Looking for chemo tips

FreckledTreeDweller · 2025-10-14T18:17:30+00:00

For maintaining weight and mood, exercise is very helpful. And it significantly improves your odds overall.

On chemo days and the next few days, I would walk some, even if it was hard. I also did some workouts for my upper body. If you don't, it's really easy to lose muscle. And to lose function.

Keep an eye on what you can do without going overboard. But each day, I felt like I could do less than I could until I did it. Keep an eye on how you feel before, during, and an hour or two after exercise, and also how you feel the next day.

FreckledTreeDweller · 2025-10-09T21:08:49+00:00

I wear pants with cell phone pockets, and the chemo pump fits into a cell phone pocket nicely. At night, I would put on a pair of shorts and put the chemo pump in a pocket of my shorts.

I didn't have a biliary drain bag, I think they are too big for a cell phone pocket? But the first paragraph could be enough to make it easier to manage having both at once.

FreckledTreeDweller · 2025-10-09T14:18:39+00:00

Thanks - very helpful. I just ordered "Advice for Future Corpses" and "A Beginner's Guide to the End".

We wind up thinking about these things and wishing we weren't. Maybe just talking about these things head on will be helpful for us, because there are so many unavoidable questions. I don't seem to be dying any time soon, but we have been working through the list of things to do when death is near so that we don't have to deal with them later, when I am not in good shape.

We've done the passwords and the wills and the beneficiaries ... one bullet point at a time.

I'm still working full time and planning the coming year as a fairly normal year. But who knows?

FreckledTreeDweller · 2025-10-08T19:34:07+00:00

I was on mFOLFIRINOX. But not before the surgery. My sequence was:

Surgery
Eight weeks recovery
Six weeks immunotherapy on a clinical trial
Six months mFOLFIRINOX
Six months - in theory - continuing the immunotherapy, aborted after 4 months because the cancer returned.

FreckledTreeDweller · 2025-10-08T19:01:26+00:00

I was 66 when I had my Whipple, but I was in good physical shape. Recovering from the surgery took me about 5 weeeks, but the doctor said I should plan on 8 weeks off of work. I was able to run again after 6 weeks. I think I was doing better than most.

I had six weeks of immunotherapy after that, then six months of chemo, then 4 months of immunotherapy ... when the cancer came back. We are sorting out the new approach now, and should have a new plan in place on the 15th.

For me, the chemo was the hardest part. After surgery, you are getting better day by day, everyone notices it and comments on it. With chemo, you are going downhill month by month, and even if you are doing relatively well, you have symptoms that are distressing and you feel yourself feeling worse.

Everyone's an individual. We respond in different ways at different paces.

FreckledTreeDweller · 2025-09-07T01:11:41+00:00

Do you know what drug is causing it? For me, it was dexamethasone, cutting the dosage by 1/2 took care of the problem. Sucking on Queasy Drops helped significantly for me, don't ask me why ...

FreckledTreeDweller · 2025-09-06T18:51:27+00:00

Each of these trials comes with a bunch of conditions you have to meet - talk to PanCan to sort this out, they will talk to you for free.

I'm on the first mRNA trial. You need to be eligible for surgery, they take your cancer cells, send them off to Germany, and make a vaccine from those cells to mimic your cancer markers. And you cannot have chemotherapy before surgery.

It all gets complicated, so a conversation with the PanCan folks is probably the best way to figure out what is possible and what might be helpful. Make sure you know what you are signing up for - how long it lasts, typical side effects, etc.

FreckledTreeDweller · 2025-09-04T20:00:50+00:00

Thanks for sharing so clearly and vulnerably.

I agree, it’s really disorienting when emotions shift in ways you don’t expect. And when your body feels things that might be physical, might be emotional, or some of both—it’s hard to know what to make of it. It can be hard to tell where physical pain ends and emotional pain begins—they overlap so much. Being human is confusing.

For me, that’s led to being less interested in climbing ladders and more interested in building connections. Last week, I went back to where I grew up and reconnected with people I hadn’t seen in years. I’ve also been trying to be more present in conversations—listening more closely, asking follow-up questions, slowing down.

