Monday, March 25, 2013

Survivor Story #10

This article was written one year ago. How is he doing today? Well, he's gearing up to walk the Purple Stride in New York and would love your donation here!

In South Nyack, a Triumph Over Cancer Against Odds

John Whitley sounds off on combating cancer and supporting others in need

April 3, 2012

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I hope that nobody reading this ever has to hear their doctor say, "I'm sorry, you probably have about 12 months."

Originally from Yorkshire in the North of England, I have been living in South Nyack since 1988, and, until the age of 56, had been reasonably lucky health-wise until my roller-coaster ride of 2011.

In January, pancreatitis put me briefly in Nyack Hospital. That was followed by surgery to remove my gall bladder in March, and then a referral to specialists at New York Presbyterian who initially diagnosed me with bile duct cancer and recommended the Whipple Procedure—a five-hour surgery which removed part of my pancreas, part of my liver and part of my intestine. (Then the magic hands of Dr. John Allendorf put everything back together again.)

Two weeks later, I went back for my first post-surgery appointment. It had taken the operation to reveal the fact that I did not in fact have bile duct cancer, but pancreatic cancer. However, the surgery had removed 100 percent of the growth and I was introduced to Dr. Saif, a cheerful Indian oncology specialist who, at our first meeting, explained that I was not only now his patient, but "his buddy."

Any preventative chemotherapy had to be put on hold for several weeks for me to recover from the surgery, and it allowed plenty of time for all the necessary tests prior to the planned treatment.

On July 12, I went back for my final pre-chemo appointment and was led into a room where Dr. Saif, two interns and my case manager were waiting. He gently broke the news that the previous day's scan had shown that I now had a 1.8 cm tumor in my liver—the cancer had metastasized, and I was now classified as stage four. I asked what the worst case scenario would be, and he said, "I'm sorry my buddy, probably around 12 months."

You know those rides at Disney where the floor drops out from under you? That's exactly what I felt at that point.

Well, after that, things happened pretty quickly—the following day I went back to NYP for surgery to install an intravenous port just below my collar bone, and the following week, chemotherapy and participation in a clinical trial started. From day one I decided there was only one course of action: to fight, fight, fight.

The staff on the 14th floor of the Herbert Irving Building at NYP came to know me as the guy with the English accent and the constant smile of optimism on his face.

Some people remember dates of weddings, births, other special occasions; I remember September 16,2011 at 10:16 a.m. Dr. Saif called, explained that although he knew I would be at the hospital the following Tuesday, I had to know the news straight away. I could hear the excitement in his voice.

"My buddy, the scan you had yesterday showed that the tumor in your liver has disappeared to the extent where it cannot be detected—you truly are one of the lucky ones."

It wasn’t until my appointment the following week that I truly understood the significance of the news—no more pancreatic tumor, no more liver tumor, no tumors period.

You can continue reading his story here.

Thursday, March 21, 2013

Survivor Story #9-Fulfirinox and NanoKnife

This survivor story came to me through a friend of my parents. He just emailed his story to my Dad today, and gave me permission to post it here. He also gave me permission to share his email address: keithane@bellsouth.net

Here is his story:

First of all, let me give you some background ...

I was diagnosed with stage 1 pancreatic cancer on January 29, 2012. My diagnosis followed a biopsy done on a tumor that showed in the head of my pancreas on CT scans taken in mid-January in conjunction with a hospital stay to resolve deep vein thrombosis issues that resulted in blood clots going to both lungs (pulmonary embolism). I was scheduled to have Whipple surgery in late-February at the University of Miami, Sylvester Cancer Center. However, before that could occur, I re-entered the hospital with severe blood clotting in my Vena Cava. While getting rid of them, further CT scans and MRIs showed 33-plus lesions in my liver ... which were eventually diagnosed as malignant. At that point, I graduated to stage 4 ... lucky me!! And, at that point, I was told that I was no longer a candidate for a Whipple Procedure.

