We all understand what you are going through so do not worry about "getting it off your chest" so to speak, all of us here are here because we want to help each other.

kindest regards – Vasbyte

David.

Hi Vicky, We are in a similar position in that Mo and I have been married 50 years, or will be in November this year. I am suffering with Myeloma and my original prognosis was 2-3 years in 2009. I did not expect to reach my 50th and have been planning for my demise for the last couple of years.

One of the biggest problems for my Mo will be…[Read more]

Dai,

Reading your posts I am dumb struck! Firstly what you've been through and secondly being unattended in hospital. Thank goodness you are on the mend 🙂

Vicki and Colin x

Hi all,

Chris, thanks for your good wishes and good luck to you too. Colin will be taking the iPad into hospital so he has contact with the outside world. I have already been told off for nagging Colin about making sure he eats even though the food is rubbish! I'm cooking some good Hearty food this week, and a stew on the go at the moment, for…[Read more]

Yeah, yeah, yeah so you been ill, now tell me again why you have not been posting 😉

Great to see you back Dia we all missed your posts. Keep fighting buddy.

Kindest regards – vasbyte

David

Dear Rachel, please accept my most sincere condolences. In the short time I have known Paul he came across as a real nice guy. I will miss his posts.

Kindest Regards ? vasbyte

David

Hello mike

My partner Colin was diagnosed age 56 with mm in October 2011. He had 7 cycles of revlimid, cyclophosphamide and dexamethasone. We felt our world had come to an end when Colin was diagnosed. However we've ploughed through it and Colin has only yesterday successfully completed his stem cell harvest and is due for transplant 22nd of…[Read more]

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]

Actually Helen we are going to do something completely different. Our anniversary for the last 49 years has always been about Mo and Me. The norm would be to book an expensive exotic holiday, usually in the Indian Ocean or South China Sea area and off we would disappear, returning suitably bronzed.

This year we decided after much…[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 Helen, Lovely to hear off your trip I do hope the infection clears up for you. One of the comments in my Consultants follow up letter from my recent appointment said ?no infections yet? as if she was expecting some! It is the start of the flu season, my injection is 3rd November, which is not a good time for us all so I am keeping my…[Read more]

Hi Peter, I lost all my bodily hair accept my eyebrows :-S . Have no idea why not the eyebrows. Both times 🙁

Originally I, like most men over 65, had a swollen prostate and I was being monitored in 2008/9. Then Myeloma reared its ugly head and as my prognosis at the time was 2-3 years max, sale by date being July 2012, we kind of…[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]

Hair Hair I could not agree more – sorry could not resist it.

I am on my second lot of hair now. My hair has been very thin all my life so I was quite surprised when people noticed when I lost my first lot. I now have my hair back again although I notice it has not come back under my armpits this time nor has the five hairs I had on my…[Read more]