Oncology visit limbo.....

Well...the news...is sort of no news and sort of still in limbo.

In the most straight forward version...the standard recommendations for me at this time remain the same....do nothing except observe closely...OR...do interferon, one month of high dose (which my oncologist said is almost always cut short because no one can withstand the side effects) followed by eleven months of low dose. The odds for success remain the same except for the fact that over the years in which I've been dealing with this they have found that the people who do respond the best to interferon have my tumor typing....for whatever that's worth. They are not certain if it is really due to the drug's effects or just that the folks with my type just do better than others anyway. I did ask about the pegalated (sp?) version of interferon, which supposedly has fewer side effects and my MD reported that in her experience it was no better tolerated.

After that, the other most clear portion of the visit was the fact that since she can palpate no cervical nodes in my neck, she doesn't feel that a resection of additional nodes is needed at this time. She thinks that if they had melanoma in them they would not only be enlarged currently, but growing.

Now for the more complicated stuff, I have to back up a step. Melanoma tumors are bad news in and of themselves. But what makes melanoma (and renal cell carcinoma, it just so happens) so difficult to treat is that prior to tumor development, it actually changes the host's immune response in order to make a nice living area for itself. They have done studies on sentinel nodes (the nodes nearest the tumor to which primary lymph flow is going) that are negative for any melanoma cells, yet, they are filled with suppressor immune cells that block the activation of other immune cells and allow the melanoma to grow unchecked by the host's own natural defense. Therefore, killing off the melanoma cells alone with typical radiation and chemo doesn't do very much good. Immune therapy has always been thought to be the way to the cure. That is why interferon is used. It doesn't kill the tumors. But it is supposed to kick start the immune system. Ipilimumab is one step better because it does kill the suppressed immune cells while jump starting the immune response. In this same direction, vaccine therapy has long been something that researchers felt could be successful as a treatment as well. However, though many have been tried in various trials, none have demonstrated beneficial results.

Back to today: At about the same point Brent and the onc started talking about wanting to find a vaccine trial for me and go off on that tangent. I say, whoa people....you've never been that excited about vaccines for me before. An obvious reason for this, is that there haven't been any that were very promising in the past and there are several that are showing some good results in trials at this time. But, the more interesting thing is that BOTH my docs came to the same conclusion about me, without discussing it with each other until today. That is: they both see the possibility that I am providing a pretty good immune response against melanoma on my own. (I know! This is a little strange to hear, having just had my third surgical procedure in less than 6 months!!!) First, they think it is possible that the swelling and redness in my throat was my own reaction against the tumor that was growing on my tonsil. Of course this can't be proven, it could have been a coincidental virus, infection, reaction the the injected meds with the scans...but they are more inclined to believe it was an immune response. Secondly, there are now three different radiologists who have described the place in the back of my head as a treated met. (We know they don't read each other's notes, else wise they would know it isn't!! The big dummies!!!) But, Brent and my oncologist's point is that it may in fact be a met, that my own immune response took care of. And lastly, my oncologist said that since I have been in her care, she has gained other patients who...and here her face got a funny look and she took a different tact...saying....other patients whose disease had taken a different type of progression. I think that was all code for patients who were diagnosed less long than myself who have already died and/or are doing very poorly. So....all this equals that they both feel I am a really good candidate for vaccine therapy.

Problem: Vaccines are only available in trials. This means...some folks get the vaccine....some folks get water (preferable, I have to say to some of the crap they can give you). Trials have admission rules. Some only want people with measurable disease. Not me. I don't have any. Some want only those with a history of a lesion and a positive node. Not me. I had mets. SO.....

The oncologist had already put in calls to the oncologist at Vandy (He's in Australia at the moment.) and another at the Sarah Cannon Cancer Center in Nashville. Both are to get back with her by Mon or Tues and Brent will reach her on Wed. She wants to ask them about my options generally and about vaccine trials for which I might fit specifically. Brent already knows about one that is open in Tampa, another in San Fran, and another at Vandy.

Brent also laid out his big picture plan about taking Temodar now, so that should it fail I would qualify for Ipilimumab once it is out (It is to be available 12/25/10 with the caveat that it is only available to those who have failed a prior course of therapy.) She said that wasn't a bad idea and that we could do that, although she clearly didn't think that Temodar did much good. She didn't feel it was that toxic either...though I find that no matter how well intentioned, the side effects are never as bad for those telling you about them as they are for the person experiencing them. At any rate, the end of that was that she didn't want to do that just now, but wanted to see what she could find out about things from other folks and go from there.

If your eyes have not glazed over yet, thanks for listening. Will keep you posted on what we learn next week. Brent is off with me tomorrow and we plan to just play and laze about! Love to each of you - c