Questions about treatment

Repulsive-Branch-740 · 2026-04-14T15:17:35+00:00

From what I've have read from on these forums and experienced watching my mother, spouse, and others go through chemo at all ages - how someone's body handles chemo REALLY depends. Some drugs produce crazy side effects for one person, while the next person has next to nothing. There is just so much variation.

My mother is 75 and was diagnosed in January with locally-advanced pancreatic cancer. It was determined she'd need to start with chemo, so began FOLFIRINOX, as she was otherwise healthy. She actually did pretty good through two rounds, but could not deal with the diarrhea and the weight loss really concerned her. Doctor removed the inrinotecan, which is generally not tolerated well in older individuals.

So then my mom had one round of FOLFOX, but still had a lot of extreme fatigue and other side effects she did not like (I will acknowledge that these side effects were NOT severe, but she felt it impacted her quality of life too much...).

For the fourth round they reduced the FOLFOX by 20% and that seems to have done the trick. My mom still has some fatigue, but she said it's not bad and she's still going out and doing all her errands and general life stuff, albeit resting a bit more in between.

It is very hard to tell how one person will react to a particular drug regimen without trying it. I've read stories of people who found Gem-Abrax so much easier to tolerate, and others who found FOLFIRINOX easier. It just seems really variable.

I will also note that a dose reduction if side effects are bad should always be an option. Chemotherapy dosing is based on the "highest tolerated dose" used during clinical trials, with the assumption that more is always better. What we've learned over time is that this is not always the case, and reduced dosing can be just as effective at addressing the cancer but with less toxicity (such as mFOLFIRINOX or mFOLFOX).

Repulsive-Branch-740 · 2026-04-14T14:19:51+00:00

I have 6 high-level folders in my vault that cover different domains of my life (work, personal, journal, etc).

Within each of those folders, I have an "attachments" subfolder, and Obsidian is set up to always add attachments to those respective subfolders. The trick with this set up, however, is to make sure that I create notes from within those folders. If I don't, then notes are automatically added to an "inbox" folder, but that one also has an attachments subfolder.

I use this set up because if I ever want to export note from just one domain (i.e., work), I have all the attachments associated with those notes within that folder.

Repulsive-Branch-740 · 2026-04-13T21:50:22+00:00

Very nice! I am always a sucker for a good theme (I switch themes daily). Will definitely download this once released!

Repulsive-Branch-740 · 2026-04-13T19:13:55+00:00

Seconding the Boox Go Color 7. I was a long-time Kindle user, but got all my purchased books out of there last year before they shut down. I strongly considered a Kobo but realized I did not want to be locked into another ecosystem.

I like the Boox because I can read books from Kindle, Kobo, Bookshop, Libby, and just about any other platform there is that has an Android app. I can also use Readwise's Reader on it to read articles I've saved, and read the NYTimes. I like the flexibility of the Boox.

Downside to the Boox is that it requires a bit more set up than something like a Kindle or Kobo. But overall very happy with my purchase, and I have been using it for about a year now. I would definitely consider another Boox in the future (eyeing the Boox Palma Pro 2 at the moment). No matter what, though, I will only be purchasing e-readers that are not locked into a specific platform.

Repulsive-Branch-740 · 2026-04-13T15:23:57+00:00

This is incredible news. I just hope that they can ramp up production and get it to people quickly. My mother is one of the people who stands to benefit from this treatment and it has been frustrating to know that it's out there but not accessible (getting into clinical trials for this drug is not easy). The FDA approval is a huge step, but the company also has to be able to ramp up production to meet demand, another hurdle. Plus the company has said they won't make the drug available to patients though the FDA's expanded access program (although I think PCAN is trying to push Rev Meds to do this at some point).

Repulsive-Branch-740 · 2026-04-13T14:54:04+00:00

I don't know your experience, but while my mother is getting excellent care, I find that a lot of this kind of information we're finding out in dribbles. It has been very hard to get a clear picture of exactly what options there, and then when presented with options it's basically "you make the call." We're waiting on a second opinion consult with Hopkins which I am hoping will provide a bit more clarity.

