Spasms after Whipple

@tomrennie I should’ve been more specific with my “layman’s advice” that people diagnosed with stage 1, RO (deemed operable), should heavily consider the odds of chemo shrinking a tumor, when it’s not necessary to shrink it, and the high risk of tumor growth.

I cannot speak for advanced nor later stages.

Sadly, stats show that many patients are told by docs across the country that their tumor is inoperable, when in fact they are RO statue. Validity to gain 2nd opinion by more-experienced hospital/particularly in selection of surgeon.

Patients being told that they need to shrink, say a 1.1 cm mass at head, that’s not involved with mesenteric vein, no obvious signs of lymph node involvement, no metastatic involvement…PLEASE get a 2nd if not 3rd opinion. Find a qualified surgeon at a high-volume hospital.

At best, the frequently quoted “33% of tumors during chemo stay the same, 33% grow, while 33% shrink is generalized across the board with chemo tx for diff cancers. What it means to me (since I don’t have BRCA2- mutation where evidence shows cisplatin could be effective for ADPC) that 33/33/33 odds mean, at least 66% should never choose (accept) risking months of delay and potentially becoming inoperable.

I cannot find any evidence that 33% of ADPC tumors shrink due to neoadjuvant chemotherapy.

I would never want to discourage anyone in later stages to consider all options and follow the course that they are most comfortable with when comparing all factors. What I’m referencing is stage 1 only.

A 1. 8 cm mass, T1c when localized, does not need any extra time to grow. It’s doing that on its own quick enough. Yikes. Many patients have regretted their decision to delay RO surgery for months in order to undergo neoadjuvant chemo and/or radiation. Patients considered resectable prior chemo, going back for another scan following months of chemo: unresectable. ADPC tumors, taking on average 1 year to form a cancerous cell, on average between 8 - 11.3 years until a T1 becomes between a 1 and 2 cm mass, often caught incidentally as symptoms for most people at this size/type do not show up yet. This “small” size typically doubles within weeks or months, and way too many delayed surgeries imo in order to follow the standard chemo protocol that is in dire need of a reality-check. I remain baffled at these top experts continuing to advise the patient w/ Stage 1 to delay the surgery whatsoever, unless of course other health complications delay it.

I remind readers that like most, I’m basing my assessment from my own experience, weeks of scouring PubMed studies which will turn into months, hopefully years, and from my father’s experience.

They are holding quite a bit back as far as advancements. When I say they, it’s hard to determine, but it’s not a call that can be made by individual surgeons or hospitals unless they have secured or private funding so they can conduct their own studies:)

So many new inventions on the horizon in trials but great hope for participants.

Major advances in medical technologies are decades behind compared to other industries. Genetic testing availability should’ve happened 30 years ago. Using CA 19–9
as the only blood marker used in most doctors’ offices today during blood work to rule out pancreatic cancer? I test negative for CA 19–9 and fall within the est 10% who lack the molecule in bloodline.

One thing’s a certainty: not many docs (over 50% is a generous low-ball estimate) even consider dietary influences and outcomes with various cancers. Always appreciate a oncologist team that has a knowledgeable dietitian! Pancreas is 100% influenced by dietary choices, pre Whipple and certainly post-Whipple.

Some docs inform their patients that after surgery, they “can eat whatever” they want… just take the enzymes. Not the best advice as it absolutely matters what we choose to eat post-surgery, particularly with how the pancreas reacts following Whipple.

Dietary choices, particularly animal fats (20% RDA daily intake) is uninformed if this is a recommended for Stage 1 post-Whipple. “Eating whatever you want” ignores how hard it is a on a healthy pancreas, much less after PC surgery.

Am I judging people in stage 4!who want to eat whatever they want and take enzymes? No! Everyone, regardless of stage, has the right to make their own decisions.

@jessied what is ERCP?

@chuff333 what is RO and ADPC?

@rashida it is an endoscopic procedure where a doctor uses a scope with a camera to go through your mouth/esophagus all the way down to your gut to see what is happening on the inside of your gastric system.

@jessied @rashida The ERCP also can take xrays. The pictures and xrays were amazing to look at.

@rashida
RO means deemed candidate for surgery.

AI’s definition: RO in the context of surgical candidates typically refers to R0 resection, which means achieving a negative margin during surgery, indicating that no cancerous cells are left at the edges of the removed tissue.

When a surgeon does not believe they can be successful in removing the tumor successfully (clean margins) they will not write or state: RO.

Meant to add ADPC was my goof in order: thank you for asking: refers to adenocarcinoma of the pancreas, specifically pancreatic ductal adenocarcinoma (PDAC), which is the most common type of pancreatic cancer, accounting for about 85-90% of cases.

@grandmahiker thank you for clarifying and sorry for getting it wrong about something. Another poster wrote regarding typically in the PM.

I am happy to learn that chemo was effective for you. Did you have genetic or biomarker testing to determine if precision treatment could be utilized? If not, if I may ask, what combination of chemotherapy did you undergo? Thank you so much for responding and your kind words.

Abraxane and gemcetibene, or however you spell them. We didnt look at any markers that i know of. I assume they worked for me because, with the Whipple, I am cancer free to this point. my CA19-9 ( is that what you meant by a marker) dropped right away and stayed down.
Oddly, to me, my liver enxymes have yet to all be within normal range. And i do appear to have a liver issue that may or may not be related to the cancer or the treatment. The small ends of the duct system are partially blocked and sometimes cause issues.

@grandmahiker

Thanks for sharing about which chemo tx.

Genetic testing is helpful for family members to know if there’s a gene mutation to try to identify a targeted chemotherapy to use. Like with people having a BRCA2 mutation, cisplatin has been shown to be effective in a recent Mayo Clinic study.
I am afraid of chemotherapy personally as I am underweight and currently having a hard time keeping any muscle (although on high protein/high calories/hand weights/whey plus everything healthy to add weight shakes prior Whipple. I also have mild neuropathy in my hands, so I personally would need to avoid oxyplatin from studies Showing a connection. Thanks again for responding. I wish you the best.