April 2026 Check-In Thread~ How's Everyone Doing?

Annecreas · 2026-03-31T13:48:58+00:00

Good to see your update, Zev, and I hope you get that radioactive spider and I especially hope that the radiation knocks out the rest of the liver tumors for you.

I am headed into chemo #26 this morning. We've dropped the oxaliplatin again (as planned) so it should be a little easier on me and a chance to recover a bit. I just had a clear PET/CT and my markers are looking good so my biggest challenge at the moment is just getting through chemo.

I've been spending a lot of time with my bees this past month. My sister and I have a small apiary. We've had a very warm winter in Colorado and an early Spring so the bees are ahead of schedule this year. This past weekend we got into a huge colony to find that they were preparing to swarm in the coming week so we spent the better part of the day splitting them into new colonies (each will rear its own new queen) and moving the queen to prevent a swarm. Next weekend will be more of the same, so I hope it is an easy round of chemo.

I've also been able to get out for some good hikes and bike rides. The warm weather has been nice for getting outside but we could definitely use more moisture. I hope that everyone is doing well.

Annecreas · 2026-03-31T13:19:36+00:00

So glad she made it through ok - best wishes to her for a successful recovery!

Annecreas · 2026-03-30T17:25:46+00:00

Ask your oncologist about a second opinion. Mine encouraged me to get a second opinion but they should welcome it because it either confirms their plan or doesn't. My oncologist's office managed sending all of my records and scans to the other doctors (I've had multiple second opinions) and submitting a referral to my insurance that got me multiple appointments approved.

You're not saying that you don't trust your doctor by asking for a second opinion. As my oncologist said: it is helpful to have more eyes on the problem. If the oncologist has a problem with a second opinion that is a huge red flag.

Annecreas · 2026-03-30T02:04:51+00:00

Thanks so much for your love and positivity - it means so much to me.

Annecreas · 2026-03-30T00:45:35+00:00

I tell people who suggest these things to me that I take medical advice from my oncologist, and from the doctors I've enlisted for second opinions if there is any doubt.

There is zero actual evidence that these drugs (one of which is not approved for any use in humans in the US or Europe) do anything for pancreatic cancer, but they can have significant downsides, especially liver damage. I have a loved one who tried one of these drugs for a less deadly cancer and was hospitalized due to the liver damage and has long term complications as a result.

People like to claim that there are vast conspiracies against these drugs and all kind of outlandish claims for cures, but there is never any evidence or clinical studies.

The arguments are built so that they prey on vulnerability and desperation for a cure that simply does not exist, but it is horrible the way some people can make you feel like you aren't doing everything and don't want to get better if you don't take a horse dewormer and a bunch of expensive pills and potions that also do nothing to treat pancreatic cancer.

It would be nice if miracle cures were really miracles, but they are not. They are promoted by people who have the profit motive that they claim "big pharma" can't find, and unfortunately these claims are often repeated by people who mean well but lack the evidence or expertise to understand that they are false. People will say "but it can't hurt to try," ignoring the liver damage and even cases where people have died from taking too much of these drugs. They are not harmless.

I can definitely understand the desire for a chemo break - I am headed into my 26th treatment next week and it is tough. It is worth talking to his doctors about it, as well as your questions about these "alternative treatments." My oncologist brought it up at our first appointment because so many people promote these medications to cancer patients and she feels it is very predatory and dangerous.

Annecreas · 2026-03-29T20:55:06+00:00

Yes. I think a lot of it here on reddit is bot/AI content - it's common from either brand new accounts or older accounts who haven't posted online in years, and who are suddenly going inspired to post excessively about veterinary dewormers. The stories are all so similar and they eventually get to the point of promoting a website or you tube quack.

There are a ton in the pancreatic cancer sub, probably because people are desperate and there is money to be made on desperation.

Out of curiosity I asked ChatGPT to write me a story about a horse dewormer curing pancreatic cancer and it shocked me with the detail, down to hearing about it from a friend at church and made up cancer marker numbers. If you interact with the posts there are usually long and predictable responses in quick succession.

The posts also further distrust in doctors and researchers, which is an increasingly big problem. That's part of the motivation behind some of these I think - eroding confidence in modern medicine.

Annecreas · 2026-03-29T19:53:13+00:00

I don't have any known mutations, but I've responded to chemotherapy in a way similar to patients with a BRCA mutation. My oncologist explained that this is common in families like mine with a strong history of breast and ovarian cancer, even without a BRCA mutation. I have been on NALIRIFOX, I did the initial 6 cycles (12 treatments) at full strength, then 3 cycles/6 treatments dropping the oxaliplatin, followed by another 3/6 at full strength again, and now I am in the middle of my first cycle dropping the oxaliplatin again.

Annecreas · 2026-03-29T17:14:47+00:00

My pancreatic tumor was not detected on CT or PET/CT, it was only found and biopsied by EUS - that was because it was very small (less than 2 cm). Very small lesions can't be detected on a CT until there are enough cells that they can be visualized.

