I’m a cancer survivor, Immunotherapy patient, patient advocate that is passionate to assist people to work together to eradicate cancer. When I was diagnosed almost six years ago with a very rare cancer called Thymic Carcinoma, I went to work researching and understanding every medical term and treatment that was available at that time, which meant to also understand other cancers and treatments that are in the marketplace. I also, like most people went to the internet and realized that everything that I read was doom and gloom giving me less than 15% to live 5 years.
I don’t accept that fate, so I set out to beat this cancer and have not look back since. Even with a recurrence in 2015 which set me down a different road, I read and talked to every Oncologist, Radiologist, researcher, and pharmaceutical organization to look for all available treatments and technology that could stabilize or even reduce my cancer. Over the past 3 years, I have talked to leading Research Oncologist, Radiologist as well as Pharmaceutical companies and realize that even though there has been much advancement in cancer research, rare cancers like mine are more often neglected in understanding and lack the education or updated information that is going on with patients and this needs to be shared with these doctors that are on the front lines of cancer treatment. I just don’t talk about it, I live it each and every day.
One additional note, when I was diagnosed in 2013, the information that was out on the internet was very outdated and not much documented around our cancer or treatments available, so I started a new website and Facebook Group that provided a positive and more informational around Thymic Carcinoma, and new types of treatment to fight this cancer. Today, this website and Facebook group has grown both in numbers it serves, but also a great place where today’s oncologist are suggesting that diagnosed patients go to for information and support. These two sites are as follows:
On January 22, 2013 I experience severe abdominal pain and underwent a CT scan of my abdomen which showed evidence of diverticulitis. One of the surgeons who thought that I may have to have surgery caught an anterior mediastinal mass in my abdomen CT scan. The next day I had a CT scan of my chest which demonstrated an anterior mediastinal mass (3.3 x 3.7 cm in size with some adjacent nodules). This was followed up by a PET scan on January 30, 2013, which demonstrated that this anterior mediastinal mass is FDG avid with an SUV of 4.4. The nodes in the region were also FDG-avid. The overall size of the mass plus the nodes is approximately 6.1 x 4.4 cm. It does not appear on CT scan that the mass is invading any of the surrounding structures although it may about the innominate vein. It sits slightly to the left of the midline in the mediastinum.
On January 31, 2013, I underwent a Chamberlain procedure, and the diagnosis of Thymic squamous cell carcinoma, nonkeratinizing type, was made. The miracle about this whole thing was that I was completely asymptomatic, and this was an incidental finding. In talking to the Thoracic Surgeon, he specifically advised me that I will need to get this mass out in 2 weeks or less, or this could potentially spread quickly to other parts of my body.
What a big surprise, the word cancer never entered my mind for I have never been sick my whole life, and now to be diagnosed with one of rarest types of cancer was devastating for everyone in my family. In talking to the surgeon, he mentioned that not very many people had seen this type of cancer and it would be very difficult to find someone who has operated on Thymic Carcinoma. Once we checked the whole Kansas City area, this led us to believe that we would have to go outside of KC to find a Thoracic Surgeon and Oncologist that has had experience with Thymic Carcinoma. In our research, we found doctors at either MD Anderson in Houston or The Mayo Clinic in Rochester MN in my region that had experience in Thymic Carcinoma. After many frustrating calls trying to get into either of these facilities, my wife called Mayo and after a couple of conversations set up a meeting to meet doctors in person on February 12, 2013 in Rochester Minnesota.
In meeting with Dr. Stephen Cassivi,MD and Dr. and Chris Seder,MD as well as a couple of Fellopws from Thoracic Surgery and with Dr Michael Kidd,MD and Dr. Ron Richardson,MD from Oncology for several hours in regards to viability of surgery and treatment, it was decided that they have a great probability of being able to have complete resection of the tumor and set the surgery date for February 15, 2013. A standard median sternotomy was performed. The dissection was completed by Dr. Stephen Cassivi,MD and Dr. Chris Seder,MD on the posterior thymus. It was determined that the tumor was an invasive grade 4 of 4 squamous cell carcinoma forming an ill-defined 5.0 x 4.5 x 3.0 cm mass in dimension. One out of 26 of the regional lymph nodes was focally involved with metastatic squamous cell carcinoma. The Diagnosis was Thymic Carcinoma, high grade, nonkeratinizing with squamous cell differentiation, Stage IV.
After the surgery and while recovering at Saint Mary’s in Rochester MN, the Oncologist team recommended that they administer postoperative radiotherapy and Chemotherapy trying to go for a complete cure and to clean anything that could have been missed. My wife and I decided to use Mayo in Rochester MN for my radiation while doing my Chemo in KC for it was standard type doses. On April 22, 2013, Dr. Sean Park MD and head of Radiology recommended that a dose of 50.4 Gy in 28 fractions or treatments. With using a new technique and by using daily image guidance and likely intensity-modulated radiotherapy 5 days a week, I received my 28 treatments over 6 weeks and returned home to get ready for my onset of Chemotherapy.
