Hi Chris, My pp went to 1.7 prior to SCT and then hovered around the 2.3 mark for 2 years. I was told at the time, of the SCT, that they expected it to start rising after approximately 18 months. You have hit one of the big problems in trying to obtain insurance "the interpretation of the results" :-S . As they say you only have a partial…[Read more]

Hi jacqui and jeff

Just wanted to wish you all both all the best for your sct….it will soon be over 🙂

Vicki and Colin xx

Hi Helen

Can't give you advice on the treatment…..but glad you had a great holiday, and that you are gripping yourself and getting ready for this next course! Re work it can only be your decision, but if you feel you want to go to work, you are well enough to go to work and you can fit around your treatment then why not. Do you do part time?…[Read more]

Hi Sarah and Henry

Yep same as babs, we got counselling for Colin through the hospital and the stem cell nurse. Both of them were great….it really helped Colin and still. Does. Best route as they get what's going on x

Vicki and Colin x

Just popped on to wish you and Chris the best of luck. Sorry, I have no experience of your situation. Please keep us posted.

Kindest regards – vasbyte

David

I am useless at ticking boxes which I tend to see as an unnecessary complication. I fill my 7 day boxes up with tablets to be taken every Monday morning, Black medications & Pink pain killers.

I look at the box if the pill is still there I have not taken it – end of story, no question of "did I take it and not tick the box" etc…

It was…[Read more]

Yes you are so right Dai, what would we do without our partners 🙂 And, you hit the button with stiff words and the occasional stiff arm once or twice I found it hard going. We had organised the trip into sections to allow for this and everybody we were visiting was warned I might have to break off the trip but with genital encouragement,…[Read more]

Hi Tom, unfortunately, not as far as I can see 🙁 . I can trace my Marriott family back to 1666 and I come from a long line of peasants, well stocking knitters to be precise from the Ashover Derbyshire area, I am afraid. I did have one uncle who lived in California and one Aunty died in a shot out in a speakeasy bar in Chicago 😎 .…[Read more]

Hi Dai

That's so of great isn't it :-). ? hope things go well for you with the treatment and even equally good you can see the grandchildren, do visits etc. great 🙂 why they didn't give you those gcsfs before I don't know eh?

Helen, how did you get that black eye? Glad you had a great time in Cornwall. Good luck with the treatment …..not…[Read more]

Hi Ali,

Hope your mum is ok….has she been on the cruise yet? Lost track!. Colin and I read early on the issues of revlimid and the secondary cancers…..it was a concern but during maintenance treatment we were just glad it seemed to be doing the trick!. However when it got to maintenance treatment Colin had other ideas about taking it as…[Read more]

Hi there,

So hope that you are able to progress this with the nhs. Colin's story of diagnosis was much more different and efficient. He went for a blood test on a Monday, phone call Thursday, follow up test flowing Monday, 24 hr urine test in the same week. A leaflet from the Gp following Colin's insistence suggested mm and then2 weeks on he…[Read more]

Hello Nicky

So sorry to hear of your loss. Mm is a very unpredictable condition and your brother so young. Our thoughts are with you.

Vicki and Colin x

Goodbye Keith and thanks for your company.

Thanks Andy for representing us.

Kindest regards – vasbyte

David

Myeloma UK ran a programme to inform GP's of the symptoms to watch out for, in fact I think they are still doing it. It comprises of a letter and a flow chart to diagnosis Myeloma. If you have not made sure each GP in your local surgery has seen it I urge you to do so. I did all the GP's in the Taunton Area, with a personally address note…[Read more]

Hey Tom,

Thanks, glad you are still feeling good. You are a great support to all of us. Colin been good again today….did gardening! :-). Me running about after him fussing…..no change there! We did enjoy the sun and we did have some wine :-), after the yard arm.

Hope you and young bride Elaine had great weekend too 🙂

Vicki and Colin xxx

Oh dear

I have thought about Keith every day since Ellen's post…..we are both so sorry, condolences to sue. This illness is a b.

Cyber hugs to all

Vicki and Colin x

Hi Sarah Jane,

Try not to worry this is what happened to Colin too. First harvest failed miserably, second one even worse! Third go he had to have plerixafor injections as well as gcsfs! He just got the 2 million! It is distressing as we didn't know it could fail until the first one bombed 🙁

By the way the same thing happened with Colin's…[Read more]

Hi Dai

Well a bit of a rocky road…..but the gcsfs at last are a welcome boost and let's hope rockets those neutrophils. Your new consultant sounds very proactive, so lets hope she can come up with a cast iron plan. I can't understand why they don't just let you have another go at revlimid. You were hampered last time due to the c diff so I…[Read more]

Hi there,
Sorry to hear about your mum….I wonder if its to do with platelets? The medical teams are great and checking out what the cause is and we hope she will be on the straight and narrow soon 🙂

Vicki and colin x