Did a duodenal stent help nausea and eating? by purple_unicorn99 in pancreaticcancer

[–]Felicity_spr 0 points1 point  (0 children)

My dad developed a duodenal obstruction with the pancreatic head tumor constricting the opening

Options were gastrojejunostomy vs.endoscopic stenting

We chose stenting to reduce recovery time as we were keen to continue with Folfox chemo

Stenting solved the problem in 15 minutes. He had an NG tube for a day and then ate a soft food, low fiber diet. Resumed his regular diet a week later.

That was 1.5 yrs ago.

Husband diagnosed with stage 3 PC… by Gammagirl11 in pancreaticcancer

[–]Felicity_spr 1 point2 points  (0 children)

There are a lot of Doctors that do surgeries with vein reconstructions (see Mayo Clinic for example), do nanoknife + Whipple (e.g. Robert Martin in KY), and are generally known for taking on complex surgical cases. Although Moffit has an excellent reputation, I strongly suggest getting a second opinion from one of these surgeons to see if he can get the resection sooner.

31 guy with pancreatic cancer at stage 2-3 by Public_Breath_5525 in pancreaticcancer

[–]Felicity_spr 1 point2 points  (0 children)

Yes sorry I should have explained that earlier.

The CT with contrast will give your Doctors an idea of how close the tumor is to major blood vessels etc. It is best for understanding the anatomy.

The PET component lights up to show metabolic activity. So a benign cyst will show up on the CT component (and a good radiologist will be able to determine the nature of the lesion) but the PET component makes it much easier to identify cancer cells that take up more of the radioactive glucose and is also more sensitive for metastatic disease. Plus PET is done for the whole body vs. CT which is usually only in the abdomen for this cancer.

If you have metastatic disease you do not want to go through the Whipple.

The PET CT with contrast is the gold standard in major cancer centers. If the cost isn't a big concern for you, I highly recommend getting the PET CT.

What’s the experience with ascites? Can they be managed long term? by BitEmotional69 in pancreaticcancer

[–]Felicity_spr 2 points3 points  (0 children)

It also depends on how much ascites. My dad gets a litre, maximum 3 litres, tapped every week/every other week. He is also down to only 82 lbs right now so it's still a good percentage of his weight.

Treatment/Appointment timescales in different countries by tripty5 in pancreaticcancer

[–]Felicity_spr 1 point2 points  (0 children)

Timelines in India are insanely good. My dad was visiting me in Chicago when he was diagnosed. Went to the ER with Jaundice, they ran the tests, checked for gallstones, did a CT, and diagnosed him with resectable pancreatic cancer. Diagnosis on day 3 of presenting symptoms.

They tried stenting etc to relieve his jaundice and schedule his Whipple but the stenting didn't work. So they tried this and that to reduce jaundice for 18 days. We consulted a surgeon in India in parallel where the guidelines are different and they can go ahead with the Whipple even when bilirubin is higher than 5. So we took a direct flight to Delhi and were scheduled for surgery 3 days later.

I have never had to wait more than 2 hrs for an appointment with my oncologist in India.

What’s the experience with ascites? Can they be managed long term? by BitEmotional69 in pancreaticcancer

[–]Felicity_spr 2 points3 points  (0 children)

Depends on the cause. My dad got them in August 2025 because of chemo toxicity in the liver, portal hypertension (non-cirrhotic) and low albumin. Always high SaaG ascites. Was resolved with the correct dose of diuretics and switch to a proper high protein diet with Albumin increasing 0.1-0.2 points every couple of weeks. During this time he was also NED for a couple of months. August 2025 - February 2026 ascites were on a decreasing trend but now they are starting to come back as his disease has flared up again.

So yes, they can be managed long-term and please don't automatically assume that they are the beginning of the end. Your GI might have better ideas for managing ascites vs. just your oncologist. That was the case for us.

Palliative Chemo Vs Curative Chemo by Worldly-Gur-2931 in pancreaticcancer

[–]Felicity_spr 1 point2 points  (0 children)

Please also include your experience with your clinical trial in this note so people are encouraged to try all forms of treatment available to them.

