New Pancreatic Cancer Discussion Board

Orangedrop said:

Pancreatic cancer Stage 4

Hello to everyone on this pancreatic cancer board.  My name is Lesley, female, widow, now age 70, and I was diagnosed last June 7, 2019 age 69 with Stage 4, adenocarcinoma, pancreatic cancer.  They found one small tumor in the tail of my Pancreas and many throughout  my liver.  I was in shock.  My daughter had dropped me off at the ER and I told her not to wait; I would call her thinking it was just maybe my gallbladder or something not too serious making me nauseous for so many days.  Never thought of cancer.  Well I was admitted and then had to call my daughter not just to pick me up but to tell her the devastating news.  I am a retired nurse and had heard about this not being easy to survive.  At first, I felt so ill I didn't want to do chemo.  My 4 grown children didn't want me to give up.  I had a Bard port implanted for chemo but thinking I could use that if I had to go in Hospice for comfort medications that was my alternate thinking. I started onto my first chemo in the end of July 2019, it was the Folfirinox regimen.  This stuff, which included the take home pump, did nothing for me but make me ill and I ended up in the hospital with neutopenia and cdiff and my tumors were not phased and actually increased in size.  In Dec 2019 I was started on Gemzar and Abaxene every 2 weeks.  This makes me get high fever and about 5 days of yuck after the chemo.  As of my last scan, April 28th 2020 every tumor was gone!  Or as they say, if you have stage 4 you always need chemo to keep them from coming back. My tumor markers are down in normal range and treatment right now every 3 weeks instead of every 2.  My doctor is watching me carefully with the tumor markers.  I am also giving All Glory to God.  Prayer is a most important part of your well being and the more that pray for you the better, Prayer Warriors!  I am praying for this miracle because I know full well it is a miracle to survive stage 4 of this cancer.  I will share with you whatever I can.  Alex Trebek was diagnosed 3 months before me so I always look for how he is doing as my beacon.  I pray for everyone fighting cancer.  I do not carry the gene but my aunt died from this.  All my past relatives are in England, as my mom and dad came here after WWII.  No one remembered about our Aunt Dorothy or what type of cancer she had; and it was not impressed upon us about her cancer. How important family history is.  This can run in families and I don't believe it is necessarily from one particular gene.  This only proves how different each case is and our unique chemistry. One drug works for one person but not the other.  Hopefully, they will come up with the cure for this very soon.  I hope to hear some hopeful outcomes from anyone fighting Stage 4 Pancratic cancer.

 

At the time of diagnosis did you have a tumor marker test Ron was it elevated I have a friend who had this recently drawn and his was 458 so I was just wondering if yours was elevated at the time of diagnosis as well

Hello, I am a new member here. I was diagnosed with PDAC w/ liver metastasis. 51 yr old female with no medical history or underlying conditions. My journery began early 2021 with a lot of not so fun datails to list, although I am always willing to share. I have just recently completed my 2nd round of chemo - 46 hour infusion/5fu.  I haven't seen much recent activity in the discussion boards lately but reading through everyone's experiences and processes makes me realize that no matter the similarity of diagnosis, the journey and symptoms are individual to each patient, which is a hard pill to swallow in the beginning. Just gotta keep on - keeping on. Anyhoo, I look forward to learning and sharing with all of you.

Please help me out>> they just randomly found a mass on my Mom's pancreas and possibly a mass on her liver> first seen on CT/then an MRI> she has no s/s>>> they are sending us to a regular oncologist>>>> I dont really understand how they procede to diagnose it and grade it>>> also, is it OK to start with a basic ONC>>>i just waant to do the best thing for her>>> thanks for nay help!! Prayers for all!!!  she is 74>> no risk factors> no family hx

Ralphie62 said:

Pancreatic mass

Hello all!!! I am a prostate cancer survivor and we would say the most information and the best support we recieved here....You really are the most amazing people!! My mother in law has anewly discovered mass on her pancreas>>> we live near Atlanta Ga>>>> does anyone know of a good doctor in this area?? We greatly value your oppinions!! Thank you!!

 

Ralphie62,

The Pancreatic Cancer Action Network (PanCan.org) maintains list of surgical oncologists and oncologists around the country. They can provide names for a specific area from which you can look up the biographies for each name to evaluate who may be the best fit for the diagnosis. PanCan Patient Services can be reached calling 1.877.272.6226, M-F, 7:00am - 5:00pm PT

Yes, the Dr's found a mass on my pancreas. I was admitted to hospital and had a whipple surgery on Dec. 27. Still suffering a lot of pain.

