Update for March 5, 2017

I’ve tried to figure out how to recap everything that has happened since my last update so I could catch you all up, but these last few months have been such a circus it would take me days to write about it and it would take you days to read about it.

So here’s where we are going to pick up . . .

I GET KEYTRUDA THIS WEEK!

My last update was posted right before my visit with the doctor in Dallas regarding a clinical trial for a very promising immunotherapy drug called Keytruda.

Keytruda is not chemotherapy. It is a form of immunotherapy. It assists my immune system so my body is able to fight this disease without the harmful effects of chemotherapy.

Keytruda has been FDA approved to treat nine different types of cancer in the last seven months. It is a very promising line of treatment for many different types of cancer and has potential to make great strides in the treatment of Triple Negative Inflammatory breast cancer.

Actually, TNIBC is one of the cancers that is currently being tested with Keytruda through several ongoing clinical trials.

Since TNIBC is still in the testing phase with Keytruda and Keytruda has not been approved by the FDA for this disease, insurance will not cover it.

Keytruda is administered once every three weeks for two years and has a price tag that is cost-prohibitive. The only way I can have access to this drug is via clinical trial or a type of off-label program through Merck, the drug company who manufactures Keytruda.

And as we found out in Dallas, it gets even more complicated. This particular clinical trial is randomized.

A randomized study is when the participants are selected at random (by chance alone) to receive a certain clinical intervention. In my case, after waiting 4-6 weeks for pathology to determine whether or not I qualify, I would then be randomly selected to receive either Keytruda or a standard of care (FDA approved) chemotherapy drug.

I do not want chemotherapy.

For this reason, after going over my medical history and taking new scans/labs, the doctor in Dallas told me that she felt very hopeful that Keytruda would be a game changer for me, but she didn’t think I should go through the clinical trial to get it because approval may drag out into several months (especially if I was randomly assigned chemo). She suggested I forgo the clinical trial program and ask my local oncologist if he would try to get the drug off-label for me. 

Merck has a program that allows oncologists to treat their patients with Keytruda for free. It’s kind of like the clinical trial, except I can receive the drug here, rather than traveling to Dallas, and off-label use does not have the restrictions that a clinical trial does. If my doctor wants to combine it with another drug, or alter the dosage, he can do that with no interference from the drug company.

The oncologist in Dallas spoke to my local oncologist and gave him all of her recommendations including instructions on applying for the off-label program at Merck.

He wasn’t interested. He preferred a standard of care chemo.

So I have a new oncologist.

Issam Makhoul (UAMS) is very interested in Keytruda. Although I’ve only been his patient for less than two months, I received a call Friday afternoon that I’ve been waiting for since December.

I will receive my first dose of Keytruda this week!

The first two months of this year were filled with a lot of frustrating road blocks, unexplained pain, incompetent medical care, mountains of paper work, blinding uncertainty, and a never-before-experienced-peace-beyond-understanding.

Nothing happened like it was supposed to or like I thought it would. But you know what? God has been here. Even in the crazy we still very much felt His presence calming us.

Just because my situation didn’t play out exactly the way I conjured it up in my head does not mean God was not with me every second.

I’ve never felt alone. I’ve never felt hopeless.

There are several situations from the last two months that I don’t have time to share that show God’s protection and provision in ways we never even thought to pray for. God provided before we even knew what we needed.

Some of you may be in the middle of a messy situation. You have been plowing through some challenging and unfortunate circumstances and you’re wondering where God disappeared to while you’re in the middle of life, working so very hard.

I can tell you where He is. He is there. He’s plowing with you.

Your current reality may be clashing with your preconceived idea of what life should look like by now, but don’t wrongly assume that God isn’t in the trenches with you just because life is hard. I know this from experience; God is not afraid of hard.

I didn’t say we’ve had an easy two months. I said we’ve had a peaceful two months.

God doesn’t reserve His presence for perfection. He wants to be with you however He can; even in your mess.

Specific prayer requests:

• Still working on getting my energy up
• Port placement surgery this week (to administer Keytruda every 3 weeks)
• Keytruda will work quickly WITH NO CRAZY SIDE EFFECTS

Please know I say this with all of my heart, thank you for your prayers.

I am SO grateful to have friends who know God and talk to Him daily on my behalf. He is hearing and answering those prayers. Even in the crazy, there has been a thick and comforting peace over this home and in our hearts.

Love you all,

Tina