Just to Clarify some Questions which have Arisen...

This will be a bit of a "technical" post about her disease, in response to some queries. Don't read it if you are not in to scenarios and details and would rather focus on Meagan as a person and the life she enjoys today.

Meagan's disease is at this point incurable. And therefore likely terminal, in some undefined timeframe. For the moment it is controlled. That means we don't expect her imminent demise, in fact at this point it looks probable she will be here for the holidays, something that means a lot to her. But controlled in the context of melanoma means you really only focus on the short term - it speaks nothing to any long term prognosis. Because she has a quite active disease, and melanoma is known for being capricious, unpredictable in its behavior and can "jail break" (surge and grow rapidly), one just has to be cautious in looking too far ahead and assuming anything.

Thanks to radiation treatments, the current tumors seem to be responding (shrinking), and the ones in her brain for sure are shrinking as a result of the last treatment. We don't know yet if her spinal tumors are responding; there is a temptation to extrapolate and assume that if the brain tumors responded, then it's likely that the spinal tumors will as well. But we won't know that for sure until her spine is rescanned (in the next 45 days or so). It's not safe to assume that any particular treatment is working until you have hard data (a scan) confirming an impact and it's not safe to assume that the trajectory will remain the same over time.

Melanoma has somewhat of a reputation for radiation resistance. It can be effective initially, but then can mutate or survive and continue to grow after initially shrinking. Even if the tumor has shrunk, some melanoma cells can survive. It can also return to a treated area. In the case of the brain, her tumors are being "spot welded" as Dr. Vermeulen likes to say. This means that the focal point of the radiation beam is the tumor itself and as a result of the technology the radiation burden/dose on the rest of the gray matter is not large. Obviously the more tumors which emerge (and even beyond the newly discovered ones we fully expect others to occur down the road) the more difficult it becomes. You can still spot weld them with the Cyber knife or Gamma knife, but the burden/dose on the rest of the gray matter starts to increase. So you start killing off more gray matter, and that causes long term impacts. One thing that can happen is that instead of 1-2 brain tumors emerging, there can be a lot which pop up. The Gamma knife can handle up to about 6. Beyond that they would recommend whole brain radiation. Once you go to whole brain radiation, you get one shot at that. There is only so much radiation the brain can take, and once you've had the whole brain treatment, and you get another tumor, it's game over. So that is why it is crucial to find some systemic way to stop the melanoma from spreading - and given there is nothing like that currently out there, why melanoma is considered one of the most deadly cancers.

With regard to her spinal tumors, she has been treated in two areas of her spine. We hope the treatment is working in those areas. Because she has an active disease it is highly probable that the disease will spread into other parts of her spinal column through the epidural space. If it sticks and grows in those areas, which we will discover through a scan or through symptoms she experiences, they will be able to treat those areas with the Tomo therapy radiation. But like the whole brain radiation, you get one shot at each area. The spine can only tolerate so much radiation. So if the cancer reemerges in a previously treated area, they cannot treat it anymore.

So that's why radiation is considered local control and palliative treatment  - it is short term and not a cure. It buys you some time.

She does have numerous small tumors on her lungs. For now, those are causing no problems, and are not being treated, although they could be zapped. Aside from a couple skin tumors, the melanoma has not shown up in other vital organs.

Absent a new drug discovery  - and at this point I have not been able to find anything in the pipeline which would suit Meagan - the only hope for a systemic cure to stop the melanoma in its tracks is a form of chemotherapy. The Temodar did not work for her. It has worked for a very small percentage of people, and those people have remained free of disease for a period of time - they aren't considered cured, but their status is referred to as NED (No Evidence of Disease). Dr. Kaplan has indicated he wants to try to new chemotherapy called Abraxane. Whether it is used alone (single agent) or in combination with some other drug (such as Avastin), it still has a pretty low chance of success. Even if it has some initial success  - melanoma shows an ability to adapt and get past it. For some, and there are anecdotal stories out there, it has worked to stop the growth. It hasn't proved its efficacy in large, controlled studies, but at this point it hardly matters; if there is a chance and there is nothing else, why not try it, especially if the side effects are manageable.

The only drug out there which has a reliable track record of producing durable responses in a limited number of patients is Interleukin-2. Generally 6% of patients will have a complete response and another 12% will have a partial response. This is a particularly nasty drug with major side effects. Even if you wanted to try it, you have to be off steroids (which Meagan is not due to her brain tumors and regular brain radiation treatment which causes swelling). Because of her seizure risk, it becomes less viable as an alternative. So unfortunately, IL-2 alone or in combination with some of the new agents being developed in clinical trials is off the table for her. At least until she has no brain tumors emerge for a significant period of time and is able to go off steroids and anti-seizure meds.