Hello Teagan, I'm very sorry to hear of your fathers diagnosis. Yes, my treatment consists of folfirinox/46 hr infusion. I am fortunate and managing fairly well. I have met patients in clinic on the same regimen and no-two are the same. Everyone responds differently and I've personally learned every cycle can vary with side effects, as well. The Oncologist will help you through and monitor how he is responding, the treatment dosage can be modified accordingly. My first cycle was rather terrifying for many reasons however my Onc dropped my dosage which made for much more manageable treatments. I know it's overwhelming! I am happy to share my journey and personal patient/chemo experience, or answer questions you might have if it can help you & your dad in any way. Please feel free to send me a private message here on CSN if you'd like. :)

On March, 24th, I sat with my dad at his oncologist's office. My dad sat in the patient's chair, and I sat next to him on a cold steel chair. My hands were sweaty and clamy...I was anxious, nervous, hopeful, scared, but all I could do was look back at my dad and ask, "Are you okay?" My dad was like always, calm & cool, and he said, "Yea, I am. It's a nice day outside, but feels warm in here." Only a few minutes had passed, but felt like hours when his oncologist walked in. She went through the motions, then asked my dad, "Do you want your son in the room?" My father responded, "Yes, that's fine." Then, all I heard was "blah, blah, blah...stage 4 adenocarcinoma". My heart sunk, my world turned upside down, and I couldn't believe that my superhero was given a death sentence.

After an hour of back and forth questions, we left the room and my mom got up from the seat in the waiting room. She hugged my dad and knew something was wrong. I took them for a walk, then broke the news to my mom (like my dad had asked me). They embraced and hugged each other. I felt something within me. Maybe dilusional or fighting for every bit of ounce of hope I could find. I held back my emotions and told them, "We're going to fight this!" It's now been almost a month, and my hope has only gotten stronger. But I'm afraid, that my parent's hope is on the fence--between a miraculous turn or accepting...death.

Wife told me of a documentary on Netflix ("The C Word") and I watched it with her. Either a curse or gift (sometimes both), I have a very obsessive researching mind. My wife and I started to take the information from the documentary and looking into foods, exercise, mind & body connection, and stress as part of this "formula". The more research we dug into, we started coming to medical journals, clinical trials, and other research that involved specific foods (vegetables, foods, and essential fats) that either helped the spread of the cancer, shrink the cancer, or foods that were found in research to make the cancer cells self implode (Ghee).

But the next step was to take my father out of the local hospital as it seemed that his oncologist was primarily focused on my dad's quality of life giving him 4-12 months to survive. The idea came from a session with my therapist when I found weeks earlier that they had found the mass in my dad's pancreas. He told me to look into UCSF as they were known to be one of the top cancer clinics in the nation (world?). Then, I realized that we lived in the Bay Area and we were only 25min from Stanford. Last year, my 4 year old son had a seizure and was diagnosed to have myoclonic jerks. We took him out of the local hospital (Oakland for Kids) and put him into Stanford, and it's now been 6mo since he's had any jerk.

No, my dad didn't go into remission. No, my dad hasn't even started his therapies yet. I'm here because I reach out humbly to all of you that have experienced this as a cancer patient or family member of a cancer victim for your guidance. From the plethora of research we've done, it looks like a lot of cancer patients that switched to a healthier life style (diet and exercise) have been able to tolerate the chemotherapy and the cancer itself. And some, with the added implementation of reducing stress and adding herbal remedies to their medications, found added benefits.

My obstacle...my parents. My dad is a strong man of faith and always has been. My mom has always been a strong independent woman. But these same amazing values they have, have also turned into nightmares. Being independent has only translated to being hard headed. Being faithful has only translated to not taking care of onesself because they're relying solely on a miracle. Being older has only translated to be less likely to adapt. I have debates with my mom on the foods she's giving my dad because she has an antiquated ideology that she has no issues, therefore, she "knows" what she's cooking. I've come to cook "experimental" foods that are plant based in the hopes that they'd be willing, but have been more reluctant.

As most of you may know, the narcotics that are prescribed to the cancer patients are a double-edge sword. On one hand they help to alleviate and/or manage pain; however, on the other hand, they create constipation, lethargy, and drowsiness. So, being from the Bay Area, I've seeked out medicinal pills that are high in CBD & THC to act as an alternative. But it's been so difficult to get my dad to be consistent with the frequency and schedule of taking them. Then, my mom switches from helping me to giving into my father's desires. And being the only son, I feel like I'm hitting a wall every step of the way.

