A Clinical Trial Success Story!

We need more success stories like this!

Come meet Earl...

In September 2015, Earl returned home to North Carolina after driving 5,500 miles cross-country for his first trip to the Burning Man festival in Nevada.  Concerned about a herniated belly button, he went to see his doctor.  Earl assumed the long, hard drive in his camper without power steering had put too much stress on his body.  The doctor came back with a diagnosis that was the furthest thing from his mind - stage IV pancreatic cancer, with metastases in his liver, lungs and fatty tissue.

Earl asked to call in his daughter, a physician,  Reflecting on that conversation, she says, "When you're hoping for the diagnosis to be melanoma, you know it's a very bad day."  Having treated pancreatic cancer patients herself, she understood they would have to act fast to make treatment decisions. 

His daughter immediately called colleagues to ask for referrals and flew to be with her father in North Carolina.  Reunited at the airport, the family cried and hugged before they left to start the process of setting a treatment plan.  They chose an expert medical team at Wake Forest Baptist Medical Center that his daughter describes as "an amazing team of doctors and nurses who were always enthusiastic, upbeat, caring and hopeful."

While discussing treatment options, Earl's doctor suggested a clinical trial.  Earl says, "I saw it as an opportunity to get the best drugs hospitals could offer, plus more." His daughter adds, "We know that clinical trials offer the newest and often best, options for treatment."  Earl enrolled in a phase I clinical trial for CPI-613, a targeted therapy aimed at cancer cell metabolism, receiving the test drug in addition to Folfirinox, a combination of chemotherapeutic agents.

After four rounds of the regimen, Earl's tumors shrank by as much as 30%.  One year after diagnosis, he was feeling great and his CA19-9 levels had come down from around 10,000 to below normal range.

Early in his treatment, he took a trip to Disneyland with his grandchildren.  Since then, he and his wife, Juanita, have visited family in Canada seven times and gone on many family trips across the United States, including a camping trip in Yellowstone National Park.  Earl and his wife have also made the cross-country road trip to the Burning Man festival again - twice.  Earl says, "Even though it can be hard, I remained hopeful, positive and optimistic throughout the treatment."  To help maintain his positive attitude, Earl and his family made a point to spend extra time together, which has brought them even closer. 

Reflecting on his family, Earl says, "They have been so supportive - especially my wife of 49 years, Juanita.  I recently told her she may have to put up with me for another 15 years!  It is an understatement to say I'm a proud husband, father and grandpa."

Earl wants to deliver a message of hope that pancreatic cancer is not a death sentence.  He encourages others facing the disease to find an expert healthcare team, actively seek out clinical trials and try to maintain a positive attitude.  His daughter, speaking as both a family member and a physician, echoes this advice, saying, "When you're choosing a healthcare team, you must consider their experience and treatment philosophy - it will impact your entire experience.  Seek out the type of team you want and always consider clinical trials because they are very important treatment options."  Earl is currently receiving treatments with CT and MRI scans after every four rounds.  His scans have been clear for months, and his CA19-9 levels remain below normal.  He still feels good, though his many adventures cause him to be tired sometimes.  He says, "I'm extremely active for a 70-year-old pancreatic cancer patient, and I don't plan to slow down because I'm on borrowed time."

These are the stories that make my heart happy!

Thanks to the Pancreatic Cancer Action Network for sharing Earl's story

and for promoting Precision Promise and the encouraging work of clinical trials for all cancers, but especially for Pancreatic Cancer...

Winging prayers of love and support to Earl and his family,

Keep up the good fight!

In Grace, Tonight,

Always,

Jane

Promising Clinical Trial for Pancreatic Cancer...

Hope for a Cure... That's what clinical trials are all about.

If you haven't seen the news on MM-398 here's a sneak peak...a letter from Julie Fleshman posted on the Pancreatic Cancer Action Network this past week:

I am pleased to share some good news for the pancreatic cancer community. Today, Merrimack Pharmaceuticals, Inc., announced the positive results from its NAPOLI-1 phase III clinical trial. The study involved three participant groups, each made up of patients with metastatic pancreatic cancer who had been previously treated with gemcitabine (Gemzar®) -based chemotherapy.

Patients were treated with either Merrimack’s drug MM-398 (irinotecan liposome injection), the chemotherapy drug 5-FU and leucovorin (a standard treatment option) or a combination of MM-398 with 5-FU and leucovorin.

This study showed that a combination of MM-398 with 5-FU and leucovorin increased overall survival by nearly two months (6.1 vs. 4.2) compared to those patients treated with 5-FU and leucovorin alone. This represents the median, meaning some patients experienced longer survival, and some shorter. A statistically significant increase in progression-free survival was also observed in this group.

