Cured! Five-Year Post-Treatment with No Recurrence!

My 5 year post-treatment appointments with my medical and radiation oncologists of my head and neck cancer treatment team were held on November 15, 2016, in the Johns Hopkins University Hospital Sidney Kimmel Comprehensive Cancer Center clinic area in the hospital's Weinberg Building. My medical oncologist, Dr. Hyunseok Kang, was about to fly overseas, but he came by to congratulate me on having had no recurrence, telling me that as I result I'm considered to be cured. His Physician's Assistant, Sarah Bonerigo Sagorsky, gave me a more detailed examination--she had been with my case since my diagnosis in August, 2011. Dr. Kang had replaced the medical oncologist on my treatment team, Dr. Shanti Marur, who had teamed with my radiation oncologist, Dr. Harry Quon, to determine my treatment that had begun on October 17, 2011. Dr. Marur had also shared the good news after my fourth post-treatment PET scan, having talked with the radiologist who examined the PET scan results, relating that the scan had shown no sign of cancer in my treated tissues, nor in the rest of my body down to my legs. Dr. Kang replaced Dr. Marur when she left Johns Hopkins to work in another hospital.

My final appointment last November 15 was with Dr. Harry Quon, whom I consider to be an absolutely top-rate radiation oncologist, in part due to his excellent programming of my radiation treatment with a cance center radiation physicist to minimize the radiation's negative effect on my salivary glands (and on my beard hair, with minimal thinning of hair along my chin and reduction of hair on my hard-to-shave throat, although that's a fortunate secondary result probably not predominantly considered in his treatment design). Dr. Quon regularly "scoped" the tissues inside my nose, throat, and mouth with an endoscope, and this time did so VERY thoroughly. He had also trained very well his current resident, who was able to thread the endoscope through my left nostril past my deviated septum without pain (some tickle making my eyes water), having again refused spray of a local anesthetic that I found early-on to produce an annoying nasal discharge for the rest of the day following scoping. The detailed endoscope examination of my treated tissues in my oropharynx, and palpation of my neck to feel for swollen lymph nodules, provided me the assurance that I had had no recurrence. Dr. Quon also congratulated me on being cured. As we shook  hands in farewell, and he reminded me (uncessesarily) that tests every six months of my thyroid stimulating hormone level are essential, I told him that I always enjoyed my appointments with him over the past five years, as much for his agreeable nature as for his professional capabilities.

So I wish anybody who has found this blog because they were or are anticipating or enduring the challenges of diagnosis and treatment of HPV-caused head and neck cancer, or have loved ones so challenged, the best of luck in their treatment and follow-up, and that they keep faith in our dedicated medical professionals, doctors, PA's, nurses, phlebotomists, therapists, radiologists, and their office assistants. I'm deeply grateful for the excellent care and positive attitudes of all who have contributed to my care at Johns Hopkins and those of my fellow patients, many who shared Damaris's and my life during treatment in Hope Lodge, the American Cancer Society residence in Baltimore for patients in Baltimore hospitals undergoing cancer treatment.

Happy Holidays to all!

