Second Week of Radiation Completed

Its Sunday afternoon and the rain and cloudiness outside seem to set the mood for the day. Friday completed the tenth day of table torture for me. I don't know if my arm is getting shorter or my attitude is. The skin is turning a nice shade of pink on my arm and the location where the primary tumor was removed has begun to ache. Overall its not a bad experience. The treatment itself is painless and I couldn't ask for better treatment from the doctors and technicians at Oschners.

Its been six months since the diagnosis of MCC. The process of dealing with this cancer has completely changed my routine and after six months I have begun to wonder what I did before this. I know that after these treatments are completed that it will be a waiting game. I will receive a PET scan every three months after this radiation is completed. Other than being watchful for any unusual pain or symptom it will a future of uncertainty. I will go back to being retired if possible and enjoy my life as it comes along.

First Week of Radiation Therapy Complete

Its Sunday evening and the house has quieted down. We had my two daughters, their husbands and five grandchildren over for supper tonight to celebrate Father's Day. It gets quite noisy in the house with the grand kids playing with Legos and Hot Wheels. I wouldn't change a moment of the joy of watching those children play. My wife cooked a pork butt roast in the pressure cooker and we had some terrific pulled pork sandwiches and fries for supper. Home cooking is so much better than eating out and besides, I have leftovers for lunch for the week now.

Back to business. This week was five days of radiation therapy at Oschner Hospital at 5 P.M. each day. We set this schedule up so that Terry can put in a full day's work before driving me to the hospital. We've got the trip down to about 1 hour and 10 minutes providing no unforeseen slowdowns of the traffic. Once I arrive the techs take me into the treatment room and have me lay on the table. They place a preformed cast of my head and arm under me and line me up with green lasers. Then there's about ten minutes of x-rays and adjustments to confirm that my arm is in exactly the correct position for treatment.

This is when the pain sets in. Not from the radiation but from the awkward position of my arm. Its stretched over my head as far as it will go and twisted into the correct position for optimum treatment. The treatment is done in at least five segments and I can't move for more than ten minutes. The machine swings around me with its focusing lens opening and closing at each position and dosing me with radiation until it finishes. Once the treatment is over the techs lower the table and tell me we're finished and I can go. That's easy for them to say. I have to reach over my head with my left hand, grab my right hand and pull it down until I can feel anything in it. The wife and I head out for home with a usual meal on the way and arrival at home about 8 P.M.



This picture is exactly like the machine in use at the hospital. The small x-ray machine in the upper right hand portion of the machine is the alignment x-ray used to obtain proper alignment of my arm. The large blue eye looking down is the treatment x-ray and does the necessary work.

Second Surgery

About a month after the first surgery to remove the cancer lesion from my arm I underwent the second surgery to remove the cluster of lymph nodes under my armpit. I didn't look forward to it but I knew it was necessary. The biopsy of the nine lymph nodes removed this time showed no sign of Merkel Cell present in the nodes. However, upon reading the surgical report there was mention of random Merkel cells present in the tissue that was removed with the nodes. I assume that is the purpose of the current radiation treatments that I'm receiving. The area being radiated stretches from my wrist through my armpit almost to my neck. The objective is to kill any remaining Merkel cells that may be lurking in the tissue. I should say any "malignant" Merkel cells.

Remember the date of 27 April. That was the first appointment day I had scheduled with the VA dermatologist to look at my skin. The second surgery actually took place on April 25! If I had not been concerned enough to press for an earlier appointment it is possible I might have been too late.

I may backtrack in a future post about some things that happened between then and now. For now, I will post the current situation and any news that affects my future with Merkel Cell Carcinoma.

Beginning the Treatment for MCC

The first step in treatment for MCC was for me to meet with the surgeon who would perform my cancer treatments. The initial consultation was set up and I met with my doctor at Oschner Hospital. He examined my arm and drew a football shaped circle around the lesion. He explained to me that he would remove the lesion and at least 2 centimeters of clear flesh around the lesion. The purpose for this was to secure clear flesh and to remove all the MCC from that area.

In addition he would remove the sentinel lymph node from my armpit also to check for MCC in my lymph nodes.

He removed four lymph nodes for biopsy and left a drain in my chest for two weeks. The drain was the most aggravating part of the whole procedure. The following week the doctor called me and let me know that the biopsy of the lymph nodes showed 2 out of the 4 nodes with malignant MCC present in them. Because the cancer had metasticide to my lymph nodes he needed to remove all the lymph nodes under my armpit.