The patient group treated with MM-398 alone had similar results to the group treated with only 5-FU and leucovorin.

We are encouraged by the results of this trial. New developments will eventually lead to greater treatment advances. Last year, Abraxane®, in combination with gemcitabine, proved effective in treating newly diagnosed patients. Now, MM-398 is poised to help those who seek additional options after their initial treatments for metastatic pancreatic cancer. Two new medications in 18 months is a clear sign of the momentum we are gaining in the fight against pancreatic cancer.

Merrimack plans to submit MM-398, to be used in combination with 5-FU and leucovorin, by the end of 2014 for approval by the Food and Drug Administration (FDA). MM-398 is not currently available to patients. We will share more news as we learn of it.

The 417 patients who enrolled in this trial have helped change treatment options for this disease and created a legacy of progress for those yet to be diagnosed. To learn more about pancreatic cancer clinical trials or have a personalized search performed for you or a loved one, please contact our Patient and Liaison Services (PALS) program. We maintain the nation’s most comprehensive pancreatic cancer clinical trials database and do not charge a fee for any of our services. PALS Associates are available at 877-272-6226 and pals@pancan.org, Monday – Friday, 7 a.m. – 5 p.m., PT.

With hope,

Julie Fleshman
Julie Fleshman, JD, MBA
President and CEO

No, it's not a cure... yet!  But praying with Hope for treatment advancements for all going through the pancreatic cancer journey.

My Love,
               Jane

A Clinical Trial Gives Hope...

When mom was diagnosed with pancreatic cancer, we were swamped with decisions on her treatment... chemotherapy and radiation were the traditional treatments recommended in hopes of shrinking the tumor enough for surgery...but we also looked at alternative therapies and debated the merits of nutritional supplements and diet.   And at some point in the dark hours we even threw in the possibility of a clinical trial... everything was on the table for consideration.  We were in battle mode and we were fighting hard for mom's very survival... 

We so wanted to hear success stories like the one I'm about to share with you.  There is nothing more encouraging than talking with a cancer survivor that knows where you are and understands the gut-wrenching struggle you are wrestling with... Kim Vernick has been where you are and she shares her story with pluck, humor and tenacity.  Her journey involves the decision to participate in a clinical trial.

Clinical trials are not for everyone...nor is Kim's story going to be your story... but what if, (whisper it loud), what if there's a clinical trial out there that finds the Cure for Pancreatic Cancer???  There is a cure...I know it deep in my bones (I dream it for each one)...and one day soon... One Day Soon, Pancreatic Cancer will become a thing of nightmares past, for each of us.

Thank you Kim for sharing your journey and bringing Hope to the table...

The Alien inside me

      by Kim Vernick

No this is not a mental illness even though I think I would prefer it to be.  This alien is cancer.  Why me, I ask? I have never been sick a day in my life unless you count colds.  I am an avid tennis player and a pretty good one I may add.  I even dappled in yoga for a year prior to acquiring my alien.  Yoga was fun but it was not easy for me as I am not your most limber sort.  Walking was great…I could walk indefinitely but had to be aware of the time so I could return home before dark. 

 

I was 52 when I was told I have pancreatic cancer.  It must be a mistake but after two hospitals that specialize in pancreatic cancer confirmed the same thing following a battery of tests performed at both institutions, yes I have cancer.  Okay…now I must tackle this head on.  I will survive this.  My advice to all of us with such aliens…stay off the internet.  But no…how can you when you need to find out as much information as possible.  But the internet had me dead and buried multiple times.  Yes, I will be in that small percentage that makes it.  So as the doctors told me, I must prepare for the marathon ahead of me.  That’s right, “this is a marathon and not a sprint.”  Personally I prefer sprints as running was never my thing but since I was now in great physical shape and mentally I am a real tough girl, I was going to beat this alien.

 

I did keep a medical diary of all that transpired during the year of my marathon.  I participated in a clinical trial, which would beat me up even more but increased the chances of reaching the goal of getting me to that surgery table.  I consumed drugs to stop the nausea, others to help me from the ensuing constipation caused by the anti-nausea drugs, more to follow to stop the diarrhea when the anti-constipation drugs kicked in….oh and the vomiting.  Yes of course there was vomiting but there was nothing to stop that…thank you chemotherapy.  But on the other hand…really thank you chemotherapy.  After all was said and done they did get the alien.  My surgeon stepped to the plate, after my oncologist and radiation oncologist killed the alien, and successfully removed my alien with many of my internal body parts as well.  Apparently I do not need my gallbladder nor my spleen nor 2/3 of my pancreas.  Fortunately I am left with the part of my pancreas that is necessary to produce enzymes for digestion and to keep me from becoming diabetic.  So now I am one year from surgery, drug free, and feeling great when the doctors informed me that I have a suspicious thickening near my gastric junction, in the same place as before.  After another battery of tests it is discovered that my alien is back in the same area. 

