Hi Mary

Colin was on revlimid during his induction treatment Mary and he had to do a fragmen (anti blood clot) injection every day for 5 months. Revlimid, with dex and cyclophosphamide brought his pps down to zero and his light chains down to 720. It worked for him. He had a few infections but got through it. Charlie wiill soon be there too.…[Read more]

Solo

I echo that, so so encouraging and long may it continue xx

Vicki and Colin x

Hi all

Funny I was wondering where Dai was. Next time you speak/email Janet or speak to Dai please pass on Colin and my best wishes. Fingers crossed he'll be able to walk his daughter down the aisle. My money's on Dai. He's a fighter!

Best wishes

Vicki and Colin x

Hi etta

I think this is the randomisation element of the myeloma x1 trial. They randomise you to either have maintenance treatment, I think it's lenalidomide, or not to have maintenance treatment and just leave be. I noticed this randomisation element on colins SCT plan when we received it. I think Helen takes a maintenance drug too?

Good…[Read more]

Well thanks all for your kind words and good wishes:-)

You're right, it was a battle so stage one ticked off. Colin is really shattered so we're having a really quiet time. Short turnaround for his SCT, he goes in a week Monday……22 October 2012. It's very real now! So we are going to enjoy the next few days, as long as col gets the gcsf…[Read more]

Hi Louise and dad Garry

My partner Colin was diagnosed with mm age 56. He elected to go on the myeloma x1 trial, randomised to have revlimid, cyclophosphamide and dexamethasone. Like your family we were knocked for 6, no symptoms, had been golfing, skiing and kayaking and a walking holiday in July 2011 and the diagnosed oct 2011 after having…[Read more]

Thanks jacqui,

Your support and thoughts are very appreciated

Vick & colin x

Hi all,

Another trip to Bristol and more stem cells, surprisingly colins count was still only 18 today, 4 higher than yesterday. That said they seemed confident they would collect the required 2 million. Well they did collect another 1.04, so in total we just got over the bar with 2.07, and that's good enough. Now they are in the bag literally,…[Read more]

Hi all

AT LAST WE GOT ON THE MACHINE TODAY, STEM CELLS ON THE MOVE HOORAY,

We were amazed when we go there this morning. They did not even wait for the blood test cd34 to come back. Said there was guaranteed mobilisation with plerixafor! Wow. As it turned out colins count was 14, so like chris's not great but a start. We are told this…[Read more]

Hi ann and Peter

How are things going? Have not heard from you for a while?

Vicki and Colin x

Nioola,

Just catching up on your posts. I hope your dads hospital appointment went well today. I'm sorry to hear that he is suffering the side effects. When Colin was on induction treatment he did suffer with dex…..moody, tearful and up all hours of the night!

Hope all goes well. Is your dad going to hVe an SCT at the end of his induction…[Read more]

Hi Jane

As supporter I agree with Jean, if I feel Colin is not telling me stuff then I either run mind riot, Internet over drive etc, of make his life a misery by asking what's up, what can I do, how can I help every 5 mintutes! LOL. So I reckon it's easier for all concerned if you share a bit. A problem shared is a problem halved 🙂

Jean,…[Read more]

Thanks very much for your good wishes Jacqui and Joanne,

Keep everything crossed for us ! Surely it's got to be third time lucky 🙂

Vicki and Colin x

Sorry chris

I read your post on your thread first!. Thanks for your good wishes. We live in Gloucestershire so Colin is administering his own plerixafor at home tonight at 10pm which I am a bit nervous about and then we travel to Bristol in the morning. If the harvest starts and they think he needs more plerixafor we then have to go back from…[Read more]

Hi chris,

So pleased for you if that's the right word! Yes I can understand the range of emotions that you talk about! Your date is the same as colins, if the mega harvest you refer to works! We too panicked at colins first date and rushed about like mad things….we needn't have done that 🙂

Chris if you are still tuned in, Colin has felt…[Read more]

Tina

Colin has not got to SCT yet but we are waiting…..I suggest iPod, iPad, kindle, smal DVD player if you have it…if not and none of those any good just want to say the very very best of luck 🙂

Vicki and Colin x

Pat and Jo,

Your posts about the leggings made me laugh! They don't suit everyone do they…..the jury is out for me at the moment, but I do know I'd get the same honest answer Colin :-).

Sorry you've been feeling rough pat but glad to hear its getting a bit better. Re your post about the treatment getting those mm cells, I used to say to…[Read more]

Jane

Colin sleeps loads. That's fine, as Tom says healing!. Colin seems to have bursts of energy and he will just run out of steam. He does a bit and rests a bit. Seems like the right thing to do. I'm sure your husband enjoys doing the jobs, make the most of it, then when you are better you can return the favour 🙂

Vicki and Colin x

Hi Tom,

Yep injections started yesterday morning, each day with the funded drug of prelixafor on Tuesday night at 10pm. Down to Bristol Wednesday for the third and final go. I am absolutely dreading it….I know this drug is supposed to be 80percent successful but the two other disappointment s have been so hard, for both of us in different way…[Read more]

Mari,

The good thing is that Stephen is home and they say that recovery is much better in your own bed and in familiar surroundings!. That's said though I remember eve posting that it's where the hard working starts!

I won't say keep your chin up, but thinking of you and would like to be as much support as possible if you find the time to…[Read more]