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Chronic Neutrophilic Leukemia

Chronic Neutrophilic Leukemia

Posted by Angelgirl on May 24, 2019 11:55 pm

Hello:

A month ago I was diagnosed with CNL.  Currently being treated with Hydroxyurea, awaiting approval of Jakafi.
There’s also talk of a bone marrow transplant.
Anyone else have this diagnosis?

Thanks!
 

Re: Chronic Neutrophilic Leukemia

Posted by ACH2015 on May 25, 2019 6:23 am

Hi Angelgirl‍ 

I searched the community and did not find anyone else linked to CNL. I have a rare cancer myself (Cancer of Unknown Primary Origin) and I know how frustrating it can be trying to find someone in the same situation.

Below is a link from the Canadian Cancer Society that talks about CNL, I thought you may find interesting.

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=2ahUKEwiQ66iitrbiAhVPmlkKHaQPDC4QFjAAegQIARAB&url=https%3A%2F%2Fwww.cancer.ca%2Fen%2Fcancer-information%2Fcancer-type%2Fleukemia%2Fleukemia%2Fchronic-neutrophilic-leukemia%2F%3Fregion%3Don&usg=AOvVaw1F1ROZSOnanOtSQokYwA0d

Also, the link below is from the Leukemia and Lymphoma Society of Canada. Look through the various support groups or contact them directly to see if they have a peer match.

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=2ahUKEwim1N6Eu7biAhVEtlkKHQ--Cy8QFjAAegQIARAB&url=https%3A%2F%2Fwww.llscanada.org%2F&usg=AOvVaw2zElHBejdWOmS9A35opam3

The Canadian Cancer Society has a peer match as well: http://www.cancer.ca/en/support-and-services/support-services/talk-to-someone-who-has-been-there/?region=on Complete the steps and hopefully you can connect with someone in the same situation.

I hope this helps! Please keep in touch and let us know what you discover and how you are doing.

Keep well

ACH2015 - Andy.

Re: Chronic Neutrophilic Leukemia

Posted by Angelgirl on May 25, 2019 10:38 pm

Hi Andy!

Thanks so much for the information.  

I wish you all the best as well.  Yes, it is very frustrating having a rare cancer.  
I will keep you posted, as I will be switching to a new drug which apparently is quite
effective in treating CNL.

Take care,
EM  (Angelgirl). 

Re: Chronic Neutrophilic Leukemia

Posted by ACH2015 on May 27, 2019 7:23 am

Angelgirl‍ 

I wish you well in the upcoming treatment, and please do keep us updated.

Keep well

ACH2015 - Andy.