So I retire my tennis racquet for a few weeks, clean out my tennis bag as I always keep snacks in there and we do not want mice in my coat closet.  Continued walking but it is really too hot for long walks.  Get mentally tough!

The good news is that it is in the same area so it did not spread.  The bad news is that it is in the same area and I am pretty messy and damaged in that area.  The doctors are now ready for plan “B” and I am now ready for round “2.”  We are a team and we need to do this together.  So the plan is they will beat me up yet again and hopefully my alien will be obliterated…end of story…never to return...

Proton radiation is a specialized form of radiation therapy.  I asked about this therapy two years ago but they were not using it for pancreatic cancer at the time.  Okay, now I get to use those protons.  So on my not so comfy mold of my shoulders and arms I will lay on the table while they blast me with protons.  Don’t move a muscle but I can breathe normally.  Arms raised above my head, knees elevated comfortably with a rounded pillow pad like a massage table…don’t move as we do not want to miss.  Thirty minutes…what do I think about for 30 minutes?  The beach on a Caribbean island, I can do that for a few minutes, what about the other 25 minutes….alien be blasted…alien be blasted…get it get it rah rah rah. 

Emotionally I am trying to stay strong but in reality I am scared.  There are too many what ifs to think about.  I am trying not to go there at all.  My family is going through this too in a different way of course.  They don’t want to lose their mother, wife and they are worried as well.  Also, the marathon affects the entire family not just me…the victim…or patient…I feel I am more of a victim.

I am ready for this and I will beat it again with the help of my doctors.

Well round two was over a year ago and I am feeling great and having fun living life.  The first time was a clinical trial protocol of chemotherapy and radiation and then surgery and then more chemotherapy.  Round two was protons and chemotherapy.  I will be forever grateful to my doctors, friends and family.  But we also must remember to stand and stay tough as it is our responsibility to make sure we get the best care and take care of ourselves.  I hope I do not have to participate in any more of these “marathons” but know I can if need be.

I am cancer free and feeling great!

 

The Big PINK Soap Box

Every now and then a moment, or a word, or a thought, will really resonate with you.  Such is the case with a blog post I read a while back.  Written by an amazing woman whose husband was diagnosed with pancreatic cancer in 2010, this post is refreshing in its honesty, and so very applicable right now with Pancreatic Cancer on the rise and funding for a cure so far behind...

Thank you, Michelle for your permission to reprint.  You honor Craig's memory with such Grace and Beauty.  He would be so proud...

My big PINK soap box

   ~written by Michelle Merimee at www.merimeejourney.blogspot.com  Link here.

Disclaimer: this may be interpreted as one of those "politically incorrect" posts. Might want to just skip it.   (I have to insert my 2 cents. . .  You Don't Want To Skip It!  Jane)

I have thought about this post for many weeks now, I have debated whether or not to even mention the subject but time and time again this subject gets under my skin. This is not to take away from anyone's cancer battle. My mom has two dear friends that battled cancer. One does victory laps in her beautiful pool in her backyard and one does victory laps in heaven. Every cancer fighter deserves medals for their bravery.

It seems just taboo to even mention this...

Here's the thing. There are pink ribbons ON EVERYTHING. I have a bag of Sun chips that is pink in the pantry, Energizer batteries, if it stands still long enough in a store someone is going to stick a pink ribbon on it. Susan G. Komen has mastered the way to market a disease. Susan died in the late 70s and her sister was in marketing and made it her pledge to help fund breast cancer so that they could find a cure. And man did she do it!! Don't get me wrong, thank goodness she did. They have found ways to treat breast cancer and more importantly they have promoted preventing it. BUT breast cancer isn't the only cancer that is out there. If pancreatic cancer received a 10th of the funding that breast cancer did they may have better answers for us.

This hasn't just been on my mind since Craig was diagnosed, it was just a smaller soap box at the time. I worked with a local hospital several years back on the marketing of their new heart health unit. Did you know that heart disease is the number one killer of women, not breast cancer? If you want to support women's health throw your money on educating women how they can keep their hearts healthy. That is much easier to solve than a disease that comes out of no where at times.

When Craig was first diagnosed I found a website that said that pancreatic cancer was so underfunded for several reasons. One of the main ones was the fact that it was so hard to prevent since the pancreas is hidden behind a couple organs. The symptoms are not alarming until they persist or jaundice surfaces and then it is normally in late stages. The other reason is there are not "spokespeople" out there to help move the research along. With the odds that go along with the disease there isn't much of a "team" to join. There are two walks in Louisville alone that support breast cancer. There isn't one to support any GI cancers with in 100 miles.