It wasn't until April 2012 that we were able to actually select an oncologist. We investigated two cancer treatment centers: MD Anderson (Orlando, FL branch) and UMiami Medical Center, Sylvester Cancer Center. The chemotherapy recommended by both was identical (details following). Since the Sylvester Cancer Center was in Miami (close to our home) and the treatment requires a lot of oncologist intervention (appointments), we selected Dr. Caio Rocha Lima (305-243-7770) at Sylvester.

My chemo cocktail is called Fulfirinox. It is composed of:

1. Oxaliplatin (side effects: neuropathy, fatigue, nausea, and vomiting)
2. Leucovorin (Folinic acid)
3. Irinotecan (diarrhea, myelosuppression)
4. Fluorouracil (myelosuppression, mucositis, dermatitis, diarrhea)

The first three are infused in a clinic along with Dexamethasone (anti-nausea steroid), Fosaprepitant (long-acting anti-nausea) and Palonsetron (long-acting anti-nausea) plus potassium and magnesium. This takes about 10 hours. Then they connect me to a small portable pump and infuse the Fluorouacil into me over the next 46 hours (at home). After the pump has been disconnected for 24 hours, I then receive a Neulasta injection which restores white blood cells.

I received 12 of these clinical chemo sessions. Then the neuropathy caused by the Oxaliplatin got so bad (loss of feeling in feet and hands) that they extracted that from the cocktail ... and I received another 4 sessions with just the remaining three medicines ... which reduced the clinical treatment to 8 hours each.

God has blessed me to be able to tolerate these treatments with minimal side effects. I experienced neuropathy, energy loss, and minor diarrhea. I countered the energy loss by a special diet and exercise (trying to walk 3 miles daily ... not always possible to go the full 3 miles but did what I could). And .... my hair turned white and became very thin and sparse. Never lost my hair ( yippee! ).

At the beginning, the pancreas tumor measured about 2.5 x 2.3 cm. And the liver lesions were small but numerous (33-plus). A CT scan after 7 sessions showed a 50 percent reduction in tumor size and no evidence of the liver lesions. A CT scan after 14 sessions showed a further reduction in tumor size to about 0.5 x 0.5 cm.

At that time, my oncologist recommended me for a NanoKnife Procedure (Google it ... there are some great videos that explain it). Basically, it's a non-invasive procedure by which surgeons insert wires through the abdominal area below my rib cage and directly into the pancreas ... surrounding the tumor, and then they shoot 3000 volts of DC electricity between the wires and the tumor is electrocuted. I received this procedure on 12/12/12. Subsequent CT and PET scans have indicated no tumors or lesions in any organ!

In retrospect, having the NanoKnife Procedure is super better than the Whipple. I am very fortunate to be connected with UMiami, who basically pioneered this procedure for pancreatic tumor treatment in the USA. I was pancreatic cancer patient No. 30 to receive it.

So that's the "short version" of my medical journey during 2012!

My other treatment ingredients have been:

1. Surround yourself with a positive family/friends support group ... don't be afraid to share your "story" with them and seek their prayer and moral support.

2. Be positive ... mind over body IS possible.

3. Turn over your medical situation to God. He answers prayers ... so be very careful what you ask for!

What else can I share with you? Let me know ...

You both are now in my prayers!

Be strong, be possible, be healthy (as possible).

Keith

Wednesday, March 20, 2013

Survivor Story #8: 10 years post Stage 4 Diagnosis

This article was written in 2010. At the time, the patient was 10 years past stage 4 pancreatic cancer diagnosis. This is from a site sharing stories from the Mayo Clinic. I'm not associated with any hospital or treatment center. The only group I belong to is people who want to kick pancreatic cancer's butt!

Robert Horner was 76 years old in 2000 when he started to experience severe abdominal pain. After getting his heart checked and finding nothing wrong, a complete screen was done, showing Robert’s liver enzymes were off the charts.

“After three weeks of countless tests and exams, the radiologist called my wife, Shirley, and I into his office and pointed out an abnormality in my pancreas,” Robert says about his visit to a local hospital in Naples, Fla. The doctor diagnosed his cancer at stage IV, which is the most severe and life threatening of cancer stages.

