Oncologist Review

E. met with the local oncologist today. It was another one of those review appointments more than anything. He was pleased with how E. was doing and was thrilled with the most recent MRI results. E.'s still having some long-term effects of the chemotherapy and radiation, including neuropathy in his fingers and toes, but there's nothing that can be done about that. Overall, E.'s doing great. Unless something comes up in the meantime, E. doesn't have to see the oncologist again for another six months as well.

MRI Results

It was before 8:00 in the morning when the radiation oncologist called with the results of yesterday's MRI. There is no new growth. Matter of fact, he said things even look a little better. I asked if cancer could present like that ... growing and then shrinking. "Not typically" was the answer, especially since there has been no treatment involved. "And what about scar tissue?" was of course my next question. "Sometimes." Don't you just love how clear this all is? Us too. But really, this is the best news we could have gotten. It's not the news we expected, which it makes it all the better and more incredible. Things need to be kept a close watch on, so another MRI will be scheduled for a couple of months down the road. In the meantime, we'll keep a close eye on things at home too.

MRI Day

E. got his MRI done today without any fanfare.

He has an appointment with the oncologist on Thursday, January 19th, so I'm assuming we'll get the results then.

Brain Tumor Review Board

The radiation oncologist called to let us know that the Brain Tumor Review Board had met and reviewed E.'s case. And we have no more information than we did yesterday! The Board felt like the area around the cavity in the back of E.'s brain showed more enhancement than the area around the front cavity. They agreed that there was some "fuzziness," but nothing definitive. There was some additional confusion because it was felt like the MRI's were not taken from the same angle. It is very difficult to always get the exact same angle in each and every MRI and therefore when looking at the different "cuts," you're not always looking at the same thing. In any event, the Board agreed that the next step should be another MRI, which is already scheduled for the 16th.

Review with Neurologist

E. met with the local neurologist today. She reviewed his meds, including the new one he was put on while at Texas, and left everything the same. She did rewrite his prescriptions so in case there are any problems, it will be easier to deal with her locally than try to may contact with the doctor back in Texas. E. did mention that he's had fewer headaches and less neck tension since adding the second anti-seizure medication, so that was a nice bonus. The rest of the appointment turned out to be a lovely social visit, comparing notes about New Orleans since we were fortunate to spend a few days there and she studied there. Unless there's a problem or something new comes up, E.'s not scheduled to see her again for six months.

More Questions Rather than Answers

Today we met with the local radiation oncologist. We had a list of questions for him, most of which he couldn't give us concrete answers to.

* Is the growth in the brain cancerous? It is hard to tell. It could be. It could be scar tissue. It could be necrosis. Because it is in the brain, it is not easy to figure out. You can't biopsy it as easy as you could if it were in other parts of the body.

* If it is determined that the cancer is growing back, is surgery a possibility again? Is cyberknife a possibility again? Yes, they are both possibilities. Of course, both are high dependent on various factors, such as the size of the growth and where the growth is exactly located.

* What about chemotherapy? Is that an option? There are very few drugs that penetrate that blood-brain barrier, but that is something we need to discuss with the oncologist.

* And what about whole brain radiation, which the "brain lady" in Texas implied would be the next step? Dr. T. said that whole brain radiation is really saved until it is absolutely needed because of the fact that it radiates the whole brain, healthy cells as well. The long-term impact of neurological and cognitive functioning is significant.

* If we know there is growth, why aren't we treating right now? Why are we waiting? A few weeks isn't going to make a difference. It is better to make sure we need to treat than to treat something we didn't have to (especially if we're talking whole brain radiation).

Dr. T. and his medical student then reviewed the CD of the MRI we brought with us from Texas. They agreed that there was "more fuzzy white stuff" that wasn't there before. "Fuzzy white stuff" is not good. But it is also not clear. The "enhancement" around the cavities (where the tumors once were) were previously a well-defined border, which is more indicative of treatment effect. When there is new cancer growth, they are looking for more "nodule" looking growth. "Fuzzy white stuff" is neither. It is not a well-defined border, but it is not clearly nodular either.