Last night I was reading an article on treatment that is being worked on in Cincinnati. A drug that was discovered in 2002. 2002! The researchers are hoping it gets to a phase I clinical trial by mid-next year. The funding to push these things through just isn't there.

Don't get me wrong, Save the Ta-tas, Fight Like a Girl, wear your pink and wear it proud. BUT don't do it at the sacrifice of the pancreas, the colon, the liver, hundreds of pediatric cancer, lung cancer, brain cancer etc etc. We may not have the cute slogans but we have family members suffering. And suffering with little medical hope.

I have posted a link from Good Morning America a couple weeks ago.

http://abcnews.go.com/GMA/video/patrick-swayzes-widow-lisa-niemi-swayze-fights-pancr...

Patrick Swayze died of pancreatic cancer after battling 22 months. His wife was interviewed by Robin Roberts who is a breast cancer survivor. The interview highlights my point much better than I am doing in this post. Pancreatic cancer is where breast cancer was 20 years ago and it needs help. It needs marketing, it needs walks, it needs funding, it needs corporations to get behind it like breast cancer!

One day in the oncologist office it was pink out day. I asked one of the nurse when purple out day was. She didn't even realize that was the color for Pancreatic cancer, as she was treating my husband for the disease! Most people don't even know the color for pancreatic cancer but they know about the pink.

Again I am not dogging breast cancer fighters we just need to spread the love so that other cancer can share in the success.

Signs and symptoms of pancreatic cancer:

• Upper abdominal pain that may radiate to your back
• Yellowing of your skin and the whites of your eyes (jaundice)
• Loss of appetite
• Weight loss
• Depression
• Blood clots

After I explained myself to the RN at the office she said "well it sounds like a good job for you."

Well I do look good in purple....


Michelle has tackled a sensitive topic with eloquence and grace.  Pancreatic Cancer is robbing families of their loved ones with a methodical intensity that has changed little in the last 4 decades.

And I constantly ask, How can that be?

We can send a rover to Mars, we can create micro-computer chips smaller than our thumbprint that hold volumes of information, we can get inside a tornado and collect data.  The world is full of brilliant minds...and Cancer sufferers.  Let's bring them together and find the Cure, once and for all.  How Brilliant would that be?!!

Thank you Michelle for bringing the spotlight to bear on the task at hand...

I think we all would look good in purple! 

Trusting in Grace to Lead the Way,  Always, Jane

Starving the Cancer Out

Could something as simple as a change in diet really make a difference in the pancreatic cancer fight?

I'm not sure, but there's a growing tide of interest in the Ketogenic Diet.   As you can read in this link, the ketogenic diet is not for the faint of heart.  Removing all sugar, carbohydrates and fruit from your diet is severe in the extreme.

But...

If it worked?  Can you imagine?  If a diet could slow or even stop the progression of the disease?

Mom suffered thru the harsh realities of radiation and chemotherapy.  I think she could have handled the deprivation of sugar... that seems like a walk in the park compared to the brutal side-effects of the current traditional therapies. 

And yet, I'm always cautious.  Claims that seem to good to be true... And so, I invite you to visit with Martin.  He's an amazing gentleman, husband and father.  He also just happens to have pancreatic cancer.  He is documenting his journey on a blog called Fighting Pancreatic Cancer.   And fighting he is.  With all that is at his disposal.  One of his weapons is the Ketogenic Diet.  If you are at all interested in this diet, I encourage you to read through some of his experiences here and here.

As you can see, Martin is using the diet in conjunction with many traditional medical treatments.  This is the premise behind a new study at The Holden Comprehensive Cancer Center at the University of Iowa.  This clinical trial is currently recruiting participants.  They are seeking to answer the question: 

"Can a ketogenic diet exploit a fundamental flaw in cancer cell metabolism and increase the effectiveness of treatment for non-small cell lung and pancreatic cancer? They are working off the premise that relative to normal cells, cancer cells require more glucose to overcome a defect in their mitochondrial metabolism. The high-fat, low-carbohydrate ketogenic diet deprives cancer cells of glucose and forces them to rely on their flawed mitochondrial metabolism. This causes oxidative stress in the cancer cells and appears to make them more susceptible to chemotherapy and radiation. This clinical trial has been funded to investigate whether this diet can improve outcomes for patients with these cancers."

 As always, I strongly encourage you to talk with your healthcare provider or oncologist before leaping into a new diet.  But if you are even a tiny bit interested...

Seriously, have we got anything to lose? 

Except possibly those loathsome cancer cells...