[DaiCroParticipant]

I am trying to convince myself that I am being positive… and to a certain extent I am but Gill's post made me realise that positive or no there have been questions raised, doubts put forward and eventualities explored outside of my control and with belated involvement on my half.

While I was in hospital with my infection last week one of my consultants came to see me (it was an assessment ward and so someone from haematology had to visit and control). She said that my Revlimid scores were not good… that what my Lead Nurse called a blip (my light chains started at 311, came down to 156 and then went back up to 212) was more of a concern to them, especially as I was catching infections. Basically she offered me a trial on Bendamustine… she said that if Revlimid does a U turn and starts bringing the light chains back down then I don't have to start the new treatment but they needed my permission to apply as the trial was about to close.

I will find out next Monday… but the impression I got, quite strongly in fact, was that, in their eyes, Revlimid has failed… and Bendamustine is on.

Revlimid has a median of 30 months… Bendamustine 6 months to 1 year.

My position is this… I didn't want to have my SCT when proposed… I wanted the CDT to run its course first, seeming a pity to waste a perfectly good and absolute remission before necessary… and this same consultant said it was a 'no brainer'… it had to be the SCT… which failed after 10 months… while the CDT, due to other problems with my harvest, was still going strong, at 0 remission after 6 months… still my biggest regret.

So, unless the Revlimid has gone up again considerably I want to stick with it. American studies have shown that it is flawed to give up too soon on a treatment, that not everyone gets the results needed in a short probation period… and I agree. So if my light chains are still around the 212 to 250 marker then I am going to fight my corner…. and if it fails and Bendamustine is no longer an option then it is down to me.

Janet finally got me to watch 'The Secret'… about the laws of attraction, where you visualise want you want from the Universe… you actually demand it, visualise it and its yours. Well I was dubious but I watched 3 times so far and again later this week-end… and I get what Janet saw/sees in it. If you think negative then that is what you will get… think positive, demand, visualise and that is what you get. Simples.

Well I want Revlimid… and I will make it work… and no 3 month trial, NICE funding or no, is going to stop me unless they can prove that it is not working to the point where it is getting out of control… my body is certainly not saying so. Otherwise they are going to have to refuse me the treatment… and then I really will fight my corner.

Its my life, my MM and therefore it should be my call on which treatment I persevere with… unless they can categorically convince me otherwise.

I have been guilty of putting my head in the sand on this development but Gill & Stephen's experience and bravery have shown me that I should share and be upfront with you all.

I'm not dead yet. 😉

Dai.

[MariParticipant]

Dai, once again your strength, commitment and bravery have inspired me. You hang in there, fight your corner and keep this disease on the run. I am certain that a positive attitude can play an active part in the way the treatment works,

much love to you both, Mari xx

PS where can I find 'The Secret', I would like to watch it

[BADGERParticipant]

Dia
fight your corner I know you will not give up I have every faith in you
I agree they dont give up at the first hurdle in america they try and get over what they call blips I think in this country to many doctors are tinkering around the edge where in america they are much more focused on myeloma and specialise much more
Big hug Jo xxxx:-)

[tomParticipant]

Dai you my friend are one that I know will crack it you are the one that will push your dr and consultants into your way of thinking unless they prove to you that what they want for you is better for you, you are no one's fool we can all see that, so good luck with it all.

And Mari I found this on You Tube

Hope it helps

Tom "Onwards and Upwards" xx

[RozParticipant]

Dai, I wish you all the best…Keep pushing the consultants, and fighting em while you can.

All the best to you

Love and best wishes
Roz xx

[DaiCroParticipant]

Thank you all… your support is very much appreciated.:-)

Apart from my CDT my other processes and treatments – SCT and Velcade – relapsed very quickly… [b]but[/b] I have always done well while actually on treatment… so therein lies my hope… the American way will be my guide and I am going to request another 3 cycles of Rev & Dex before any final decision is made. Of course, if my kappa light chains start soaring then bring on whatever's available… but I would like the challenge of turning the chains around by allowing Rev & Dex and Me some time together.

That's the only way I see it… and if they start on the 'but Bendamustine might not be available' line then I say 'so what'… throw the kitchen sink at me… I'll try CDT again… or any combination you like… anything that gets me within touching distance of Carfilzomib – so around 18 months will do nicely by the looks of it. 😉 😎

Dai.

[tmcParticipant]

Hi Dai,
I replied to Gill's post about failed Rev so will not repeat myself.
I must admit I admire your courage and determination and ability to take on the NHS if you have too.
My son will have his first child (a boy)in Oct and my husband has put his bloody mindedness hat on and will be there to see him.
I sometimes wonder if mind really does overcome MM!
Take care thinkihg about you, especially Janet as we are in the same boat,
Love Teresa.

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