However, before proceeding with the second surgery, he scheduled me for a PET scan. This is a Positron Emitting Tomography scan. The machine looks remarkably like a CT scanner only it works in a different way.

I was given an injection of radiated glucose an hour before the scan then left to relax while the injection spread throughout my system. The purpose being that tumors consume glucose in larger amounts than normal cells and if there were MCC tumors present they would glow because of the extra glucose they were consuming. 

A few days later I received a call from the doctors nurse and she told me the PET scan was negative. That was good news and she gave me the date for the second surgery to remove all the lymph nodes under my armpit.

If distant tumors had been found beyond my lymph nodes in my armpit there would have been no further surgery. The spread of MCC throughout the body signals the end of the line. MCC does not respond to chemotherapy and tumors inside the body will grow until the body is consumed by them. The medical team will provide palliative care from that point forward until the end of life. Remember back at the beginning when I quoted the literature. MCC...aggressive and lethal, that's the trademark of this cancer.

I am currently going through 5 weeks of 5 days a week radiation on my arm and chest to try to destroy any MCC cells that might remain. Once that is done I will given a PET scan every three months after that to see if the cancer has returned. 

Let the Confusion Begin

I continued to research information about Merkel Cell and read every site I could find, some several times just to get an understanding about the information. The information was confusing because of the rarity of Merkel Cell Carcinoma. There didn't seem to be large enough numbers of patients with MCC to study the cancer in any meaningful way. There were different treatment plans, different staging and different opinions about this cancer depending on which hospital you were treated at.

The population of MCC patients in this country increases somewhere between 1000 to 1500 new cases a year. That is a very small number and since we are spread across the entire United States it is difficult for doctors to get a handle on this cancer in any meaningful way.

Stage Primary Tumor Lymph Node Metastasis 0 In situ primary tumor No regional lymph node metastasis No distant metastasis IA Less than or equal to 2 cm maximum tumor dimension Nodes negative by pathologic exam No distant metastasis IB Less than or equal to 2 cm maximum tumor dimension Nodes negative by clinical exam* (no pathologic node exam performed) No distant metastasis IIA Greater than 2 cm tumor dimension Nodes negative by pathologic exam No distant metastasis IIB Greater than 2 cm tumor dimension Nodes negative by clinical exam* (no pathologic node exam performed) No distant metastasis IIC Primary tumor invades bone, muscle, fascia, or cartilage No regional lymph node metastasis No distant metastasis   IIIA Any size tumor (includes invading tumors) Micrometastasis** No distant metastasis   IIIB Any size tumor (includes invading tumors) Macrometastasis*** -OR- In transit metastasis**** No distant metastasis   IV Any size tumor (includes invading tumors) Any lymph node metastasis Metastasis beyond regional lymph nodes

The chart you see here is the most common one that I could find that made sense to me. I fall into the IIIA category.

Stage	5-year Relative Survival Rate
IA	About 80%
IB	About 60%
IIA	About 60%
IIB	About 50%
IIC	About 50%
IIIA	About 45%
IIIB	About 25%
IV	About 20%

By this chart you can see that as a IIIA patient I fall into the 45% survival rate for 5 years after initial diagnosis. More about these topics later

Back to the Beginning

Okay, I am continuing to fill in my past history with MCC. I felt that having an appointment to see a dermatologist in late April was not going to be soon enough. I sent the VA email pictures of the growths on my face and the way they were growing and asked for an earlier appointment or an outside of the system appointment if the VA could not see me sooner. They agreed to set up an appointment for the following week at the VA in New Orleans. I went to this appointment and was very pleased with the doctors who treated me.
They examined the growths on my face and determined them to be warts. Using a nitrogen cylinder, the doctor froze the warts and they were to fall off several days later. Since I was on the examining table I asked the doctor to look at the pimple on my arm and see if she could do something for it. I told her I thought it was a pimple and she agreed that it might be. Just to be safe she decided to take a slice biopsy to have it checked just in case it was more than a pimple.

She began by injecting a local pain killer at the site. She then sliced off the top of the bump and placed it in a container. She began to clean the wound and I noticed her frown. She said Mr. Pangle this is cancer. I asked her if she was certain and her reply was that after her years of practice she recognized it immediately. This pronouncement was a surprise and worried me at  the same time. I was aware of the the three common skin cancers and I was prepared to find out which it was. She told me that an answer would be coming in about a week and we would proceed from there.

