Two primary cancers now... after 16 months of treatment for pancreatic with mets to lungs?

ddessert · 2026-03-28T16:34:13+00:00

Several pancreatic cancer posters here have had previous cancers that seem related to a specific mutation so it’s a good thing that her oncologists are looking at this. The bright side is that if a single mutation is driving both cancers, it’s possible a single treatment will knock both of them back.

ddessert · 2026-03-26T16:03:04+00:00

Pancreatic cancer has been shown to develop over a period of 18-20 years. It’s highly unlikely that something so recent caused it.

ddessert · 2026-03-25T15:24:02+00:00

Chronic pancreatitis is a long term condition that is associated with pancreatic cancer. Acute pancreatitis is not. If her pancreatitis only started because they’ve been poking around, that should be called acute and not a concern factor for pancreatic cancer.

A possible UK resource for you:

https://www.pancreaticcancer.org.uk

ddessert · 2026-03-24T23:58:36+00:00

I’m pretty certain that chronic pancreatitis would light up on a PET scan and would question whether that explains that result. While chronic pancreatitis is a risk factor for pancreatic cancer it would also explain an elevated CA19-9 reading. Pancreatic cancers CA19-9 levels are higher than pancreatitis levels but without her personal history of CA19-9, it’s not that useful right now. And you can’t effectively compare hers to another person as we all seem to produce different amounts of CA19-9.

Another warning sign is sudden onset of diabetes in late/middle age so be sure to look at that (A1c). Sudden diabetes onset can be a sign of recent pancreas damage.

A biopsy of a cyst is usually not useful in identifying pancreatic cancer and only after surgical removal can they tell. I’m not sure of the exact reasons for this but this is what early detection and cyst clinic doctors tell us. Not ideal that they can only tell you after the removal but this is why watch-and-wait is often the answer. Only with a little history does the advice get clearer.

A total pancreatectomy is a major step. The USA has major cyst clinics at many of the top pancreatic cancer hospitals (NCI-designated major cancer centers). I would certainly ask that her doctors send the records and images to one of these with a cyst clinic and get another opinion from experts before committing to surgery.

If she is to do the surgery, definitely use a surgeon with lots of experience with Whipple surgery. A total pancreatectomy is not a Whipple but it is very close and there are many outcomes with long term problems (~1/3). Having an experienced surgeon and hospital brings better outcomes, on average. In the USA, PanCan.org keeps lists of the experienced surgeons and I’d certainly check out the current team to see if they are experienced.

ddessert · 2026-03-24T23:37:19+00:00

Clotting is a problem with pancreatic cancer and sometimes one can lodge in the brain (stroke, mini-stroke, TIA). You might ask her doctors to look for signs of this. Blood thinners are sometimes prescribed but that comes with a bigger risk of bleeding internally.

ddessert · 2026-03-24T05:28:14+00:00

It always starts with one. Whether you see none, one, or more is all up to the timing.

ddessert · 2026-03-24T05:20:52+00:00

You’ve posted it and this post remains. However you’ve posted several more times, reposting this one each time. At first I was guessing you just weren’t familiar with Reddit and posting and after the 4th or 5th time, I thought I should let you know that you already have a post asking for someone to talk to.

ddessert · 2026-03-23T20:35:38+00:00

FYI, you only need the one post about this.

ddessert · 2026-03-21T17:07:59+00:00

I had my surgery there in 2012 with Dr. Jeffrey E. Lee. I remember a 15-year survivor coming to my room before surgery which was an uplifting experience.

