May I Have the Envelope Please?

The results from my scans (brain MRI and full body PET/CT scans) are in...and the results are lousy! I did not win the emmy, grammy, or oscar. In fact, the only award I seem to be winning is 'most hospitable for mel'!

The brain MRI showed no new mets (metastases), which was the good news. Unfortunately, two of the previously identified mets had grown in size. This is not definitely a problem, as such growth could be the result of irritation related to previous radiation treatments. Interestingly, this finding is the least concrete of everything that was identified, yet is what the doc seems most worried about.

The PET/CT showed a few new 'surprises'. First, there appear to be one or two new mets on the left side of the neck. This is the side opposite where the original neck problems and surgeries occurred. However, we cannot feel anything in the neck, so we are not 100% sure.

For those of you who have been reading since the beginning, you may remember that I had what ended up being a false positive of mets on the left side of the neck about a year ago during my every three month scan. The scan showed something, but we were never able to verify it, despite significant effort to stick me repeatedly with a large needle. They said it was a biopsy, but it sure felt like some ancient torture technique. Anyway, a future scan showed nothing out of the ordinary, so the area was deemed clean. It was presumed that what showed up on the scan was related to irritation associated with the 30+ days of neck radiation in August and September of 2007. So, perhaps we could have another false positive, but much less likely this time around because I have not had any radiation in this area in about 12 months.

I may also have a met somewhere under my nose (something called the nasopharynx). I say 'may' because the doc did not mention this to me in our meeting. He is now on a 3+ week vacation so I can't ask him. But, when I asked for and received the updated documents from my files, I noticed this nasopharynx reference. I am trying to have the report where I found this reference translated from doc speak to English so that I can understand all the findings.

Last, but certainly not least, the scans found approximately 6 mets in the lungs, which is a bummer. And does not seem to be in question at all.



OUCH!

So, what is next? The doc has recommended that we do nothing for 6-8 weeks and take new scans. Seem strange? The rationale is that he wants to give the current treatment program, MDX010, a chance to run its course before moving on to the next big thing (if such a thing exists). This drug has shown, in some patients, to take effect in month 4 or 5. This is unusual in that most drugs show results immediately if they are going to show any at all for a particular patient. But not MDX010. It usually takes close to 3 months, and has taken longer in other cases. Starting something new now risks potentially preventing the MDX010 from doing its 'thing'. The doc stated that the chances are not good, but it is what he believes is the best course of action based on where we are today.

Well, waiting 6 to 8 weeks, twiddling my thumbs, hoping for good news is easier said than done. So, while I wait, I research. First, I am trying to get the report translated so I know exactly what I have where. Second, I am reaching out to other doctors that I have worked with to update them on my condition and determine if they agree with my primary doc's recommendation. Third, I am reviewing the various articles and suggestions that people have sent me over the past several months. Fourth, I am reading a 400+ page report from Ralph Moss (http://www.ralphmoss.com/) on melanoma, which provides a bunch of info on alternative methods for treating various cancers. Fifth, I will be looking into clinical trials to see what is out there.

Any advice or referrals are appreciated!