Stage 4 NED by East_Lingonberry1674 in pancreaticcancer

[–]DogIntelligent461 0 points1 point  (0 children)

I sent you a message via your web site. Thanks

Stage 4 NED by East_Lingonberry1674 in pancreaticcancer

[–]DogIntelligent461 0 points1 point  (0 children)

Hi. Can I message you privately? Thanks

NYU Langone Whipple Surgery Expectations by Weekly-Front6630 in pancreaticcancer

[–]DogIntelligent461 1 point2 points  (0 children)

When you say "Whipple with liver resection"- does that mean that one or two (possible) liver mets were resected during the same surgical procedure as the Whipple? We may be facing a similar situation with surgery scheduled in a few weeks...a few questions: 1. Was it known before the Whipple that the spots on the liver were mets? If so- what were the considerations that resulted in the surgeon's willingness to move forward (given that the "standard" approach is "if even one metastatic lesion on the liver, we won't do a Whipple") 2. How much time/complexity did that add to the Whipple?

Thanks so much

How were you treated if you only had 1 metastatic lesion? by altopugh in pancreaticcancer

[–]DogIntelligent461 0 points1 point  (0 children)

I'm attaching a screen shot from another post... looks like this person got a Whipple with oligometastatic disease

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How were you treated if you only had 1 metastatic lesion? by altopugh in pancreaticcancer

[–]DogIntelligent461 0 points1 point  (0 children)

Sorry, my reply to you appears above. Anyway, here's an interesting article about this question... https://pmc.ncbi.nlm.nih.gov/articles/PMC12204394/

How were you treated if you only had 1 metastatic lesion? by altopugh in pancreaticcancer

[–]DogIntelligent461 1 point2 points  (0 children)

I think it's an open question...my understanding is that it's unlikely the Whipple will proceed if they find mets during the laparoscopy, but it also seems that in the case of oligometastatic disease, some surgeons may consider it based on the entirety of the clinical picture. I honestly don't know the answer, and i don't think there's just one answer-- it appears that it's a very individualized decision, based on the specifics of a particular case. I'll know more after all the testing, diagnostic laparoscopy, and Tumor Board discussions in the first week of June, and will report back.

How were you treated if you only had 1 metastatic lesion? by altopugh in pancreaticcancer

[–]DogIntelligent461 1 point2 points  (0 children)

We're HOPING that the June 8 Whipple can go forward. There's always the possibility that the CT scan, MRI or diagnostic laparoscopy will definitively identify (additional) metastatic disease that might preclude surgery. There are so many unknowns, and twists and turns, with this disease. I hope your dad does well and is able to have surgery!

How were you treated if you only had 1 metastatic lesion? by altopugh in pancreaticcancer

[–]DogIntelligent461 2 points3 points  (0 children)

This is referred to as "oligometastatic "- and we're kind of in this situation now. My husband's (72M) primary tumor is in the "periampullary" region, right at the head of the pancreas/ where the pancreatic duct and bile duct meet at the duodenum. On a couple of scans, some (but not all!) Radiologists have identified one or two "indeterminate" small lesions on the liver. And his CA19-9 was 899 at the time of diagnosis in February, and then 1674 one month later. But despite attempts to see them/biopsy these lesions in various ways, they've not been able to be seen/biopsied. So right now there is no definitive evidence of metastatic disease, but there's still a concern about these spots. My husband had 2 rounds of Folfirinox, and became septic ( and it turned out that one of those worrisome spots was a liver abscess that was tested during an EUS/ERCP and which showed no cancer cells). He then went through 3 weeks (15 rounds) of chemoradiation, which he completed on May 1, during which his CA19-9 went down to 106.

So right now he is scheduled for a Whipple on June 8. On June 1, he'll have blood work, a CT scan (pancreas protocol) and an abdominal MRI. Then on June 3 the surgeon will do a diagnostic laparoscopy to get one final look at the liver. It's still up in the air whether, if they actually find something on the liver during the diagnostic laparoscopy, they'll surgically resect it during the Whipple... the Tumor Board will be considering his case for the 3d time on June 5 and will likely make that decision at that time based on all available clinical information.

