Hi Dai,

Good luck with this new set of treatments :-), come on beat it into touch like the c diff……you do tell a good story and Although it's not funny you make beating c diff entertaining 😉

I know nothing about this bendamustine, but all I know is that you've got to hang about for manège sake, and the rest of us because for me I get…[Read more]

Blimey Jean and Frank,

That's a bolt out of the blue eh!. Sorry about the united but if that's man it'd then no loss there LOL (sorry Frank!).

It is weird when the SCT cycle starts, I can remember saying to friends how nervous we both were and they said, but that's what you've been bravely working towards! And they are right, however it…[Read more]

Yes ted, keep the fluid intake up!. Helen's description of the light chains was much more eloquent…….medical background see!

Good lick with your results ted and no need to beat the 31000 record!

Vicki and Colin x

Hey Megan,

Just noticed Phil has his cells harvested…..that is great and wishing you all the luck for the 17th. Start a thread up so that we can keep up and also give you both the support you will need 🙂

Vicki and Colin x

Hi Tom,

Welcome seems a funny word, but this forum is so helpful to you all as those with the condition and us supporters, who give some help where we can.

My partner Colin was diagnosed in 2011 and has been on the myeloma x1 trial, resulting in an SCT at the end of October early November 2012!. it's not the same treatment as you but he is…[Read more]

Firstly happy belated birthday to your 3 year old cells Tom……you do look young for your age :-), long long long may it continue!

Liz and kev sorry to hear of kev's little stay on hospital…..never good but hope the abs do the trick!

Keep the party going Tom and get that hair cut 🙂

Vicki and Colin x

Ah Ali, that's lovely. Nice photo of them both.

You resemble your mum :-). She looks like a real bundle of fun!

Nice to put a face to a name….

Colins line came out today, so free of all gadgets! Hooray. So relieved. Bloods doing good and we are told he can eat normal food now, even Stilton! However we are saving that pleasure just in…[Read more]

Hi ted,

Colin was told his pps were17 at the start of his diagnosis, but his light chains were 31000. (yes that's 31 thousand!). The consultants never really explained the difference or significance of each, but I think the light chains are significant due to floating about and affecting the kidneys……I could be wrong and not…[Read more]

Hello marija,

Welcome to the forum. My partner Colin was diagnosed in october 2011 and just had a transplant in October 2012, came home end of november 2012. This forum has been a huge help to blvd of us, either for me asking supporter questions, or on behalf of Colin as regards mm. I won't say I'm still not upset or worried but you sort of…[Read more]

Hi all,

Thanks Helen, Mavis and Dai for your good wishes. I'm still on tenterhooks waiting for something untoward to happen. I reckon Ali has a web cam in our living room because she said she had visions of me sticking thermometer in colins ear when he is asleep……not far wrong ther! 🙂

Ali, Colin is still very tired but is capable of…[Read more]

Hi Peggy,

Good luck to you!, Colin as you might know had his SCT done just recently so it's fresh in my mind. He took in DVD player, kindle, iPad, some writing paper. I would say he used each of them only a small amount as tiredness and concentration wained, as did from time to time not feeling up to it!. There is a tv in the room and that…[Read more]

Blimey Sarah and Henry,

What a rigmarole! I know what you mean about the care Sarah, you only want the best. Fortunately for us ours has been faultless, however Colin has had to rein me in a few times when I'm on the verge of trying to be doctor!. It's also very frustrating when it comes down to money….we had the same thing with the…[Read more]

Hi all,

Good news with SCT nurse today! We are told the below results are very good, and his line can come out Monday, they did not have time to do it today;

Haemoglobin up to 12.7 (13 is the lower end of normal)
Platelets, up from 41 to 90 (about half way to normal)
Total White cell count 3.4 (3.6 is lower end of normal)
Neutrophils 1.9…[Read more]

Hi Carol,

Just wanted to say hi, sorry you've had a relapse. I'm glad to read your new treatment regime is going well and you feel more positive. We will always be grateful for the words of support you gave Colin and I at the beginning of his treatment and hope we can support you in return! 🙂

Colin had his SCT a month ago, so far so…[Read more]

Hi Tina,

May. Ot be much help, but question, have your mouth ulcers etc gone altogether yet? Could that be a cause? Colin was given muguard to do mouthwashes and the good old fashioned salt and water mouthwash a few times a day? Wonder if that might help. Also do you have a really dry mouth as that might also be a cause, I remebr the hospital…[Read more]

Dai,

If anyone can do it you can. Your poetic words, even in relation to c diff, should be a reward to get some success and cessation for your ongoing tummy trouble. You have had a lot to contend with. And yes I agree revlimid can't work if it's not in your system. They need to give you another go…..I'm for starting the Dai for revlimid and…[Read more]

Hi all,

Whimps we are southern softies, too cold to go for a walk today :-), so we are saving it! Tom, I like the idea of us having an award, V C sounds good enough! Colin definitely deserves it, as I was only the small part player but by gosh that was hard enough! 🙂

Jill, I hope your mum Is continuing to do well on her treatment, at 83…[Read more]

Hi Emma & Ali,

Emma just a quick note to wish your mum well on her treatment, and so glad her kidneys have improved too. A huge bonus. This time last year colin had done one cycle and started the second. It felt like a massive mountain but it was surprising how we soon got into the swing…..not normal but a new normal!

Like Ali we didn't…[Read more]

Ann and Pete,

Always ask away……will help where we can. And yes we are still at home……it's great. Be prepared for Pete to sleep a lot and you to feel nervous at every twitch, sniff or flush of the face!

Chris."…….would be great to meet up with you both when we've got more energy in the new year!

Vicki & Colin x

Dai,

That was a lovely post, I imagined it all as it conjured up a lovely image of you and Janet :-). Colin said it all seemed very strange and even now……yep we are still at home!, colin will look at the birds, wander around the house and basically value it all as a new beginning.

Ali, is there a web cam at home…..how did you know I…[Read more]