Category Archives: Treatment for PC.

Thinking outside the box – UPDATE

Thinking outside the box – UPDATE
Fourth of July fun at Z-Farm

The past few weeks have been an emotional roller coaster ride for my family, friends and me. Confirming that the malignant adenocarcinoma had returned to the head of my reconstructed pancreas and having my oncologist tell us without treatment we have just months would send any human being to a deep dark place.

Having survived the absolute most fatal cancer for eight years has truly been a miracle thanks to God, you my prayer warriors, my fantastic medical team of primary care doc, surgeons, radiologists, gastroenterologists, radiologists, oncologists and the PA’s and nurses who assist them at Mayo Clinic in Jacksonville, FL.

But, realistically, we always knew there would be a day when the cancer would take over.

For a time we placed our complete trust in a non-approved trial drug Herceptin Hylecta (trastuzumab and hyaluronidase-ovsk) recently used as immunotherapy treatment for early breast cancer in HER2 positive patients, with great success I might add. Tests were run to determine the DNA of my tumor and provide the best possible match for the gene therapy. The prayer was that I might be the first pancreas cancer patient to receive the treatment…and that it would destroy the cells. That was truly our only hope.

When we asked if surgery could be performed to remove the tumor, the answer was no, there has not been success in the past with patients with similar medical situations. So truly our only hope was in the trial drug. So, we began the infusions.

Entering the chemo suites that familiar smell and feeling rushed over me like a bad dream. But, I knew this treatment would be different. My oncologist told me I would not lose my hair, I would not experience nausea but would possibly have a rash. A rash? I could surely handle that. But, it was just returning to this place I had avoided for two years, that sick feeling returned. I was happy to see a familiar face, a nurse who sat with me the entire infusion watching for adverse reaction but more importantly, chatting in light conversation.

As the test reports came in my case was presented by my oncologist to the Thursday tumor board, a group of up to eighteen Mayo docs from different departments. (Get a second opinion? Why when you have eighteen of the finest doctors in the world collaborating over your MRi’s, scans, blood work and pathology reports.)

One of the surgeons attending that day probably said, “Oh this is Judi, I am familiar with her case. She is the one who defies all of the norms with her PC.” But most importantly, he thought he had a solution. He presented his ideas to the board and they all agreed.

Shortly after the meeting my oncologist phoned. His excitement came right thru the phone as he explained what the surgeon was proposing. He told me surgery was being offered to me and to expect a call from Dr. Stauffer.

When Dr. Stauffer called I listened intently to his plan. He began by stating, “Judi, we need to think outside of the box with you.” He explained they would like to surgically remove the tumor, a suspicious lymph node behind the mesenteric artery as well as a lesion that had shown up for years on my liver, but had not grown in size in any of my scans. He said, if you agree to the surgery, I believe it can work.

My reaction was, “What have I got to lose?” He replied, “You have nothing to lose and life to gain.”

I have received two infusions to date and am scheduled for a third in early August. Scans and tests will be reviewed to check results of the infusions and to be used in the open surgery that will be performed August 17th.

Many of you are praying for me and as you have heard me say in the past, I truly believe this is the explanation I have for my survival. God is listening to your payers, and granting them. For this we are eternally grateful. So, again, I am asking for your prayers for the doctors and nurses on my care team to receive what they need to have a successful surgery. Again, not just for me but to make surgery a possibility for other PC warriors with resectable tumors.

Thankful for all of my prayer warriors and thankful for a surgeon who is willing to think outside the box.

November is Pancreatic Cancer Month…Podcast

November is Pancreatic Cancer Month…Podcast

In 2019 Leslie Bishop, Field Development – Boston Scientific< Inc. produced a podcast to be used during windshield time by employees designed to give a patients perspective on a pancreas cancer diagnosis and treatment.

Here is the first of two podcasts:

https://www.dropbox.com/s/z8jz7udua8wsxbq/Living while Dying_ Judy’s Story.mp3?dl=0

In 2020, Leslie revisited me to provide an update on my PC journey as a 6 .5 year survival.

https://www.dropbox.com/s/hqvr5f3oaobjbw1/Defying%20the%20Odds%20-%20Part%202%20with%20Judi%20Zitiello.mp3?dl=0

Waiting for the shoe to drop…

Waiting for the shoe to drop…

October 15th, 2019 was the last time I had a Gemzar Abraxane infusion (chemo therapy) for my pancreas cancer that had metastasized to my lungs. The decision to stop treatment was one I made prayerfully and on my own. As a six year survivor of a lethal cancer with a five year survival rate of single digits, this was a bold move.