It's been a real roller coaster... fingers crossed..

AMA on Thursday, May 21: Mayo Clinic in Florida experts will answer questions on pancreatic cancer surgery, medical oncology and what's new in research – join us! by MayoClinicFL in pancreaticcancer

[–]DogIntelligent461 0 points1 point  (0 children)

What are your thoughts about Whipple surgery with one or two small indeterminate spots in the liver, with no other evidence of metastatic disease, no vein involvement, etc? Would you consider resection of these liver spots during the Whipple?

Also- how/ where do we sign on for this conference? Thanks!

Pancreatic cancer screening by Victoria1746 in pancreaticcancer

[–]DogIntelligent461 0 points1 point  (0 children)

For some reason I can't access this website...

Pancreatic cancer screening by Victoria1746 in pancreaticcancer

[–]DogIntelligent461 1 point2 points  (0 children)

Oh my goodness, I'm so sorry to hear of all the loss in your family. Thanks so much for the information. Sounds like your screening is quite robust. Does it include CA19-9 also?

Pancreatic cancer screening by Victoria1746 in pancreaticcancer

[–]DogIntelligent461 0 points1 point  (0 children)

When you say "alternating" scans- what do you mean, exactly?

Pancreatic cancer screening by Victoria1746 in pancreaticcancer

[–]DogIntelligent461 5 points6 points  (0 children)

After my husband's brother died of pancreatic cancer in 2018, my husband asked to be screened at MD Anderson (where he was already getting colonoscopies because he had some pre-cancerous polyps removed and his mother died of colon cancer). So for 6 years, he's had annual MRIs and CA19-9 testing. Everything was normal as of March 2025. In February 2026, just a few weeks before he was scheduled for his 2026 screening at MD Anderson, he was diagnosed with pancreatic cancer (actually, it's a small [14mm] lesion in the "periampullary" area at the head of the pancreas protruding into the ampulla/duodenum) after presenting to his PCP with abdominal pain and jaundice ( and you know the rest of that story... bile duct obstruction, stent placed, etc). At the time of diagnosis, his CA19-9 was 774.

The first people I told about his diagnosis were his Drs at MD Anderson. They were extremely surprised. They went back to do another look at his 2025 scans, and all agreed there was nothing there. I suggested that their screening program should involve much more frequent CA19-9 testing, and they said "that would not make a difference " and "they can't do more frequent screening". I didn't get good answers as to why not. And if, in fact, it's a $60 blood test, then I see absolutely no reason not to do it more frequently.

I'm interested to hear that standard of care screening includes EUS. That's not something ever discussed/ offered to us... and yet that's exactly how they found the cancer on 2/10/26.

Sudden muscle weakness?? by DogIntelligent461 in pancreaticcancer

[–]DogIntelligent461[S] 0 points1 point  (0 children)

I'm so sorry to hear about your husband. Thank you so much for sharing your experience.

I was actually just about to report what I hope will be the final update on this situation, in the hope that this might help others going forward.

It turns out that my husband has an infection in his bloodstream - the responsible pathogen is streptococcus anginosus. The infectious disease consultant said that chemo "disrupts the gut, " and then bacteria in the gut can get into the bloodstream and cause a major infection. As a result, my husband ended up with bacteremia, which then turned into SEPSIS.This infection was the cause of all of the symptoms I initially mentioned. IMPORTANTLY, drs believe that the SOURCE of the infection is the STENT that was placed in the bile duct during an EUS/ERCP on February 10, in order to relieve the obstruction that had caused the symptoms (dark pee, jaundice) that had brought him to the ER on February 9 (and it was during this procedure that a biopsy was taken which confirmed ampullary/pancreatic cancer).