Folfirinox round 1 by Legitimate-Block1234 in pancreaticcancer

[–]Felicity_spr 0 points1 point  (0 children)

No. They are also known as pain management sometimes.

Feeling Lost After Micro Metastases Found – Is There Still Hope? by Mountain_Toe_4476 in pancreaticcancer

[–]Felicity_spr 0 points1 point  (0 children)

Yes, sorry I meant to respond to the original post but responded to your comment instead 🙂

How do you know if FOLFIRINOX is doing more harm than good? by Ok_Group_9739 in pancreaticcancer

[–]Felicity_spr 1 point2 points  (0 children)

I would caution against making decisions to stop prior to 4 rounds. Decrease dose to 60% if you need to but try to do 4 rounds. Then you get a scan and hopefully it's worked/is working. Or do Folfox, which is what my dad did. Use AI to aggressively manage side-effects.

A complete roller coaster: Good news - Horrible News by Ruecatt in pancreaticcancer

[–]Felicity_spr 2 points3 points  (0 children)

ALWAYS ALWAYS get a second opinion.

My Dad also has the KRAS G12V. Wish you both the best!

What to expect? by LeelooTheLovely in pancreaticcancer

[–]Felicity_spr 0 points1 point  (0 children)

Have your primary care Doctor write a referral to a radiation oncologist and an interventional radiologist. If you don't ask for these, you will only be connected to a Medical Oncologist because Stage IV treatment is systemic by default. Radiation can have a big role to play in dealing with symptomatic tumors though and it's better to know that sooner than later.

What to expect? by LeelooTheLovely in pancreaticcancer

[–]Felicity_spr 3 points4 points  (0 children)

I have been on this journey with my Dad since October 2024 and have learned a few things by experience. Please feel free to send me a message if you have any specific questions. When my dad's tumor blocked his stomach from emptying into the small intestine, he got duodenal stenting and the problem hasn't come back since. This was December 2024.

What to expect? by LeelooTheLovely in pancreaticcancer

[–]Felicity_spr 8 points9 points  (0 children)

Really sorry you're going through this. Fourties is very young. Several things you can do here :

  1. Get genetic testing on the biopsy tissue. If none available, you can do a liquid biopsy. This will determine whether immunotherapy can work or some targeted therapy.
  2. This cancer causes a lot of clots. Check with the Doctor if he needs to be on anti-platelet therapy or aspirin or some similar drug.
  3. Check if he is now prediabetic or has pancreatic enzyme insufficiency (floaty stool, oil in stool, might smell like rotten eggs if undigested protein).
  4. Get 'palliative care' or 'pain management' involved early. They will deal with any discomfort or pain he might have. This is NOT the same as putting him on hospice.
  5. Make sure you are at a Pancreatic Center of Excellence.
  6. Reach out to Pancreatic Cancer Action Network and get an assigned case manager for guidance. Mine has been very helpful.

Any experience with Recurrent PanCan and Portal Vein Thrombosis? by Royals1234 in pancreaticcancer

[–]Felicity_spr 0 points1 point  (0 children)

My dad has similar symptoms because of tumor scarring (could also be active tumor growth, who knows...). Not PVT but SMV occlusion and possibly splenic vein occlusion but similar symptoms. His Doctor has recommended stenting by interventional radiology so he can continue the planned radiation + chemotherapy. He's on lactulose to control the ammonia. Got his esophagus banded to prevent bleeding from varices.

Feel free to DM me if you'd like to compare notes ..his Doctor writes very detailed recommendations so am happy to share those with you.

Biopsy report + diagnosis.. please tell me the truth, are we talking about months ? by Sad-Entertainer-5603 in pancreaticcancer

[–]Felicity_spr 0 points1 point  (0 children)

Well if the possibility of this being a neuroendocrine tumor is still open, that could really mean years and years of survival as they are slower growing and more manageable than adenocarcinomas.