That's the picture as I see it. Very slim chance of Abraxane controlling the disease. Continued radiation of emerging tumors to control them as long as we can. Then at some point, the disease moves from controlled to uncontrolled, and runs its course. So we buy time and enjoy every minute of that time we can.

Made it through the long MRI

Checked in at 4:45 last night, she was in the machine by 5:15 and didn't emerge until around 8:30pm. Longest MRI she has been through yet. No hitches. They aren't looking for anything new - that was all on the CT scan - this is a fine grain that should pinpoint exact location from 3-D perspective of each tumor and it's precise measurements.

They ought to have pretty detailed scans of her torso - they did four separate runs of quarter sections of her body. I'm supposed to get a call from the radiologist this morning to discuss the results and what her recommended radiation treatment plan is. It could happen pretty fast. Apparently it might not be the Cyberknife, it could be another machine downtown that has a broader beam.

The good news is the Meagan doesn't have to rush this morning. She has come to really value unstructured morning time without the pressure of having to get ready for anything.

The Back Story...

A double entendre...

This has been a particularly troubling last 5 days. Physically as well as emotionally. To recap, a week ago Monday, Meagan complained of some pain in her lower tailbone area. We got in to see Kaplan right away, and while he couldn't feel anything in the indicated area, he recommended a CT scan and bone scan. So the CT scan was scheduled for Thursday morning (11th) and the bone scan for following Monday morning (15th). Obviously the concern was spread of tumors, since we know that the disease has been essentially unchecked and we have been fighting the main battle up in her brain. To top it all off, on Friday (12th) she underwent Gamma knife radiation treatment for her two discovered brain tumors.

She had the CT scan on Thursday the 11th and we got a call from Kaplan that night. First he talked to me - and told me two things - tumors in the tailbone area causing pain, and treatable with radiation; and tumors in spinal column, untreatable. Then he asked the phone be passed to Meagan. I guess he wanted me to be sure I got the clear message, since we both are aware of Meagan's cognitive challenges. She talked to him for quite a while. After hanging up, she described the presence of tumors near the tailbone and how those could be treated with radiation, but said nothing about the tumors on her spinal column. Now this was pretty late, for us, and at that point I made the decision not to press the issue about what else he might have said to her. This is one of those cabana boy tough calls - balancing kindness and comfort with clarity and precision. I have also been in this position before where her recall has been different than my recall of a conversation even when we are in the same room and I usually lose out on those because even if I'm right, I'm wrong. Because precision doesn't really lead to anything but grief and sadness and doesn't change the overall outlook. Knowing she had a tough day ahead of her with the Gamma knife treatment the next day was a factor as well. So I held my tongue and we went to bed.

The next day was pretty much consumed with the Gamma knife and she had some Avastan which made her sleepy and out of it. So between the procedure and downtime when she napped there was no time to talk and when we got home she napped most of the afternoon. Of course I was busily googling about metastatic tumors of the spinal column. On Friday afternoon I also informed the boys as I had previously committed to them to not withhold information from them, even if it was withheld from Meagan. They also agreed not to tell her about the spinal tumors.

It wasn't until Saturday that we had a chance to talk more about the overall situation and the new news about the tumors discovered on the CT scan. In an oblique way I asked her what she remembered about her conversation with Kaplan and she confessed to not remembering much. It was throughout the day that we also realized she was indeed having side effects from the Gamma knife radiation treatment (fuzziness, memory issues, speech difficulty, a little physical instability). So I spent most of the day caring for her and sitting on the horns of a dilemma - do I tell her what I heard from Kaplan or not. Is blissful ignorance better (knowing the truth will come out on Tuesday) than knowing the "facts". If I tell her, it becomes a situation of "he said, she heard" - and I didn't have any information about where the tumors were or impact or anything - because the call with Kaplan had been brief and we were seeing him Tuesday. So I emailed Kaplan and said essentially, she didn't get the same message  you told me, but I am not pressing the point and will leave it to you to give her the full story in person, He got back to me quickly (this is Saturday remember) and said he has fine with that.

Well, my intuitive wife must have sensed there was something else going on. Because when we went to bed Saturday night she asked me if there was something else Kaplan had told me that she was not aware of. Gulp. So I told her. You can well imagine the reaction. I really had nothing to add to help her process it  - other than to indicate that to me untreatable was a big difference between treatable. But that we would have to wait until we saw Kaplan to understand what it meant.

