Monday, February 13, 2017

My Dad: 4 Years since Diagnosis...


FOUR YEARS.  It's been 4 years (and one day) since my Dad was diagnosed with Stage 4 Pancreatic Cancer.

Four years since he was told he would probably have only 6 months to live.

Four years of late nights looking for advancements in research, miracle cures, supplements, advice.

Four years of ups and downs.

Four years of treatments. SO many treatments. Is there is an award for most chemo treatments on one body? I'm not sure what the count is. Around 100? That has to be close to record-breaking....

Four years. And we appreciate every day.

It's a tough anniversary to 'celebrate'.  But, we're thrilled to have the chance.

MORE FUNDS FOR MORE RESEARCH FOR MORE CHANCES TO FIND THE CURE.

I love you, Dad.

Wednesday, March 30, 2016

3 years out...still at it!!!

I apologize, because I don't post that often and then I'll get an email from someone tentatively asking if I'm not posting because my dad is not doing well.  QUITE THE CONTRARY, so again, I apologize.  That's my dad in the middle, holding his 'three year anniversary' cake a few weeks ago. While that looks like one of those sugary cakes with tooth-achingly sweet frosting, NOTHING is sweeter than the gift of time we have been given that so many wonderful people have been denied. So, we continue to fight for funding for research to give these 48,000+ (and that's just the U.S.) newly diagnosed patients every year a better chance. We are again forming teams for the Pancreatic Cancer Action Network Purple stride walks in Milwaukee and Los Angeles.

Dad still does chemo every other week.  75th round? 78th?  I've lost count, though I'm sure he hasn't. But, he is not complaining, and is off on an amazing vacation and then anxiously awaiting the start of golf season.  If you or a family member or friend has been diagnosed and needs someone to talk to, my dad is happy to talk to you, just reach out to me and I'll hook you up. It's ok to have hope!!!!


And a quick shout-out to his amazing nurses and hospital staff that take such great care of him and the other patients.  When my dad was first diagnosed, the doctors were extremely hesitant to give any hope. But, the nurses are a different story.  Thank you so much for what you do!

Dad, you should JUMP out of a cake next year, don't you think?????

Wednesday, February 18, 2015

My Dad's Supplement Regimen

Our Supplement List

The amount of requests for this info was so great after my last post, that I decided to just make it available here.  I have hesitated doing this, because I'm not a doctor, and ultimately, we have no idea what exactly is causing dad's great results.  I'm not claiming any one supplement is responsible, this is merely a report on what we do. You must not rely on the information on this website as an alternative to medical advice from your doctor or other professional healthcare provider.  We clear EVERYTHING with our oncologist before he takes it.  Our oncologist doesn't have a lot of faith in these, but he also feels like "it won't hurt", so there you go.

As you may know if you've done your own googling...there are a ton of supplements that make claims about being effective in fighting cancer.  And people are probably sending you ideas too.  Here's how we chose these:  for the most part, we only added a supplement that had shown effectiveness in a clinical trial against pancreatic cancer.  Where possible, I've included links to those studies below.  Look at the data and decide for yourselves.  And if you find something that looks equally or more effective, please let me know!  Also, I receive absolutely no benefit for recommending these, nor do I have any connection with any of the companies.  I do recommend Amazon Prime as a lot of these are available there with free shipping when you are a member.

1. Liposomal C 1000mg packets (4-6 packets a day): I had read a lot about intravenous vitamin C (upping the effectiveness of chemo while diminishing side effects), but I couldn’t see making my dad sit in a chair with an IV even more than he already is.  I did a lot of research and found evidence that the liposomal vitamin C can reach the same concentrations in the blood, plus was much more convenient.  http://www.peakenergy.com/news/VitaminC_Cancer_w_Comments.pdf
I really prefer this brand of liposomal C because this is the brand that was used in the study. I have my dad taking 6 packets a day.http://www.livonlabs.com/cgi-bin/htmlos.cgi/01146.1.1764306761331765819/liposome-encapsulated/lypo-spheric-vitamin-c.html

FYI, you can buy it on Amazon cheaper:

2. Turkey tail mushroom capsules (1g/day which is 2 capsules), which I buy here: http://www.hostdefense.com/products/mushroom-capsules/item/turkey-tail?category_id=4
and here they cite the specific trials with pancreatic cancer cells:  http://www.earthsfirstfoods.com/mushrooms/turkey-tail/
3. Metformin (2 doses 500mg/day (1000mg total): He also takes Metformin strictly for possible tumor killing effect.  It is a prescription drug for diabetes.  If the oncologist hasn't read about using it for pancreatic cancer, you can show him these links:

