Saturday, February 25, 2017

Just Say No

"Just say no" was a slogan that was part of the "war on drugs" when I was a kid.

Right now, it is what we are saying to drugs that would traditionally be used to treat a Glioblastoma brain tumor. 

As I mentioned after the last MRI, KK is no longer taking Cyclophosphamide, the low dose of chemo she has been taking for the past year. The reality is it wasn't working as evidenced by tumor growth. So all it was doing was killing platelets and white and red blood cells, as well as adding toxicity to KK's body. 

I received a call from Dana Farber last week. They said that KK has the PD-L1 mutation and qualifies for the immunotherapy clinical trial. After KK experienced vision loss due to pressure in her head last week, I am convinced that I cannot put her through a clinical trial that is designed to create an immune response that causes swelling (which could cause "seizures or worse").

KK has also been weaned off the steroids that we used to control the swelling last weekend. 

The only thing she is taking is the new supplement. (She is not receiving IVC treatments either, since IVC causes swelling...we are waiting for The Rothfeld Center to get the intravenous version of the new supplement.)

Please continue to pray. Without "treatment", Glioblastomas are known to double in size in a matter of days. I believe that God is using the new supplement to heal KK. Instead of getting worse, KK is feeling better. The headaches are gone and KK has regained peripheral and color vision. She sees "flickering" that I assume is caused by the optic nerves trying to settle. Thankfully, it doesn't seem to bother her as she has resumed normal activities and only mentions it once in a while.


Terri said...

Continuing to pray and asking the Father to give you peace and wisdom!

Judy Bleau said...

Praying for you two precious women 💜

Heidi Peterson said...

Praying with all my heart.

Abbaschild said...

Dear Tanya and KK
Have been keeping you in my thoughts and prayers
I'm glad KK is feeling better
I pray you get a call soon that the center has the IV supplement
I pray for peace wisdom for all concerned and stamina for both you and KK
You are both amazing and strong
Barb Warren