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Newly diagnosed with cml

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Hi there
I just stumbled across your site today. And I am so glad I did!

My name is Nancy and I was diagnosed November 15 of 2019 with CML at 68.

I just got married five months ago so this was a little bit of a surprise.

I'm looking forward to learning from others who have been on this journey much longer than myself.

Something that I've learned in life is that offering support and encouragement when things get tough means everything.

One thing I would like to learn more about is how to read the lab tests and how to interpret them for myself.

Any tips??

Joining this journey with you,
Nancy

Hi Nancy,

One great thing, in the mire of crapness that is leukaemia, is that it’s really quantifiable and easy to biopsy. We are lucky, compared to breast cancer patients for example, to be able to express things in numbers and percents and know what that means. It’s a double edged sword, because with that precision comes a lot of complexity.

We wrote a booklet with cooperation from the UK National Clinical Research Institute about testing for CML and what it all means. So you can trust what that says. You can find it here:

https://cmlsupport.org.uk/node/20097

Honestly, as a newly diagnosed patient you are going to find it overwhelmingly complex to understand lab results. Just read until it stops making sense and then ask here for any help you need. 

Do you mind me asking where you are being treated?

David.

David? - You're up! (Guidelines, etc. for newly diagnosed)

Hi David,
Thank you so much for your genuine response.

When I found out I had CML I went online to research qualified CML doctors.

A good friend of mine from another state came across Dr. Druker at OHSU in portland, or.

I am being seen by doctor Heinrich who is on Druker's team.
Heinrich is very factual and down to earth.

Nancy

Re:blood tests

Almost bleary-eyed from read-rereading blood tests.
Even to the point graphing them so that they can make more sense.
So when I can come up with a logical question to ask on the forum I will.lol

I've learned in life that we're our best advocates

If your doctor is good enough for Brian Druker, he’s good enough for any CML patient. It sounds like you are in good hands.

In my experience as a patient the best thing you can do is learn about testing and what it means, because it facilities real conversations with your doctor that affect how you are treated and ultimately your medical outcomes.

Our page on “normal” blood counts might help too:

https://cmlsupport.org.uk/section/normal-blood-counts

David.

Good to hear that👍 David.

Thank you SO very much for your feedback and resources.

May I ask how long you have had cml??

Hi again Nancy. I was diagnosed just over 7 years ago - time flies.

https://cmlsupport.org.uk/videos/what-if-what-now-living-cml

This is me (not the voice, that’s someone else) and life has changed a lot since then - all for the better.

David.

Hi Nancy,

Welcome to the CML Support forum.  I was also diagnosed seven years ago and Dr. Heinrich was my onc for a while.  Are they still up on the hill?  I seem to remember that they were going to move the clinic down to the river.

It took me quite a while to understand what all the different test results meant.  Hopefully you've started treatment and are seeing your white blood count coming down into the normal range.

I keep my CML history at the LLS website.  https://communityview.lls.org/users/kirk

You may have to register with the site to see the profiles.

Hope things are going well with you.

Kirk

Hey Kirk,

Heinrich is down by the river now. There are 2 buildings. Bldg 1 and bldg 2. it almost reminds me of a Dr. Seuss story. Lol

I've been on Imatinib for 2 weeks and so far have been doing well. My wbc has been coming down but my platelets have been going up some.

I'll check out the profiles on the LLS website. You said you keep your CML history on their site. Why is that?

The other day, I registered on their site and actually had a lovely and informative conversation with someone at LLS.

Thanks for reaching out to me..

Nancy

Great hearing your story, David!!

And thanks so much for sharing the other resources. Extremely helpful to my husband (Mark) and I.

I'm so glad things are going well for you now.

Nancy

Hi Nancy,

I keep a record of my CML journey on my LLS profile page so I can quickly look up my history.  My memory isn't what it used to be. blush

Also, it allows my fellow forum members to see my journey.  Kind of like a personal CML FAQ.

Has your platelet count gone above the normal range?  I went back and looked at my early counts and they went down steadily for the first month of treatment to a low of 97. Then it rebounded to my new normal of around 200.

I think it's pretty normal for the blood counts to be a little off as your haematopoetic system recovers and adjusts to your TKI treatment.

Kirk

Kirk,

Ahh yes the memory issue. I have that as well. Posting is a great idea.

My platelets are 1302

Nancy