4. Bitter melon juice 1 oz, 2 times a day:  based on this study:
We found the juice (also called karela juice) in the local indian grocery store.  They also have it online at Amazon.  He is taking 2 oz. of the juice daily.  The taste of the juice is way better than the powder.
http://www.amazon.com/Basic-Ayurveda-Bitter-Gourd-Juice/dp/B005J222V4/ref=sr_1_2?ie=UTF8&qid=1424284038&sr=8-2&keywords=karela+juice

5. Curcumin 
500mg 2 times a day (so 1000mg/day) of the Longvida type: He is also taking Curcumin (which is turmeric), which is a widely known anti-cancer supplement. Based on this info http://truttmd.com/curcumin-caveat-emptor-not-all-brands-are-created-equal/ I chose the following formula:
 
 
image
 
 
 
 
 
Curcumin, LongvidaTM by Nutrivene (500 mg, 60 capsules)
Amazon.com: Curcumin, LongvidaTM by Nutrivene (500 mg, 60 capsules): Health & Personal Care
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6.  Acupuncture 2 times/week: After 16 treatments of Folfirinox, the Oxalipilatin in the combination was causing too much numbness in my dad's hands and feet.  The neuropathy is one of the biggest problematic side effects and eventually can be debilitating to the point where a patient can't button his shirt, or might be unsteady on her feet.  We found an acupuncturist that specifically treats chemo-induced neuropathy.  My dad was highly skeptical to begin with, but now his neuropathy is 80% gone and his hospital is so impressed they are now referring patients to the acupuncturist I found.  Also, the acupuncture is supposedly helping boost his immune system as well.  UPDATE:  after one year with the acupuncturist, my dad thought maybe he didn't need it anymore, and it wasn't helping any further.  He stopped going and within two weeks the numbness increased.  So, now we know for sure it was helping and he's going two times a week again.  It is my opinion that you should find an acupuncturist who SPECIFICALLY has studied neuropathy and cancer.

7. Moringa Leaf Powder (2 capsules twice a day (4 total): He also takes capsules of Moringa leaf powder twice a day.  You can also add to smoothies, though we switched to capsules since he didn't like the taste of it too much.
Here is one study on that:
 
8. Sulforaphane (1 dose of EnduraCell a day): And the latest addition to the mix is sulforaphane which is found in broccoli sprouts based on this study:  http://www.ncbi.nlm.nih.gov/pubmed/23129257

I like this formulation best.
 
 
 
image
 
 
 
 
 
EnduraCell PLUS 60 Capsules
EnduraCell PLUS (60 Capsules) Why take EnduraCell PLUS?  Stimulates cellular antioxidant defences within the body Broccoli sprouts may activate key enzymes in live...
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 You can also grow your own broccoli sprouts easily.   Here's a good sprouter:

http://www.amazon.com/Sproutamo-Easy-Sprout-Sprouter/dp/B000GHUD86/ref=sr_1_4?ie=UTF8&qid=1424284936&sr=8-4&keywords=seed+sprouter

And the seeds:

http://www.amazon.com/Sprouting-Broccoli-Seeds-One-Pound/dp/B0001W2VYK/ref=sr_1_4?ie=UTF8&qid=1424284971&sr=8-4&keywords=broccoli+seeds

 
9. Frankincense oil (1 drop internally, twice a day):  here's a study:  http://www.biomedcentral.com/1472-6882/12/253

and a brand of oil that is ok to take internally (apparently, not all of them are)

http://store.do-essential-oils.com/frankincense-essential-oil/

If you are thinking by now that the cost of these adds up, it definitely does!!!  Of course, it doesn't even come close to the cost of one chemo treatment.  I've never been able to get any advice on these dosages or combinations of these from any health professional.  We've read the information that's available and determined the rest by ourselves.  And again, we are not health professionals.  You need to let your oncologist and other doctors know before taking any supplement.   There can be interactions with other drugs.  

I hope this is helpful.  Hundreds of hours of late night googling, looking up medical terms, staring at medical studies through bleary eyes!!!!

I wish our results on all of you.  And then you can all send me your survivor stories!

Best,

Jeannie

Friday, February 13, 2015

Two Years...and counting! Update on Dad.

Two years ago yesterday was the worst day in my immediate family's life.  February 12, 2013 my dad was diagnosed with Stage 4 pancreatic adenocarcinoma with metastasis to the liver.  The tumor in the pancreas was 6cm x 4cm (about the size of a lemon) and the lesions in the liver were "too numerous to count".  The doctor, with regret, let my parents know that my dad was not curable.  They would try chemo to extend his life and hopefully that would buy him some time.  When my dad asked how much time he was looking at, the doctor told him it could be as little as 3 to 6 months.  The average survival is 9 months.  If he was REALLY lucky MAYBE 1 to 2 years.  It was such a shock.  Dad was one of the healthiest people we knew.  He had run a 1/2 marathon 4 months before and placed 3rd in his age group.  His only symptoms were some back pain and abdominal discomfort.  We never dreamed it would be anything like this.  If you're  reading this, then you probably know all too well how that moment feels.

