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.
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
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.
ASH 2018 and More
Positive & negative results for CLL treatments following the latest round of reviews by the National Cancer Drugs Fund 
Concise summary of the treatment history of CLL from the 1950s to the present, by Dr Bruce Cheson, contributor to the iwCLL and much moreVenetoclax plus obinutuzumab - the first chemotherapy-free, fixed-duration first line CLL treatment approved by Health Canada
Homeopathy cure the CLL by decreasing WBC count? Anybody have the experience in homeopathy treatment?. Now my mothe treatedby one homoeopath