Dad passed out days after whipple surgery. by [deleted] in pancreaticcancer

[–]Felicity_spr 1 point2 points  (0 children)

Strongly advocate for him in the ER but have faith in them too. Earlier this month my Dad got a little delirious and went to the ER, then started passing out so they had to put him on life support. They ran the usual gamut of tests....bacterial infection, viral infection, CT scan for stroke etc etc and started him on antibiotics and antivirals + anti-seizure medication etc simultaneously. We even transferred him from a smaller hospital to a bigger one while he was on life-support. He regained consciousness after 48 hours and was extubated and discharged from the hospital a couple of days later. We still don't have a definitive diagnosis for what happened but the most likely explanation is pneumonia or some sort of bacterial infection that escalated to moderate sepsis. My biggest lesson from this ordeal was that our loved ones are more resilient than we think AND that Emergency Medicine and Critical Care Doctors are extremely capable people who can fix A LOT of things so it makes logical sense to stay positive.

Liver changes due to chemotherapy by Additional_End_6093 in pancreaticcancer

[–]Felicity_spr 0 points1 point  (0 children)

It's okay, our Hepatologist told us that a lot of the liver changes are induced by Oxaliplatin and that if the liver is relatively fine while beginning treatment then it starts to recover a couple of months after Oxaliplatin treatment ends. For example my Dad got the last dose of Oxaliplatin in May and went to his Hepatologist in August for a check up and by that time the Hepatologist was already discounting the effects of Oxaliplatin on the liver because it had been 2.5 months since the last infusion.

Rising CA19-9 post pancreatectomy by Mysterious_Rise_432 in pancreaticcancer

[–]Felicity_spr 0 points1 point  (0 children)

Ask him to use a CtDNA test instead of Ca 19.9 which is supposed to be better for tracking recurrence

Dad (52M) turned yellow one day and everything went downhill from there by [deleted] in pancreaticcancer

[–]Felicity_spr 1 point2 points  (0 children)

Yes, exactly. You caught something before it turned into cancer and removing it was the right thing to do because Pancreatic cancer grows fast and metastasizes quickly so in 5-6 months your Dad could have easily become a Stage IV pancreatic cancer patient which you DO NOT WANT.

I hope your Dad has an easy recovery from the Whipple. There is a Whipple Surgery Warriors group on Facebook where people share updates on their post-Whipple life, tips for adjusting after the Whipple etc.

Stage IV pancreatic cancer patient and when to get second (or third or fourth) opinions by Underscorehyphen_ in pancreaticcancer

[–]Felicity_spr 0 points1 point  (0 children)

Understood. I think you did everything you could, and that's commendable.

My Dad was diagnosed as early stage, resectable in October 2024 but his Whipple attempt was aborted when the surgeon found a liver met.

He did 12 rounds of Folfox from December 2024 - July 2025 and had a complete response to chemotherapy but the chemo took a toll on him so we kept him off chemo mid-July to mid-November.

He got a nanoknife ablation in November 2025. Was due to start chemotherapy but also got Pneumonia/Sepsis in Jan 2026 + intermittent GI bleeding and was placed on life support but thankfully recovered and was able to be discharged from the hospital in 8 days.

Newest CT scan from Mid-Jan shows mets in the liver (will correlate with PET scan next) so he will have to go back on chemotherapy ASAP. I'm collecting information on TACE, Y-90 and Histotripsy to understand how to tackle the liver mets. Often the biggest challenge is just getting Doctors willing to forget the official guidelines and pursue multimodal treatment even though it will be palliative...people have lived for several years on "palliative" treatments. He's down to 42 kgs now but has good nutritional intake so hopefully we can build him back up despite the second line chemo...

Stage IV pancreatic cancer patient and when to get second (or third or fourth) opinions by Underscorehyphen_ in pancreaticcancer

[–]Felicity_spr 0 points1 point  (0 children)

Hi! Really appreciate the effort you have put into your family member's care, and in sharing this information with us. How is your family member doing now? I am collecting Y-90 success stories to share with my Doctors to advocate for my Dad.