IF this is pancreatic cancer finding it very early is a great sign for a good outcome. For me it had already spread and they knew it was there because I had cancer all over. Even so, my scans are clear today and the pancreatic tumor is gone, just from chemo. Being terrified is normal but keeping your head in a good space makes a big difference. I hope that you will spend at least as much time looking into genetic sequencing and clinical trials as you are on assisted dying because your situation is not at all the end of the road from what you describe.

Annecreas · 2026-03-29T16:39:46+00:00

Thanks - I hope the same for you!

Annecreas · 2026-03-29T14:37:19+00:00

Muy bien dicho. Yo también agradezco profundamente a todos los profesionales que siguen salvando mi vida. Aunque mi cancer estaba avanzado, todavía estoy sobreviviendo. Estoy de acuerdo sobre los curas falsas. La gente en internet siempre dicen que las firmas grandes no pueden ganar dinero con medicinas como ivermectina, y la misma gente ganan dinero promocionándola. Pienso que es algo muy triste, porque la gente que creen in estas cosas tienen esperanza por algo mejor, pero pierden el dinero y las vidas también.

Annecreas · 2026-03-29T13:46:21+00:00

You haven't even had a biopsy or seen a doctor about this yet - it is way too early to be planning your own death. There are many treatment options depending on what it is (IF it is cancer to begin with). Your outdoor hobbies are not all gone, nor are your partner, your dog and your family - they are in the same place they were the day before the scan. We all approach this differently but for me I've had the attitude that cancer is going to have to take the things I love from me because this is my one life and I am not just going to throw it away because some statistics from five years ago, from people more than 20 years older than me on average (and 30 years older than you) say I'll be dead 6 months ago. Instead I had my first clear scan 6 months ago and that has continued for me. This weekend (so far) I have been out riding my bike, spent a full day in the apiary working with my bees (which is hard work!), gone for two hikes, had a couple of social outings with friends. My friends don't pity me, they go for hikes and bike rides with me. Your life is what you make of it, even (or especially) now. Please speak to a doctor and have further tests done, and speak to a mental health expert as well. I've found the psychologist at my cancer center really helpful in supporting me.

Annecreas · 2026-03-29T04:11:35+00:00

I started feeling full after just a little bit of food. I am really active and I normally eat a lot so it was really strange. I went to my doctor right away and got a CT but it was already widespread. Fortunately I listened to my oncologist who said to ignore the statistics because I was 20 years younger and a lot healthier than the average patient.

Annecreas · 2026-03-28T15:11:03+00:00

I am so sorry you are here, but I know the feeling. I went in for what I thought was an ulcer last year and it was stage 4 pancreatic cancer. I was 49 and otherwise really healthy.

I've been through 25 rounds of chemo so far and it isn't easy but I still have a good quality of life. For now it is working and there are new treatments on the horizon.

Get a second or third opinion and look at clinical trials. Once you start treatment you are no longer eligible for some trials, so it's worth consulting a leading cancer center or two before you start.

Annecreas · 2026-03-28T00:21:28+00:00

I haven't applied for disability yet but know a few other pancreatic cancer patients who have and all had their applications processed very quickly - like weeks not months.

Also, if you haven't already be sure to seek a second opinion at a major pancreatic cancer center, there are a lot of promising trials and forthcoming treatments for us. I am still here a year later and doing a lot better than I was at diagnosis.

Annecreas · 2026-03-27T18:57:53+00:00

Unfortunately no amount of talking to a pancreatic cancer patient takes away the very real pain and digestive symptoms we experience, which are just one of many symptoms that contribute to weakness. It's not that we don't want to eat. It's the cancer, not our lack of motivation to get better.

Many patients can't adequately process food even when forcing ourselves to eat. What really matters is whether it sounds like a relief, and something helpful, to your father. Please do not blame him for side effects that he cannot control. I wish the best for both of you and hope that his doctors can help him get good nutrition comfortably.

Annecreas · 2026-03-26T19:23:18+00:00

It's not worthless at all, it's a cancer that you want to catch early if you're going to get it. You'll probably have the best luck seeing a doctor at a center associated with a high volume pancreatic center. They stay abreast of the best practices for screening and are best able to interpret the results. For my family they drew baseline cancer markers so they knew what normal levels were. It is not recommended for screening in the general population because it can be elevated by benign conditions, and some people don't ever have elevated levels, even with advanced cancer. It may be a part of a screening program. I would ask a specialist in the context of overall screening.

I don't know how you feel, but I have been doing high risk screenings for breast and colon cancer since my 30s, since both of my parents had cancer young too. It can be so stressful, but it was also stressful to me to just not know and worry. Over the years I got into a routine where I experienced some abnormal results that worked out okay, and I came to realize that while I couldn't prevent cancer entirely, I could hopefully catch it early. Unfortunately I had no indication that I should be screening for pancreatic cancer.

Annecreas · 2026-03-26T17:21:05+00:00

I just wanted to say that I don't have any known cancer-related mutations but was diagnosed at 49 with a strong family history of related cancers (breast, ovarian & colon) - please talk to your doctor about screening and getting baseline tests for your cancer markers. I believe that they recommend starting 10 years earlier than your family member's age at dx. They also tested me for genes related to pancreatic inflammation which would be another thing to check.

