Tribune Ask and Tell: Your BIGGEST Wish

Q4 Reader Poll Results: Your BIGGEST Wish

During October through December 2019, the CLL Society conducted a poll among readers of The CLL Society Tribune asking about their BIGGEST Wish as we looked toward 2020 and beyond. We posed two open-ended questions, first asking “My BIGGEST WISH for what the CLL Society should be doing or working towards in 2020”; and second, “If I could have more wishes for what the CLL Society should be doing, they would be…”

 

We received a wide range of responses. Please see the visual word cloud below as well as highlights of what our readerships’ biggest wishes entail.

 

Question #1: My BIGGEST WISH for what the CLL Society should be doing or working towards in 2020:

Research and Cure:

• My BIGGEST WISH for CLL is to find the cure!
• Research
• CLL Society supports true translational research that cures CLL and Richter’s soon.

Treatment:

• I hate seeing my spouse having to use toxic chemicals to treat CLL. Report more on gene therapy.
• More follow up on CAR-T trials. What ever happened to Dr. Koffman’s trial after he was so successful?

Emotional and Financial:

• Helping interested parties understand patient challenges, especially emotional/spiritual ones.
• Information on Medicare and part D drug plans for CLL patients entering Medicare.

Nutrition:

• Understanding what supplements are appropriate such as, minerals, vitamins, antioxidants, O mega3s, etc.

Question #2: If I could have more wishes as to what the CLL Society should be doing, they would be:

Communication and Reach:

• Spread the word: No more chemo treatments for CLL patients!
• Teaching doctors not to dismiss us for having the “good” cancer.
• Stop using the term” remission”!
• Education written in easy-to-understand terms.
• Keep up the ongoing communication.
• Assist local sections (Support Groups) to bring expert speakers and have CLL Society personnel visit local (Support Groups).

Caregivers:

• Better recognition and support of caregivers.

Website:

• A better-organized website.

Nutrition:

• Nutritional support is important. It would be great if we could get it from our foods, but we cannot.

The CLL Society thanks everyone who contributed and provided their biggest wish. Many of these asks are programs and resources that we are currently working to provide or improve our reach and others have been recorded on our wish list as well.