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New to here (sadly)

Hi all,

I stumbled across this forum when researching CML as I was diagnosed just under 4 weeks ago now. I’m 34 and I’m still slightly in a daze although I think I’ve got my head around it now. Looking back I felt quite poorly for some time but didn’t think anything of it. A long story short, I had a blood test for something totally unrelated and results out of the ordinary showed up prompting further tests, and subsequent diagnosis. Firstly i was severely anaemic and then a heamtolgist confirmed CML.

In just 3.5 weeks on imatinib my FBC has changed rapidly: WBC down from 180 to 13. Hb up from 8.6 to 11.1, and a test I haven’t seen mentioned here at all LDH down from 2100 to 650.

Thats all very good and I feel better than I have done for months, however my doctor is saying soon we will be looking at the disease on a molecular level and I was wondering if anyone had any info on what to expect in simple terms. I’m slowly wading through some pretty heavy research and I’m sure i’ll understand soon enough, but some simple help would be much appreciated right now.

Many thanks,

David

 

This should get you started.

http://treyscml.blogspot.com/

It helped me.

Romo

Hello David. You are four weeks ahead of me, so I was interested to read your post. It must be so much worse at a young age to receive this diagnosis. There appear to be many very encouraging articles on the Internet. My consultant told me that there is a not inconsiderable group of people who feel well following their initial treatment and stop taking their medications and the statistics are upset by this non-compliant group.

I was also told by my consultant that it is a "summer disease": for no apparent reason, the diagnosis of CML occurs far more in the summer than in the winter.

Thanks for the info Romo, that’s much appreciated.

Nimbus, I’m sorry to hear about your diagnosis as well. I think it’s just as bad at any age and it’s great to find a group of people all sticking together and helping each other out. I read a few things about the importance of taking the medication correctly which I can assure you I’m planning on doing, as I’m sure you are. 

It looks as though blood counts return to normal quite quickly and I feel absolutely fine now, I just don’t know much about what the treatment is aiming for further down the line. It’s strange to feel well again but know that something is wrong. When can you be considered well again, or is that individual to each person?

David

 

Thanks for posting blog url. I had forgotten about it. I had checked it out 6 months ago when newly diagnosed. Rereading it is vey helpful. Gitel who is slower than a turtle, and an old lady.

My main interest in this blog is the Stem-Cell Essay.
Understanding the life of the Lukemic stem-cell is understanding
why the CML is chronic, and not cured with TKI’s.

...and where the cure is hiding.

Happy journey.

Romo

Gitel,
If you are alive you are important.
Stop saying that you are old.
You are wise and we like you.
We are a family you are a member.

Take care, we love you.

Romo