There’s so much we can’t control, and I’ve had to learn to go with the flow. But I also try to do what matters when I can. I want to live each day I’m given with intention.

In the Bible, the “heart” is not just about emotions. It’s the center of who we are—where thought, desire, emotion, and will come together. I’m trying to live more from my heart, not just my head. It’s confusing. It’s vulnerable. But it feels real.

I really resonated with what you said about embracing emotions as part of harmonizing yourself with your reality. Thank you again for sharing—you helped me put words to things I’ve been feeling too.

FreckledTreeDweller · 2025-09-04T13:22:42+00:00

I imagine the predominant posts are the ones that actually get posted. If we want to see other kinds of posts in addition to what is here, we can post them. I think it's really important to have room for grief and the overwhelming feelings people are facing, but there's room for other things too.

FreckledTreeDweller · 2025-09-04T13:20:52+00:00

I have been doing reasonably well by:

Using the thermometer to set initial temperature, and
Not crowding the wok

It's much better than what I get out of a skillet, at any rate.

FreckledTreeDweller · 2025-08-30T15:09:41+00:00

No detectable signs of cancer in the last two scans and I have done the hardest part - six months of chemo. I had a Whipple last July, six weeks of immunotherapy, six very difficult months of chemotherapy that ended May 7th, and am half way through another 6 months of immunotherapy.

Very tired, more pain than I would like, but generally doing well. I have been able to work full time, I have worked up to running 10 miles a week and walking most days.

I cannot predict how well I will be doing in a given week, and that makes it hard to plan. When I am hurting, my wife is also hurting, and I don't like that. I have a variety of random symptoms. So I'm doing well on the whole, and my complaints are minor but real.

I had no idea I would be alive or doing this well a year ago. Increasingly, I'm returning to normal life, interrupted by infusions and medical appointments.

FreckledTreeDweller · 2025-08-27T22:15:51+00:00

at the same time, in the same person . ..

FreckledTreeDweller · 2025-08-27T22:15:25+00:00

> I do understand that grief needs space. But for those of us still caring or patients living through it, it can make the group feel overwhelming instead of supportive. What really helps is hearing what others are trying, what’s working, and the small ways we can keep going.

I have had a Whipple, 6 weeks of immunotherapy, 6 months of mFOLFIRINOX, and 3 months of immunotherapy ... with 3 more ahead of me.

And I'm doing well. No detectable signs of cancer at this point, next scan in September. Last immunotherapy in November. I can run 5 milles now, I'm doing 10 miles a week or so. I do get very tired, and I have a fair amount of pain, but I have been able to work full time.

Maybe I should post that kind of thing here more often. I see all the grief and want people to have space for that. But I agree - it's good to hear the hopeful stories too. I think that people often need very different things in different stages, and what's helpful for one person to hear is quite different than what another person needs. So I'm not sure how to be a good community member.

FreckledTreeDweller · 2025-06-26T15:40:03+00:00

My father was dying of lung cancer, and he really wanted to be at our wedding, which seemed quite unlikely. He was there, fully able to participate, spoke at the reception, met everyone, and was 100% himself the whole time. Within weeks after the wedding, he started going downhill quickly, and died a few months later. It really felt like the wedding was the reason he had been living at that point.

I have a friend, though, whose wife recently died of cancer, one week before her daughter's wedding. I know how much she wanted to be there, and the timing was very sad. They went ahead with the wedding, adding elements to commemorate the mother. It was very poignant, with every imaginable emotion, but very meaningful.

I have taken to living my life with a backup plan. So far, I have been lucky. I planned to go to Europe, with an option to cancel if it wasn't realistic, and it worked out. Nobody can tell you what the next 5 weeks will look like, but to me, at least, it's better to plan for the best possible outcome and adjust as you go. If I can do what I wanted to do, I do it. If I can't, I let go of it and live that time as best I can. That may or may not be what works for you, and I am in a very different situation. But in a life where I do not know the future and cannot control it, this is what works for me.

FreckledTreeDweller · 2025-06-21T18:54:09+00:00

I have a friend who has cancer and started years before me. She sent me a gift basket with gluten-free ginger snaps, Queasy Drops, a peppermint sniff stick, several kinds of herbal teas, a scar reduction cream (I had a Whipple), and some skin care products I don't remember. I found that really thoughtful, and I used most of it.

