08 April 2014

CML survival kit

I'm glad there was no such thing as Facebook when I was in college.
Could you imagine a digital, permanent, documentation of just one of those events? It wasn't pretty. 
Oh, sure, there are a few photos hanging around in albums. But not very many. Developing film was expensive, you know.
Definitely one of the "perks" of going to high school and college in the 80s was the lack of the Internet and instant information.
But, today, the Internet and it's endless instant resources is the cornerstone of my CML (chronic myelogenous leukemia) survival kit - or my cancer hacks.

There are many "closed" and "secret" support groups on Facebook. Being "closed" or "secret" means only people who are also members of the group can see what is posted on the group page. I can post to any of these groups and get an answer to a question or words of encouragement within minutes. One of the biggest topics in these groups is which medication everyone is on, what side effects they are having and how are they dealing with the side effects.
It's an instant support group, 24-hours a day.
A few of the groups I belong to:
CML survivors
friends by choice ... CML sisters by blood (women only)
brothers and sisters by CML blood
living with CML
CML survivors and caregivers
To locate these, or any other Facebook group, type a search term in the Facebook search bar. Try typing CML. When you see one you like ... maybe there is a group near where you live ... you'll need to click the Join Group button. You should get a response to your request within a day.

Are you part of a Facebook group? Which ones?

Game Day
As I was doing research on Tasigna, the Super Dangerous but Absolutely Necessary chemotherapy pills I take, I found out the company that makes my pills, Novartis, has some programs in place to help the CML patient and family. One is getting ready to launch this weekend - Ph+ CML Game Day: An educational program for patients living with Philadelphia chromosome-positive CML and their caregivers.
If you have CML, you and your caregiver should both plan to attend one. The Caregiver and I are hoping to go to the one in Charlotte, N.C., on Saturday, June 7, 2014.
These are one-day events held around the country with sessions focusing on coping and managing your life living with CML. Physicians and health care professionals are scheduled to be there as well as the Novartis/CML celeb and patient Kareem Abdul-Jabbar.
By going, you'll also have an opportunity to meet other CML survivors. It's a game changer.
To register, see the upcoming schedule and who is scheduled to speak go to www.CMLPatientSummit.com.
The first one is this Saturday, April 12, 2014, in New York.
Oh, and the events are FREE.

Are you planning to go? Which one?

The Leukemia & Lymphoma Society
LLS, The Leukemia & Lymphoma Society, has a great website, www.lls.org, where you can find all sorts of disease-specific programs. They do an especially good job at caring for the caregiver.
Start by clicking the LLS link and then click the tab for Disease Information and Support. There you can select things such as Leukemia, Managing Your Cancer or For Caregivers.
You can request free educational materials by clicking here.
There is also a good discussion board network here. And online chats here.
LLS also has a Co-Pay Assistance program to help with the cost of medication and doctor visits. Find out if you qualify by clicking here.

Novartis Oncology
Novartis, makers of my Super Dangerous but Absolutely Necessary chemotherapy pills, also have patient assistant programs. You can learn more about what they offer by clicking here.

Cancer Hacks
Say what you will about Lance Armstrong, but the Livestrong Foundation, www.livestrong.org, absolutely ROCKS.
One of my favorites is Cancer Hacks, which is powered by Livestrong. Find it at www.cancerhacks.org. Basically, it's hacks (or tips) from other cancer survivors on things such as:
Researching your treatment options
Low blood count: Safe food suggestions
Home changes
Dealing with emotions
You can explore various hacks or even submit your own.

Livestrong also has an app on iTunes I use called the Livestrong Cancer Guide and Tracker App. You can track your doctor appointments, test results, journal, etc. Learn more here. Free on iTunes but you'll need to create a Livestrong account.
Or, you can get a print version of the Livestrong Guidebook Planner and Journal for free by clicking here.

Do you have a cancer hack of your own?

Here's where I need a disclosure statement. These are just a handful of the plethora of resources available online for cancer survivors and their families. I didn't even list the American Cancer Society. You can find them online by clicking here.
I'm sure I left out one of your "favorite" resources. Don't get mad ... share it ...


  1. Patti, I want to thank you for posting this. I am less than a week from my Ph+ CML diagnosis and found your blog very helpful!

    1. Larry, I'm so sorry for your diagnosis. Sorry you are now a member of this CML club. But, we are fortunate to be able to survive on target therapy ... those Super Dangerous but Absolutely Necessary chemotherapy pills.
      Thank you for the kind words. Best to you.

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