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 catalogue my advice in term of my personal three steps for mindful survival.
- BE AWARE
I tried to keep my counsel very practical and even a little fun, sharing my survival tips learned over my 10 years of struggles with an aggressive brand of CLL.
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.
- 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.
Lots more but it would be best if you can set aside 24 minutes and perhaps have a pad and paper handy.
Please, please, please if you have your own survival and advocacy tips, share them with us at the CLL Society Community using https://cllsociety.org/contact-us/
We welcome your feedback.
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We are all in this together.
Brian Koffman, MD
Volunteer Medical Director of the CLL Society