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2019-05-9 00:37:34 UTC 2019-05-09 00:37 UTC

josh:  Hello

I had an appointment with my neuro-oncologist today, and we talked about the MRI that I had on Monday. She said that it does look like cancer (so, probably also GBM, I suppose) in the right temporal lobe - a third tumor, that is, sort of opposite from the location of the first one.

I had read the report yesterday and sort of saw it coming - the report said:

"There is interval development of linear foci of enhancement in the right temporal lobe abutting the wall of the right lateral (series 8 images 91, 94). Also noted is interval prominence of the linear focus of enhancement within the right temporal lobe (series 8 image 86)."

(but what does that mean? haha)

Here's a picture:



The sort of white things would be the cancer - again, I'm showing a 2d slice of what's best reviewed in 3d. What's different about this one is that it's not as focused as the others, and is sort of spread out. She mentioned that this would make it less of a candidate for surgery.

It's still really small, and it seems symptomless at this point. Based on my experience with the first tumor, that won't last. But really, who knows what to expect? I'm still right handed, so we're no longer in the dominant side of the brain. It has been on my to-do list to describe the symptoms of the first tumor (left temporal lobe) in a blog post, but I was also hoping I could just forget about them.

This is pretty rapid moving stuff - it took maybe 4 months for the 2nd tumor to show up after the first, and merely 3 weeks for the 3rd after the second. She had mentioned that for some reason, it's more aggressive than what they normally see.

Again, not great news, but I'm feeling good and looking forward to lots more great days. Also, I'm starting to read more about alternative treatments and things like that.

I remember reading that when you have GBM on both sides of the brain, there's a different name for it (something-else-oma), but I'm having a hard time finding it again.

I'll be meeting with my radiation oncologist next week to discuss plans in that area - she's still working on the radiation strategy for the area of the second tumor, and it may be that the best initial treatment for the third tumor is also radiation based (i.e., maybe "gamma knife" for both). I'll post an update when I get more information - that will be a week from now.


edit: I found out two things today (Friday, May 10): 1) my radiation appointments are cancelled - I can get more information as to why next week, but I'm assuming it's because they're thinking it's not doable with the third tumor being there, and 2) the official name for what I have is "Multifocal Glioblastoma" -- really that's been true since I got the second tumor.

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2019-04-29 22:50:23 UTC 2019-04-29 22:50 UTC

josh:  Checking in...

I started a new chemo plan last night - the generic name of it is lomustine. I took 200mg -- 2 100mg pills, following a half hour after some stuff that keeps you from throwing up called something like ondansetron. As expected, the side effects of the anti-nausea pill (mild fatigue and dizziness) are worse than the side-effects of the chemo, but that should be over soon. I'm thinking the chemo side-effects will be negligible. [edit: that lomustine is a spicy meatball! But a few days later, things seems to be getting better]

If I stay on this plan, I won't take the next pills for 60 days, I think.

I was going to wait until the day before my next radiation treatment plan started to take these chemo pills, but since we're waiting for better information before they complete the radiation plan, we decided to start chemo now.

Scheduled for another MRI next week - I think they'll complete the radiation plan soon after that, I'll post about what it is.

I got a copy of my April 15 MRI, and I can't even find the new thing they're thinking about -- must not be a huge deal, haha. Next time I go in, I'll ask them to show me where it is on their copy, and this time I'll pay attention so that I can post here.

Feeling good! Hope you are too.

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2019-04-16 13:11:03 UTC 2019-04-16 13:11 UTC

josh:  Hello - here's a quick update: My treatment schedule has been changing a bunch recently, and I've been choosing not to post until I felt comfortable that I could say for sure what was going to happen. Since it has been a while since my last post, though, I decided I would go ahead and post about what's going on.

After getting home from the surgery for my second GBM tumor a few weeks ago (which went really well), the initial plan was for me to get focused radiation treatment and chemotherapy again with respect to the area of the second tumor (which was pretty far away from the first one, but both affecting the left side of the brain).

After some thought, though the doctors decided it was still a little too close and too soon to use the more standard approach, so the radiation was canceled and instead I was scheduled to have a similar but more focused treatment using a "gamma knife".

Today was pre-op, including a new MRI that would give the doctors the latest on my brain, followed by gamma knife "surgery" early tomorrow morning.

The surprise twist was the result of today's MRI (isn't it always :) ), which shows something unusual in the right side of the brain (boo!), but again not really in the brain -- rather in a sort of water supply area. I got this info on the phone and I didn't hear the name of the brain part very clearly - I'll update when I do.

The radiation oncologist let me know that what they saw was odd enough that they want to get a few doctors to look at it and decide what to do. So my appointments for tomorrow are cancelled. It's possible that it's a third tumor, but again, it's still pretty early to make that determination. And in this case, it has been very little time since my previous MRI, which I believe did not show this new issue (there were two months between a clean MRI in January and the second tumor showing up in a March MRI). This time it's more like two and a half weeks between MRIs.