My Mayo oncologist, Dr. Mody’s reaction to my decision was surprisingly positive. Last fall I was feeling the effects of prolonged treatment and could actually taste, smell and feel the chemo that had been a part of my life since July 2017 when it was discovered the cancer had moved to my lungs. But, I had become so fatigued and ill, he agreed I needed a break. The holidays were approaching and I wanted to be able to enjoy every moment with my family and most of all my grandchildren who asked when they walked into the house, “Mia, are you in bed today?”

In January of 2018, a CT scan revealed one of my numerous lung spots had doubled in size. It was recommended that chemo be administered every two weeks. So, for as many months I had endured the treatment that would produce flu like symptoms days after and keep me weakened and nauseous.

In mid October of 2019, I contracted an intestinal virus somehow that caused me extreme vomiting and diarrhea and landed me in the hospital for five days. However, the nausea continued after the virus subsided.

The oncologist described my condition beyond the virus as nausea brought on by prolonged chemotherapy…something in my head!

If you follow my blog you know I am a faith filled person. I consider myself to be strong and able to handle discomfort pretty well. While I know the dire statistics that come with this diagnosis, I face life with confidence that God is in control. He determines when He will call me home, not the doctors who treat me with the science He has given them.

I believe He has work for me to do to increase awareness and fight for much needed research that will one day find an early detection for this cancer that kills nearly 20% of us diagnosed within one year.

In the last six years my husband, family, doctors and close friends have supported me unconditionally. They have provided the care I need, whatever it might be, along each set back. God and they have seen me thru some very difficult times.

But, this cancer, that I now look at as a blessing in our lives, has given us so many positive changes. It has brought our family closer to God, closer to one another and also empowered us to start a foundation to fund important research that will result in a simple test that could be administered to patients presenting with family history, predisposition or early symptoms that have been dismissed in the past as other less serious digestive issues.

Every six to eight weeks I go to Mayo for scans and bloodwork to determine the status of my cancer. It is always a time of anxiety and concern as the date approaches. However, I have learned to listen to my body and believe that while I am feeling as good as I can, the cancer must still be at bay.

The last three scans have reported as “stable”. This means that the 13 spots in my lungs, while still evident and growing very slowly, are not at this moment out of control.

I chose to carry on and take in each breath enjoying my family and friends in gratitude for the life we have been blessed with so abundantly until the day …

…the shoe drops.

Who can I talk to?

Who can I talk to?
Psalm 91 gives me peace
My bible and my journal help me fight this beast pancreas cancer

I have a journal with information about people who have been referred to me with pancreas cancer. I keep just a few sentences about them and where they are in their diagnosis. They come from anywhere…friends around the country, family who have googled “PC” and landed at my blog. Mayo docs have asked me if they can send me newly diagnosed patients. They all have terror in their voices. I believe it is what God wants me to do and maybe even why I am still here nearly six years from the day I was exactly where they are.

You see, I didn’t have anyone but my family to help me in those early days. Of course I had my doctors, but they couldn’t help me with the fear I felt. I wanted to speak to someone who was in the battle. That is the impetus for bringing my story to others.

Faith played an enormous part in this journey. It is the first question I ask a new fellow warrior. Quite frankly, I don’t think I could have made it this far without my trust in God. Finding strength in His word, we journey on stronger and confident that no matter what, in the end we all win. We go home to Him and have no more fear, no more pain.

The pages of my journal are filled with small paragraphs. Some of them are highlighted with a marker indicating they have earned their purple wings, as we say.

Today, I added another name to my journal. A 62 year man who is expecting another grand child in June. He was given 9 to 11 months to live just yesterday. Stage 4 pancreas cancer. He is desperate for hope, for anyone who will erase that death sentence. As I spoke with him I assured him I would do all I could to help him by connecting him with doctors who saved my life. Yet, the most important thing I can do for him is to pray for him. He immediately felt our bond. And, I pray he received just a glimmer of hope from a previous day that turned his world upside down.

Last week, due to Covid-19, we were forced to cancel our fundraising event, Champions for Hope that was to take place in early June. This event enables us to fund three promising research projects seeking early detection for this deadly cancer with a five year survival rate of just 9%.

While I wonder how God will provide, I trust He will. I trust because I know this work is ordained. He will bring us others whom we may have never met to carry on His work.

We can’t wait to see the silver lining that will emerge from this enormous black cloud that hangs over the earth today. But, for this moment in time, I will continue to be led by His prompting.

