[DaiCroParticipant]

After two weeks of shredded nerves we attended our consult today to find out if it's carry on with Rev & Dex or move on to the Bendamustine trial.

Our consultant had to look up my latest Freelight test (apparently it wasn't back this morning) and she looked up and said ' the Revlimid is working'!'

My kappa light chain reading started at 311 – came down to 156 went back up to 212 – apparently came down to 176 (I wasn't told about that reading) and now it's down to 112… With the Ratio down from 9.5 to 5.

So it's carry on with Revlimid & Dexamethasone.

Sounds simple doesn't it? But it doesn't allow for two weeks of fear and fight… With an almighty personal battle to remain positive… Fighting off negative thoughts and possibilities… striving to remain positive and only seeing the possibility of continuing with Rev & Dex… With the willingness to fight for it if the readings erred on the negative.

But it seems there is no need… I can carry on being positive and building up a relationship with my treatment.

I am ecstatic… But wiped out (only 2 hours sleep last night)… I am also mightily relieved and exceptionally grateful… But I wish that someone had thought to tell me that the interim Freelight test showed that drop to 176…. I honestly believe that no one had bothered to look at my results until this am.:-0

Still… Here I am and here I go… With Rev & Dex onside.

Extremely happy, eternally grateful for this and every other positive aspect of my life (especially Janet xxxx) but completely washed out. 😎 🙂

Dai.

[BADGERParticipant]

Brilliant news Dia so it was a blip a good job you decided to stick with it I hope you can have a great nights sleep hopefully you and Janet can now relax a bit
Big (((Hug)))
Love Jo x

[OutdoorsPaulParticipant]

Dai
Fantastic news mate keep up with the positive vibes.
cheers Paul:-D

[PerkymiteParticipant]

Good Going Dia, just keep up the good work.

I had a similar situation many moons ago now with my blood test results. So I altered when I had my blood taken from a couple of days, that I was told to do, to 5 clear working days before. Now I know all my results will be available and I always ask, good news or bad it does not matter ? they are what they are and I would rather know.

Vasbyte my friend vasbyte

Kindest regards

David

[MariParticipant]

I am chuffed to bits to hear your news Dai, but so sorry to know you have had such a tough time over the last few weeks. I admire your strength and positive outlook. I wish you a very happy and long lasting relationship with Rev and Dex,

My love to both you and Janet,

Mari x

[jmsmythParticipant]

I am over the moon to read you news Dai. You and Janet deserve something positive. Really great.
Love Jean xx

[DaiCroParticipant]

Thank you one and all.

I am a strong person… with some of the things I have had to put up with in my life it was either be strong or fold up like a piece of paper until it was physically impossible to fold any more.

I will cope with whatever happens in the future but somehow this potential early Rev & Dex failure became personal… it was me Vs MM and I just didn't want it to win… not now, not yet. These past few days I have been thinking about Peter and Gordon and Patrick and Gaye and all the others that I have either known or known of during the past three years or so and I wanted to fight back… just a little… to win one small victory through will power and desire and sheer bloody mindedness.

Well I got what I wanted, however small the victory and I intend to keep on fighting in a positive manner, using every single tool available to me, be it diet, positive thinking, healthy living, avoiding infection, attracting good fortune, making each day the best that I possibly can until the day comes when I accept that I can do no more… be that as far away as I can possibly make it.

But for all that I felt flat tonight… no sense of joy or jubilation, for all my positivity and good intentions.

Then I watched Jools Holland's 'Later' on the BBC iPlayer… and Dexey's Midnight Runners singing 'Come On Eileen'. Gone were the Denim Overall's and youthful exuberance and in their place were a bunch of old men singing an anthem of a day gone by.

But bloody hell did they sing it well… and the years rolled away and I was lying in bed singing along at the top of my voice and when it finished I burst into tears and cried for no reason and every reason and it was just what I needed… just what I wanted and if the Doctor's had any sense just what they should have ordered.

