This week is even more full of doctor's appointments than I could have anticipated. Its only Wednesday morning, but we are already due for a recap.Monday, we saw Dr. Geoffroy (pronounced "Jeff-wa"). Very french sounding isn't it? Dr. Francois Geoffroy. I love the sound of it and I love him even more. He is very good. We have only seen him twice but he is very knowledgeable, which appeases Brian, and equally personable, which is a huge perk for me. As I may have mentioned before, he has just gotten back from a brain tumor fellowship at Duke. He is on top of all of the various studies, and clinical trials both here and abroad. After each of my questions, he always cites some recent German or Italian finding which gives me hope that SO much research is being done all over for brain cancer.
This also helps to quell some of my overwhelming anxiety over the fact that a lot of times your answer with brain tumors is "we aren't sure." I have heard that answer so many times it makes me sick.
Monday, Dr. Geoffroy came into the room with his confident, cheerful demeanor and got straight down to business. He was working on getting a copy of the chromosome analysis from Mayo and I didn't even have to ask about it, he opened with it. How nice to have a doctor who follows through on his own!
One of the first things he said to us was, "well, Brian, you are a MUTT!" and then he went on to explain.
Here are the complicated and confusing genetic bits. I have discussed the 1p19q co-deletion here before. Generally, people who have tumors where chromosomes 1p and 19q are both gone (deleted by a specific genetic mutation in the tumor cells) respond better to chemotherapy than people who are 1p19q intact. More often than not, 1p19q stick together, from what I have read and understand. That is why its called a co-deletion.
Brian's tumor cells are 1p intact, and 19q deleted. And something about 1p being 1.2% meaning he actually has extra of that chromosome. I of course asked how common this was and Dr. said he had seen it "a couple times." Great. Another rare aspect of a rare tumor that is rare in someone like Brian. I really wonder if we should start playing the lottery.
Unfortunately, 1p is the chromosome that really contributes to the cancer's resistance to chemotherapy drugs. Like the ones Brian has been on for five months.
Forgive my repeating of some info from previous posts, but the further on we go, the more I learn and I can see that I have made some mistakes with information due to either misunderstanding, or misinformation up until now, so instead of editing old posts, I will just recap what we know thus far with correct info (as far as I understand it today).
Brian's Oligoastrocytoma grade III is a mixed cell tumor. Dr. Geoffroy was good to explain how pure astrocytomas behave versus pure Oligodendrogliomas to help explain to us why he recommends the plan of care that he does for us.
Pure grade III astros like to come back faster and evolve into grade IV glioblastomas sooner than pure oligos. An astro prognosis can be as little as two to three years, whereas someone with a regular old grade III oligo can be stable for as long as 10 years. What do you think my next question was?
How long until Brian's Mutt cancer gets bad again then?
Since Brian has a mixed tumor, there is no way of knowing if it will behave like an astro or an oligo, but generally speaking, his cancer will most likely show up again somewhere in between the two, in the 5 to 7 year range. Which is better than 2-3, but not what I ever want to hear.
Because of the genetic markers, and the uncertainty over how this particular tumor will behave, we were then re-referred back to the radiation oncologist. They got Brian in yesterday, which was nice, but I always get nervous when they move so quickly. Like when he had brain surgery two days after his seizure, I knew how serious it was.
My frustration is, as always, with the uncertainty of everything. Not only the kind of tumor Brian has and the genetic make up of it which seems so rare, but with some of the reasoning behind these medical decisions. We were set up with the radiation oncologist in March, but the first medical oncologist we saw cancelled the appointment saying we should just try chemo and save radiation for later since we will only be able to use it once. Now I am left to wonder if the five months of expensive, toxic chemotherapy was even worth it, or if that is time and money wasted.
Anyway, Brian saw the brain surgeon for the first time since surgery day, yesterday. We have had so much trouble with that office and I was very wary of going to that appointment, but everyone was polite, and seeing the surgeon instead of the nurse practitioner yielded some more accurate information. His six month MRI looked good which was a huge relief! Brian was sent home with his release to work in hand since no one there seems to know how to operate a fax machine, and set up with an appointment again, for three months. Dr. Geoffroy said we didn't really even have to see neurosurgery again, that he could just order MRI's from now on because he always wants to see it for himself anyway. I was thrilled about that, but the neurosurgeon said that sometimes, with all of the patients they see, if they just get a report from an MRI sent over it gets lost in the shuffle. (How refreshingly honest! That office is a mess!) And that if we have an appointment, they have to look at the results. He explained that this is a triple check of sorts for Brian. He will see it, Dr. Geoffroy will see it, and the radiation oncologist will see it. Then all of the doctors, in their specialties can look for what they each need to look for. But he did hold off ordering one because we said we just preferred Geoffroy take care of it for us.
Then, also yesterday, Brian saw the radiation oncologist. I wasn't able to go to that appointment, but it sounds like it was just a consultation. Brian seemed to like him. He goes back today and I think Friday. There is a lot of preliminary work to be done before they can start radiation. Brian will do that each weekday for six weeks, 30 or 33 sessions depending on the dosage. This will make him lose his hair just in the spot that they radiate, but he can still work so we will try to get his appointments first thing in the morning so he can just go home and rest because he will be tired. He may have short term memory loss which has him all nervous, but he may be just fine with that too. He prides himself on his memory and sense of smell, so we hope to keep both of those intact always ;)
Then they will do another MRI after radiation. I was glad Dr. Geoffroy warned us that with the post-radiation MRI, a lot of times it looks like the tumor is back with avengance, and this is actually a good thing because it means that area of bad tissue is very irritated. Then they do another one around two months out and it should look clean again.
Right now, Brian is at the CAT doctor hopefully getting the okay to come to work tonight. Which will mean he needs to get some sleep today between appointments and then head back to work. He is both nervous and happy about this. He is afraid he can't remember how to use the machines, but he is so smart that I know it will come back to him.
As for me, overall, I feel like we got really good news this week, but I am not as relieved as I feel I should be and I can't figure out why. I am edgy, anxious, I have lost my appetite and I can't sleep. For me, this is ultra stress mode. This is how I get when I am super stressed or deeply depressed. I really am surprised it took this long to get to this point in the first place, especially considering I don't feel like this is the most stressful part of the process. Maybe I was just so in shock in the beginning and now it is just finally starting to sink in that this is our real life. Yesterday as we left the neurosurgery office and I headed to work Brian asked, "do you feel weird?" and we both did. I can't even quite put my finger on it but I am just...unsettled.
I haven't wanted to eat much this week and last night I dreamt that I looked at myself and I had grown very wan and frail almost like a skeleton. What did that mean? Anyway, when I got up I ate the last piece of chocolate cake that Brian had saved for me for breakfast. I need some stress management tools because school starts next week and I need to be able to focus. My nerves just feel shot!
This post turned out very long! I am glad I didn't wait until the end of the week because I am sure there will be more to report as we start the radiation process! Stay tuned and keep praying!