So for the next two days, Sunday and Monday, Meagan sort of leapt to the conclusion that her days were numbered, life was short and that she better get busy. These were highly emotional days. I did email Kaplan and told him that Meagan now knew what I knew and that he should be prepared and he acknowledged that. So we walked into the appointment yesterday (Tuesday) expecting not just bad news, but terrible news.

As I outlined in my post of yesterday, the message in person was a little different. The facts were not different - the existence of the spinal tumors is undisputed. The extent of the spread was greater than I imagined. But his suggestion that he still had some treatment options was a different message than he told me over the phone (surprise!) and offered a ray of hope to Meagan, something she desperately wants. The hope is that she has more time than expected (these tumors don't cause imminent death) and there at least some treatments to try (versus none). So she walked out of there with a palpable sense of relief.

The problem (or one of the many problems) is that this swing in emotions from utter hopelessness and fear of imminent demise to one of a sliver of hope and thinking you have a bit more time is extreme. And that swing is almost paralyzing. She was in a daze most of the rest of the day - almost a state of shock. She couldn't think straight and was near tears. It was literally all she could do to just sit there and eat and eventually take a bath and then fall asleep. For her, an emotional person already, this kind of extreme volatility of emotions, is overwhelming. And that is why we concluded, in those times we could talk yesterday, that the setting of expectations about timeframes, progression, outcomes is just not productive. It's likely to be wrong, this disease is a moving target with little certainty of intermediate steps (even though she knows that in the long term it's going to get her) and therefore it's better to set no expectations than be run through the emotional wringer when the outcome is different one way or the other.

Of course I second guess myself. Should I have lied to her on Saturday night? If I had, she would have had two good days and the meeting with Kaplan as it turned out would have been ok. But I didn't know he was going to give her different information that he gave me. So if he had told her what he told me, would it have been better to have her prepared?

This whole scenario is another reason this job completely sucks.

But I have to buckle up the straps and be prepared to support her for another day. She has a 4:45pm MRI appointment today that will take about 4 hours - detailed looks at her spinal column in preparation for the Cyberknife treatment of the tumors near the base of her spine. My understanding is the tumors in her spinal column in the epidural space are not treatable with radiation. So we do have to wait to treat those via Kaplan- and a lot can happen to them in the 2-3 months we are waiting. And whether the possible treatments will have any effect is probably low - but it's not nothing.

At least it's sunny out...

How is it that bad news is good news?

when it is better than the terrible news you were expecting.

Frankly, what Meagan expected going into today's visit with Dr. Kaplan was that she would have untreatable cancer in the spinal column and that her life expectancy was greatly diminished. We based this in part on the call we got last Thursday night from Dr. Kaplan giving us the preliminary results of the CT scan. He told me then, small tumors at the base of the spine - treatable with radiation, and tumors in her spinal column - untreatable.

When we got there today, his tune was a little different. Yes, there are small tumors at the base of her spine, thus causing the pain. We are heading to Swedish Radiology and they will be doing a Cyberknife radiation treatment of those. She has a detailed MRI tomorrow and then the "zappage" will follow. The hope is the radiation treatment shrinks the tumors and the pain goes away. That part we expected.

The part that is different is the identified tumors on her spinal column. Yes, those exist. They are distributed up and down the column in the epidural space. But they are not untreatable. Kaplan said he has a few other tools in the toolkit he can employ - in time. They are different chemo regimes that are direct infusions into the spinal column. But that can't happen until her brain calms down from her most recent brain radiation treatment, which was last Friday. The wait interval is 2-3 months. So for now, we watch and wait. And hope that the current chemo she is on, Temodar, has some effect. He also said those spinal tumors would not cause anything imminent. So that was a huge relief for Meagan. For two reasons. One, it gives her more time. Two, at least having some tools that can be tried is better than being able to do nothing.

What we learned is that it is really bad to have any expectations or to make predictions - especially about timelines. We don't know how the disease will continue to progress and present, and Kaplan would not and could not give us any indication of what might happen in the spinal column and when. The emotional roller coaster of having one set of expectations and then have a different outcome (even though positive) is completely draining. So after the meeting we agreed the most sane way to proceed - is to live it day to day, deal with the symptoms and treatments as they emerge, and don't get into predictions, prognoses or timelines. It isn't helpful and can be downright debilitating.