Humbly Asking for Guidance - Stage 4 Adenocarcinoma
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 clammy...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 delusional 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 oneself 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 looked for 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 a longer duration. 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 pasteurized, 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 endorphins 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...
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I’m going to provide a more detailed follow up for you when I have tIme to gather my thoughts. I’m a 66 year old man, diagnosed with stage 4 adenocarcinoma if the pancreas late last June. I was given 12 to 18 months with treatment. I’ve endured 12 full cycles of chemotherapy - FOLFIRINOX and 8 cycles of maintenance FOLFIRI. Exercise, diet and faith played a key role in my ability to handle the chemo. My response to the chemo is off the charts. Last PET scan could not ID the primary tumor on the pancreas and there was no hyper metabolic evidence of disease. I’m not cured, but the cancer is dormant and my blood work is still strong and todays CA 19/9 was 17.10, marking 5 straight months in the “green”. Keep the faith.
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One of the disappointments I had on this site during my dad's battle is that there was so little traffic. I waited for days and only got 1 response from Steve. So, I kind of get it because it's hard to respond to others when your battle wasn't won. My dad unfortunately passed last October, although he bravely fought for 8 months--"I am going to be a pain in the **** to this cancer!"
I feel for you and what you're going through. What I can offer is what we tried to help my dad in his battle. Naturally, from all the research I did, the most doable criteria is diet and exercise. Reducing sugars (including carbs) that contribute to feeding the cancer, less fats, and implementing more greens and whiter meats (reduce red meats--beef). Cancer loves inflammation as well, that's where it feeds and sleeps.
I would highly advise a nutritionist as well. My dad went to Stanford, and it was frustrating that every medical personnel kept telling him to eat "whatever you want". It was eye opening to see that doctors do NOT know about diet and nutrition. They rely on data and science, and most do not believe in supplements or vitamins. Unless there is science and data behind it, then they change their tune and say, "I am not sure about that."
Additionally, I came to find that there is a direct correlation between body and mind. You may have read or seen that a lot of survivors mentioned that they had a willingness to live. That strong hope, I believe, is the key to survival. Reducing stress is a very key component. My dad didn't know much about mental health because of the generation he was from. For example, he didn't realize at many points that he was suffering from depression. So, getting a psychologist/therapist to help guide you with your stresses is also valuable. Meditation.
Also, I highly recommend a book you can buy a hard copy of or an audio version called, " Anticancer: A New Way of Life" By: David Servan-Schreiber. It taught me that our body is an internal world. Our white blood cells act like soldiers, but need certain vitamins and nutrients to fight back. The tumor itself is like an "alien" in our body and knows exactly how to destroy. Remember, a tumor is composed of cells that are meant to die, but continuously keep regenerating and duplicating. Therefore, the white cells are constantly fighting. Then, the tumor starts to affect other organs in your body making it much more difficult for the white blood cells to fight. Now, they are fighting the tumor AND trying to protect vital organs.
Lastly, look for an oncologist that sees you as more than a f*ng science experiment, a wealth of data. I believe in the journey of a cancer patient, you want the utmost respect. But more importantly, a doctor that's not only fighting alongside you, but holding your hand and available whenever you need them. My poor dad went to one of the best hospitals in the world, Stanford, but towards the end, he cried to go there. It was like seeing him treated like an animal instead of a human being.
I pray the best for you, and if you ever need anymore information, feel free to message me.
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Thank you so much for the information. Sorry about your father. Losing a parent is extremely hard. I want to get better for my son who is only 6.
Today I was told mine is not curable. With chemo then I'm looking at maybe a year vs less than 6 months without. They want to start me on the chemo with 5 different drugs. They think I'm young enough and healthy enough to handle yet in such a severe condition that I need extreme chemo. I feel like a lab rat and tortured with scans and biopsies before ever getting treatment. I keep getting referred from one doctor to another then that one to another specialist. No one actually looks at the images from the scans. It's a nightmare I wish I could run away from.