Well, a week went by and no call from the VA. I decided to call and see what was happening. The doctor on call said he would check to see the status of my biopsy. He told me that my sample had been sent to the National Cancer Institute in Washington D.C. to confirm the diagnosis but he couldn't say anything until that information was sent back to them.

After another seven days I finally received a return call from the VA. For the complete week I was baffled by the need to send my sample to D.C. and was quite worried about what was happening. The doctor who called me was kind and apologetic about the delay and reassured me that it was necessary. He then told me that the sample showed Merkel Cell Carcinoma. He then says that this cancer is rare, aggressive, and lethal. He was kind and we talked about the new appointment I had set up for the following week. Since MCC is so rare the VA doesn't treat patients with this cancer. My appointment was with a surgeon at Oschner Hospital in Kenner, La. He was to begin my odyssey of treatment for this disease in early February of 2015.

Network Issues June 12th, 2015 | Merkel Cell Carcinoma, Uncategorized | No Comments »

Network Issues

June 12th, 2015 | Merkel Cell Carcinoma, Uncategorized | No Comments »

I had hoped to be further along with this blog. For at least a week the web was giving me a bad gate screen when I tried to login to this page. Enough of that. Let me give some background about myself so that I don’t come across as a complete stranger. I am 65 years old and live in south Louisiana; in the Atchafalaya basin to be accurate. I was born a Louisiana boy in the prairie country of St. Landry parish and remain that today. I am a Vietnam veteran having served in the army there from August of 1970 until August of 1971. I am married 40+ years to my wife Terry, have three children and eight grandchildren. Later on I’ll relate to their emotions when I told them of my MCC diagnosis. I just got home from Oschner Hospital in New Orleans. Today I went for the final set up procedures to begin my radiation therapy on Monday. More later.

Vicksburg National Park. Went there on vacation several years back and really enjoyed the history of the park.

Okay, its Sunday afternoon. We’ve gone to church, eaten lunch, shopped at Lowes for light bulbs and returned home. To continue where I left off. I was diagnosed with MCC back in February  2015 so the initial blogs here will be to fill the gaps between then and now. The exact dates early on are a little fuzzy because not knowing what I was dealing with didn’t bother me. It wasn’t until the diagnosis that timing the progress of this disease seemed to be more important to me. It was early January 2015 that I noticed a small red bump on the outside of my right forearm. It was at this time that I was watching 2 small growths on my cheeks and tracking them. I began to research skin cancer because at the rate they were growing it seemed there might be some connection. My researching led me to believe I was growing some of the basic skin cancers on my face. At the same time the red bump on my forearm appeared to be a pimple in progress so I didn’t worry about it. I am 100% VA certified disabled so I called the VA and asked for a dermatological appointment in New Orleans. They gave me a date of April 17, 2015 (remember this date!). I was photographing the growths on my face daily and watching the changes as they grew. I became concerned in late January about the rapid growth so I emailed the VA with photos of the growths and requested an earlier date. They were cooperative and made an appointment for me in early February to visit the Derm department at the NOLA VA.

First Day Blog on Merkel Cell Carcinoma

I’m beginning this blog on a sunny Sunday morning in the heart of the bayou country in south Louisiana. My reason, after having been diagnosed with MCC (Merkel Cell Carcinoma), I went on a search for all the information I could find about this cancer. There is information available on the medical websites that describes this cancer but much of it is repetitious from one site to the next. To quote Wikipedia, “Merkel cell carcinoma is a rare and highly aggressive skin cancer, which, in most cases, is caused by the Merkel cell polyomavirus (MCV) discovered by scientists at the University of Pittsburgh in 2008.^[1] It is also known as cutaneous APUDoma, primary neuroendocrine carcinoma of the skin, primary small cell carcinoma of the skin, and trabecular carcinoma of the skin” end quote. You can read about the particulars of the disease on various websites. My purpose here is not scientific. I searched for patient stories, blogs or life experiences of people contending with this  cancer. I hoped to gain some insights into how others were or are coping with this cancer. Well, patient personal stories are rare to non existent. So, in an effort to make others not feel totally isolated with this disease and to inform my family and friends, I will document my life with MCC for as long as I can.