Well, check out dad drinking a margarita in Mexico on his 2 year anniversary from diagnosis!  We just got the latest scan results last Monday.  They can't see any cancer on the scans.  Anywhere.  His CA 19-9 was 6000 at diagnosis.  It now is at 12.  Dad looks good and feels good.  And we are extremely thankful!!!

Dad's doctor strongly believes in keeping dad on chemo and not giving the cancer a chance to grow back.  Over a year ago, they dropped out the nastiest drug of the Folfirinox combo, Oxalipilatin.  Without that one in the mix, the chemo is very tolerable for him.  He just finished round 49 and then took off on vacation the next day.

I started this blog after dad got diagnosed because I googled "Stage 4 Pancreatic Cancer Survivors" and came up with nothing.  From then on, it was my goal to make this the first site that would pop up when others did the same search.  And my secret wish, which has come true, is that eventually I would be able to post Dad's story here.  I am so grateful.  Truly, truly grateful to share this with you. There are survivors out there.  There is VALID reason to HOPE!

Dad has kept a great attitude the whole time.  In addition, he takes a number of supplements (email me or leave your email in the comments and I'm happy to send you the list).  He also does acupuncture twice a week, which has GREATLY helped with his chemo-induced neuropathy.

So CHEERS, Dad!  I love you!  Where are you going for next year's anniversary?


UPDATE:  I've posted all the supplement info here:  http://stage4hope.blogspot.com/2015/02/my-dads-supplement-regimen.html


Friday, September 26, 2014

Survivor Story #20

I thought this one was interesting due to the fact they did surgery on the liver.  I did confirm that the diagnosis was adenocarcinoma.

You can find the original story here: http://www.fau.edu/mediarelations/releases0914/091418.php#.VCVuJvyeXI0.

MEDIA RELATIONS
Press Release:
MEDIA CONTACT: Gisele Galoustian
561-297-2676, ggaloust@fau.edu
CARING COMMUNITY, POSITIVE ATTITUDE AND AGGRESSIVE TREATMENT HELP FAU PROFESSOR SURVIVE TWO BOUTS OF PANCREATIC CANCER
A Survivor’s Story and His Message of Hope to Cancer Patients and Their Families
BOCA RATON, Fla. (September 25, 2014) --- In what his physicians have called a “miraculous recovery,” Steven Lewis, Ph.D., a visiting professor in the Charles E. Schmidt College of Medicine at Florida Atlantic University, has beaten all odds surviving two bouts of pancreatic cancer. Lewis was first diagnosed with the disease in 2007, and again almost three years later when the cancer metastasized to his liver. He has persevered major surgeries, radiation treatments and chemotherapy.
With the highest mortality rate of all major cancers, pancreatic cancer patients have less than a five percent survival rate within five years of diagnosis, and 74 percent of patients die within the first year of diagnosis. It is the fourth leading cause of cancer-related deaths in the U.S. with an estimated 46,420 Americans diagnosed each year. Pancreatic cancer is one of the few cancers for which survival has not improved substantially over nearly 40 years. In recent years, pancreatic cancer has received considerable attention because many well-known individuals such as Apple co-founder Steve Jobs, actor Patrick Swayze and opera singer Luciano Pavarotti have died from the disease.   
Following the surgery to remove the cancer in his liver, Lewis has been cancer free and in excellent  health for more than four years. Along with his outstanding team of physicians, Lewis credits his ability to maintain an extremely positive attitude with saving his life. As an exercise physiologist, researcher and teacher, he leads a vigorous life, exercising regularly to maintain a high level of physical fitness and health.
 “A diagnosis of pancreatic cancer presents a terrible emotional burden for patients and their families,” said Lewis. “It is a better choice to face the mortal threat of this illness squarely than to react with negativity, complaint and despair. Whether individual patients survive or not, maintaining a positive attitude can help patients and their families beat the emotional devastation of pancreatic cancer.”  
Lewis and his family experienced numerous health twists and turns during his long battle with cancer and he believes that if they were not able to stay positive, their emotional devastation would likely have drained his physical ability to fight the cancer. In addition to their upbeat approach to this life-threatening illness, they used CaringBridge.org, an internet blog for severe medical conditions to develop a strong emotional support community. Lewis strongly believes that maintaining a highly positive attitude can provide already weak patients with more focused energy to fight off their disease and potentially improve their survival.
Inspired by the community support he received, Lewis has just published a book called “The Ripple Effect: How a Positive Attitude and Caring Community Helped Save My Life.” He wrote the book to help others who may be facing adverse health conditions and other traumatic situations.
“Virtually everyone, at some time in life, will endure serious life changing experiences such as a life threatening illness, injury, loss of a loved one or divorce,” said Lewis. “During such trying times, a positive attitude can help us think clearly, be solution oriented and ultimately prevail.”
“The Ripple Effect: How a Positive Attitude and Caring Community Helped Save My Life” is published by iUniverse and is also available on Amazon and Barnes & Nobles’ websites. 
-FAU-
About Florida Atlantic University: 
Florida Atlantic University, established in 1961, officially opened its doors in 1964 as the fifth public university in Florida. Today, the University, with an annual economic impact of $6.3 billion, serves more than 30,000 undergraduate and graduate students at sites throughout its six-county service region in southeast Florida. FAU’s world-class teaching and research faculty serves students through 10 colleges: the Dorothy F. Schmidt College of Arts and Letters, the College of Business, the College for Design and Social Inquiry, the College of Education, the College of Engineering and Computer Science, the Graduate College, the Harriet L. Wilkes Honors College, the Charles E. Schmidt College of Medicine, the Christine E. Lynn College of Nursing and the Charles E. Schmidt College of Science. FAU is ranked as a High Research Activity institution by the Carnegie Foundation for the Advancement of Teaching. The University is placing special focus on the rapid development of three signature themes – marine and coastal issues, biotechnology and contemporary societal challenges – which provide opportunities for faculty and students to build upon FAU’s existing strengths in research and scholarship. For more information, visitwww.fau.edu.