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There isn’t a lot of traffic on this site. If you are active on Facebook there are a couple of private groups with a lot of info.
https://m.facebook.com/groups/1247491042842884/?ref=share&mibextid=S66gvF
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Here is another group you might find useful. It’s for Stage 4 warriors and survivors.
https://m.facebook.com/groups/1210673358964007/?ref=share&mibextid=S66gvF
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Cancer is not 'curable' because there is no medication/treatment/drug out currently to cure it. However, nature has it's own remedies that we can fight diseases with. I implore you to immediately start reaching out to a nutritionist--not one from the hospital. Maybe someone that specializes in this, but I would look into Mediterranean, Vegan or Vegetarian diets. Maybe think about this like back in the days when you wanted to look good for an upcoming event. You'd prep with good, healthy meals, and have that 1 cheat meal.
Also, look up online the best cancer institutes in your area. Research the doctors, the staff, and hospitals. When you said "nightmare," I could only empathize with you. I have a 6 year old boy myself, and I would do anything/everything for him. Just remember one important thing. Enjoy and cherish these days with close family and friends. Cry, laugh, drive alone and fukn scream! Forget work, but pay your bills and have everything ready for your wife/husband 'just in case'. But travel somewhere, if you can. Build all these memories and do all the things you procrastinated or wished to do. Do them now!
Lastly, when you do your research into the hospitals and doctors. Don't just look at their research and reviews, look at what patients and/or family had to say about the staff & doctors. Some are in it with you, others treat you like you're part of this big, well oiled machine.
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Also, if weed is legal in your state, I'd recommend that for pain. A lot of the medications my dad got weren't helpful. He got one medicine to help with a pain, but it would lead to another side effect. Then, they prescribed him a medication for that side effect, but he'd get another one. And the cycle continued until he just had enough. He couldn't tell anymore where the pain came from--side effects from medicine or the cancer.
I would get him strong dosages of weed pills (20mg/ea) and sometimes it worked. However, the best form/way of taking weed is smoking it. It masks the pain so much faster, and it does not give you the side effects of the meds they prescribe you. The one side effect it gives you is hunger, which is a good problem to have with this type of cancer.
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I'm so sorry that you have this diagnosis. Have you started any treatments yet? I hope that the facebook groups are helpful, I am going to check those out... so thank you to arexniba for sharing those. My husband has pancreatic adenocarcinoma and went through 6 months of Fulfirinox (sp?), then nano-knife surgery (a whipple procedure is not possible because his tumor is growing around major blood vessels), MRI guided radiation treatments... then about 6 months of no tumor growth. Last December the CA19 levels started to increase again, indicating that the cancer was beginning to grow again. He had another biopsy for genetic testing to see if immunotherapy might be an option... it isn't an option for his cancer. So now he is getting treatments of Gemzar... it is lowering the CA19 levels and he'll have a ct scan on July 31st to check the size of the tumor. So that is where our journey is at this point.
This forum isn't very active, but I will try to check back and see if you have any questions. A couple of things to look into... if you have health insurance, will it cover a biopsy to check the genetic makeup of your tumor? If there are certain genetic markers, you might be eligible for immunotherapy. If you have started chemo, you most likely won't be able to do genetic testing until you have stopped chemo and the tumor starts to grow again... at that point, insist on genetic testing of a biopsy sample. Or... if you had a biopsy, ask if there is enough tissue to do genetic testing.
Another possibility might be nano-knife surgery. It is done by laparoscopy and they basically zap the tumor with electricity... it is much less invasive than the whipple procedure and may cause the tumor to go dormant for a period of time.
And, this is important!... I highly recommed contacting PanCan (Pancreatic Cancer Action Network) and ask them if they can send a list of the surgeons in your area that work with pancreatic cancer patients... and then look for the doctors that handle the highest number of surgeries and/or perform nano knife surgery. We didn't even know that this procedure existed until PanCan sent us info and we contacted our surgeon and talked to him. Although my husband is not expected to survive his cancer, he had at least 8 extra months so far, due to the nano-knife surgery. I hope that some of this info is helpful to you and I wish only the best for you and your family.
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I am so sorry to hear about your father.
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