Great cuddle with Janet… she understood bless her… and now I'm okay and ready for tomorrow and whatever tomorrow brings.

Love to all 8-).

Dai.

[jmsmythParticipant]

Dai you are okay and ready for tomorrow and I'm so happy for you.

Love Jean xx

[ElizellenParticipant]

Such good news, Dai!!

Thinking of you singing along with "Come on Eileen" brought a tear ot two to my eyes.

Keep on keeping on!!

Eliz
XX
X

[img]http://www.keepcalmandcarryon.com/product_images/i/663/KEEP-CALM-AND-CARRY-ON-PAIR-OF-MUGS_large__56226_std.jpg[/img]

[tmcParticipant]

Hi Dai
I am so happy for you and Janet. This MM sure puts us through the emotional wringer. Hope you can relax and unwind a bit now after such a nerve wrecking time.
So re charge the batteries and I look forward to hearing your news.
Big sigh of relief for Janet
LOve Teresa.

[BADGERParticipant]

Hello Dia

I have always liked dexys my daughter was taught guitar by their road manager so we met them a couple of times
Regards Jo x

[tomParticipant]

Now aint I said that before The "You can do it Dai, if anyone can then its you" and am as pleased as punch that you have proved me correct, way to go Dai Onwards and Bloomin Upwards, am sure you have more of the "Whatever it takes" in you than I have and I aint gonna let it take me without the Fight.

Keep strong Dai and keep fit 😎
(shed a tear mesen reading your posts lol)

Tom "Onwards and Upwards" x

[TrigletParticipant]

Hello Dai

It's always good to read your posts. I too shed a tear reading your words, but for me it's your absolute honesty and gift of sharing your everyday feelings that means so much, so thank you.

The reply you sent Gail on the 17th was another one that had me crying – but in a good way. It was so, so true and very uplifting, Yep – crying and singing, sure do help!

Best of luck with your 2 best friends (R&D), may they continue to support you for a long time yet.

Kind regards, best wishes to Janet and thanks again.

Rosie

[DaiCroParticipant]

Jean, Eliz, Theresa, Jo, Tom & Rosie,

Thank you for your lovely supportive replies. 🙂

Yes, I am trying to be honest and reflect how I am feeling but it does sometimes also feel a tad self-indulgent… but I'll decide to be kind and allow myself that small sin. 😉

Today was a bump and run day… being DexDay TM and all. 😀

I have realised that DexDay TM has to be given over to a lie-in, followed by a day in the recliner or at the desk… watching films or being creative, if the muse allows… because going out is not an option due to the several changes caused by the 'sweats'. I sweat whether I sit still or try being active… I don't necessarily lack energy, it just comes out regardless of activity. So we tend to watch TV series or films, with timeouts for pastimes and small jobs.

The only time that I ventured out on a DexDay Tm, (for an interim bloods test and a consult with my lead nurse) the phlebotomist became concerned because she thought I was having a cardiac arrest and other clinic visitors cast me worried looks… and I changed 'T' Shirts 3 times in the hour I was there (plus another 2 changes in the car on arrival and departure). 😛

So Tuesday has been nominated my day of rest and Sunday, (along with Monday my most energetic day) has been promoted to 'Up and at them' day.

Topsy Turvy but what isn't in MM land? :-0

I love life… and I refuse to dilute it by looking over my shoulder at what might have been or gazing at a not so distant horizon and thinking of what might never be… life is what it is… wonderful beyond words and I intend to treat it with a sense of joy and wonder… day by wonderful day.8-)

Thank you my friends. 🙂

Dai.

[tmcParticipant]

Hi Dai
You always seem to know so much and are really interested in upcoming trials and treatments. I was wondering if I could send you an email I have received from Toronto and District MM it's their newsletter #88 and you may find it interesting if you haven't already seen it.
They mention Velcade's cousin Carfilzomib which is waiting FDA approval and other treatments in the pipe lines.
Not sure how to attach it here do you think ypu may want to see it?
Love Teresa.

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