Finally, I've had to be strategic in my approach and had my dad do a small, realistic 3-day experiment. I told him to take the medicinal pills around the same time each night. Slowly but surely, his sleep cycles have increased to longer durations. Then, the medications (Senna, Miralax, and Omeprazole) to help with stool, have caused more problems than solution--i.e. cramps and no bowel movements. So, the idea of castor oil came to mind when I used to take it back in my day to help lose weight. Sure enough, the 1st time he did it, he had bowel movement the next day. Then, today experiencing similar painful cramps from not being able to produce stool. I offered him same amount, and within 1-2 hours, he had bowel movements.

Moreover, the hesitation and frustration they've had with our research on better foods finally had a breakthrough today. After speaking with a licensed, accredited Stanford nutritionist. God answered my prayers that most of our research aligned with her recommendations and guidance. However, frustrated by my parents immediate questions about having bad foods (regular breads, cheeses, dairy, etc). The nutritionist asked why it was even being refuted, I had to dig deep in my newly found knowledge bank and explain why I came to find out that it was NOT good. For example, informing her that just because milk says "pasteurized" doesn't mean it really is. Then, she said, "But 'by law' the companies have to state it." And I said, "But marketing schemes and loop holes allow companies to mask ingredients. And although the dairy may say pasturized, how can one know if the cows are being fed grass OR soy and corn that feeds cancer?" She said, "Oh! That's a great point. Yes, that can be true."

Happy I was not far from our research, I thought, THIS IS GREAT! Now, my parents might believe what I'm researching from certified, licensed Stanford nutritionists and doctors. But...I was wrong. They seem to have further sunk to a point where I'm finding through other family members...that...they're giving up. My mom is using me as an outlet when she gets frustrated with not knowing what to do when my dad is in pain. My dad hears our debates, then I get scared of that it will increase his stress levels, so I walk away.

I feel like we have the information at the tip of our fingertips with our technology. And I feel so frustrated, angry, sad and lost. That we are researching day after day, hours after hours. I commute 50mi to work and take my son. My wife just as much. Then, I stay at their home in case of an emergency. But all to see that there are most days that I'm fighting by myself. I have no one else to help me push my parents. I only have support from my wife and family members saying I'm doing great. But how? When the very people I love and I'm fighting for are pushing me away. Leaving it in the hands of God to work a miracle. I, too, believe in God. And I believe he has blessed us all with minds to absorb the knowledge that has been found around the world. And to use that to help us. I believe that everything that has led to these moments (research, change of hospitals, getting into a last seat into an immunotherapy clinical trial, etc) have all been forms of miracles. And I speak humbly as I am not a cancer patient, but like any other disease, don't you have to do your part to take care of yourself? Feeding your body with healthy meals only helps fuel your body with essential vitamins and minerals. It strengthens your immune system, and increases muscle mass to burn fat. Burning fat takes away one of the known sources of what cancers feed off of. Not going hungry prevents the body from turning stored fat into glucose that the cancer feeds off of. Hydrating yourself helps your organs function correctly. Exercising not only increases muscle mass and burns fat, but helps your mental health by releasing endorphines that help reduce stress levels. And helping with the pain of the abdomen and back.

I know there is no "1 cure all" food. Or method to fight cancer. But if there is so much studies and evidence of all these things that have proven to shrink, reduce or make cancer cells self implode, then why not use them in harmony? Why is it hard to push my parents to TRY these methods and use them as ammunition to fight the tumor/cancer? Is it age? Doubt? Reluctant to adapt?

I don't know how else to approach this? I still have a life of my own. I have a wife and a 4 year old son. I'm lucky to have a boss that understands what I'm going through and has been flexible, but for how long. I haven't seen my son and wife as much because I'm driving far and staying at my parents. And there are days where I feel like..."Why am I sacrificing so much just for my parents to push back and fight me?!" I'm doing the best I can as their son, to help them fight. Whether we can, with the mercy of God, shrink this tumor or miraculously see it gone. Why on one hand they seem to fight and adapt, to suddenly sink back into doubt and accepting their fate?

So sorry for this long story, but if anyone has gone through what I have. Please help me with what worked for you. Or if you know someone in a similar situation, I'd love to hear what they did to overcome these obstacles.

I feel like I'm fighting a race against time...but it's getting to a point where I'll accept baby steps versus my parents doing nothing at all...