Prayers will be answered, of that I am absolutely positive because that is His promise.

Scan Update

Scan Update
Scan Update

The holidays were really wonderful this year after taking a much needed three month break from chemo treatments. My last infusion was October 15th and the immediate reaction was extremely difficult. I began to have nausea and digestive issues, chill and fever that afternoon. Two days later I visited the ER for fluids and to attempt to stop the symptoms that were continuing. I was admitted and remained in semi-isolation for five days.

After many blood tests and digestive scans it was determined I had contracted some sort of viral infection. Liver enzymes were spiraling in the wrong direction and I was weak and losing weight.

Several IV antibiotics were prescribed and in a few days, as soon as the liver enzymes began the slow return, and the nausea and such stopped, they sent me home.

To say I was dreading the two week appointment for my next chemo treatment was no exaggeration. But, I headed to Mayo for bloodwork and my oncology appointment. As soon as Dr. Mody entered the consultation room I announced I was going to take a break from my treatments.

His reaction was welcomed. “Good”, he said, agreeing with my unusual non-compliance. “Let’s take a break till mid January and see what we need to do after a CT scan.”

We left his office in high spirits and Tom began to make holiday plans for a trip to NYC and our annual Christmas Eve Open House. I was ecstatic.

We filled the next three months with family fun, parties, trips and dinners. Within a few weeks, I was back to feeling almost normal. Well, better than I had in many months.

I tucked my fears deep and partied on, knowing full well I would have to face the CT scan in January and whatever results it would declare, I would have to accept.

Laying on the table during the scan I prayed that whatever God’s will for me would be, we would handle it. I have the best doctors in the field of oncology to lead me and several treatment plans both conventional and even a little experimental to choose from. But, I knew we would handle the news no matter what it was just as we always had with courage and strength found solely in our faith in God.

My blood work looked good, well better then it had, we only needed now to hear what Dr. Mody would reveal.

My son Scott and daughter Lindsay accompanied me to the appointment as Tommy, my Jospeh was unable to attend. He texted to let him know the results immediately. It was great to have them with me.

As Dr. Mody entered the room I felt a rush of worry. He rushed thru the “hello’s” and as his eyes met mine he said, ” The scan was stable. Everything looks the same.” My eyes filled with tears of joy and the kids both joined in my elation. Dr. Mody suggested we go two months before another scan and no chemo treatments.

Had I continued my treatments I would not have been able to make the sweet memories our family and friends shared during this holiday season. I was once again thankful to God who had lead me to this bold decision.

Prayer is powerful. Family, friends, everyone was praying for me. I knew by the texts and phone calls I received they were lifting me up.

My Jospeh and I count our life in increments of weeks and months, choosing to be grateful for even the days we are able to be together. Wouldn’t it be wonderful if everyone lived this way? After all, none of us are promised tomorrow.

Thanking God for His favor and for my family and friends who battle with me every step of this journey.

I tucked my fears deep and partied on, knowing full well I would have to face the CT scan in January and whatever results it would declare, I would have to accept.

Christmas – Chemo vacation

Christmas – Chemo vacation

The metallic taste and the nausea would begin the moment I thought about my upcoming chemo infusion appointment. Don’t get me wrong, Mayo does everything to make the experience relaxing and comfortable with their individual chemo suites complete with a sofa and table for a guest or two and a large smart TV complete with library of about fifty or more top movies /series including The Mayo Clinic – Faith-Hope- Science, a film based on the PBS documentary by acclaimed filmmaker Ken Burns and his associates Erik Ewers and Christopher Loren Ewers. But, it still wasn’t enough to take the feeling away from the poison dripping slowly into my surgically implanted port, working its way into the chambers of my heart and disbursing throughout my body, seeking out those pancreatic cancer cells it was intended to destroy. I truly could taste it smell it and, after 14 months of chemo, I dreaded it.

Truth is, I had somehow contracted a viral infection days before my last infusion October 15, 2019. My already compromised body now was taking on a chemo cocktail that would make a healthy body sick. But we had no way of knowing. The bloodwork taken prior to the chemo prescription being prepared didn’t show anything unusual. As soon a I returned home from my infusion I became ill. This was not my typical routine. The nausea had never come on strong and hard the first day. It was always sort of building and hit hard around the third day after.

Two days later I was admitted into the hospital in semi-isolation to determine the source of my nausea and digestive issues. Five days later I went home only when my liver enzymes reported they were heading in the right direction. Doctors agreed it was a viral infection. It took another three weeks for me to recover. I had lost my appetite and about 12 pounds and was weak from being in bed.