Anyway, I admit that I wasn't looking forward to the gamma knife, so I'm sort of relieved that it is canceled (or delayed).

It is somewhat discouraging to hear about what could be a third tumor (and on the other side of the brain from the first two), but I will wait until I hear more from the doctors before getting freaked out.

Even though these MRIs are sort of like the "all bad news all the time channel", I get constant reminders of how lucky I am to have the medical treatment I'm getting. I feel great and I'm still pretty optimistic about things.

I will post again when I get more definitive news from the doctors. Normally I would have waited for that before posting at all, but since it had been awhile and things were sort of happening, I thought it would be best to post this update. Thanks again for your thoughts and prayers!

edit: I talked to my neuro-oncologist this morning, and she mentioned that the new thing on the MRI really doesn't look like cancer. The same was essentially true of the two tumors when they were just getting started, so we have to stay wary, but that was nice to hear. I will update more soon.

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2019-04-5 21:53:57 UTC 2019-04-05 21:53 UTC

josh:  greetings! I'm running out of quick ways to start a blog post, I might need some training.

I got a little news on my treatment plan. My radiation oncologist called to say that the tumor regions were maybe too close to proceed with focal radiation around the new tumor, but they will be able to make a better call on that in a week or two. She talked about other possible approaches, but I won't know where it goes until there has been some more time and discussion among the doctors. I'll post then.

In the meantime, we started with a family support group at the hospital that will meet weekly, and I think we have a lot we can learn from that process. I had just never really thought about the best way to handle a cancer thing going on in the family. It's (sadly) far from uncommon, of course, so we will pay attention in the meetings.

The family aspect is yet another reason that focusing on today -- the time that is *now* and getting the most out of it is crazy important.

A few days ago hanging out with an old friend, I played a song I had worked on with Chris Lively. When sitting in the class, I remembered the song again. Chris wrote this one quickly. The production is pretty simple and the song is beautiful. That incredible steel guitar player is back for this one.

If you want to hear my contribution, you really need to wear good headphones or use good speakers. I was all about the mix and the spacial aspects of the song, but most of that gets eaten alive by a cellphone speaker or earbuds. That said, my work is *not* required to enjoy the song.

Like the other songs I've talked about working on, my thoughts were clinical, and I made no effort to think of the song in a personal context. At the family group, context filled in, and I could hear Chris singing about appreciating and making the most out of the time we have with the people we love -- it was not promised. Makes sense to me now! Have a listen:

Chris Lively - Distance - Taking Time (blog mix):

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2019-04-4 00:46:14 UTC 2019-04-04 00:46 UTC

josh:  hello - I had a nice *long* day at the cancer hospital today and learned/confirmed a few things - here's the update:

First things first - I got the staples out! Here's my new look:




some cancer info:

The new second GBM tumor originated on the "dura", which is sort of a wall between the left and right sides of the brain, and spread into the left parietal lobe. It wasn't just pushing - it was connected and preparing to juice up into full megadeath mode. I think this is what's expected from GBM.

We didn't talk about it, but I heard no reason to think that cancer cells had gone into the right side of the brain -- which so far has not shown any cancer-y stuff. Important for me.

The surgery went very well, like last time, but we have to assume that there are a bunch of cancer cells sitting in the area around where the tumor was (in the dura and the left side of the brain, that is). These cells need to be dealt with.

I was hoping to get more detailed DNA analysis on the cancer cells of the new tumor, but that's not ready yet.

Importantly (to me), the area surrounding the new tumor is completely separate from the area surrounding the first tumor. There have been no changes at this point to that first area. I like to think that the radiation on that first area was effective against the cancer cells which surrounded the first tumor. It has only been a couple of months, so it's probably too early to claim victory, but I could use a win right now :)

Because of this long distance between the two tumor areas (which is highly unusual, it turns out), the area around the new tumor can be hit hard. Normally, a new tumor would be very close to the older one, and the radiation oncologist wouldn't want to barbecue that same area twice with intense radiation -- treatment options would be more limited -- another win!

I'm officially out of the clinical trial -- I guess it didn't work :) -- and cut short on my current on/off chemo plan. Nice little break (which will start in a few days when I finish up the steroids I am taking from the surgery, I suppose).

So - we're sort of rebooting and planning radiation for this new area, together with chemo, which will also have some continued effect on the old area, I suppose. All this winning means I get a new mask!

from the trailer for Radiation Man 2:





I have been meaning to post a picture of this inspiring statue outside the hospital -- the woman stretching up to to the heavens with her compelling yet flippant message about the bird




I'll keep posting updates - thanks again for your thoughts and prayers! I will also try to make some more music posts soon.


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