What Have I Been Up To?

The Serious Stuff

I completed the 2 sessions of stereotactic radiation treatment, Hannibal mask and all, without much difficulty. Now I wait to see what new areas of hair fall out, furthering my ‘unique’ look.

I met with my doctor a few times over the past two weeks to determine next steps. Originally, I was to begin a 12 month ‘maintenance’ treatment program of Interleuken 2 (IL2), which has shown some effectiveness in keeping the tumors from forming or spreading in patients who have successfully completed biochemotherapy (no recurrences of melanoma). IL2 is one of the 5 drugs (2 biological and 3 chemotherapy drugs) that was part of my biochemotherapy. The treatment calls for me to be in the hospital for 3 days once every 4 weeks. The side effects are supposedly limited, and the recovery time should only be a few days after each visit.

However, since the tumors came back in the brain, even though small and easily dispatched, I technically did not successfully complete that therapy. While I could continue on with the IL2 treatment, my doctor suggests that we try something different. If IL2 did not work in combination with other drugs in the past, it may not work on its own now.

Instead, my doctor is conducting a stage 3 clinical trial of a drug known as MDX010, or its more official name, Ipilimumab. It attacks the problem differently than do the drugs in biochemotherapy, and has had some success in late stage melanoma patients, including those with brain metastases like me. Like all clinical trials, of course, there are no guarantees that my situation will respond favorably to the treatment, but it appears worth a shot.

While I am researching this option, I have also begun the process of obtaining a second opinion outside of Northern California. What has worked well with my current situation to date is that my doctor is one of the primary melanoma doctors in all of Northern California. In addition, he meets monthly with a ‘melanoma board’ that includes current and former melanoma oncologists and surgeons from his hospital, California Pacific Medical Center (CPMC) and other hospitals, including University of California at San Francisco (UCSF), a well known melanoma center with national recognition. My case has been presented twice to this board to help determine next steps. In addition, I meet quarterly with the head of UCSF’s melanoma center.

However, I have received suggestions from a few people that, regardless of the success or failure of biochemo, I should consider introducing my case to one or more melanoma cancer centers across the country. There are several nationally recognized centers in places such as Boston, Houston, and Southern California. Each has its own sets of clinical trials ongoing, and should I need to look into more experimental options, I may find something elsewhere that is not currently offered in Northern California.

So, on June 12, I fly down to Los Angeles to the John Wayne Cancer Institute to introduce my case and hear their doctors’ recommendations. Depending on how well I like this process, I may, at some point over the next few months, consider doing this with another major melanoma center, UCLA’s Jonsson Comprehensive Cancer Center.

In addition, I am likely to consult alternative medicine doctor. Before I started the biochemo, I met with a doctor at the Pine Street Foundation, a local organization with experience dealing with patients with cancers including melanoma. The doctor comes with some very positive references and my current doctor knows this doctor. I am not sure what alternative therapies can do for my situation, but I don’t think I am in the position to dismiss this kind of medicine without exploring it.

In any event, I feel lucky that, to date, no tumors have hit major organs or been large enough to cause trouble in the brain. While the odds of survival go down with each failed treatment, I continue to have a chance to try something new that could beat this pesky melanoma. That’s all I can ask for. Many people aren’t given that chance.

The Fun Stuff

Since I finished my biochemo in early May, and I am not currently on any major medications or treatments to fight melanoma, I feel great. This is the first time since last November that I feel almost normal. Of course, I have felt good over the past 18 months whenever I was not on something to fight melanoma. Feeling good, unfortunately, has no correlation to actually being healthy. I have read too many stories on various blogs, like www.mpip.org, where people were feeling great, went to the doctor for what they believed was some minor issue, and found out too late that they had untreatable melanoma and died soon thereafter. I’ll take my situation over that any day, as at least I have a chance to fight. But, in the meantime, I am definitely enjoying myself.

The first thing I did was join a gym. Over the past 9 months, I have done little other than eat, sleep, get sick, sleep, and occasionally play with Lucy. The result of all this inactivity is a very pale person with no upper body or stomach/back strength. And, whatever weight I have gained and lost and gained again over that time has gone right to the midsection. Let’s see now, pale, weak, big gut. I know what you are thinking, ‘That’s hot!’

Anyway, I joined a gym in late May and have been going about 4 times per week. Also, we have an elliptical machine at home which I use about 5-6 times per week.

Otherwise, when not researching cancer treatments or calling hospitals about incorrect bills, I am eating out for lunch, seeing movies, and doing more fun things with Lucy and Michelle on the weekends, like going to the zoo.

Oh, yes, and I am looking for work. Depending on which treatment I opt for, I will likely be able to work at least part time. Of course, it is not so easy to find a part time job with flexible hours for a guy who wears a hat everywhere. So, I have started to network with people I have worked with in the past as well as grad school friends to get the word out that I am looking for work. I think I should be physically able to start work either in July or August. Now I just need to find the right job or jobs.

That’s all for now. Thanks for the emails and calls. Always good to catch up with old friends.