Friday, August 7, 2009

I'm sorry but your Melanoma is a little too Melanoma-eee for us.

After a long day of just sitting around and twittering about nothing at all, the doctor gave me about 15 minutes of his time where he delivered his initial opinion that I am not the superstar they are looking for. As Dr Kirkwood at UPMC mentioned, he is skeptical of the NIH trials because they seem to be hand selecting only those cases where they think they can show significant results. Maybe that's a way of skewing the results in their favor, or maybe its because they know how grueling the treatment really is and they don't want to put people through the treatment if they feel there will be little to no benefit.

I have "hundreds" of tumors on my liver. I have "thousands" of tumors on my liver than cannot be seen. I would be a much better candidate if I were to have one large tumor because the pattern would indicate that the rest of the liver is "healthy". They are still waiting for blood tests to come back. They are looking at liver function. If I have reduced or impaired liver function, I am not a candidate for their protocol.

Dr James Yang was the resident that I met with. He told me that I looked to be in great physical condition. I had vitality and strength. But then questioned, how would I feel in two months? Their protocol requires a two month wait while they culture the cells for injection. During that time my health could drastically change and no longer be healthy enough for their trial. He is nervous about starting someone down a road that they are unable to finish.

He said that one option would be to go do chemotherapy and reduce my tumor burden. Even if only temporarily, it might be long enough to undergo his treatment.

Theirs is a three week protocol. The first week the patient will receive high dose chemotherapy to suppress the immune system. This is a rough week where you get really run down and are pretty much sick the entire time. Then comes the cell therapy and more high dose IL2. And we all know what IL2 can do on the body even when starting from a healthy starting point. Once you can no longer tolerate the treatment you are finished. They fully expect blood counts to drop to 0 during this treatment. Your blood pressure would drop like crazy. Basically I'd be laying there dead.

The third week comes along and I'm just sitting there. They hope that patients recover during this time. Since your blood counts are so low, infections are other possibly deadly complications could occur.

I can't wait!

Dr Yang told me that its a lot about using a crystal ball to figure out eligibility. He said lucky for you, we won't just be using only [his] crystal ball because he was borderline on wether or not he thought I would make it through. Then said, he is more leaning towards not.

He asked about any weight loss and I told him that I had dropped 20 pounds since Dec '08. I dropped to 165 at about the March timeframe and have since plateaued. I credit it mostly to not eating meat and generally eating more healthy all around. I'm at what I consider a healthy weight. He recommended that I get chubby again. You need calories. This is yet another doctor telling me to eat donuts. Just what I need. Thinking to myself, "Excuse me doctor, doesn't sugar feed the cancer? Or are you not allowed to believe that?"

One thing of benefit from my meeting with Dr Yang is that since the BMS buyout of Medarex, the experimental drug Ipilimumab is becoming more available and as a result, more clinical trials are opening up. I need to place a few phone calls today to figure out if there are options for me.

I'll also be calling Gerson today. I've spent a lot of time sitting and waiting for the conventional people to tell me that I am screwed. I need to jump in go get this thing fixed on my own. I could either sit here for the next two weeks, or I could go sit on the beaches of Mexico and drink juices and eat expertly prepared vegetarian foods all day. Oh yeah, there is also the occasional coffee break. :)

My closing thought is this. It is not that I necessarily WANT to do this NIH trial, but it would be nice to have it be MY DECISION to turn it down. Not for any other reason than it is another option. The last thing that I want to hear is that I have no options.

When conventional methods for curing cancer are all dried up, where do you turn? For me, I am going to the Gerson Institute.

1 comment:

dougsmoonbaby said...

I can certainly hear your frustration!

I use to check in with NIH every 6 months to see if they would change their mind, but Doug never fit into their criteria since he had two forms of cancer.

Other places have less stringent criteria for their studies, so check them all out. Georgetown's Lombardi Center and Sloan-Kettering are great options.

The "no" you are hearing can be discouraging, but don't lose sight that these places have their own adgendas which may or may not mesh with yours. Sucks, but it does not mean there isn't help - they just can't help due to their needs.

Continue to search. I fully believe you will get the help needed with a team who will respect your desire to incorporate the homeopathic approach you believe in with their treatment. This is your life you are fighting for and you do have a say in how best to approach treatment and to work with a team which believes you will beat this beast.

My thoughts are with you and your family at all times.

xo,
Ellen