Family, Friends, Hope, Strength, and Prayer

Susan Wells

Susan Wells (left) and friend at Loon Lake, New Hampshire

• Diagnosis of stage II pancreatic cancer
• Chemotherapy with FOLFIRINOX
• Gemcitabine and radiation plus a clinical trial
• Whipple procedure
• Post-surgery gemcitabine

I have always been healthy and was rarely sick.

I tried to eat healthy (except for too much chocolate), exercise regularly, and I didn’t smoke or drink. I only took one prescription medication and vitamin supplements. For my age of 66 I thought I was doing well until the last Thursday in March of 2014, when I developed some digestive issues. At first I didn’t think much about it because I had been at a banquet the previous night. But the symptoms of feeling full and bloated after eating, with excessive belching and gas, continued, so I thought it was my gallbladder. My nurse practitioner felt it was something more, so she wanted to investigate it further. I had a CT scan, which confirmed that I had a mass at the head of the pancreas. When I heard that, my first thought was “I’m going to die,” because I knew bad things happened to people with a diagnosis of pancreatic cancer.

Finding Treatment

Jennifer, my nurse practitioner, referred me to University of Iowa Hospitals & Clinics, in Iowa City. On April 6th I had an ERCP and a stent was placed in my pancreatic duct. The doctor did not do a biopsy at that time because the mass was covering the pancreatic duct. One week later I had an endoscopic ultrasound with a biopsy. The pathology report came back: adenocarcinoma. I then saw Dr. James Mezhir, the surgeon, and he recommended that I have a chest/abdomen/pelvis CT. He was the kindest doctor. He was knowledgeable and caring. As he talked with me, he held my hand.

This is a summary of what he basically said to me. After looking at the CT, he said that my lungs, liver, and pelvic area were without cancer. He showed me where my mass was located on the CT. It was about the size of a peanut and was very close to a vessel.  He said, “I know I can get that out but I would like it to be smaller so I can get a better idea of its location in relation to the vessel.” He recommended chemo and maybe some radiation to decrease the size of the mass. He continued to hold my hand and said he knew I was scared and I was trying to be very brave.  He went on to say that his mom was about my same age and he loved her dearly so he was going to do the same for me that he would for his mom. That was all I needed to hear. I trusted him with all my heart.

Treatment Starts

I was assigned an oncologist. We did not connect when we met. He was not personable and he was very clinical and matter of fact. He didn’t seem to care about me as a person. He talked about data and my age. He said because I was older he was not going to give me the strongest chemo and even with treatment I only had a two out of 10 chance to live. He took all of my hope away from me.

I went home and thought about not going through with treatment. I called my nurse friend who was also being treated for pancreatic cancer. She told me to call the surgeon’s nurse to inform her of my experience and request her oncologist, Dr. Daniel Berg. I called and got an appointment with him. Dr. Berg was the complete opposite of the first doctor. He was informative, kind, and positive. I had my hope back. He talked about pancreatic cancer and treatment. He told me I was in a very, very small subgroup with a high probability for a cure (I was stage II). He told me he would start me out on a tough chemo combination (FOLFIRINOX) but he knew I would be able to handle the treatment. That’s what I needed to hear. I was ready to begin my journey.

Things happened fast. I had an infusaport placed on April 30th and started my chemo on May 1st. Both the pharmacist and chemo infusion nurse went over the chemo drug and what to expect. My first treatment with the combination (oxaliplatin, irinotecan, leucovorin, and 5-FU) went well. I mistakenly thought the treatment was going to be “a piece of cake.” The next dose, as well as the following treatments (total of four treatments) were harder. Oxaliplatin was probably the hardest of the drugs.

Side Effects Kick In

I became very sensitive to cold temperatures. It was the middle of May and I had to wear a coat, hat, gloves, and occasionally a scarf across my mouth and nose. I wore gloves to reach into the refrigerator. All food and drink had to be at room temperature before I could eat or drink. Food began to taste metallic and my appetite decreased. I had issues with dehydration and went to the infusion suite between chemo treatments for extra IV fluids.

I developed horrible gas pains and my doctor started me on Creon to supplement for my pancreatic enzymes. I also saw a nutritionist who gave me many great ideas about food and drink to improve my nutritional status. Weight became an issue. My neighbors, friends, and family helped me by bringing meals. Many times I could not eat but I was grateful for the food because I was very tired and had little energy to cook for myself.

Another big side effect was the loss of hair. Before this became an issue for me, I rarely gave any thought to people who were undergoing chemo treatments and had lost their hair. I didn’t realize how important hair was to me until I had none. My hair was part of what made me feel good about myself and my appearance. My very dear friend, who is also my hair stylist, suggested that I buy a wig. She said that she had taken several clients to an excellent wig specialty salon in a nearby city. She made an appointment for me and took me to buy a wig. The wig was almost like my own hair. Once again, I felt good about myself.

The final difficult thing for me was that everyone kept telling me that I was brave and strong. Many days I didn’t feel that way but I thought I couldn’t tell them that because I would be letting them down.  Even on bad days I was pretending that I was feeling OK. Finally, one of the cancer nurses told me it was OK to say that I was not feeling particularly brave and strong. It took me a while to say those words but when I did people told me they understood and asked what they could do to help. The last thing I learned was that everyone who offered truly wanted to help. It not only aided me but it helped them because that was the one thing they could do to feel like they were participating in helping me get well.