Whatever it was….I didn’t want to experience it again. In just a few days I was scheduled to have chemo again. I could taste it and feel it and was dreading it already.

November 11th I was scheduled and dutifully reported for my blood work and oncology consult with Dr. Mody. But, as soon as he walked into the consultation room, I told him I had made a decision…I was not going to be taking chemo today. I was taking a break. he smiled and said “Good.”

His reaction was just what I hoped it would be. Medically we both knew I should be taking it, however, emotionally I just couldn’t do it. I think he saw that too.

We agreed to schedule a CT Scan mid January. That would give me a three month break. I could enjoy Thanksgiving, Christmas and New Years with our big family. It was perfect.

And, enjoy we did. Grocery shopping, planning the Thanksgiving meal, Tom’s Dad coming down from Cleveland, it was great. Then Christmas decorating, cookie decorating, shopping, wrapping and celebrating, a quick trip to NYC, holiday parties and family, family, family. We were overjoyed.

What will happen January 17th with the CT Scan? Only God knows. We trust that He will lead us to the perfect decision of what treatment, if any we will choose. Until then, I will enjoy feeling whole and not missing out on one moment of one day.

Thank you for this time precious Jesus.

Thomas and Olive
Grandpa, Lindsay Mick and Jude – TPC Tree Lighting
Christmas Decorating
Hudson Yards Lunch
Scotty, Blake, Taylor, Abby, Olivia and Tommy – PVIC Christmas Eve
Taylor, Tommy, Mia, Jayden, Olivia and Abby
Del Frisco’s
Family dinner

Following God’s prompting…

Following God’s prompting…

During my journey I have had to make some difficult decisions regarding treatment options. Praying about these decisions has brought me great comfort. Truthfully, I have given my life to God. We always pray for God’s will for us. This has lifted the burden of worry from my shoulders. Once again, I am thankful for my strong faith and ability to trust in the one who gave me life and already has it all mapped out…regardless of my input.

The month of October we faced a very serious challenge. After celebrating my 70th birthday with a trip to Napa and Vegas, I was hit with some sort of viral infection. (Or so the doctors have guess.) Just a few days after returning home, I took my scheduled chemotherapy infusion. The normal side effects seemed to hit me three days sooner than in the past and I found myself extremely ill with extreme digestive issues. By the end of the week, I was dehydrated and weak, yet still no fever.

Dr. Mody, my oncologist instructed me to go to the Mayo Emergency Department for hydration and blood tests. That afternoon I was admitted and spent five days in semi-isolation. ( Could have visitors but they had to wear gowns, until they determined the source of my condition.) The blood tests revealed declining numbers in my liver and other areas causing serious concern.

My potassium and magnesium needed a boost in one infusion and antibiotics in the other arm. My port could not be accessed for fear of contamination. For four days my digestive issues continued with a vengeance.

Finally on the fifth day, blood tests revealed I had turned the corner and were slowly heading in the right direction. The digestive issues had also subsided. It seemed the full dose of chemo I had received had been just too much for my body to withstand.

But, this was not the end. I continued to feel weak and had lost about ten pounds. (Thanking God I had a few extra pounds to shed.) I had no appetite and struggled to drink the water that would help bring me back. This continued for two more weeks.

Once again, my amazing family, friends and prayer warriors were busy praying. Deacon Dan and Fr. Matt King visited me in the hospital to administer the anointing of the sick and the Holy Eucharist. My bible study group and CRHP sisters from OLSS were lifting me up. Prayers have been heard and answered. I am truly on the mend.

It was time for my monthly chemo infusion and I was dreading it. I had prayerfully decided to ask Dr. Mody if I could take two months off from my treatment to regain my strength and make some holiday memories with the family. He agreed with a smile!

Thanking God for answering my prayers for discernment once again, as He has done with every decision I have made on this journey thus far.

My fellow PC warrior and dear friend Connie Phillips has gifted me with this beautiful nativity to remind me of Mary and Joseph and miracle of hope at Christmas.

I choose to believe God…

I choose to believe God…

They say that pancreas cancer tumors rarely disappear with chemo. Usually the best you can ask for is a stable scan where no new tumors develop and the ones you have don’t show any significant growth. Well, the two images above are a comparison from six weeks ago to yesterday after I completed my chemotherapy regimen of Abraxane and Gemcitabine. The 2.5cm tumor on the right is ALMOST gone.

