Tuesday, October 23, 2007

A new plan

Howdy all. Thanks for all the supportive comments on my last blog entry. I greatly appreciate them! Quite a bit has happened since my last entry. Mostly for the good I think! After hearing the disappointing news from my doctor at UofM, we had to wait for a few days to hear if they had found any trials that I could participate in. Jess and I headed down to Ohio to be with my parents and sister and brother-in-law. We had a nice time with them despite the circumstances.

On Friday I received a call from UofM saying they had talked with a doctor at the Karmanos Cancer Center in Detroit about getting me into a trial and that Karmanos should be calling me soon to set up an appointment. Karmanos called a couple of hours later and we were able to set up an appointment for the following Thursday (last week). We were really excited about this, yet still a bit apprehensive because we didn't have many details about the trial. One positive thing was that the Karmanos doctor had told my UofM doctor that this particular drug had great results in several melanoma patients they had treated.

We spend quite a bit of time at the Karmanos Center in Detroit last Thursday. We met with a doctor for quite awhile. They examined me. They took my blood. And I signed a bunch of paperwork. The doctor gave us more information on Phase I trials in general. They have about 50 of these trials going on at Karmanos. One of the main points of the trials is dose determination, also documenting side effects, and effects of food. Apparently most of these drugs are more targeted than the typical cancer treatment drugs. They are supposed to target specific tumor types and generally have less side effects than the broad spectrum chemotherapy used is most cancer treatments. Sounds good to me!

The doctor also went through some pros and cons of these Phase I trials. The pros definitely seemed to outweigh the cons (although this was a Phase I doctor speaking). In any case, these trials allow you to try the newest and most innovative drugs - drugs that probably will not be on the market for another 10 years. Also, they generally have fewer side effects. In terms of melanoma, the current standard of care does not provide a lot of success against the cancer - as I have found out.

So they had one spot left in a trial that they reserved for me as soon as they had talked to my UofM doctor. People with a variety of cancers have participated in this trial. It is a drug called pazopanib. It works by stopping the blood supply to tumors - by keeping blood vessels from forming around tumors (I think). Apparently they have had several melanoma patients in this study and all of them have shown "beautiful responses" to the drugs (doctor's words). So this is very hopeful. They of course cannot guarantee anything, but they really wanted me to be in the study because of the potential it has for me.

It usually takes several weeks to get through all of the paperwork for these studies, but they fast-tracked me and I started the study yesterday (Monday)! We were at Karmanos from 7:00 a.m. to 7:30 p.m. yesterday - a very long day. And I think I've had most of my blood taken out of my body the past few days for lab samples. :) But things are going well so far and it feels really great to be doing something rather than sitting around waiting. I will only receive one dose this week and another dose in two weeks. After that I will be given pills to take daily. I have to go into Karmanos a few times this week for blood draws. The schedule is really complicated - all part of the study I guess.

So that is where things stand at the moment. I've been doing pretty well physically. I've been running a fever occasionally - they tell me it is probably tumor fever. Also I've been having some pain in my jaw the last few days from the lump on my neck. That had happened once before and then went away. Hopefully it will go away again. Otherwise, we're just really excited to be participating in this study and hoping for the best as usual.

I guess my closing paragraph is probably getting repetitive, but thanks again for all of your thoughts and prayers. We need them and greatly appreciate them.

Be well,
Brian

Wednesday, October 10, 2007

Disappointing news

Hello there. Once again it's been awhile since I last posted here. Overall I've had a good few weeks since my last post. We were able to head up to the U.P. for almost a couple of weeks. My parents were able to come up for almost a week and help us do some home improvements. Dad especially helped by doing some drywalling for me. I had a room and stairway that I had torn down to the studs and insulated last winter. Then of course I found out about the cancer and have hardly been there since. So it was great to be able to get that nearly finished. We also had fun spending time with my folks and enjoying the fall weather.

We came back down south last Thursday on a lovely fall day. On Friday I had an appointment with the endocrinologist in the morning. She was pretty happy with my bloodwork and how I had been feeling so I was able to get off the rest of the medication I had been taking for my thyroid. Then I had an MRI of my brain and a set of CT scans on the rest of my body. These scans were to determine if the treatments I've been receiving are working or not. So we were both pretty stressed about this. It was hard waiting over the weekend until our appointment with the oncologist on Tuesday morning. Overall though we'd been feeling pretty positive about things and really hoping for some news of shrinking of the tumors.

Unfortunately, we didn't hear what we were hoping for on Tuesday morning. The MRI of my brain was fine so that was a positive thing. The CT scans showed that the tumors are not shrinking. The ones in my liver were still there and there were some new ones there as well. This means that the treatment hasn't been working so I won't be continuing with this chemotherapy. No doubt about it, this is a major blow. I had really been hopeful about this set of treatments and I've been feeling so good... it's just really disappointing.

The doctor told us that essentially I've now been through the standard treatments for metastatic melanoma. Clinical trials exist, but because I have a second malignancy (thyroid cancer), I am not eligible to participate in these. I guess it is against FDA rules or something. He proposed three options. There is a chance the the National Cancer Institute would take me into a trial they have going. He thinks there is a slim chance for this because of the thyroid cancer issue that I just mentioned. They are looking into this option for me. Another option is to find a Phase 1 trial - he also called it a first in human trial. These trials are for drugs that have shown promise in a laboratory setting. He said that these trials are to see what sort of side effects occur in humans as well as to study the efficacy of the drug in fighting the cancer. There are only five or six locations where these tests take place in the U.S. One of these is at the Karmanos Cancer Center in Detroit. They are also looking into this option for me. The other option is to do nothing. Not too thrilled about that option.

So this is all pretty sobering stuff. We wanted so badly to just go to the infusion center and continue the chemotherapy. We've been doing pretty well since we got the news yesterday. It's just made us very sad, but not necessarily more stressed out. At least we don't have to wait anymore to hear the news. We're not giving up hope at all. We're happy that my brain still looks good and that I'm feeling good. It would have been nice if the doctor could have just given us another course of treatment to try though. We'll probably be getting a call from the doctor tomorrow to let us know what they have found out about the National Cancer Institute and Karmanos. We're hoping I can get into some sort of program sometime soon.

So that's the story at the moment. Please continue to keep us in your thoughts and prayers. We'll need your support now and into the future. We're still hopeful and pray that you all can be as well. I know that I've got much more to do on this earth. I'm not close to giving up. Just a little bruised from the recent news, but I'll bounce back and we'll figure out the next steps!!

Take care all,
Brian