This week we have published helpful information from two patients on the CLL Society website.
The first is a thoughtful well-referenced editorial by Cynthia Havstad on the personal value of enrolling in a Phase 1 trial
Cynthia recently enrolled in a trial of a novel antibody directed against ROR1. This promising and very specific target is the culmination of decades of works by Dr. Kipps and his team at UCSD. For the background on why therapies directed against ROR1 are so exciting and details the trial, click here to watch my interview with Dr. Kipps. The link to the actual trial is found here.
To read Cynthia's helpful own story about her experience in considering a trial so early in a new drug's development and her actual experience please click here.
Without researchers such as Dr. Kipps and brave and smart patients such as Cynthia, we would not be making the amazing progress that we are in treating CLL.
The second patient we present this week is yours truly sharing my full 24 minute video from the CRC 2015 conference. My topic was pretty fundamental: Being our Own Advocate and Staying Alive with CLL (chronic lymphocytic leukemia).
It's a dense presentation.
First I briefly share my own 10-year history with CLL.
Self advocacy's risk (yes there are risks) and benefits are outlined.
Next I catalog my advice in term of my personal three steps for mindful survival.
- PREPARE
- ACT
- BE AWARE
Some of these are broad overarching principles of dealing with a catastrophic illness, and some are very focused suggestions on getting the most out of a doctor's visit or a phone call with our insurance.
They include:
- Put together your team (this is number one)
- Become or find an expert.
- Think laterally.
- You always have time to make a decision, but you don't have forever.
- Risk is impossible to eliminate.
- You have to make decisions with imperfect and contradictory advice.
The link to my video lecture is here.
Enjoy
Please, please, please if you have your own survival and advocacy tips, share them with us at the CLL Society Community using http://cllsociety.org/contact-us/
We welcome your feedback.
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Thanks
Stay strong
We are all in this together.
Brian KoffmanVolunteer Medical Director of the CLL SocietyIf you want a personal response, or just want to stay in touch, please email me at [email protected]. I have no other way of contacting. Thanks. Stay strong. After all, we are all in this together. And please visit our website: http://cllsociety.org for the latest news and information.