While Robert’s medical concern was continuing, he and his wife were planning to migrate north to their summer home in Pennsylvania. Once they returned home, a surgery was scheduled to remove Robert’s cancer at a nearby hospital. After four-and-a-half hours of surgery, the doctor was unable to reach or remove any of the cancer. Robert was given six months to live and told to go home and spend his remaining days with his family and friends.

Neither Robert nor his supporters were willing to give up just yet. With the help of Robert’s close friend and former Mayo Clinic surgeon, Dr. Robert McKee, Robert tried another option before finally deciding to make a trip to Rochester, Minn.

Robert was able to get an appointment within five days of calling, making his first impression of Mayo Clinic very positive. Dr. Stephen Frytak, a Mayo Clinic medical oncologist, decided to start withchemotherapy and radiation, hoping it would shrink the tumor to a more operable size. After eight weeks of treatment, another appointment was made, and just as hoped, the tumor had shrunk.

On January 6, 2001, after nine-and-a-half hours of surgery, Dr. Michael Farnell, Mayo Clinic gastroenterologic and general surgeon, proudly announced he and his team were able to fully remove all of Robert’s cancer.

“With the support of my talented operating crew and able assistants, a difficult pancreatic tumor resection was accomplished safely. The procedure was particularly complex because of the need to both take down the prior operation and to remove a portion of the portal vein. I remember to this day his wife, Shirley’s, elation when the good news was shared,” says Dr. Farnell.

“And I remember this moment as one of the many miracles of my life,” Roberts recalls. “Everything had come together to result in me finally being cancer free.”

Visits to Mayo Clinic in Rochester continued every six months until Dr. Frytak, who both Robert and Shirley had grown very fond of, announced his retirement. With their close friend and doctor now leaving the practice, Robert asked if there was a doctor at the Mayo Clinic in Jacksonville with whom he could visit instead. Sure enough, there was. Robert started visiting Dr. William Maples, a Mayo Clinic medical oncologist, in Jacksonville twice a year for check-ups.

During one of these appointments, tests caught a small tumor on the upper lobe of Roberts left lung. A wedge resection was performed and no other treatment was needed for Robert to be cancer free once again. The removed lung tissue was later identified as the same type of cancer previously removed from his pancreas.

Continuing on with life only required minor changes said Robert, but lack of energy was a frustration, especially when it came to trying to maintain an active role in the local affiliate of Habitat for Humanity.

“I could no longer raise walls and put on roofs or siding, and I started to wonder if my presence was even helping,” Robert said. “This is when I came across an inspirational article about an athlete who lost the use of his legs. He was able to turn his spirit around on his own by looking to the future and deciding to live life by ‘focusing on what’s left, not on what’s lost’. I decided I had to do the same.”

This year marked the 10 year anniversary of Robert being free of pancreatic cancer. Robert and his wife decided it would only be appropriate to share their happiness with the Mayo Clinic doctors who helped them reach this milestone.

The original article is posted at: http://sharing.mayoclinic.org/2010/08/12/ten-years-and-still-cancer-free/

Tuesday, March 19, 2013

Survivor Story #7

From thread on acor.org

Hello all, I read a lot of sad news on this list, desperation, lots of questions, few answers. However: this February 23rd I will have five years of survival with stage IV pancreas cancer. I have had metastases to liver, lungs and spine. Despite all the statistics, there you go. This is with adenocarcinoma. I eat no meat, sugar, white flour and avoid dairy, but I cheat about 10% of the time. I exercise every day, go to weekly support group and see a therapist, seek out any trial treatments that I can get, and yes, have made arrangements for the end. When I was first diagnosed, they thought I was stage I and operable (lucky for me they did not know I already had metastases to liver and lungs I guess). My surgeon said that all pancreas cancer was fundamentally inflammatory in nature, and whatever I could do to decrease inflammation would be good. today I can not count how many rounds of chemo I have had, but presently I am on oxaliplatin, irinotecan and xeloda without pain. Take heart caregivers. Best wishes, Yolanda

dx 2/23/08, surgery 3/3/08, relapse with liver met 7/08, NED till 6/09 when CA 19-9 began to rise, evidence of lung mets

Survivor Story #6

From a comment at washingtonpost.com:

Ms. Berman sounded like she made the right decision for herself. I made a different decision. I was diagnosed with Stage IV pancreatic cancer 4¹/₂years ago. I chose to fight it aggressively. I didn’t expect more than six months, but I wanted to give it a shot.

