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Still undetectable

I don't often post nowadays, but check on the site often.
I had my monthly appointment at HH on 15th December and after 9 months Glivec free am still Zero. Prof Apperly has said that HH are now starting their own trial to mirror the one in France whereby people who are PCR negative for 2 years on Glivec, are coming off it to see how it goes (like me). There are now two others apart from me. She also mentioned that HH are pioneering a vaccine for the lucky ones like me and the others. This I think is for people who are PCR negative and stop the Glivec. A trial should be starting about April or so.
The general opinion for my prognosis differs. One school of thought is that eventually the CML will come back (unless the vaccine proves effective), although when is very debatable and it may not be for years, if ever. The other opinion is that after 2 years undetectable, my immune system have recovered enough to be able to counteract any bcr-abl cells on their own, meaning it may never come back.
I was told very early on in my diagnosis (7 years ago) that the Philadelphia chromosome could probably be detected in everybody, but in "normal" people their immune system can eradicate it, but something happens to us "lucky ones" and it goes a bit haywire. I myself had a severe viral infection 12 months before diagnosis, which I am convinced did something to my immune system.
Interestingly my blood counts are still very low and are still similar after 9 months to what they were on the Glivec - all at the bottom end of acceptable, but everybody is happy (I am over the moon).
It goes to show that after being given the doom and gloom prognosis that all us "old timers" were given pre-Glivec, the future can look very rosy for many of us now, just take one day at a time and make sure you all see a centre of excellence for this dreadful disease.
A happy, healthy and peaceful New Year to you all.

Wow!!! How amazing!!! You must be thrilled to bits with this result and to have a wonderful break from Glivec. Like you, I had appalling virus, three years prior to dx which lead to pneumonia & pleurisy.. I was never given a blood test at that time and felt too ill to fight for myself. I don't think the virus triggered the CML, but I do think that I became as ill as I was because of the CML.
Thanks for the advice about going to a Centre of Excellence, something Sandy suggested I do a long while back and, following a completely negative attitude towards our fight to keep the second line TKI's this is something that draws me ever closer to my shared care hospital, Kings.
I wish you all the very best for 2010 and thank you for sharing this wonderful piece of news and for the vaccine info.
Vickie

Delighted to hear such good news. Long may it last

regards

Susan

Dear Des......this is truly great and almost fantastical news!!!
Who would have thought that we would be here today,10 years on, talking about stopping Glivec and remaining PCRu? It was enough in those days for us to wish for a response - any response- that would keep the PH clone under control. We have come so far in such a short time.
I am so heartened to hear this news...including that about the vaccine... and wish you the very best for the New Year.

Later today I will post an article written by John Goldman which is an overview of where we are today.. this makes interesting reading in light of the battle that UK CML patients are facing in getting access to the best current therapies.

Happy New PCRu Year

Sandy

Sandy

Well done Des.
What an inspiration you are to us all.
I have had my blood samples taken two weeks ago for a RT-QPCR.
Will be seeing my specialist on the 20th and hope he has the results by then.
This is now my 9th month off Gleevec and still feel great. So I will hold thumbs for a "undetectable " result.
I recorded a slight bump last August, but my last test in late October 2009, was back to Zero.
My RT-QPCR tests are done every second month or so.
Will advise the forum when I have the latest results.
Basil

Edit: 19/1/2010

I have just got back the results of my tests done on 6 January 2010

My results remain "undetectable"