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2019-05-24 21:00:56 UTC 2019-05-24 21:00 UTC

josh:  hello - another quick update

I'm expecting to get another MRI in a couple of weeks -- the radiation department at my hospital will have a look and possibly reconsider whether to stop treatment.

My surgeon confirmed that this third diffuse tumor is not something that could be surgically removed without a lot of collateral damage.

I also visited the radiation department at another hospital nearby, and they seem ready to take a more aggressive approach (they have different equipment, as well), but they'll also wait to see the MRI results.

Both of these are highly regarded hospitals/doctors/teams, and I'm lucky to even get even the first appointment with either one of them - I really couldn't be in better shape in this regard.

Also, I had a neuropsychology examination earlier this week and saw the report today. I had similar tests last October. The report shows that I'm hanging in there, and even improved a little since October - great news.

I'll post again when I get more info - I'm feeling great today and I hope you are too. Happy Memorial Day weekend, if that's on your calendar.

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2019-05-16 02:13:42 UTC 2019-05-16 02:13 UTC

josh:  Hello again -- hope all is well

I caught up with my radiation oncologist today and got a little more information. The group of doctors considers the GBM to be "disseminated", which I'm reading about now -- basically the tumors are far apart and not connected in any visible way. The dissemination is really rapid. As I mentioned, the second tumor appeared about three and a half months after the first, and what we're supposing is the third tumor appeared more like three and a half weeks after the second.

The team doesn't believe any additional radiation treatment -- whether the traditional type or gamma knife -- will help the situation, and that it will merely do damage. I believe they're thinking the same thing for regular surgery. We talked about the whack-a-mole game where you keep hitting the critters that pop up, but more of them pop up in other places (and when you're getting hit in the head, yes, it hurts :) ).

I asked her if there had been more time between the appearance of the tumors, say a year instead of a couple of months (or weeks) whether that would influence the analysis, and she said yes. I remember that my neuro oncologist mentioned that my cancer was more aggressive than they had seen before -- I suppose that's something, since I'm going to a well renowned cancer hospital.

I'll be meeting with another oncologist at a nearby hospital and looking for other alternatives. Wish me luck!

I feel great, and today was a really good day, I guess with the exception of the topic of my discussion. I recommend that you don't look up disseminated glioblastoma, but if you do, I have to say that the survival time seems completely unreal to me, and I have to think that I'll be around much longer. But I'm not getting cocky -- bravado doesn't really work with GBM.

In many ways, (and except for the times when I take chemo pills) I feel better physically now than I ever have, and I'm in better shape -- strange position to consider.

I'm choosing to have another great day today. Hope you have one too.

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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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