What's Up, Doc?

Over the past week (first week since my most recent diagnosis), my efforts have centered on trying to understand my current situation/diagnosis better and learning more about potential future options. This is an ongoing process, but here is what I have deduced so far.

As you may remember, my primary medical oncologist, Dr. Minor, has recommended that I meet with him in a month (end of October) and have new scans performed in the 6-8 week time frame (mid to end of November) to see if my current treatment program, MDX010, has taken charge and pushed back the spread of mel from my neck and lungs (and possible growth in the brain).

Doctor Updates



First, I emailed Dr. Stephen O'Day at The Angeles Clinic. This is the doctor who I recently obtained a second opinion from with regard to my situation. He is another well known melanoma expert on the West Coast, based in the LA area. He knows Dr. Minor and supported his recommendation to try MDX010 back in June. With the current developments, he also agrees with Dr. Minor that the best course of action is to allow the MDX010 to do its 'thing'.

I spoke to Dr. Mandpe, my 'head and neck' surgeon, who has done all of my surgery, as well as Dr. Abendroth, my radiation oncologist. Dr. Abendroth thought it was too soon to tell with regard to the changes in the brain. Naybe the changes are signs of growth, or perhaps they were irritations associated with the recent radiation treatment.

Both Dr. Abendroth and Dr. Mandpe believed that there were likely 2 new mets in the left side of the neck and 1 new met behind the nasopharynx. The PET/CT scans seemed to show with more clarity that mets existed than was the case in the false positive that happened last year.

I have also been chasing down a few other doctors, both traditional and CAM (complimentary and alternative medicine), and hope to be able to solicit their feedback in the next couple of weeks.

General Learnings to Date



For each doctor I am talking with, I am trying to understand what he or she might recommend for a next step if it is determined that the MDX010 is not working and should be discontinued. Here is what I have learned so far.

First and foremost, I learned that no doctor will do anything unless the possible solution will cover all areas where the problem currently exists. Doctors don't want to do something to fix one area but not other areas, as this does not solve the problem and thus the mets will likely reappear in the same area at some future date. Solving only part of the problem puts the patient through additional strain that could be better done when applying a more complete solution. The body apparently can only take so much abuse, so it is important to choose wisely.

This makes sense, of course, but does pose a problem for me. Since I potentially have the mets in 3 to 4 separate locations (brain, neck, nose, and lungs), certain solutions such as surgery are no longer an option for me.

Second, no one likes brain mets. I'm not exactly sure why, but most of the trials that I have skimmed online have stated that those patients with brain mets will not be allowed into their studies. I am guessing that the whole 'blood brain barrier' thing limits what many potential solutions can do, so it is easier to eliminate patients with these symptoms from their trials.

Third, clinical trials, by their very nature, do not guarantee that the patient obtains the treatment in question. One has a 50% chance of getting the treatment that they are testing and 50% chance of getting the placebo. Great for science, not so great for the patient still hoping for a cure. Cures do come from this process, of course, but you have to be willing to take the risk of getting the placebo.

What Could Be Next



Dr. Minor thought that we might try CCNU, which is also known as lomustine. You can read a little about it here. It appears to be a chemo drug that has been used to fight brain tumors with some success. This makes sense in that Dr. Minor appears most concerned with the possible activity in the brain. It also works/can work in other parts of the body.

Dr. O'Day down in LA did not have any recommendations at the moment, as he said that most of his trials were currently closing. But he recommended that I consider making another visit to him in 2 months time (post next set of scans) to see what options were available then, as he should have new trials starting.

Dr. Abendroth and Dr. Mandpe think that radiation on the neck, in the opposite side from where I originally had my neck radiation done last August and September, might work. The radiation could obviously get to the neck areas in question and could also get to the nasopharynx as well. And radiation could be used again in the brain if needed. The only area that is not a great candidate for radiation is the lungs, which apparently do not handle radiation well. Stereotactic radiation in the lungs is a possibility, but 6 spots is on the high end of how many they might treat in this manner.

Conclusions

On the traditional front, if MDX010 does not work, one possible solution could be some sort of regiment of chemotherapy (CCNU) and radiation (neck, brain, maybe lungs).

On the alternative front, there are lots of options, but each option seems to have lots of question marks. I am seeking out advice from a few CAM doctors, which should help me figure out what realistic options are available.

One alternative method that I am proceeding on this week is a meeting with Dr. Morter. Actually it is a five day session, working directly and solely with the doctor directly. One of the investors that I have worked for used this method years ago and stayed close to the doctor over the years as his practice grew. He was able to set me up with the doctor directly, and so I fly out to Arkansas for the sessions this Thursday. Since this treatment program is primarily mental and does not include any drugs that could possible conflict with my current treatment, there was nothing preventing me from trying this out.

Wish me luck!