You are here

Recently diagnosed December 2013

Hi everyone,
I would like to introduce myself to the forum and have been reading this site since being diagnosed in early december 2013 and find it very informative and supportive. As you all know from experience, this has been a worrying time for myself and my family but this site has helped us through the early stages.
I am a 53 year old man on 400mg Gleevec and am not having much in the way of side effects so the treatment seems to be going quite well. I am being treated at Derby Royal Hospital and have just had the results of the 3 month bone marrow test and am at 10.9%, so not quite the 1 log reduction target.
Knowing that CML is a rare condition I was surprised to find that a colleague at work was also diagnosed around september 2013 so dont know what the chances of that is! Has anybody else come across this before? This raises big questions for me about expoisure to chemicals such as benzene (found in some Diesel & Aviation fuelsi) in the workplace. How many of us may have been exposed to something that MAY be a contributory factor to CML, but we may never know.

Thanks to all who contribute to the website as it has been a great help.

Hi Martin and welcome to this forum and website. I am glad it has been helpful to you since your recent diagnosis, a time which, as you say, is very difficult to deal with.

Firstly, congratulations on your 'almost' 1 log reduction at the 3 month mark. 10.9% is pretty much on target for an optimal response according the 2013 ELNet recommendation. Given the sensitivity and stability of qRT-PCR testing following diagnosis and start of TKI therapy, in my opinion you should be pretty happy with this first result.

The qRT-PCR test comes into its own - i.e. is extremely accurate under the right conditions- at very low levels of disease especially below CCyR (<1.5%)and given that you are looking at a 'snapshot' of your % level of BCR-ABL as it was some weeks (4?) ago, looking on the positive side, you may well be approaching CCyR as we speak. If that is the case, and there is no reason to think otherwise, you may well hit the 6 mth ELNet target for optimal response which is BCR-ABL% at/below 1% and/or Ph+ cells @ 0% (CCyR). ELNet goals are of course tied to testing labs allied to the international standard.

Here is a link to the ELNet 2013 recommendations in the form of a 'pocket card' which you might find useful. It's possible to download it and print off as a handy guide for future reference when you next see your doctor.

Pocket Card LeukemiaNet recommendations for the Management of CML (2013)
www.leukemia-net.org/content/leukemias/cml/recommendations/e8078/infobox...

I must say I am very surprised that your work colleague was also diagnosed with CML! It does raise the question of chemical exposure (for you both?) given that the incidence of CML is 1-1.5 per 100,000 people.

Good luck for reaching your next milestone,

Best wishes,
Sandy

Hi martin!

I have a friend, who is also my neighbour, who has CML since 2002. Don't worry too much about the 10% in 3 months, the difference between optimal and suboptimal response at 3 months it's not that big (95% x 85%). I was diagnosed at the same time of the year and i'm waiting for my results now.

cheers

Hi,

I once went to outpatients at the centre in Leeds and bumped into someone who lived in the next village to me and who also had CML.

I've never troubled myself to consider 'why me'. I don't want to waste emotional energy on that. Rather I prefer to think "why not"

I've occasionally been on the receiving end of someone's 'wisdom' and heard it was pylons, lead in fuel, magnetic field, electrical field, benzene, etc etc.

All stuff that frankly everyone is pretty much guaranteed to have been 'exposed' to.

Such is life!