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WHAT IS MY PCR?- Join our campaign for CML AWARENESS DAY- 22/9- and make a real difference.

CML Support Group are in partnership with other groups in a global campaign called 'What is My PCR?' an initiative set up by the MAX Foundation to encourage wider access to PCR testing.
Internationally, many patients do not have access to this important monitoring tool or if they do have access, do not understand their results and there importance in monitoring their response to therapy.
By signing up to this campaign you- as an individual- can help raise awareness of the importance of PCR testing for all CML patients, no matter who they are or where they live.

I will put a permanent link on the home page as soon as our tech guy Roger comes back from holiday. Meanwhile, you can access the 'What is my PCR' website and order a 'What is my PCR?' button to wear during your clinic visits and to raise awareness.

You can also order buttons for your doctors to wear- (What is My PCR? Ask Me)- which will encourage patients to be more proactive in asking their doctors.
I have ordered some of the doctors buttons that I hope we can give the various clinicians at Hammersmith as well as those who will attend the UK Seminar in November.

Dr Michael Mauro of OHSU Portland USA- who is a CML expert clinician, has kindly provided a FAQ on PCR.

This is an extremely important educational project that will make a real difference to peoples long term survival. As such on behalf of the members and trustees of CMLSg, I applaud the Max Foundation for setting up the 'What is My PCR?' campaign

http://www.whatismypcr.org/Default.aspx#.UE3X1cGPWtM

T'was my birthday on the day most people refer to as 9/11

Good news, than the first 3 months on nilotinib had brought it down to 0.79%

What I didn't know until yesterday when I asked, was that the bone marrow test done in March at the changeober from imatinib showed 2/3 of my cells were mutated.

I haven't posted for some while but logged into the site today and noticed this post. What a valuable campaign. Once again despite the funding problems in the NHS, it makes one realise how well off we are compared to many patients in other countries who do not have access to PCR testing. To have the ability to monitor so closely one's response to the drugs prescribed for CML is a massive bonus for us in the UK.
Thanks as well to all those contributing posts to the site - what a great resource!
My own treatment on Imatininb (600 mgs ) continues to be successful. Few side effects and PCr between .009% and undetectable since summer 2009, having commenced treatment in april 2007. i feel so lucky and wish all posting to the site the very best of fortune in their own treatment!
Regards
andy

Dear Jeff,

First: congratulations on your reduced % of bcr/abl since starting nilotinib... and happy birthday!

It always pays to ask for the details- from what you say your change to a 2G TKI was due to your doctors detecting an IM resistant mutation?

Good luck with your new therapy. We are fortunate here in the UK and western Europe, as Andy says in his post, to have access to monitoring by PCR.... and the chance to get ourselves to expert research centres for therapy.

Some regions of the world do not have access to diagnostic blood tests let alone PCR machines which monitor response to TKI therapy.
Max Foundation is working hard to find ways to bring the technology to countries and regions that are struggling in this way.

CMLSG are very supportive of MF's long term goal to bring equality of access for all CML patients.

CML Awareness Day is coming up - next Saturday 22/9. I must give recognition and thanks to Cheryl-Anne Simoneau and the CML Society of Canada for their original idea of tagging this date- 22nd September- to raise global awareness of CML and the translocated PH chromosome (22-9) that is the driver of CML.

'What is My PCR' is an ongoing campaign to educate patients (and doctors) no matter who they are or where they live - if just one human being someplace, somewhere, iff we can reach isolated patients in UK and beyond and empower them to demand access to the PCR monitoring then we are doing something worthwhile.

Sandy

Best wishes,
Sandy

Dear Andy- thanks for your uplifting post and thanks for sharing your very positive experience. and... many congratulations on your very low and stable MMR.

If you would like a copy (or several) of the PCR FAQ/buttons etc. then let me know and I will put some in the post- you might want to share them with your treatment clinic and other CML patients.

Very best wishes,
Sandy

Sandy, Perhaps I should have said that 2/3 of my cells showed up as affected by CML rather than giving the impression that this was a CML mutation.

I was tested for mutations prior to switching treatment and this proved negative. It seems that imatinib just stopped working for me.

In 2010 when diagnosed I'd turned the opportunity for a dasatinib trial but was fortunate in that Nilotinib had just been approved by N.I.C.E when needed.

if it were possible to know the results of tests sooner that the 3 months before another consultation, it would be even better. I believe there's another campaign which has something to do with patient having access to their records.

Jeff

Sandy, Many thanks for offer to post out PCR buttons, but I'd already followed web link to site, posted supporting comment, and ordered some buttons.
Kind regards
Andy

Hi Andy,

CMLS group is a partner with Max Foundation (and others) in this campaign so MF forward the requests to us and we send out the buttons/FAQ to patients here in UK- this way the postage is cheaper.

I posted yours today so hopefully your will get them in the next day or so.

Best... Sandy

Hi Jeff.
Your clinician should have your PCR result through in approx. 4 weeks from you giving your sample. Your should just email/phone and ask for him/her for the result.

Quite a few patients do that rather than stress for 3months.

Sandy

Please register and receive your package of booklet and buttons

As of 19/09/2012, 11,500 packages had been sent to indivuals and their physicians from
Canada to Africa to Australia to Asia

Have a look at the website - join in the fun but also the all important information
of knowing your PCR !!