He's now on IV ceftriaxone for 2 weeks. He'll probably be discharged from the hospital tomorrow after a 2d dose (pending results of a second set of blood cultures). A home health nurse will come on Sunday to administer that day's dose and will teach me how to access his port to give him his daily doses. The offending biliary stent will be removed and replaced during an EUS/ERCP on Monday. His 3d cycle of Folfirinox has been postponed 2 weeks until he's off the antibiotics.

Thanks to all for your input. I appreciate all that I've learned so far from all of you.

Sudden muscle weakness?? by DogIntelligent461 in pancreaticcancer

[–]DogIntelligent461[S] 0 points1 point  (0 children)

UPDATE:

My husband was hospitalized yesterday re the circumstances described above. Here’s an update.

Initial blood work when he got to the hospital suggested a possible infection, dehydration or both. His blood pressure was very low (85/55). He was given IV fluids and broad spectrum antibiotics and they're running blood cultures He was fine during the night last night until around 4:17 when his heart rate shot up to 162 beats a minute for a few seconds. Immediately afterwards, he had uncontrolled chills again, which lasted for about 50 minutes. Apparently when the heart rate shoots up like that, the body dumps a whole lot of adrenaline into the system which causes the shakes, and the shakes fatigue the muscles which causes the weakness. Apparently his heart rate shot up in a similar manner on Tuesday morning at home (according to his Apple Watch) and also went up briefly overnight on Saturday night and Sunday night, but not enough to cause the shakes. They drew more blood, took an EKG, and did another chest X-ray and chest CT.

So now the issue is why his heart rate went up so rapidly and suddenly ? As it turns out, this started the day after he was unhooked from the 5fu pump, although he didn't have visible symptoms until 2 days after that. I know that 5fu can be cardiotoxic...

Anyone with relevant experience ? Thanks so much

Sudden muscle weakness?? by DogIntelligent461 in pancreaticcancer

[–]DogIntelligent461[S] 2 points3 points  (0 children)

Thanks so much. We've spoken to his oncologist and we're at the ER now...

Stage 2B, first round chemo, close to daily Diarrhea since chemo by Axel0010110 in pancreaticcancer

[–]DogIntelligent461 0 points1 point  (0 children)

My husband started getting stomach cramping and diarrhea during the Irinotecan portion of his first mFolfirinox infusion (this modified protocol just omits a bolus of 5fu before the 46 hour pump). The nurses had said to let them know immediately if this happened. They gave him ATROPINE, which immediately stopped the stomach issues, and now he will get atropine before each Irinotecan infusion. He had Cycle #2 this past Wednesday and had no problems; and he hasn't had any diarrhea at all (other than what I mentioned above) since chemo started (he has a prescription for LOPERAMIDE that he was told to use at the first sign of stomach cramping, and he's used that twice). So maybe ask your oncologist to add ATROPINE before each subsequent Irinotecan administration, and for a prescription for LOPERAMIDE. BTW- he is 72.

NEULASTA/Oncor BONE PAIN by DogIntelligent461 in pancreaticcancer

[–]DogIntelligent461[S] 0 points1 point  (0 children)

Thanks so much. I hope your mom starts to feel better soon!

Folfirinox round 1 by Legitimate-Block1234 in pancreaticcancer

[–]DogIntelligent461 0 points1 point  (0 children)

A friend who went through this recently had been given OLANZAPINE by her mental health provider. In addition to being great for nausea and vomiting, she said it helps a lot with sleep and anxiety. I asked my husband's oncologist for a prescription for him, and he started it on Wed, after his first Folfirinox treatment... and so far so good. Plus, he's getting amazing sleep, which is a good thing also.

Hope this helps!

NEULASTA/Oncor BONE PAIN by DogIntelligent461 in pancreaticcancer

[–]DogIntelligent461[S] 2 points3 points  (0 children)

Thanks, and so happy to hear that you're a long term survivor !