether to have an Sct is always a difficult decision as there is always a chance you will get that long remission. I don’t wpknow whether Colin would go through it again but like you it will…[Read more]

Andy

That’s absolutely brilliant news, so so pleased. Just goes to show that being positive, stubborn and down right determined can achieve the right results. If anyone deserved some luck after going through all the treatments it’s you!, here’s hoping that the professor can come up with the goods and your little cells will come up trumps at the…[Read more]

Hi Val

We were told that we couldn’t travel abroad for 6 months after the transplant. Because Colin had been in and out of hospital with infections we were glad not too! Always best to asks eh consultant, even after a year we asked the consultant about going to mauritius they were ok with us going but we had to take antibiotics with us just in…[Read more]