Short Videos of beginning and end of my last treatment, December 6, 2011

One Year, Eleven Months Post-Treatment Follow-up Appointments, October 29, 2013

My follow-up visits with my treatment team physicians went well on October 29.  My chemical oncologist, Dr. Shanti Marur, had informed me in April that she would be moving to a different hospital and that a new medical oncologist would join my treatment team.  That turned out to be Dr. Hyunsoek Kang, who had reviewed my case history and examined me.  He found my recovery to be going well and reviewed my blood tests results from this visit.  He recommended that I return to Hopkins for my next follow-up in six months and that the return interval would become yearly in the fourth and fifth years following treatment.  He went on to say that if no sign of recurrence occurred after five years that I would considered cured.  Next, my radiological oncologist, Dr. Harry Quon, examined me, including with his endoscope, finding tissue healing to have progressed well.  He viewed my re-grown beard with his endoscope, recording the image to document how his precise targeting and execution of my radiation treatment avoided my lower jaw.  That was important for minimizing impact to salivary glands with the benefit of re-growth of my beard to neatly follow my jaw line.  Dr. Christine Gourin, the head and neck surgeon on my treatment team who was the first physician whom I saw at Johns Hopkins following my initial biopsy in Costa Rica and who diagnosed my cancer, also scoped me and found my tissues to be recovering well.  I mentioned to her that I had experienced some occasional instances of aspiration of liquids and food, and she asked if I was seeing my treatment team speech/swallowing therapist on this visit.  I wasn't, and I commented that I had never had a swallowing test when I had seen her on previous visits.  Dr. Gourin made an entry in my chart that my next visit in six months should include a swallowing test.  She asked me if I had been regularly doing the swallowing exercises that my treatment team speech/swallowing therapist had provided, and I said, "Not very regularly."  She stated that patients who had undergone concurrent chemo-radiation treatment and had daily performed the swallowing exercises during and after treatment had been found less likely to experience swallowing difficulties years after treatment, whereas patients who neglected to do the exercises often developed swallowing difficulty.  So I need to get on the ball and resume daily exercises to strengthen my swallowing muscles.

I had made an outpatient appointment for the Johns Hopkins Dermatology Department prior to my travel to Baltimore in order for a skin exam.  Both my father's and mother's sides of my family have some history of skin sensitivity to the sun.  At my appointment, the same day as my appointments with my cancer treatment team, a lesion on the right side of my face that I had been concerned about was biopsied.  Last Friday I received a call from a nurse in the Dermatology Department to inform me that the biopsy was positive for basal cell carcinoma.  Because I'm flying to Chicago tomorrow, November 4, I can't have the lesion removed at Hopkins and will try to get that done at a facility in Chicago before returning to Costa Rica on November 11.

Once again, the best part of my visit so far to the States was seeing and spending time with our daughter Raquel.  I'm very grateful for the hospitality of my friends Mark and Bella Smith in Vienna VA and of my friends Tony and Cheri Catanese in Harpers Ferry WV.  This week will bring the joy of visiting our son Tim, daughter-in-law Bret, and first grandson, Ollie, in Chicago.

One Year, Four Month Post-Treatment Follow-up Appointments, April 16, 2013

I returned to Johns Hopkins Hospital's Sidney Kimmel Comprehensive Cancer Center's Head and Neck Cancer Center for follow-up appointments on April 16, 2013, one year and four months post-treatment.  My doctors had not indicated a PET or CT scan for this visit, apparently an indication of their determination that I was recovering well from treatment and that the four post-treatment PET scans would have shown any tendency toward re-initiation of tumor growth.  Doctors Marur, Gouin, and Quon all examined me this visit, Dr. Gourin with an endoscope.  Dr. Quon examined my tonsillar area and larynx visually and tactilely.  They all commented that my tissues had healed so well that it wasn't apparent that I had undergone radiation treatment.  Dr. Quon commented, I sensed with a bit of pride over the skill of his programming of my radiation field exposure, on the re-growth of the hair of my beard along my jaw and the substantial saliva on his examination glove when he removed his fingers from my gullet.

My doctors recommended that I return for my next visit in six months.  Since they'll probably want a two-year post-treatment PET scan, I'll need to clarify whether I return in October, which would be six months from this visit, or in early December, which would be two years following the end of my treatment.

As always, I've enjoyed seeing and spending time with Raquel, who once again drove me to my Baltimore for my appointments, and also visiting my friends Mark and Bella Smith.  Mark and I played 18 holes of golf (with a cart) on the Lakes Course at Twin Lakes Golf Course in Centreville VA.  I also went into Washington DC one day and visited the Sackler Gallery of the Smithsonian Institution to see the Cyrus Cylinder, with its cruciform account of King Cyrus II of Persia's liberation of the Jews and other peoples from slavery upon his conquest of Babylon around 530 BC.  The sun-baked clay cylinder, discovered by a British archaeologist in 1879 while excavating Babylon, resides permanently in the British Museum, and was loaned to the Iranians in 1971 when Shah Pahlavi celebrated the 2,500 anniversary of the Persian empire of Cyrus the Great.  A replica of the cylinder was presented by Pahlavi to the United Nations, which considers Cyrus's declaration engraved on the cylinder that the peoples of his kingdom were free to practice their religions and customs and have their religious objects returned to be the "Original Declaration of Human Rights."  I was fortunate that my follow-up medical visit allowed me the opportunity to see the Cyrus Cylinder in person.