Of particular concern was the proximity of the "fuzziness" in the front of the brain to the left ventricle of the spinal cord. If this is in fact cancer coming back, there is serious worry about cerebral spinal access. Thankfully, right now there are no signs of this (physically or medically), but if any signs present themselves, an MRI of the spine as well as a lumbar puncture (or 3) would be required to determined if the cancer has "seeded" into the spine. If we come up against that, in Dr. T.'s words, "we're in big trouble."

Dr. T. commented what a unique case E. was. Most Stage IV Esophageal Cancer patients aren't around three years later cracking jokes in his office. Rarely does esophageal cancer spread to the brain. Other places, yes. The brain, no. And if Dr. T. were made to guess where E. would have a recurrence, he would have said anywhere in the brain BUT the two areas around the cavities. After the two tumors were surgically removed, they were treated with cyberknife and Dr. T. was confident that nothing would grow back in those areas ever again. But here we are. There is re-growth in those exact same two spots. As unique as E.'s case is, that uniqueness has served him well. He is defying the odds. He makes people stand in wonder and awe.

As it stands right now, we're sort of in a "watch and see" mode. E.'s case will be presented to the brain tumor review board on January 11th to receive more input. He'll meet with the local neurologist on January 10th and he's scheduled for that follow-up MRI on January 16th. He'll then meet with the oncologist on January 19th, and I'm assuming there will be a follow-up with the radiation oncologist as well.

As far as E.'s feeling, he's feeling pretty darn good. He's getting occasional headaches, especially when the weather changes or the fronts move in. His balance is a tad off, as is his short-term memory (that's his excuse anyways, although it still might be selective hearing ... haha). Speaking of hearing, his hearing has been effected, and unfortunately it is not just selectively. Once in awhile, he gets fatigued, but it's nothing an afternoon nap can't help. And hey, retired folk are supposed to nap, aren't they? :)

Good News and Not-So-Good News

Since our early morning appointment with Dr. A., the medical oncologist, was cancelled, we were wondering how we could most quickly get the results of yesterday's testing. We headed over to Medical Records to get a copy of the PET/CT as well as the MRI. The MRI had not been signed off yet, so we couldn't get a copy of that, but we got a copy of the PET/CT in our hot little hands. A quick skim of the report told us what we wanted to know ... good news! "No abnormal FDG accumulation is identified in the neck, chest, abdomen, or pelvis."

We then met with Dr. L., the neuro oncologist (or "the brain lady" as we call her), to review the results of the MRI. First though, E. had to undergo a thorough neurological exam. Dr. L. is concerned about E.'s seizures and believes they are increasing in frequency (his seizures are not what you'd typically think of a seizures, but rather, they are fleeting moments of missing time, feelings of strangeness or just being "off"). Because he is on the maximum dose of Keppra (anti-seizure medication), she is adding another medication called "Vimpat" in an attempt to minimize these seizures. Dr. L. then reviewed the results of the MRI with us and showed us the images on the computer screen. As soon as I saw the side-by-side comparisons (June's MRI and yesterday's MRI), my stomach dropped. There were changes. I could see it. And in case I wasn't sure about what I was seeing, Dr. L. clearly stated, "There are changes." She explained that there is "more enhancement" around the surgical cavities in both the front and the back of the skull (where the two tumors were removed). Things unfortunately aren't clear cut or black and white when it comes to matters of the brain. Questions remain. Is this "enhancement" a side effect from radiation? Or are the tumors growing? Big questions. No answers. Dr. L. recommended another MRI in four weeks to see if we can get a better idea of what we are dealing with.

We discussed coming back to Texas for the MRI or remaining local. At the end of the discussion, and at this point, I think we decided to remain local. If the tumors are in fact growing, treatment will occur locally and so it's important to get the local radiation oncologists back in the game. We will FedEx the MRI results to Dr. L., who will review them and confer with E.'s local team. In the end, we'll come up with the best game plan possible. Or, if a miracle happens, all that enhancement will disappear and no game plan will be necessary. That would be good. Really good.