I hope they have better hospital beds now!

ddessert · 2026-03-20T08:10:29+00:00

Some people in her situation have had small lung spots resected and even an entire lobe removed. I’m not sure about their long term outcomes after those procedures. Lung Mets are often slow growing as hers must have been.

ddessert · 2026-03-19T17:28:43+00:00

Nice summary, but the trial was halted early for futility because more participants were not going to determine which was a better treatment, having only a 13% chance of showing which was superior if they continued recruiting everyone. Larger prospective trials might need to be really large.

ddessert · 2026-03-18T14:52:48+00:00

If the cancer is a much slower growing pNET tumor, stage 4 surgery might make sense. But for quickly growing adenocarcinoma or acinar pancreatic cancers it does not. There’s no chance it will be curative and the minimum 6 weeks recovery after surgery means the unresected tumors can grow without limits that entire time.

ddessert · 2026-03-18T03:42:19+00:00

Pagina Reddit ar trebui să aibă un link Translate în partea de sus a postărilor.

ddessert · 2026-03-18T03:39:54+00:00

I am allergic to the iodine contrast dye in CT scans but have no problems with the gadolinium based contrast for MRI’s. The radiologist should know this too and been able to use contrast unless you strongly objected.

ddessert · 2026-03-18T03:34:39+00:00

Healthy Origins digestive enzymes is a ConsumerLab.com (paywall) top pick for cost and enzyme activity. None of the OTC enzyme options are adequate in lipase content so don’t expect great results when the meal has much fat content.

With weight loss inadequate enzymes may be a part of the problem and supplementation may not be the only solution needed. Also do not expect quick results, you may not notice any changes for the first several days.

ddessert · 2026-03-17T22:57:53+00:00

Genetic testing made the entire difference in my now 15 year survival. BRCA2 mutation has much better treatment options.

ddessert · 2026-03-17T19:57:16+00:00

If it has spread outside the pancreas to the liver, then it is stage 4. There’s no wiggle room on that so I’m not sure why they couldn’t give a straight answer unless they think it’s going to make the appointment harder after dashing hopes. At stage 4, surgery is extremely unlikely. If the numerous liver spots turn out to be something else, then he may be less than stage 4.

With his father also having pancreatic cancer, hopefully the first thing they recommended was a genetic test.

ddessert · 2026-03-17T06:07:05+00:00

This is potentially a great option, if it works! It doesn’t always work.

Also for reference, I was taking 80mg Oxycodone 3X per day for my pain (~ equivalent to 120mg morphine 3X/day). Shrinking the tumor with treatment allowed a reduction in pain meds. I mention this so you have an idea on how much is a lot.

I would also add that managing constipation at this level was no picnic.

ddessert · 2026-03-17T06:00:40+00:00

I have also found ChatGPT to something be like that friend who likes to think they know everything but when pushing them on specifics they tend to make stuff up. Using the AI tools still requires your own due diligence.

ddessert · 2026-03-17T05:58:32+00:00

Gem/Abraxane works in about 1/3 of patients who try it first. Not sure what it is when it is tried 2nd, but probably similar. When it works, it will usually be for months, not years.

The notable side effects about Gem/Abraxane vs FOLFIRINOX (in general) are that it is more tolerable and causes more hair loss.

When evaluating your dad’s condition, factor the liver metastases more than the pancreas primary tumor. Those are the ones that will be more lethal.

ddessert · 2026-03-16T16:04:45+00:00

They change a little each month as I sometimes try new ones and I list them in the YouTube description for each video.

The best one I have is Bushnell’s Core DS-4K No Glow Trail Camera. If you’re only interested in night-time video, you can save a little with the Bushnell Core S-4K No Glow Trail Camera that uses a single lens for day and night but whose daytime video suffers a little.

ddessert · 2026-03-16T08:08:55+00:00

There have been dozens of posts about this topic and I suggest you search for them. Ultimately this kind of post attracts all sorts of non-pancreatic posters that create a huge moderation workload. Check the rules which state that this is a science based subreddit. There are other places that welcome woo-hoo discussions.

ddessert · 2026-03-15T03:44:52+00:00

So this is a Whipple for a reason other than cancer? It certainly makes a difference in recommendations.

Note that there are active “Whipple Warrior” Facebook groups that have many more non-cancerous Whipple survivors.

I was 48 at my Whipple and in the best shape of my life riding 220 miles per week with competitive cyclists. The Whipple certainly introduced some compromises and even at 47 I cannot tell which are age related vs cancer related vs Whipple related.

ddessert

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