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*.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.