What I didn’t realize was at the time all of my other side effects were occurring my friends were concerned because I was having some signs of “chemo brain.” My thinking was a little disorganized. I had some difficulty concentrating and putting task steps together. Luckily, this mental fog cleared with the end of treatment and recovery.

A Change of Plans

I was getting my chemo treatments every other week. The day I came for my third treatment Dr. Mezhir’s nurse came into my room to talk with me. She told me he would not be doing my surgery because he was on a medical leave of absence. I was speechless. I had put my faith and hope into his ability and didn’t know what to do. I made the decision to go to another hospital. My oncologist said he would make the arrangements.

Then about a week later when I was in the infusion suite getting IV fluids, a nurse came to my door to ask if I was taking visitors. I said “yes.” In walked Dr. Mezhir pushing his IV pole with chemotherapy infusing. He asked if he could sit on the edge of my bed. He once again held my hand and talked with me. He said, “The chemotherapy you are getting is very tough and even if you think you are not doing well, you are. You just don’t realize how brave, strong, and well you are doing.” Then came the subject of surgery. He told me he knew I was worried about who would do my surgery. He said that he had taken care of that and I no longer needed to worry. He talked with a friend that he trained with at Memorial Sloan Kettering Cancer Center about my case. His friend was now at the University of Wisconsin in Madison and had agreed to do my surgery. (Note: Dr. Mezhir has since passed away.)

I felt relieved because I trusted in Dr. Mezhir and knew he found only the best surgeon for me. However, Madison was a three-hour drive from Iowa City. I talked with my family and friends, and they all agreed this was the best solution. I would go to Madison for my Whipple surgery. My oncologist would make all the arrangements.

I became sick about the middle of June and my lab work indicated that my stent was not working. I was admitted to the hospital and had a stent replacement.

Time for Surgery

A few days later I received a call from Dr. Clifford Cho, the surgeon in Madison (he’s now at University of Michigan Health). He wanted to know if I could come to his office so he could meet and talk with me. I was finished with the FOLFIRINOX so I made an appointment to see him on June 26th. He too was very knowledgeable and kind. He scheduled a diagnostic laparoscopy for June 28th. He wanted to do this procedure to make sure the cancer hadn’t spread to areas that weren’t detected on the CT. Luckily he didn’t find more cancer. If he had, he would not have done the surgery and a new plan would need to be formulated by the oncologist. I was relieved that no more cancer was discovered and I could have surgery.

Detour into a Clinical Trial

The first chemo did not decrease the size of the mass enough so Dr. Berg planned radiation and more chemo with gemcitabine. About one week before I started chemotherapy and radiation (July 21st) he told me about a phase I clinical trial at the University of Iowa. This trial used high dose intravenous ascorbate (high dose IV vitamin C). I would get the chemo and radiation as planned and they would add ascorbate. I didn’t see a downside to this addition so I agreed to participate. I met with the radiation oncologist, one of the researchers for the clinical trial. He felt that I needed a PET scan. The scan did not show anything else that was abnormal, which meant that I could begin treatment. My treatment would consist of 28 days of radiation and ascorbate Monday through Friday. On every Monday I would receive gemcitabine before the radiation and ascorbate.

This part of my treatment was much easier than the first. Every day that I went to radiation oncology I was assessed and then my IV ascorbate was started. The infusion ran for 30 minutes and then I received the radiation treatment. The entire infusion of the ascorbate lasted 1½ hours. I was assessed frequently during the infusion. A final assessment was done before I went home for the day. The only side effect of the ascorbate was a dry mouth, which cleared within a couple of hours after treatment. Otherwise I did not have any problems with any of the treatments.

Back to My Whipple

I finished the treatment at the end of August and was scheduled for Whipple surgery on October 6th. In the beginning of September I went to Madison for a chest/abdomen/pelvis CT. It indicated that the size of the mass had decreased.

The surgery turned out to be the most difficult part of my treatment. Dr. Cho told my friends that I did well during surgery and I did not require any blood transfusions. The most remarkable part, he said, was that the pathologist had a hard time finding any living cancer cells from my tumor and the lymph nodes that were sampled. In fact, the pathologist was so surprised he double-checked the specimens.

I was hospitalized for 10 days because my recovery was slow. During that time I was not eating or drinking well so total parenteral nutrition (TPN) was started. Before I was discharged I developed a chyle leak (a milky-looking fluid made of lymph and free fats) from a drainage tube. I was discharged home with TPN and a drain. I returned to Madison 10 days later for a check-up, and was sent home with my TPN and drain. I did not do well at home because I wasn’t taking pain meds as needed because they made me sick, nauseated and dizzy. I was given Zofran but that didn’t seem to help. I also was not eating well. By Halloween I was admitted to the University of Iowa Hospital with dehydration and in need of pain control. I was there for one week. During that time the pain team found a medication that I could tolerate in low doses to alleviate the pain.

I started my final chemotherapy with gemcitabine on December 1st. On January 26th I had a chest/abdomen/pelvis CT, and no cancer was seen. I finished chemo in the middle of March, and had a CT at the beginning of April. Since that time all of my CTs have been clear.

Life After Pancreatic Cancer

So far I have been very blessed. I have had excellent medical care and support from family and friends.  The three things in addition to family and friends that helped me were HOPE, STRENGTH, AND PRAYER!

I know that since I was in phase I of the clinical trial, no one can be sure that the ascorbate played a role in my good outcome. However, I will always believe that it did.

Finally, I would strongly encourage people to consider participating in clinical trials because without them, we would never find solutions to fight cancer.