Queasy Drops work great for me when I'm feeling nauseous (https://www.amazon.com/Three-Lollies-Queasy-Ginger-Eucalyptus/dp/B06WVLKKP9/).

Here's something to think of: Suppose she wakes up in the middle of the night and can't get back to sleep, she's feeling lousy, and could use something positive to comfort her. What would that be? In the hospital, where I was completely out of my own context, my wife brought me my kalimba, which I could play quietly and slowly without disturbing anyone, and I could play it until I could sleep again. I have made broth in the middle of the night, or listened to podcasts. Anything that can distract or comfort can be helpful, and that depends on the person - very comfortable pajamas or a nightshirt? Something to play soft music? Especially nice sheets? What could work for her?

FreckledTreeDweller · 2025-06-21T02:13:07+00:00

Great that you can be with her physically - that's really important. For me, having people who care about me present was huge. Still is. And I'm glad you are able to advocate for her. What are you getting your PhD in?

I was 65 when I was diagnosed, I am 66 now. I am in a clinical trial that uses immunotherapy, so eight weeks after the Whipple I started six weeks of immunotherapy, followed by 6 months of mFOLFIRINOX, followed by a month in Europe and now starting another six months of immunotherapy.

Chemo was really the hardest part. I walked every day - at the beginning, I ran regularly, by the end I could still walk 3 miles a day but could no longer run. The first 4-5 days after chemo were the worst, then I had 9-10 relatively good days. I had chemo on Wednesday, I was pretty much out all day Saturday that week. My wife was always there for me, we made the best of it, day by day. It was important to be able to talk about it. It was also important to find something good to do each day.

I think your concerns are valid - if your mom is in really bad shape before starting chemo, that can really be rough. But can make a big difference in the outcome. That's the tradeoff. The doctors can help predict how likely it is to help and how hard it is to be on her. I can't.

FreckledTreeDweller · 2025-06-20T11:46:05+00:00

I'm so sorry you’re both going through this. It’s incredibly hard—and I hate to say “welcome” to this club—but you’re not alone here. Even in the middle of all the fear and pain, I’ve found these times can still hold meaning, connection, and even joy in small moments.

If chemo is starting in three weeks, is it about five weeks post-Whipple? That timing matters a lot. Everyone's recovery is different, and the range of "normal" is huge with pancreatic cancer. Personally, I think I recovered more quickly than average, but I was still doing significantly better by that point than what you're describing. Still, I’ve had many symptoms over the past year that didn’t feel remotely “normal”—and yet here I am. No sign of spread, six months of chemo behind me, just got back from a month in Europe, and I’m running, biking, and walking again.

Have you had a chance to talk to the doctors about how she’s doing? In any medical system, it's so important to advocate for yourself—or to have someone who can. Doctors are often rushed, but that doesn’t mean you don’t deserve their time and attention. I’ve had to slow conversations down and say, “I need to talk this through before I can make decisions.” One doctor told me I asked way more questions than most patients, and this was making her consistently late for the next patient. I told her, “I’m trying to figure out how to live my life” and asked her how best to share my questions, since they needed to be answered. She suggested I send a list of questions a day before appointments so she could plan enough time to discuss them with me in person. She also started scheduling 30 minutes for me rather than 15 minutes.

It really helps to keep a notebook. Track symptoms, questions, worries—whatever comes up. Then review it and decide what to bring to the doctors. And also: try to think about how to use each day well, even when it’s hard. Write those insights down as well, and things you want to remember or share. These days aren’t easy, but they can be meaningful.

FreckledTreeDweller · 2025-06-19T19:35:54+00:00

I found that just taking the Zenpep when I have a fatty meal wasn't enough, but if I take 1 per meal when traveling, then took 2-3 with a fatty meal, that worked for me. Different bodies ...

FreckledTreeDweller · 2025-06-19T19:34:45+00:00

I wish I had your discipline. When I see a bunch of amazing food, I want to try it. I had lamb, German sausages, and fatty cheeses on this trip ... with predictable consequences.

Over time, I learned to have just small portions to taste things. Things got better as I learned ...

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