I am one of the very, very few persons still alive so long after such a diagnosis. The effects from the chemotherapy were manageable. For most people, I recognize, they are not, but I was lucky. My oncologist and I wrote a book, published last year, called “Pancreatic Cancer: A Patient and His Doctor Balance Hope and Truth.”

Michael Lippe, Shepherdstown, W.Va.

See original article and comment here:

http://articles.washingtonpost.com/2012-05-07/national/35455213_1_pancreatic-cancer-esophageal-cancer-radiation-side-effects

Also, here is a link to Michael's book about his experience: http://www.amazon.com/gp/product/1421400626?ie=UTF8&tag=washingtonpost-20&linkCode=xm2&camp=1789&creativeASIN=1421400626

Survivor Story #5

From a thread on Cancer Compass

To start off I want to wish you and your father the best. My wife a little over 4 years ago was diangosed with Stage IV Pancreatic Cancer. She was seen at a major Cancer Hospital. They scheduled her 4 yrs ago to do the Whipple Surgery. They started the Sugery and went in Laproscopically and they closed her up because they found spots on her liver. The following morning they came and told her and I to get her affairs in order because she had 3 to 6 months to live. She immediately of course was upset, and I called a friends who had a friend who was the Administrator of a large Oncology Group.

She two days later went to see them, and what they had to say convinced us that she had a chance. They put her on GTX Chemotrherapy. She was on this for two and half years and was doing well. But after two and half years, her tumor markers got a bit elivated so they switched her Chemo, and and for another year and half she was doing well. The Chemo for four years was taking a toll on her body. Her Oncologist who is the most caring Doctor, made a call to to a well Known Surgeon in the Field and he agreed to see my wife, They were considering doing the Whipple four years after being on Chemo. The Surgeon and his staff agree she would be a good candidate, and her Oncologist agree. So my wife decided and on August 1, 2011 She had the Whipple Surgery. The Surgery went well but she had an infection which they got a handle on. She was able to go back to work on October 19th. She works in a School. Since then she has been getting better and feeling better.

So far her tumor markets are very low, which is greate. Her Oncologist has not decided if she needs Chemo or not. but if he decides to it will start in January and it will be only short term. After the possible chemo, she will be seen twice a month for blood work and have a PET Scan every four to six months.

Through out the entire 4 years and even now she had maintained a great sense of humor, and strong determination. She has faith and a strong belief that she will make it. Also important has been her support from family and friends. We all love her because she is such an amazing woman, funny but strong, and always has faith. In the four years she only missed work due to her surgery. In the four years prior she would have chemo in the Morning and go directly to work. She never has complained, and is a true fighter.

Read the original message and thread here:
CancerCompass: RE: Dad Just Diagnosed with Stage IV Pancreatic Cancer

Survivor Story #4

From a thread on Cancer Compass:

So sorry about your dad. My husband was diagnosed with stage 4 pc in Nov of 08, and he is a 3 year survivor.

You will all have a tough road ahead, but don't give up hope. My husband did not have lung involvement, but had liver mets and peritoneum mets. After 6 months of chemo after diagnosis, he went into total remission for 6 months. He was put on gemzar and tarceva first. It no longer worked when the cancer came back. They started him on folfirinox then.

The folfirinox is the big guns as his oncologist calls it. It seems to be a good drug to start out with that's for sure. Everyone is different in how they tolerate this treatment. Some people breeze through, others have a harder time. My husband had a hard time with it, and they had to gradually cut back on the chemo drugs used until he is down now to one drug, 5FU. But he is responding to this very well. He is stable. The tumor has shrunk, and the liver mets are gone again.

You are asking all the right questions, and doing your research. Your dad is very lucky to have you in his corner.

Yes, you will see some definate changes in your dad. This is a tough road, physically, and emotionally for him. He's just absorbing what he's been hit with.

