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Has my CML gone?

After nearly 3 years PCR undetectable, we just don't know the answer to the above question. There is a trial going on in France (or Belgium maybe) and Australia, where patients who are over 2 years PCRU are given the opportunity of coming off Glivec, basically to see what happens. The results are that 50% of patients relapse and 50% don't seem to. The relapsed group have all been able to regain their PCRU when they get back onto the Glivec. Most patients who relapse seem to do it within 6 weeks, but almost certainly within 6 months.
At my last visit to HH, I asked, after another PCRU ,as I do at every visit, whether they would be interested in me stopping the Glivec. To my amazement,this time they said they would consider it if I found the side effects too difficult. Now while I can cope with the side effects, which incidentally are many, I would rather not have them and said I would really like to try.
The long and the short of this is that for 3 days I have been off the Glivec and even so early on I feel like I have come out of first gear. The almost persistent morning nausea has gone, and my energy levels already have increased. Glivec eyes are still with me, I don't know how long they will take to return (if ever) I have had no cramp for 2 days. I didn't know how well I could feel.

I am to have monthly PCR tests in HH for the next six months then maybe every 6 weeks for a while after that, making my 400mile round trip often, but oh so worth it. I will keep posting monthly to let you know. But this posting, if nothing else gives a glimmer of hope. It also serves to point out the massive difference between HH, a centre of excellence, and my local hospital, who are caring but not as educated in CML.

6 years ago, in 2003 B.G (Before Glivec) I was among those given a 4-6 years prognosis, which itself had a devastating effect on me. It just goes to show that 6 years on when I could have been writing my obituary!!!!! I may be CML free (well it seems I have a 50% chance).

If all goes pear shaped and I end up back on the Glivec then hopefully I will have lost nothing, but I feel I will have tried. I realise that this drastic move is not for everybody, but I really wanted to give it a go.

Des

Hi

I just wanted to wish you lots of luck and I really hope that it works out well for you. You certainly don't seem to have anything to lose if you are being monitored so closely.

I am post BMT but when I was on glivec I had periods where I stopped it due to side effects and I agree, it is frightening how quickly the side effects do disappear and how well one feels when off the glivec.

If I was in your position I wouldn't hesitate to try stopping the glivec and you sound like you are prepared to accept the fact that it is reasonably likely that you MAY have to take it again. Wow, wouldn't it be great if you remained PCRU

All the best and I am really interested to hear how you do

regards
Susan

I really hope that you are in the 50% who do not relapse. My consultant today said that if you have had 2 - 3 years full response then the chances are you will not relapse and could be said to be almost in a remission period. I think the outlook has changed so much over the last few years and I really feel we can all look positively towards the future.
Karen

Hi Des,
my dr here in france told me on Tuesday that they now have 70 patients who've been able to stop their Glivec like this - it's still about 50% who become PCR positive again, but they can easily reverse this by restarting the Glivec.
They've noticed that most of the patients who keep their remission have had interferon in the past,
keeping my fingers crossed for you,
Barbara

Hi Des

I'm in a position to stop Glivec, my PCRs have been clear for 4.5 years, and my consultant has mentioned it several times to me but so far I havent had to courage to stop completely.

I've already dropped from 600mg to 400, but would love to be side effect free!!! After reading your post I'm seriously considering it. I'm seeing my consultant on May 12th and will make my mind up by then. He has assured me that he will support me fully if I decide to stop.

Best of luck to you and please keep us posted.

Patricia

Hi Des,

Best of luck with this. I too will be watching with interest. I have only been PCR undetectable for 6 months but I hope I reach the position you are in eventually.
Regards,
Colin

Hi Des,
I'm very interested in your progress as you begin your journey without Gleevec. My son is only 11 y/o. He still has a way to go before his CML is undetectable on PCR (last .068). Yet, I feel that we may consider discontinuing the meds due to side effects if all is clear at some point. I believe the studies are accurate and about 50% relapse. Yet, there has not been a problem with re-starting the Gleevec when needed. I hope all goes well for you. My son has had a few days off Gleevec here and there when he switched to dasatinib and then back to Gleevec. I can say that he was overjoyed for those few days! It really made a big difference to him. Best wishes & please keep us up to date.
Regards,
Tracey