Dr. Michael Kidd recommended that I start my treatments, so on June 21, 2013, the following doses to use for Chemotherapy were cisplatin 50 mg/m2, doxorubicin 50 mg/m2, and cyclophosphamide 500 mg/m2 on day one, repeated every three weeks for 4 total treatments. I started my Chemo in June of 2013 and completed my treatment in September of 2013. Once I completed my Chemo, it was decided to return to the Mayo Clinic every 3 months for at least 2-3 years to have regular CT Scans due to this cancer being highly reoccurring and aggressive in nature.
In March of 2015, I began to have periods of stomach flu like symptoms on every week basis. I thought is was just me working to many hours and the stress related to my job. On March 28th, I woke up in the middle of the night and became very ill. I ended up throwing up blood, so this caused great concern with my history. After seeing a Gastrologist and doing an endoscope, there was nothing they could find that would have caused this blood from my stomach. I called Dr Kidd my oncologist at Mayo, and since it was on my schedule to do a PT Scan in early April, it was determined that we would be safe and schedule a Pet scan to be safe and to make sure it wasn’t cancer.
On April 7, 2015 I had my PT Scan, and the results was that I had THYMIC CARCINOMA once again. That dreaded call from the doctor came again but doing my research and going through it once before, I knew that I had time to figure out the best approach and treatment. It was determined since it looked like it was contained in 1 single Mass, that we would do surgery again to remove the mass and then determine the best treatment and approach after the surgery. Dr Stephen Cassivi talked to me and my wife Heather at length of the findings and it was determined that a left thoracoscopy and excision of this lesion was the best approach and the surgery will be on April 30, 2015. A three-port thoracoscopy was then performed with airtight Thoracoports and gas decubitus position in preparation for left chest surgery. There was studding of the parietal pleura, especially in the lower portions of the pleural space. They performed biopsies using the biopsy forceps and removed the specimen through the sheathed ports to avoid port site contamination. Specimens were sent to Pathology. They showed metastatic grade 4 squamous cell carcinoma. Because of the diffuse nature of this, Dr. Cassivi did not proceed with further excision and closed me up from there. Because of the large number of freckling of the Thymic Carcinoma, Dr Cassivi decided that it would be best to leave the tumor as a mark for future treatment determination of whether it is working or not working.
I didn’t panic, and I knew that I had time. I meet with Dr. Kidd my oncologist at Mayo, and he recommended that I look at trials that the NIH had currently going. One trial was Sunitinib, which I could take in a trial in Indianapolis or the other trial was a new type of Immunotherapy called MK-3475 out of Georgetown Medstar. I contacted both, but only heard initially from the Sunitinib trial at first. At the push of my daughter and wife, they really wanted me to get into the Immunotherapy, but I knew that I needed to get started on some type of treatment. The day that I was to leave for Indianapolis, I finally heard from Dr. Giaccone who was one of the leading Doctors regarding Thymic Carcinomas and was the leading research doctor on MK-3475. I decided that I would cancel the Sunitinib trial and go to Washington DC to meet with Dr. Giaccone. It was determined that I was a good candidate for the trial and I started on treatments on June 11, 2015.
Over the next two years of this trial, I traveled to Washington DC every three weeks to receive 200mg/8ml of Pembrolizumab Immunotherapy with Dr. Giaccone. After 2-4 treatments, we had a gradual decrease in both size and number of METS within my Pleura. Once I completed my 2 year trial, I had a small questionable area still in my Pleura that showed in my PET Scan in July 2017. After consultation with both Dr. Giaccone and with my Oncologist at Mayo Dr. Mansfield, it was decided that I would have surgery and remove the small area and any other questionable areas that were deemed to be potential cancer areas. I had Surgery in July 2017 and once I healed from the surgery, I petitioned Merck to see if I could stay on Pembrolizumab or Keytruda. After several Clinical Patient advocates from Merck, Merck allowed me to restart Immunotherapy in October 2017. I have now had a total of 51 Keytruda treatments total (35 in trial and 16 since October of 2017), as of August 4, 2018 and I’m now in the bleeding edge for no data exist in taking Keytruda this long of a period. My last PET Scan in July of 2018, showed no detectable Thymic Carcinoma since my surgery in 2017 and will start back on Keytruda in some type of revised treatment program to be decided in October after my CT Scan.
Summary of Cancer: 6 surgeries, 81 total treatments (28 radiation, 4 Chemo, 51 Keytruda) and more than I would like to admit of PET and CT scans, oncologist, radiologist and researchers. As of today, I have no detectable cancer.