Posted by: Mary Crocco | June 8, 2013

Sharing time with fellow CML’ers

CML Conference 001

Living Well With CML
An Educational Program for Patients and Caregivers
Hosted by the National CML Society in conjunction with Novartis Oncology

Living with CML, (Chronic Myeloid Leukemia) for ten years, today I was lucky enough to share a few hours with real people, good people, who live with CML.

What a difference it makes to look into the eyes of someone who shares a rare disease. Having communicated on social media with questions and concerns doesn’t compare with actually talking face to face.

It wasn’t a packed room because CML is a rare form of leukemia. I didn’t get to speak to everyone, but the couple and gentleman at my table were delightful. The wife was the caregiver and shared her feelings about caring for her husband, and her husband talked about his concerns. The gentleman who sat with us killed two birds with one stone – he conducted business the day before and when he found out there was a CML conference, and living with CML, he decided to attend.

Leading CML Specialists, a Social Worker, The National CML Society Advocates, and Kareem Abdul-Jabbar made up the panel of experts.

The information was familiar to me, as I’ve been living with CML for ten years; however, I did learn to ask if my blood tests were on the International Scale. I had never heard of this scale of comparison, and will be sure to ask my oncologist at my next visit.

Surprised that our special guest, Kareem Abdul-Jabbar, who suffers from CML, took time from his busy schedule to appear was a treat. He shared his story with us, and hearing it live certainly made an impact. Earning my full attention was when Kareem mentioned how he dealt with one of the side effects of his oral chemotherapy medication – cramps – especially hand cramps. I suffer from cramps every single day, so when he said he drank tonic water with quinine, I wrote it down immediately.

On the way home, I stopped at the first store I passed and picked up four 1 Liter bottles. I’m working on the first bottle and hoping for miracle results. Driving home cramped up my hands, so I had to wait a couple of hours for them to subside enough to write this blog. Thanks to Kareem, my new choice of beverage is tonic water with quinine. I’ll report the results in my next blog as I’m sure it isn’t an instant cure.

Besides the presentation being informative and well done, we were fed! A delicious breakfast was waiting for us, followed by a sandwich and salad buffet being served by The Renaissance Las Vegas. I enjoyed drinking hot tea during the entire presentation and a delicious lunch.

Networking took place, and it would be nice to hear from others – maybe some will drop by my blog and say hello, or drop me an e-mail.

Thank you to The NCMLS and to our special guest, Kareem Abdul-Jabbar, for a lovely and informative conference.

As always, thanks for reading!
Mary 

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Responses

  1. Really enjoyed reading your blog, Mary! Sounds like you had a great experience. Wish I could have been there with you. Take care.

    • I really did enjoy meeting others with CML. Hopefully we can meet at another CML event. Thanks for reading and leaving a comment on my blog!

  2. Mary, it was a pleasure to meet you in Las Vegas! I really enjoyed hosting this event and am so glad to read that you enjoyed it too.

    • Thank you for reading and leaving a comment, Shelly. It was a great event!

  3. Hi Mary,
    I have Dr. Druker’s facebook page on facebook and just learned about the book Philadelphia Chromosone. That link somehow led me to you. I am thrilled for you that Gleevac is working so well. It is bittersweet for me, though, knowing that if it had been available 31 years ago, my 19 year old son would be alive today. It is still hard dealing with his death but we do have two other sons and 7 grandchildren now. I never knew if he got CML from a serious leg injury. He required endless xrays at that time and many felt that is how the leukemia started. Now I read it is solely the result of genetics which is alarming because I wonder if anyone else in our family could have the gene. No one else in our family history as far as we know ever had leukemia or other cancers either.
    We have been donating directly to Dr. Drucker for many years and he has sent us a handwritten letter which we treasure. Good luck with your life. Enjoy it.
    Mary Verni

    • Hi Mary,
      I hope you have read my review of the Philadelphia Chromosome, or the book itself, as it will answer your questions about CML. You will learn it is not an inherited gene, so no need to worry.
      I am so sorry about the loss of your son, I understand your sadness, because I lost my oldest son 12 years ago. (Not due to CML)
      Dr. Druker is an amazing doctor. How nice you have a special letter from him.
      Thank you for reading my blog and leaving me a comment and I hope you will continue.
      Enjoy your growing family!
      Mary 🙂

      • Glad it is not an inherited gene. I just ordered the book so I can understand the abnormal chromosome better. Sorry to know you lost a son also. When is Dr. Drucker going to receive the Nobel prize in medicine. Ironically, our son was in his first year at Georgetown in the premed program with the hope of going into the field of cancer research.

  4. I’m glad you ordered the book! If you scroll this blog, you can read my review or go to my review blog – http://www.mrc-bookreviewer.blogspot.com
    I have read Dr. Druker recently received a monetary award for his continuing research. Well deserved!
    That is a sad irony about your son. 😦


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