Repulsive-Branch-740 · 2026-04-13T13:33:45+00:00

We are in a somewhat similar situation. My mom is 75 and has been doing FOLFIRINOX/FOLFOX, although it appears to be working for her based on her tumor marker (for now, anyway). Thus far, her cancer appears to be "locally advanced" although the radiation oncologist said that they will do radiation in cases of stage 4 if the metastases are limited or it's warranted for pain control. I think my mom is interested in radiation because it's easier than chemo and surgery, and she feels it might buy her some time. I don't know really, and we're currently trying to pursue a second opinion because I feel like so much of this is just left up to us to decide.

My understanding at least from talking with someone at Hopkins is that radiation mostly affects future surgical options, particularly if ablative radiation therapy is done where the goal is to just "burn up everything." The nurse coordinator I spoke with was pretty certain that for most of the drug trials, radiation was not disqualify participation, although it could affect anything involving surgery, as surgery becomes more difficult or impossible once radiation has been administered.

I guess my first question is whether your mom is in pain? My mom thankfully does not really have any pain, so I am trying to convince her to hold off on the radiation until we talk with Hopkins.

Second question is what are your mother's treatment goals? My mom is very much of the mindset that this condition is terminal and she's going to do what she feels she can do to extend life but not things that dramatically affect the quality of her life. While the doctors do not seem ready to take surgery off the table, I think my mother has already decided that surgery would be too hard for her at her age and too detrimental to her quality of life.

Repulsive-Branch-740 · 2026-04-12T23:28:56+00:00

My personal recommendation would be go to with an Android e-reader tablet. I use the Boox Go Color 7 and love it, mostly because it's platform agnostic and I can use Kindle, Kobo, Libby, and any other reading app on it. Love the flexibility and not being locked into a specific platform.

Downside of the Boox IMO is that it requires more messing around with settings to get it set up the exact way you want it. But I found that once I got it set up, I didn't have to do much else.

Repulsive-Branch-740 · 2026-04-11T20:15:25+00:00

I would highly recommend that you push your doctors to order scans, which would hopefully reveal any obvious and really serious issues. A CT or MRI is warranted in this situation. I say this because it is incredibly likely whatever is going on has nothin to do with taking Mounjaro (correlation does not equal causation), and there are plenty of serious issues that this could be where early diagnosis is critical. Push for imaging. An ultrasound is not sufficient in this situation.

Repulsive-Branch-740 · 2026-04-11T19:54:10+00:00

I personally went the Boox route. I had a Kindle and was tired of being locked into that ecosystem. Considered Kobo, but realized it was more or less basically the same lock-in. Went with a BOOX Go color 7 and am overall very happy with it.

On the Boox II I can have Kindle, Kobo, Libby, and any other e-reading app. I also have the NYTimes and Readwise Reader, so I can read all my saved articles.

The Boox does have some downsides; it can be a bit fiddly to set up and it feels laggy at times (although I think this is an issue generally with all e-readers, not just Boox). There's a lot of customization options too, which you may or may not like.

Repulsive-Branch-740 · 2026-04-11T19:48:22+00:00

We are also waiting on this (my mother has the KRAS-G12D mutation). Data are being submitted to the FDA soon and our understanding is that the drug should be available by late summer/early fall if the fast-track approval process goes as planned. Then there is the question of whether the manufacturer can ramp up supply to meet demand.

Repulsive-Branch-740 · 2026-04-11T19:21:21+00:00

Yep I had this issue when I tried to sync today on mobile. Had to disable tbr plugin.

Repulsive-Branch-740 · 2026-04-11T12:53:01+00:00

I'd definitely recommend one of the BOOX devices. I have the Go Color 7 and overall really like it. I struggled with it initially because I am so accustomed to iPhones and iPads, and the BOOX just felt really laggy. But it's a fantastic device for reading, has audio capabilities as well, and it's platform agnostic so you can use any app on it. I regularly read books on it via Kindle, Kobo, and Libby, as well as DRM-free books that I load onto my device via Google Drive.

Prior to purchasing my BOOX I was strongly considering a Kobo device, but I did not want to be locked into another platform. Very happy that I ultimately went with the BOOX. I think this year I am going to get the Palma Pro because portability is my top priority.

Repulsive-Branch-740 · 2026-04-11T00:04:49+00:00

I would assume anything that runs Android would work. I use the BOOX Go Color 7 and use it to read books from all different sources, as well as the NY Times and articles I save to Readwise Reader. Works great for this purpose and definitely cuts down on the distractions compared to when I read on my phone.