Tuesday, September 23, 2014

My Dad Update September 2014

Here is an article the local paper just did on my dad.  He was originally diagnosed February 12, 2013.  GO DAD!!!!!



Wednesday, March 26, 2014

Survivor Story #19 Christina Parrish

I got very excited when Chris found this blog through Facebook and contacted me to let me know she was a 5 year survivor of Stage 4 Pancreatic cancer!  I asked her if she would share with us, and she agreed!  In addition, she started the very cool Purple Iris Foundation to raise awareness, you can check that out here:  http://www.purpleirisfoundation.com/

Here is her story:

My name is Christina Parrish and I was diagnosed with Stage 4 Pancreatic cancer in June of 2008.
Now, rewind to about to 5 years before that. I was running a daycare and friends had noticed that I had dropped ALOT of weight (40lbs). I also had constant digestive issues and was given every pill under the sun for it. Nothing worked. I got tired of going to the Doctor and just learned to live with it. Well, one day during my workout, I was stretching and I noticed a bump protruding under my left ribcage. It hurt to touch it. I was scared, but decided to just let it go.
About 3 weeks later, I started getting excruciating back pain (just under my shoulder blades).
I just thought it was old sports injuries creeping up on me, and old age. About 2 weeks later, I began to feel just AWFUL! I had never felt this bad in my life. I left work and was at the Doctor’s the next day. My Doctor was concerned because I never was sick. They ordered X-rays, and MRI and blood work and a CT scan and then came the 4 day wait! It was the longest 4 days of my life! I got the call to come into the office. My PA comes into the exam room and is visibly moved.
She then told me that I had a mass in my Pancreas and numerous spots in my liver. I asked if there was a way to take it out and she shook her head and said “No”. This was the day my life was turned upside down cancer. But, it would be the only day that I let this diagnosis have the best of me. From there was my meeting with a local Oncologist. I was given 6 months to live, with treatment. This made me SOOO angry! I was 40 years old! How could I be dying! I then sought out a 2nd opinion in Boston. They told me that they would recommend the same treatment as my hometown Oncologist. I was so upset that no one would give me a fighting chance!! I decided, early on, that I would not let my diagnosis rule my life. With research, I found a perfect fit for me and treatment for my cancer. It has made all the difference.


I decided, early on, that I would not let my diagnosis rule my life. Of course, there is a new “normal” that you have to acclimate to. But, isn’t life about changing and adjusting to new things?

Monday, March 24, 2014

Survivor Story #18 low dose chemo

Five-Year Survival of Metastatic Pancreatic Carcinoma: A Study of Courage and Hope

Today's survivor story is an article published by the International Society of Gastrointestinal Oncology.  Click anywhere on the article to go to their site, or find it here:   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2806805/

Five-Year Survival of Metastatic Pancreatic Carcinoma:  A Study of Courage and Hope

CASE REPORT

DISCUSSION