[DaiCroParticipant]

Hi Mavis,

Well I'd like to say that I'm still on a high… but… I started my week's 'rest' – the third week of the cycle – feeling in good spirits but I started feeling unwell with dodgy waterworks last Sunday and ended up with a high temperature. So I made the 40 minute journey into the day-care unit of my hospital on the Tuesday afternoon. I had phoned the unit earlier and I was told by a doctor to make sure I got in before 5.30pm as the doctors went off duty at that time. I arrived at 4.45pm to find everything closing up and the only available Doctor (not the one I spoke to) with her coat on and about to leave.

The nurse were still on duty until 6pm but there was no one able to test the bloods etc… until one of the phlebotomists hove into view and one of the nurses collared him. The nurses are wonderful. Before I knew what was happening the phlebotomist and his colleague had fired up the requisite equipment, took my blood and got the results back within 15 minutes. The doctor had waited for the results and once she was satisfied that I was not neutropenic she took off her coat and preceded to examine. Within the hour I was on my way home with a five day course of anti-biotics.

The anti-biotics have worked… sort of but I still feel hot and bothered with my temperature hovering around 37.5 for most of the week and reached 37.9 last night. I took a couple of paracetamol and my temperature has dropped to 37.0 and stayed there… but I am writing this at 4.30am with no sleep and none to come by the look of things.

Still… clinic this morning, followed by the start of Velcade Cycle 7… as long as my consultant finds me fit for duty. 🙂

Such is MM.

Dai.

[DaiCroParticipant]

Hi Min,

All I've got to say is:

🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂 😀 🙂 🙂 🙂 🙂 🙂 .

Dai xxx

[DaiCroParticipant]

ITY = YETI

ETI to you.

Dai.

[DaiCroParticipant]

Hi Shirley,

I'm sorry that you are going through the mill with GVHD. I hate not being able to breathe freely so I really feel for you… but as long as it clears up and gets you on the road to full health then all well and good.

Dai.

[DaiCroParticipant]

Okey dokey..

As Steve Nash he could be:

[b]Seven Hats

or

Ten Shaves[/b]

With Stephen:

[b]Then He Snaps

or

Hen Spat Hens[/b]

Dai. 🙂

[DaiCroParticipant]

OUS = MOUSE

Leaving USE

Dai.

[DaiCroParticipant]

A couple of name anagrams for Gill:

[b]Was Lead Girl!

Swig All Dear.[/b]

Of course, if your first name is Gillian… then:
[b]
Wild Ale Sangria

Nil Earwig Salad

Awarding Allies[/b]

And three for Stephen:
[b]
Preheated Swans

Depth Awareness

Awards Ten Sheep[/b]

I'd like to try a few more but I would need a surname… 🙂

Dai.

[DaiCroParticipant]

I'm doing a happy dance… 😎

Dai.

[DaiCroParticipant]

Excellent news David – not only holding firm but still dropping as well. 🙂

I wouldn't mind having heavy chains… the Kappa Light Chain/Bence Jones MM may be exotic but it is also complicated. I like the idea of 1, 2, 3 – nice and simple to understand.:-D

Enjoy the next 3 months sojourn and here's to many, many more of them. 😎

Dai.

[DaiCroParticipant]

Hi Gill,

I agree that the news is devastating… but I'm surprised that the prognosis is so definite. What if the Revlimid works? Velcade is reactive, i.e. you take as many courses as you can and then hope for a bit of remission but Revlimid is proactive… you take it, it works… repeat ad infinitum (ish).

Stephen has had some pretty rough luck with his treatments but that is not to say that Revlimid should be the same. Unless your consultant has some reasoning that can determine that Revlimid will fail after an initial period… but that doesn't make sense to me… and then there is Bendamustine and Pomalomide etc.

Its not just wishful thinking on my part… between them, the treatments still available, plus those on trial and those about to come on trial could extend the prognosis to 2 years and who knows how much more?

I hope that Stephen confounds everyone and finds that he and Revlimid are Tickety Boo together. Janet and I met a woman at the Nottingham INFODAY in March who is coming up to 6 years on Revlimid… after everything else failed pretty quickly… and while that is monstrous good fortune it shows that you only need to find one treatment that suits to provide a bit of hope and longevity.

Dai.

[DaiCroParticipant]

Hi Gill,

While every word you speak is true… alas these are not mine… just examples of famous anagrams.:-D

I do like making anagrams of friends names… perhaps I'll try a few here. 😉

Gladnost.

Dai.

[DaiCroParticipant]

Hi Linda,

Nice to meet you. 🙂

I just wanted to say hello and to echo Bridget's excellent point about not allowing MM to define who you are and everything you do.

I tell my children that the best thing they can do to make me happy is to be happy themselves… that knowing they are healthy and whole and engaged in life, for the long term, is all I would ever want from them… and that includes all of the little bits of life that glues the big bits together.

Regards to you and yours 🙂

Dai.

[DaiCroParticipant]

Good news is good news and I am delighted for you Jet. I hope that your remission is both long and trouble free.

I appreciate that it is difficult to both remain positive and to gain an equillibrium of physical and mental health when faced with experiences that do not reflect your personal status.

The stories about problems, decline, relapse, death, etc. are by-products of this disease and personally I have to say that the courage, humanity and honesty demonstrated by these posters inspire and uplift my spirits on a daily basis… although I wish that the problems associated with their stories were not so.

Surround yourself with positivity… I wish you naught but well.

Dai.

[DaiCroParticipant]

NCY = CYAN

YAN up for grabs.:-)

Dai.

[DaiCroParticipant]

Hi Peter,

Good to meet you.

I find the duration of your Velcade remission most interesting. 3 years seems a long time… (so I appreciate your collywobbles at each clinic meeting). 🙂 I achieved CR (0) after 5 Cycles and I am going on to complete the 8 Cycles (Just finished 6). 😎

My consultant was looking at 6 to 12 months remission (dependant on results) at the start of treatment. I don't know how they gauge remission length (I read 6 to 18 months with a 12 month median somewhere on the Velcade site) it is one part of the science which will always be inexact I suppose. 😛

Still, you are living proof that medians can be stretched… good luck to you and long may your remission continue. 😀

Dai.

[Author]

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