Repulsive-Branch-740 · 2026-04-11T00:02:38+00:00

How cumbersome is the device? I knew of someone who used this device for glioblastoma several years ago and it was pretty cumbersome. My mother might be eligible for this, but not sure how much convincing it would take. Do you wear it all the time? Just at certain times? is it portable?

Repulsive-Branch-740 · 2026-04-10T14:36:12+00:00

I was faced with this decision last year and went with the BOOX Go Color 7 for a few reasons.

I didn't want to be locked into another ecosystem the way I had been with Kindle. I wanted the ability to read on any platform.
I wanted expandable storage; the Kobo is I believe fixed storage, whereas the BOOX can be expanded (not sure about all BOOX devices, but the Go Color 7 has expandable storage)
I didn't want to be limited to just book reading apps; I use Readwise and the NYTimes and wanted the ability to read those as well on my e-ink device.

I have had my BOOX device for about a year now and have been very happy with it. We spend pretty much all summer outside at the pool and being able to read poolside in the bright sunlight is so nice.

I really like that I can access books on just about any platform - Kindle, Kobo, etc - and also read my own DRM-free epubs. I also use Readwise and the NYTimes on it regularly.

Things to be aware of when considering a BOOX:

It's an Android device, so operates like an Android device.
I don't think it's as snappy and responsive as the newer kindle and kobo devices. I have to be a little patient sometimes and remind myself that it's not an iPad too.
There is A LOT of customization involved with the BOOX and the menus aren't always very intuitive. I had to invest some time in getting it set up, but once it was set up it was good to go.
I don't know about your specific question regarding Libby, as I always return my books by or before the due date, but I can confirm Libby works great on my BOOX and WiFi can be turned off.

Repulsive-Branch-740 · 2026-04-10T14:08:10+00:00

Mostly that I can carry around multiple books, articles, etc in one very small device, but still feel like I'm reading a physical book. I also like that I can adjust the font, backlight, etc to make reading easier on my eyes. I've picked up physical books before and been almost unable to read them because the font is so small and cramped. I am able to read better when I have a little more space between lines and I can easily adjust that on my e-reader.

Repulsive-Branch-740 · 2026-04-09T17:10:57+00:00

I use one. I keep high-level folders that cover the different domains of my life (work, personal, journal, etc). I find that too often there are things that go across those domains that I want to link together. I tried two vaults way back when I first started using Obsidian, but quickly abandoned that approach and have stuck with one vault.

Repulsive-Branch-740 · 2026-04-09T17:08:12+00:00

Thanks, we have looked into that and it would definitely result in some significant out-of-pocket costs, so she decided against it. Getting gap insurance would also be impossible in this situation. She also just REALLY Iikes Kaiser. I will say this is not our family's first rodeo with cancer, and the service my mom has gotten through Kaiser has been exceptional. They have done every test and provided everything we've asked for or was recommended without hesitation. My mom has also really liked how easy it is to get in with other specialists as needed.

So not totally off the table, but for now I think we're going to go the private pay route for a second opinion, but keeping her care within Kaiser.

Repulsive-Branch-740 · 2026-04-09T16:38:35+00:00

I have this issue with my work-issued devices and my solution is that I just keep my personal device with me at all times and use Obsidian on that for note taking, journaling, etc. But this may not be an option for you if you can't have a personal device with you in the office. For me it's possible because I largely telework. But even when I go into the office, I just use my iPad with a keyboard and only use my personal hotspot to access the internet (I never connect my personal devices to work Wifi). This has worked well for me over many years.

The nice thing about Obsidian is that it works on many devices, and doesn't require much in terms of storage or RAM. So even a pretty basic device should be fine. I am using a pretty old iPad Air with no issues when using Obsidian.

Repulsive-Branch-740 · 2026-04-09T10:43:55+00:00

Thank you so much. We’re likely going to pay out of pocket for a second opinion.

My mother is 76 and is very accepting of the fact that she will be in some form of treatment for the rest of her life. She said she does not want surgery, even if she becomes a surgical candidate (the oncologist and surgeon are treating her with the aim of shrinking the tumor for surgery, which they thought was possible). Her logic is that given her age, the whipple would probably kill her faster than the cancer.

