Pancreatic Cancer Group: Introduce yourself and connect with others

Happyjack,
I also feel like I was able to do many things I liked when I was young and healthy; although a broke college student for many years, however with income from sale of my home I have a bit to splurge now. I typically stay away from fat just because it’s so unhealthy. I did go on Creon for about 6-7 months after my surgery, but I no longer take it now. Protein shakes are a great resource following chemo sessions when I don’t feel like eating any heavy type foods. I buy my own vegan protein, almond milk, and Hersheys powder cocoa and 3 ice cubes and blend. I like to make a lot of my own food since I know it’s free of most additives and preservatives. I try to drink 1 shake per day but if I don’t , I’ll eat eggs and low sugar Chobani yogurt to try and get my share of protein for the day.
I also wish you much more quality time to spend with your sons and hopefully for a cure!

All the luck to you and your bucket list. I was able to do the things I wanted to do when I was younger and healthy. No bucket list for me other than spending time with my family.

As far as low-fat diet goes and Creon, I never thought that Creon was not a complete replacement therapy. Not sure if what you were saying is Creon is not complete replacement therapy and we then all need to have a low-fat diet or problems will happen. And then as we are still not processing fat for all the stuff we need that we may also need other supplements. Doctor Ahmad advised to drink 3 protein/nutrition shakes a day. I use the Boost Glucose control ones. I was asking about how I could heal faster and better and that was the doctors reply. I just maybe did not think that maybe I would always have trouble with digesting fat going forward.

Hope you have many more quality years.

Hello,
I wanted to check to see what everyone’s thoughts were on my mom. She was diagnosed in March 2024 with pancreatic cancer. Tumor about 2.5 cm at the head of the pancreas. The surgeon has informed us that it is resectable based on imaging. No metastatic disease seen on imaging, or micro cytology of abdominal washing.
Chemo was advised first. Then surgery, then more chemo.
Her tumor markers are “normal” under 30 now, tumor size unchanged. My question is: Is there a benefit to waiting and continuing more chemotherapy to 7/16/24? Then surgery 8/20/24-
Whipple. She continues to get weaker and loose weight.

To comment on the observation about doing neoadjuvent chemo even though the tumor was small, unlike other solid tumor types, pancreatic cancer is the one results in metastatic disease much sooner. In my 12 years as a survivor, I have seen many cases where the tumor was stage I, surgery was performed and restaged with metastatic disease within 2 years. Having a Whipple or distal pancreatectomy with splenectomy is half the equation.

Just this morning I was reading about a study done at Yale from 2014-2021 using Folfirinox in the neoadjuvant setting being beneficial. It was published in the Journal of the American Medical Association-Oncology.

So sorry to hear about your diagnosis. my surgical experience was similar to yours.

The first chem infusion was the worst. I’m not sure if they give limited supplements to assess how you react. I had my chemo on Friday and went back rxon Sunday to have it disconnected and to have a Neulasta (which raises your white blood cell counts installed on my arm (it is a shot that cannot be administered until 46 hours after chemo. I highly recommended mend the Neulasta to as it helps your immune system and prevents Neutropnia during the six months of chemo.

I worked throughout my chemo, with the exception of the day of and Monday after. It became more difficult as it went on as side effects are cumulative.

I had pretty difficult nausea which resulted in aversion to eating and pretty severe weight loss. It was actually call chemo driven anorexia. Had pre-treatment drugs when I arrived for chemo, which I believe is standard. As my post chemo nausea was pretty severe. My oncologist added Olanzpine (an anti psychotic med that helps to increase your appetite. It worked very well for me. I am going to continue on a separate post S I have to step away for a bit.

Good morning! Thank you for responding. Almost identical story, I just met with my medical oncologist yesterday at Memorial Sloan Kettering. I am staged at 2b, 1.5 cm of my 5.5 cm mass was cancerous with one lymph node involvement. The surgery was really a breeze to be honest. I had a distal pancreateomy/splenectomy and gallbladder removal on May 29. My surgeon was amazing, I had zero problems, was discharged within 3 days and back walking 3-5 miles per day within a week. My surgeon was convinced the tumor was non-cancerous. Oh well, yes, I would love to hear about your side effects on the chemo. For instance, my treatment will be Monday with disconnection of pump on Wednesdays (I believe my daughter, an RN, will be able to do this as opposed to going back to MSK), how many days after your treatment did you feel awful! Also, were you on any supplements and did you get accupuncture? Any insight would be much appreciated. I am so happy that you are doing well!!!

@spongybob ,

61 years old here... After 6 months (12 rounds) of Folfirinox, my Whipple and 22/22 nodes were declared clean, and I had no adjuvant therapy afterward. Pathology also showed a "grade 2" (medium/partial, on a scale from 1-3) of tumor treatment response to the Folfirinox. I kinda felt like that was six months of time wasted.

