September 27: Day 119

The news from Iowa City was not what we hoped, but based on some of the signs I describe in my prior post, not a complete surprise. The AFP tumor marker has increased (to around 29,000) and Mom's liver function numbers are headed precisely in the wrong direction, which made today a clear and easy choice: it's time to adjust the sails.

The good news is that while compromised, the liver is still functioning. The even better news is, there is another treatment option Dr. Karwal feels is worth a shot at trying. 

The next drug (Avastin) is a fairly common one for treatment of many different types of cancer, just not liver cancer, however it is not currently FDA "liver cancer" approved. This can create some hiccups in the procurement process as well as with insurance, as generally insurance companies do not like to cover experimental or non FDA approved drugs. 

Knowing this, the folks in IC started the ball rolling to get Mom approved for treatment with Avastin last month, as we were somewhat in the air with her symptoms and results. The insurance company promptly responded and declined coverage, based on the treatment "not being medically necessary." An appeal process is now in process on that end.

I mentioned in my last post that Mom made a cameo at Bliss last week as she was having some respiratory issues she felt needed checked prior to today's visit to IC. During that visit, the folks at Bliss also felt that Avastin would be a great next option/step, and they also started the ball rolling from their end too.

After pulling resources together in both places today, I have a healthy dose of faith that Bliss will be able to get us the drug/start treatment as early as late next week or early the following week. 
This is quite a bit faster than expediting via IC as they indicated it could take as long as 'a few weeks', and they are all for doing what works fastest. There will be no happy dances until she is tethered to an IV pole, but I feel a WHOLE lot better about it than I did when I marched into Bliss this afternoon.

I am somewhat oversimplifying, but there is a slight policy difference in Bliss and IC, in that Bliss is willing to administer the drug after the initial denials are received via insurance and a pre-qualification is passed direct with the drug company and IC was needing to wait until details were worked out/fully approved or disapproved by insurance to initiate the direct contact/proceed.

Drs. Karwal and Otteman will put their heads together to decide if it makes sense for Mom to continue on the Nexavar at the same time she receives the Avastin or if she'll discontinue the Nexavar altogether and just take the Avastin. The drugs are meant to do totally different things, so it'll be interesting to see what they decide. For those of you humored by my second grade explanations, the Nexavar is a molecule inhibitor that attacks the primary cancer itself. The problem with this is that because Mom's cancer is so advanced, the cancer mutates very rapidly and eventually the primary cancer mutates to a totally different form, hence the early success and then later disappointment. The Avastin attacks the blood supply TO the tumor, and essentially tries to starve it. 

On the issue of the swelling through her midsection and legs, Dr. Karwal explained that this is a fairly common side effect and he has prescribed a water pill as a starting point. The portal vein typically serves as a byway for blood from the digestive tract and spleen to the liver. Because the PV is compromised, the excess fluid that cannot get through fills the abdominal cavity. While there is the option of draining that fluid, Dr. Karwal felt the pill would be a better first step as the 'manual' drain method only tends to work for a couple days. Hopefully the water pill will work, and she'll pee it out instead. She also needs to be very, very diligent about salt consumption.

I will post more details as we know more. Enjoy the weekend: one breath, moment, step, day at a time. 

With Gratitude,