Blessiings, and keep us posted.

Gretchen

See the thread and original post here:
CancerCompass: RE: Dad Just Diagnosed with Stage IV Pancreatic Cancer

Survivor Story #3

From a thread on Cancer Compass:

GREAT advice coming from a WARRIOR! Ashley, your mindset reminds me of my wife of 33 years. In mid-2011 when she was told 3-4 months she'd be gone w/o treatment and possibly adding an additional 2 months of life with treatment but 6 months max of LIFE, she treated this beast of a diagnosis/prognosis with even a bigger beast within her. Not just with her extraordinary physical and mental capacities but with her FAITH and HOPE that her creator would be merciful. He was just that, merciful and gracious to provide her with a massive support system of family, friends, healthcare professionals, advancements in pancreatic cancer research and studies and the ability to embrace and tolerate almost a year of treatments to beat the odds of this stage 4 pancan. And even with her being in the clear since last June with no evidence of progressive metastatic disease and no tumor recurrence, she remains vigilant, prayerful and always reminds me as her caregiver that her begging and pleading for God's mercy will never cease. What I've learned thus far as a caregiver is to be humble and excuse everyone who you might meet on your path through this journey who have labeled stage 4 pancan as a "death sentence." Educate them with kindness and truth about your personal experiences of fighting for your life.

Read the original story and thread here:
CancerCompass: RE: Stay positive with Stage 4 Pancreatic Cancer!! :)

Survivor Story #2

From a Cancer Compass thread:

RE: Does anyone have survivor stories beyond the 5 yr statistic?

Your Dad should have a great chance with catching it early never give up hope my husband was given 3 months to live with stage 4 pancreatic cancer and that was 6 years 3 months ago its come back twice in his liver which last year they cut off 20% and it has now grown back in less than a year. His ca 19-9 is going back up again and it might be headed to his lungs but we'll deal with that if it comes, he was on chemo 5 out of 6 years but he feels good walks our Irish/dane dogs at least 5 miles almost everyday so put your seatbelts on and get ready for a rollercoster ride but never,never give up and don't believe all the statistics, just keep up the faith and keep fighting you are in our thoughts and prayers. Bobbil

See the thread and the original post here:

CancerCompass: RE: Does anyone have survivor stories beyond the 5 yr statistic?

Survivor Story #1

Roger was diagnosed in August 2004 with adenocarcinoma with liver metastases.

Cancer survivor Roger Stump of Stapleton shares his story to encourage others

Published: Tuesday, November 20, 2012, 8:26 PM Updated: Tuesday, November 20, 2012, 8:31 PM

By Deirdra Drinkard-McCool | AL.com
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Even though the odds of survival were low, Roger Stump survived stage IV pancreatic cancer. Almost eight years cancer free, Roger and Brenda Stump have moved on to other significant milestones in their lives -- celebrating their 40th wedding anniversary. (Submitted by Cookerly Public Relations)

STAPLETON, Alabama – Eight years after being diagnosed with stage IV pancreatic cancer, Roger Stump of Stapleton hopes to encourage and inspire other cancer patients by sharing his survival story.

In May of 2004, Stump said he got extremely sick at work. He waited until his son got off work before visiting the hospital.

Originally, Stump was diagnosed with a kidney stone, which was treated. After receiving treatment to break up the stone, his doctor told Stump that he had good and bad news.

"[The doctor] said the stone was gone, but I had pancreatic cancer," Stump said. "I asked if that was bad."

Read the full story here:

Cancer survivor Roger Stump of Stapleton shares his story to encourage others

Welcome.

First of all, let me just say that I am truly sorry you are here. Because, if you are, it's most likely that you or a loved one has recently received a Stage Four Pancreatic Cancer diagnosis. My heart goes out to you and your loved ones.

And now, let me tell you that I'm also glad you are here. Because, I'm sure you've already read and heard plenty of bad news. Well, this blog is about the good news. There are survivors. There are stories of hope. And it was time for them to be located all in one place!

Please, let's have this be a community effort. If you know of someone who is a survivor, or you find a survivor story online that isn't already listed here, please let me know about it or post it in the comments.