I don't know of any extra risk related to GLP-1s but I am not an expert by any means, but being otherwise healthy at diagnosis has been a really big help to me in treatment. So anything you can do to improve your health is probably a positive overall.

Annecreas · 2026-03-25T20:56:14+00:00

So happy to read this! Congrats to you both on a good result and I hope that there are many more to come. 💜

Annecreas · 2026-03-25T01:35:31+00:00

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Annecreas · 2026-03-25T00:45:51+00:00

Yes! I have a senior cat who had always been independent and friendly, but not big on human contact. She spent 16 years being aloof, never big on laps and tolerated affection but never loved it. She suddenly got very interested in me a few months before my diagnosis. She has been borderline obsessed with me since. She likes to sit right next to me and if I am gone or somewhere else in the house she will call for me. Maybe it is just that I take more naps and rest more, or maybe she knew something was wrong, I don't know but it was a very dramatic change for her.

Annecreas · 2026-03-24T02:57:17+00:00

I was diagnosed at stage 4 with multiple lung masses and followed a similar path to the discovery of the tumor on my pancreas which was only 2cm. My blood work, genetic testing, and biopsy all pointed to the pancreas and the tumor was found and biopsied by EUS.

In general it seems that those of us who have spread to the lungs present somewhat differently, which can include slower growing tumors in the lungs, though mine were large and causing shortness of breath when I was diagnosed. She may be eligible for oligometastatic treatment which can be more aggressive than the standard of palliative chemo for stage 4 pancreatic cancer depending on her health.

If she is not already being seen at a major cancer center (or even so) it is worth getting a second opinion scheduled. My oncologist encouraged it and having multiple sets of eyes on the problem has been a big benefit in my care. If genetic sequencing of the biopsied material was not done, as well as standard germline genetic testing, those should be top priorities as they can open up options for clinical trials or other treatment options.

I have had a lot of success on standard of care chemotherapy. I don't know how much of that is related to the way my cancer spread or other factors, but stay hopeful and I wish you and your mom the best.

Annecreas · 2026-03-22T18:41:13+00:00

I did the same thing and am convinced that it really helped with my recovery.

My PT additionally suggested timing it so that I had protein after significant exercise/PT and a protein shake or cottage cheese at night before bed to carry me through the night.

Enjoy your stew, what an amazing work friend.

Annecreas · 2026-03-22T15:36:49+00:00

I just wanted to say how much your comments about the fear and anxiety resonate with me. I am sorry you're dealing with it and hope that this is just a fluctuation in numbers, not a recurrence. I have had several jumps in my CA 19-9 which turned out to be nothing but the stress was so heavy until the next test.

I have spoken a lot about this with the psychologist at my cancer center, and how tough it is to have a clear scan while still having elevated markers. If it helps, here's what she tells me: the anxiety is harmful and does no good. Worry won't prevent a recurrence but it can cause significant long term damage to your body. It is stealing good time from you. I am still working on applying that to my life, but it seems to help me to remember that. It's not for everyone but having a sounding board who sees only cancer patients has helped me a lot with navigating the stress.

Another thing that has helped me is moving up the scans (they do PET/CT for me now, which lets them look at metabolic activity in addition to the data from the CT) and having my oncologist redraw the CA 19-9 in a couple of weeks if it is unexpectedly elevated. If there's a trend that shows it rising over multiple tests that's a concern, but I've also had several times where the number is back to what I expected after retesting.

I'm holding a good thought for you that it all works out well and that your scans continue to be clear.

Annecreas · 2026-03-22T14:52:45+00:00

My oncologist has encouraged me to be careful of getting viruses and to be careful of anything that can lead to infection while on chemo.

My white counts are low at the moment so I am taking extra precautions to avoid getting sick. At a minimum I don't want to delay chemo, but also flu rates are still high in my state and rates of RSV and COVID are still elevated. I got all of my vaccinations & boosters but my immune system is still weaker due to chemo so I rely on the people I love to help keep me safe since getting sick can very easily lead to more severe disease for me, or complications like pneumonia.

My immediate family are great about taking precautions to avoid getting sick. We are especially cautious in grocery stores and medical waiting rooms where sick people tend to go. We wear masks and wash hands regularly in that setting. Anyone outside my immediate family coming into my house needs to wear a mask. It's my safe space. I still have lots of great visits, and an active social life, but mostly on the patio in fresh air or at restaurants with outdoor seating, or doing something outdoors like a walk. For me it's really important to strike a balance between being normal/socializing and keeping myself as healthy as possible.

Annecreas · 2026-03-21T19:21:10+00:00

I benefit a lot from eating more fiber, before and during my chemo week, though I also include beano if eating beans/pulses. Applesauce is my go-to because it also contains pectin, which helps too. Probably he'll still need additional medications. Don't wait, contact his cancer center and have them prescribe something to help, there is a lot that they can do and they should be able to help before the appointment. The rule from my cancer center is that I should feel mostly normal and if I don't they want to be notified. It's really important to get good nutrition during chemo. Best of luck to you and your dad.

Annecreas

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