My oncologist, Dr. Mody did not perform a biopsy on the tumor to determine unequivocally it was pancreas cancer. The pathology reports from the lung resections had confirmed pancreas cancer mets, but some of the tumors may have been benign. We will never confirm scientifically that this tumor was or was not of pancreas cancer origin. But, we do know it almost disappeared thanks to the chemo treatment.

I believe that God heard the prayers of you, His faithful servants. I believe He has more work for me to do. I believe I have been given more time, and I plan to use it to honor and glorify Him every single day.

In two weeks I will begin another chemo treatment plan to hopefully take care of the rest of that tumor. I am so thankful for your positive thoughts and prayers.

They are working.

Losing my hair…

Losing my hair…

Wig or no wig?

Sometime around the third chemo infusion it started. The base of my hair actually hurt. It was a strange sensation. I knew something was different. My first chemo regimen I managed to avoid this startling side effect. But, not this time. Maybe the addition of the Abraxane made the difference. In the next few days my hair began to fall out in chunks leaving long strands of silver white on my clothing. If I grabbed a hunk of hair, it would be left between my fingers. I guess I need to think about a wig.

A trip to the beauty salon was in order. My amazing hair stylist had promised me she would help should the need arise. I was thankful for her. I made an appointment and my daughter met me at the shop. As the long white strands of hair fell to my cape like fathers floating from the sky I experienced a huge sense of loss. My daughter grabbed my hand from beneath the cape and I began to cry.

Why does this beastly disease attempt to steal everything from you?

I have my own arsenal in a God who walks beside me every step of the way. He guards me and He shelters me and He saves me from the snares of battle. Cancer cannot take me, only my Lord can take me home when He is ready.

I gathered my courage and said to myself, I’m going to make some fun of this. I was heading to the Lady Gaga concert in Vegas on my week off from chemo. I pictured myself in a bright purple wig fitting right in to the crowd. The best wig shops had to be in Vegas. My friends would help me pick one out. Besides, tied scarfs looked so boho chic. Maybe that would be the look I decided to embrace.

I am not going to let the beast steal any more of my joy. After all, it is just hair and it will grow back. In the meantime I will wear my baldness as a warrior in the fight for my life, God help me.

The ticking time bomb…

The ticking time bomb…

Every six weeks we face a CT scan and MRI to determine what is happening deep within my lungs with the tumors that were discovered to be metastasized pancreas cancer in late June 2018. Blood work is drawn and can be a precursor for activity of the tumors, but not always. The anticipation we endure is indescribable. It is like living with a ticking time bomb in your body, never knowing when the bomb will go off.

Today the bomb went off. One of the newest tumors in my left lung doubled in size in just six weeks.

The other eight tumors in my right lung remained stable. But now there are two or three in my left lung and Dr. Ko remarked that “the one that grew pretty significantly is concerning.”

My cancer mets are now considered “progressive”.

Now we face decision time. What are our treatment options we ask our radiology oncologist who specializes in lung disease? Dr. Ko works side by side with my hematology oncologist to guide us. His answer today was a possible targeted therapy that would focus on eradicating the tumor with radiation. The plus side is the treatment would offer limited side effects with only a five percent chance of effecting my lung capacity. And, it would not effect my quality of life, which to this time has been amazingly good. The down side is it will not effect the other tumors whatsoever. After the targeted radiation therapy we would typically wait six more weeks for a CT scan. Now that the cancer is progressive, it is impossible to determine if the other tumors will begin to grow as well.

Between appointments we visited our church to talk to God about the latest development and to pray for strength and courage and discernment to make the right decisions. He never disappoints. We both left the church feeling a peaceful calm. Thank goodness we have our faith.

The second option is aggressive chemotherapy. this would in fact attempt to eradicate all the tumors and hopefully make some disappear, the others to shrink. But, the downside is the side effects of aggressive therapy. My quality of life for eight weeks and a few beyond would suffer.

So what do we do?

My amazing husband has two trips planned. One, an annual trip to Vegas for Super Bowl and a Lady Gaga concert…and a trip to Southern California to accompany him to a trade show in late March. Will I be able to make these trips we ask? Dr. Mody studies the calendar and comes up with some dates. It looks like we can make this work.

I tolerated the chemo regimen very well the first time, no reason to think I won’t this time. I might be a little tired, but I know I can make it. I won’t let this stop me from living my best life.

We begin chemo on Saturday. Thank you Jesus!

I hope I can make it to Lady Gaga…