Lisa Minkove has won the CLL HEROES Award sponsored by Cure Now.

[lankisterguy]

This is a cross post copied from CLLForum.com and I hope the original author JCreager does not object to my reposting hers here- Len

In Loving Memory > Lisa Minkove has passed away

From: JCreager Date: 2018-10-27 00:10:55

Reply: cllforum.com/reply.php?topi...

Lisa Minkove has won the CLL HEROES Award sponsored by Cure Now.

curetoday.com/cllheroes

curetoday.com/cllheroes?fbc...

[Justasheet1]

Len,

So well deserved. May she RIP. 😢

Jeff

[Cllcanada Top Poster CURE Hero]

Lisa was my longtime friend and collegue, she is deeply missed.

~chris

[db601]

Len - thank you for posting. For me, the links were faulty.

I googled Lisa and pulled up some of her interviews. We owe her a great debt of thanks for her courage and willingness to share her journey in such personal details.

The April 4,2018 interview with Andrew In Patient Power Network echoed my concerns.

*Lisa had to terminate a working drug (Venetoclax?) to generate T cells for harvesting for the CAR-T experimental therapy. *

Lisa was willing to take the early risk to help herself and other patients.

The trials are set up for the *science* to be advanced. Is the *patient* being compromised by Big Pharma and seen as collateral damage?

After turning down a double blind study, I was given ibrutinib (2014) on *compassionate use*. To date - I have done well with a reduced dosage. Or - I may be on the road to the drug becoming refractory.

Along the way, other medical procedures such as minor surgeries for skin lesions, were concerning. I had to think about possible infection and *ask and explain the need * for a course of antibiotics. The *bleeding issue* required me to stop the ibrutinib for 5 days before and 5 days after surgery. I doubled my daily Valtrex for 3 days before and after to *avoid any flairs*. Did I forget anything?

Most general physician/surgeons are not aware of the need to be concerned with issues we are dealing with on a daily basis. We need to be vigilant and accountable to our *knowledge*.

Patient - heal thyself.

Len and Lisa - thank you.

-Diana

[mgh348]

Lisa was an amazing person. She took so many of us under her wings to educate, comfort and encourage us on her website. She is a hero for sure.