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DESTINY update

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Just to say that I'm now entering Month 10 - PCRs still between 0.05 and 0.06 (IS) so although holding steady it's not looking especially good for coming off IM altogether in a couple of months. Enjoying the half dosage while I can! Seriously thought April/ May was the end for me and DESTINY, but pleased to be still hanging in there. Where has everyone on this site gone?? Best to all, Chrissie

I was most interested to read your destiny update. I've just completed month 10. So far, so good.

Might they "just" keep you on half dose?

Guess that makes you one month ahead of me. I would love to be kept on half dosage if I fail after coming off the meds, but time will tell and I have a feeling it will be back to 400mgs if I fail. I haven't had the kind of journey that you have, fortunately. You have been through the mill and I really hope that you hold MMR when you come off and can live your life meds free,

Best of luck
Chrissie

I'm permanently on penicillan for risk of such as meningitis. (Post BMT)

And oh the irony.... I reduced the dose of glyvec and my blood pressure increased. So I've had to go on medication to try to reduce that! That had always been o.k.!

Obviously I'm hoping to come off glyvec but I went on the trial more for the sake of research. If my counts are affected then I'll very simply just go back to full dose and just as I've been for the last 15 years.

I think I'm just ahead of you. Next Wednesday will be month 11 check up.... fingers crossed it's all stable :)

Chrissie and Darley,
thanks for your updates, and good to hear you are both maintaining low counts on 1/2 doses. I suppose if you do see an increase during the second half of the protocol, when the trial is finished and he data is published (and hopefully the case for dose reduction is proven) then many patients can look to reducing their dose.
I suppose that would depend on whether close monitoring would be available- this may be a worry for some who are treated at general haematology clinics rather than CML specialist centres.

Chrissie- I think this is a quiet time due to holidays etc. and people may only have their mobile phones to access the internet. This site is not so good on smaller screens and to that end, we have been working really hard to redesign and update this site and so have built a new one which will be launched in a couple of weeks.... hopefully the new site will serve the needs of our 'community' a little better.

We have several volunteers who are testing the new site over the next week or so which will help iron out some of the potential problems with usability and relevance of information.

I will put out another post nearer to the launch time so you are all ready ;o)

Meanwhile, I hope DESTINY proves to be a success for the majority, if not all, who are taking part. Glad to hear you held your response Chrissie and were able to continue.

Sandy

Hi All

Well I've heard from my local hospital that my latest blood sample for HH (for Month 9 on half dose IM) is standing at 0.17 (IS) so I'm back to provide another sample on Tuesday.
Fingers tightly crossed that this is another blip.

I feel like a yo yo,

Best
Chrissie

Hi Chrissie,
hopefully your next sample with show a drop back down again....remember single pcrs are not to be trusted.... best that they show a trend, good luck,
Sandy

If most people can live with reduced/half dosage (not come off completely), then proving that in itself is a great win. I would love for a dose reduction trial to take place in Norway at some point. Im currently on 400mg imatinib and really feeling the side effects. My results have been at around 0,01 and 0,02 the last few years so hopefully i would be a candidate.

So far so good. Blood counts are all absolutely fine and nothing to note.

Excellent, Darley. Having been through so much it's good that you're doing fine on half dose.Bodes well for stopping altogether.

Best
Chrissie

Good Morning Everyone

My update is I am currently 6 months off medication altogether and my results are continuing to stay stable at zero. Feeling amazing and very lucky

Just shows that some CMLers can hold MMR treatment free. Wonderful result, Julie. Are you scoffing grapefruit as fast as you can go??

Fingers crossed that you stay this way for a further 6 months and thereafter,
best
Chrissie

Thank you so much Chrissie

Do you know because I have been on glivec then nilotinib for such a long time and haven't eaten grapefruit for so long I have gone off them and don't fancy them at all now I can have them!!!

Kind Regards

Julie

Hi all. Just to update I've completed the first year of Half dose Dasatinib. PCR has ranged from 0.000 to 0.002. Today is my first day in over 5 years off the meds and I've got everything crossed. Hope all you destiny warriors are doing well

..... with your treatment free "new" life. You've certainly got nice low PCRs well sustained over the past year. We shall all be watching with interest, so please keep us posted.

Grapefruit for breakfast?? (I think I'm getting obsessed with grapefruit, or shall I say lack of).

Best
Chrissie

I'm a month behind you. I go to Leeds next Wednesday and if everything is good that will be me stopping glyvec after 15 years on it.

Check up last week and all remains well and good so far. After 15 years on imatanib if all remains well then this could be my last month on it :)

I'm into the 11th month now. Just got my PCR back from HH for Month 10 after a 3 week wait - still hanging in there at 0.034% IS after a couple of earlier blips. I guess as we're tested every 4 weeks we'll have 13 months on the meds to make 1 year?
Still don't know if I'm brave enough to come off Imatinib after the 13 weeks! decisions, decisions...

Best to all
Chrissie