No evidence of disease on tests (2 Signatera, 1 Galleri) afterward, although CA19-9 started creeping up slowly. A follow-up MRI 4.5 months after Whipple revealed tumor was back (1.3 cm) at the place it was "successfully" removed. Long story short, it had also metastasized and put me in the Stage-4 camp in January 2023, ruling me out for surgery and radiation, sending me back to Camp Chemo.

Since I'd only had a grade-2 response to Folfirinox, and also had a germline ATM mutation, I started on Gemcitabine + Abraxane + Cisplatin (GAC). It was predicted to last me 6-8 months before drug resistance developed, blood counts tanked, or CIPN (chemotherapy-induced peripheral neuropathy) got bad enough to require stoppage.

16 months later, I was still feeling fine and responding mostly well to the GAC! Aside from some fatigue and nausea (never vomited) for 2-3 days after chemo, I always felt mostly normal and was back to work every Monday after each biweekly (Fridays) chemo. The complete hair loss was an obvious symptom, but acceptable. For me, the worst was the fatigue that developed over time between job stress and dropping hemoglobin (anemia). Those were managed successfully by job and life changes, caffeine, Ritalin, and a couple blood transfusions. There were minimal/increasing signs of drug resistance by about month 15. Neuropathy never got past grade 2 (moderate, but not painful or debilitating). My blood counts and kidney function are still adequate, but declining toward the lower end of normal. My biggest limitations were to vigorous exercise, but I can still do a brisk walk for 2-3 miles with no issue and do moderate work around the house. The timing was about right to stop and enter a clinical trial by May 2024.

So, in summary... Everyone is different -- different tumor response and different patient tolerance to chemo. I did not enjoy Folfirinox, but found the GAC much more tolerable and much more effective. I also know two patients (one now deceased) who had severe reactions, so I don't want to portray it as a walk in the park

The thing for you to do is search furiously to see if there is a good clinical trial you can get into before you have to resort to another "sentence" of traditional chemo. Starting a traditional chemo might disqualify you from some potentially good trials, but delaying the start of chemo for too long might allow your cancer to spread. Tough balancing act. If you do start first on a traditional chemo, keep a vigilant eye out for appropriate, realistic trials as your best future option. There are a lot of new drugs and therapies being developed that have much milder side effects than traditional chemo. Do everything you can to stay in shape as long as you can, because declining health can sometimes disqualify you from a trial. If needed, traditional chemo is just your bridge to a life-extending (-saving) trial.

Hang in there!

happyjack,

First, the medical profession is not out to get your money - they each have trained for tens of thousands of hours and have your best interests foremost.

Re estate planning - I found great solace in having a trust with living will completed (many attorneys will do this via facetime or zoom - depending on your state's laws), all bank accounts and investments centralized (in my case I chose Fidelity, but Schwab does a good job, as well) - I found Fidelity far and away more knowledgeable and professional than local banks and credit unions.

Hello happyjack,
Thank you for all of the information provided, though I don’t have much feedback I can provide from the medical end of things. I will be 67 next month and am in generally fair health (type 1 diabetic now, high bp, cardiac arrhythmia stemming from electrophysiology not structural heart problems, sleep apnea, glaucoma, high cholesterol, allergies, , asthma, and pancreatic cancer); with this list I wasn’t 100% sure I would come through my surgery (distal and spleen removal) in October 2022, but I did. I have a low fat diet normally and watch my carbs but I do love sugar! My was responsible for closing up my dad’s belongings, and my mother’s when they came to live us (different decades for each of them) and saw how arduous it can be when you are grieving the loss of someone and have to take care of things like clearing their stuff. My dad had a funeral plan so that made things easier, so I made a pint to obtain one for my mom. My very best friend (since high school) got gallbladder cancer just a few months before my pancreatic cancer and very unfortunately she passed. Most people want to be hopeful about their prognosis and that’s wonderful, but it’s also good to be prepared. My BFF was not prepared at all and it took 3 garage sales for her children, husband and sister to dispose of her stuff; so difficult! I let my children pick what they wanted from my stuff (not much!), and the rest went to extended family, friends, and goodwill and NeighborNextDoor. It just makes life easier for them. I have a plot paid for where my mom is,and ultimately sold my home in Huntington Beach; it wasn’t easy but I felt it was the right thing to do so that I could be sure my kids would get their money and buy a house etc. I. The near future (the proceeds have been invested). I’m on the Bolsa Chica Land Trust Board and have a small environmental consulting business that I work part-time at. I just signed up for an online AutoCad class so that I can future work for my business which I hope to pass in to my daughter who is studying same field. I have a very modest bucket list ( going to an expensive restaurant here, wanting to see DePeche Mode in concert or other 80’s band, taking g a ride with family on a Duffy boat in a local marina. My family has had a wonderful time sharing these moments. Side note: please persist with that MRI - that’s how my liver lesions were found. Well wishes for you sir and keep the faith!