Melanoma Neverland....

Apart from multiple extremely smelly people on the planes, the trip to and from Tampa was no problem. It wasn't 'sunny' Florida, being rather cloudy and dreary, but it was much warmer than the weather here. Moffitt Cancer Center is a huge facility, a fact that is both reassuring and disconcerting all at once. Was processed efficiently. Free valet parking. (Way too many folks with cancer....don't you think?) Dr. Weber was very timely, very frank, and much like his video personality. Completed a full physical...YUCK!!...not that I would do any differently were I in his position! Dr. Weber was fully aware of all my history. (Brent had overnighted all my records, scans, etc. a couple of days prior per Weber's request, but I didn't know if they would really be reviewed before my arrival or not.) He had some questions about the tonsil issue. What had it felt like? How had I found it? Took a complete history. Then, he told us that I looked like I would be a great candidate for his trial once I repeated the scans and got the remaining lab that was needed. Brent and I began to look confused since I had had the needed lab drawn the week prior on Thurs and the MRI and CT scans done on the Friday prior. We told him that was the case and also informed him of the met that was reported on the MRI. He immediately got someone working on finding the results of the lab work and an hour later it turns out that I have the antigen as well as the subtype needed for the study. He sent someone over to his office to look for the missing CD when Brent insisted that the CD had been included in the packet he sent and it was determined that the last CD just didn't get loaded on the computer for review.

During the wait for all of this, Weber sits down and just starts going over my options....all of them. Other drugs.....none. They are either not available or ineffective. Talks about Timadar and whole brain radiation. Dismisses it as not effective. Ipi....good but not yet available. Other studies....I don't qualify....either they don't want anything present in the brain at all OR they want measurable disease and 3mm is not large enough to consider "measurable". I would have to wait for it to grow and then still may not qualify since researchers don't typically want folks with brain mets in their studies at all. I could do stereotactic radiation as I did before and then enter his study 6 months or so later. That is so because (and this was the case with my scans) when follow up scans are done, it takes 6-9 months for the area to quit lighting up. Until it does, they can't say for sure that all the tumor is gone and he wouldn't be able to let me in until then. During that time, he doesn't like the fact that I would go untreated. Because in order to get into the study, I not only have to get rid of that lesion, I can't grow another. He tells us that I am in Melanoma Neverland. Meaning, that until I get less, or more, disease.....I can't get any drugs that might prevent the development of additional disease. He says that if it were him, and at first I don't know if he means himself as the patient or himself advising me....though it becomes clear that he means if he were in my position....he would have the lesion surgically removed. That way, it is gone. Within 4 weeks I could be in the study, getting drugs that might prevent further tumor growth. At about that time, someone advises him that the CD has been found and loaded. He says we can go if we need to catch our flight and he'll give us a call...but Brent tells him that we are here to get all the information possible and that our flight is not until Sat. He tells us to sit tight and that he is going to call a neuro friend of his to look at the scans as well as radiologists to take a look. Off he goes....

Weber pops back in to tell us that he doesn't really know that it is a met at all. He is going to get the other folks to give their opinion.

On his return, he says that the other radiologist/neuro people couldn't definitively say that the lesion in question was a met. He tells us that to his mind, I have "minimal residual disease" and therefore qualify for his study should I wish to participate in it. I figure the conversation went something like this: Weber = Do you think this lesion is a met? Neuro/radiologist = Well, given her history, probably. Weber = Yes, but, on its own. Can you tell me that this is definitely a met? Neuro/radiologist = Well, not definitely.

Bottom line = I think it is a met. I also think that Weber is trying to cut me a break. I can take care of this lesion...it's hell....but I can do it. The problem is, the rest of me, continues on....untreated. Not that Weber's drug combo is perfect. So far, it helps only about 1/3 of the patients who have had it. The side effects are less severe than those with ipi....at least in the small population who have taken it. And Weber believes, that like ipi, it has effects on brain mets. However, he is very straight forward....again disconcerting....but for me....it is what I prefer. He is very frank in that I am taking a risk with his study. He thinks the drug will help me....but it is a study. He can't be sure. That is why he is doing the study. He thinks that I will be better off with treatment for my lesion, the rest of my brain, and the rest of me in general. But he can't be sure. I asked, given the question mark in my brain, would he scan me sooner than the scans incorporated in the study at the 3 month point. He is very clear that he would not. If they were to scan me in say, 6 weeks, and the lesion in my brain is larger, then I am off the study....with no better options than I have today, and no chance of medication. Yet, it is a risk because in 3 months, my lesion could grow....but as I see it....I would be just where I am now....though out time, energy, money, with some side effects, and with a bigger lesion. But....still...with a lesion in my brain that I could have irradiated or surgically removed.

Also, somewhere in all this...we find out that if this treatment fails (and I grow additional lesions) I could still receive ipi. However, if I were to take ipi first, I would not get to take PD-1 and the vaccine (even if, in the years to come, they are found to be a remarkable cure!). The FDA has, in its wisdom, decided that the cumulative effects would be too great. However, that makes no sense to me (and especially to Weber) because to agree with that you would have to redo all mathematical laws, not to mention common sense, that additive effects can occur in BOTH directions! Bottom line, I can do ipi later if needed, but if I do ipi now, I will never have PD-1 as an option.

So what to do? I agreed. Partly because I can withdraw at any time. Partly because it was 5pm and I needed a CXR, lab, and an EKG to be completed before acceptance and if I waited to think on it over the weekend...I would still have to get that done and read, etc, etc. And....I am in a real time crunch. I have to start treatment within 28 days of my last scan (and at this point I am already down to 21 days) if I am going to do this and Christmas and New Year's (i.e. office is closed on 2 Fridays) fall within that time frame. And, NOBODY wants another scan of my head done, if I am going to participate in this study!!!!! After that I was whisked away, and a chest x-ray, EKG, and labs were done all within 20-30 minutes. The nurse in charge of the study is to call me Monday with my start date.

Because on your first and last session, you have to have leukophoresis completed (a process where 2 IV's are started and blood is withdrawn from one, sent to a machine to withdraw white blood cells then returned to you in the other IV) so that they can tell if the meds jump started your white cells like they hope, it requires scheduling that as well as your treatment. Therefore, what with the holiday issues, it is not clear what day they could get my treatments started. However, after I get situated and the holidays are past, I will be able to have my treatments on Fridays, so I am glad about that.

In any other world, this sucks. However, in melanoma world, when it is compared to being dead, someone digging around in your brain, or have things drilled into your skull...this looks pretty do-able! As Brent put it, we are in Melanoma Neverland, but this may be a door out.