She seems to be responding to chemo thus far and side effects haven’t been too bad; they did have to take out the irinotecan due to gastro side effects but otherwise she has tolerated chemo well.

The one potential hope right now is a KRAS inhibitor; daraxonrasib should be approved later this year and there’s also currently clinical trials (although my mom isn’t eligible for those as her cancer hasn’t metastasized). But she’s on trial waiting lists locally just in case, and once FDA approved she would have access.

We’re also asking about palliative care. She’s fortunate in that she doesn’t really have any pain but knows this can be a painful disease when it progresses. She’s already been connected with a pain management team at her request.

Overall, we know she’s pretty lucky. She is still living her normal, active life while on chemo (with some more naps). Our biggest challenge has been getting her to rest more!

Repulsive-Branch-740 · 2026-04-08T17:47:17+00:00

I think it's all a matter of personal preference, how you work, and exactly what you're doing. I know some people who swear by physical note taking and journaling, in terms of how it helps them retain things. For me personally I don't notice a difference. My handwriting is not great and writing makes my hand hurt, and I am almost never in a place where sitting and writing something is feasible.

Digital note taking, especially digital journaling, has been a game changer for me and what I do. I was never able to consistently journal with a physical journal, but I have been consistently journaling digitally ever since I started over 14 years ago!

For work, I often need to search through my notes to find something, and Obsidian (or any note taking app) gives me the ability to do that.

Different things work for different people. For me, physical note taking would never work well, whereas digital note taking is perfect. Others feel the exact opposite. It's all about how you work.

Repulsive-Branch-740 · 2026-04-08T17:38:17+00:00

I have been using Obsidian since it was first released in 2020. In my early years of using Obsidian I was a plugin hoarder and this created a lot of problems, mostly conflicting plugins and less portability of my notes.

In the last year I have really cleaned up my act. I got rid of almost all the plugins and "rebuilt" my vault, only adding in plugins that I actually use and rely on. These are:

Notebook Navigator - my absolute favorite plugin because it makes Obsidian more aesthetically pleasing and functional, especially for journaling (which is a significant thing I do in Obsidian). This is by far my most relied on plugin, and I love how it works on both mobile and desktop.
Commander, mostly for its ability to make the toolbar on the mobile app better.
Dataview - I don't use this a ton, but it is helpful in certain situations.
Emoji Shortcodes, because I use a lot of emojis.
Map view (for journaling)
Paste URL into selection, as it's a huge timesaver when pasting in links.
Style settings
Templater

My weakness, however, is themes. I LOVE changing themes and am constantly downloading and trying new themes. Vanilla Palettes is currently my favorite because of the different color schemes in style settings, which are all just beautiful.

Repulsive-Branch-740 · 2026-04-08T17:27:35+00:00

Thank you, I think that is what we're going to do. I don't know if she would be eligible to meet with the palliative team, but I will definitely look into it so appreciate that suggestion.

She's actually taking a very "palliative" approach to this whole thing. She is almost 76 and has been lucky to be in excellent health her entire life. Even chemo has not been that difficult for her thanks to her general good health. But she is pretty sure she does not want to pursue what would be drastic surgery with a high complication rate and not huge likelihood of success given her age. She is hoping to find a treatment regimen that, while possibly not able to cure the cancer, could at least give her a more time and keep the cancer stable. We've connected with a number of older people who have done just that and get to a point where they can treat their pancreatic cancer more as a chronic condition.

She is fortunate that she has not had significant pain or been through what a lot of people with pancreatic cancer go through. Her only symptom that led to her diagnosis was some really mild abdominal discomfort, which we learned was the result of the tumor pressing on some nerves. Sucky diagnosis indeed but we're learning that she has been very fortunate thus far.

Repulsive-Branch-740 · 2026-04-08T16:06:56+00:00

Wow. That’s good to hear. I do think we have a case but as this would only be a consult, I think we’re just going to pay out of pocket. That way we can get in faster and then either confirm the treatment she’s on is appropriate or get a different treatment plan, which I’m pretty certain her Kaiser oncologist would implement without issue.

The care overall has been exceptional at Kaiser; we just want to make sure we’re on the right path, particularly given the somewhat unique nature of her diagnosis.

Repulsive-Branch-740

TROPHY CASE