I fly tomorrow to Chicago to visit Tim and Bret and meet my grandson Oliver Stephen Ford.  I'm excited about holding and getting to know our first grandchild.  Damaris flew there the day before I flew to DC, and has no doubt already spoiled Ollie.

This past Tuesday, December 4, 2012, I had my fourth post-treatment PET scan at Johns Hopkins Hospital.  The first words from Dr. Shanti Marur, my medical oncologist with whom I had my first appointment after the scan, were "Do you want to hear the good news?"  She had just talked with the radiologist from Hopkins' PET Center who had reviewed the scan.  She went on to say that the scan detected no sign of cancer in my treated tissues, nor in the rest of my body down to my legs.  My blood chemistry results were also good, with recovery of normal levels after the effects of chemotherapy that I had received both prior to and during concurrent chemo-radiation therapy.  My PET scan was a full year, 365 days, following the last day of radiation treatment on December 5, 2011.  Dr. Marur told me that with these results, I wouldn't need to see her for six months.

Later in the day I saw my head and neck surgeon on my treatment team, Dr. Christine Gourin.  Dr. Gourin was the first doctor that I saw at Hopkins on August 5, 2011, following the fine needle biopsy of my swollen left high cervical lymph nodule in Costa Rica, the lab results of which, "findings compatible with metastasized squamous cell carcinoma" (translation from Spanish), prompted my wife Damaris and me to fly to the Washington DC/Baltimore area on August 2 for the best further diagnosis available and treatment if necessary.  Dr. Gourin gave me a copy of the preliminary radiologist report of my PET scan (not yet reviewed and signed by the attending radiologist) and examined by mouth, throat, and nose, stating that my tissues had healed well from the treatments.  She, too, said that I didn't need to return as early as three months, but recommended I return for follow-up in four months.  Because she was the first doctor on my treatment team who examined me in August of last year, she's considered my primary doctor for my treatment team, so I suspect that I'll follow her recommendation.  Dr. Gourin took a good look at my teeth and commented on the importance of special dental care because of my reduced saliva production caused by radiation effects on my salivary glands.  Saliva plays a vital role in maintaining dental health.  Finding a dentist in Costa Rica who is thoroughly knowledgeable of dental care for patients who have had radiation treatment of their mouth and jaws is a top priority for me upon my return to Costa Rica on December 13.

My final appointment on Tuesday was with my radiation oncologist, Dr. Harry Quon.  Dr. Quon also examined me, and marveled again, as he had on August 28, how well the tissues of my mouth, throat and nasal cavity had recoverd from radiation.  He commented to his resident, Dr. Shibaja (Hopkins is a teaching hospital, and Dr. Shibaja inserted and manipulated the endoscope in my nasal cavity as Dr. Quon coached him), that the still-palpable left high cervical lymph nodule had shrunk since August, and that my treatment team had opted against radical neck dissection (surgical removal of neck lymph nodules, once standard practice for level-IV metastasized head and neck cancer) and that my case was included in a research paper by him and others on the topic currently under review.

Once again, our daughter Raquel drove me to Hopkins and accompanied me through the day.  It's been great to be able to spend some time with her again.  Returning less frequently for follow-ups at Hopkins has a down side--seeing Raquel less frequently.  Maybe I can spend some of the money saved by traveling less frequently to Hopkins by paying for Raquel to go visit us in Costa Rica.

This Saturday, December 8, I'll fly to Chicago to visit our son Tim and daugher-in-law Bret in Skokie.  Bret's due date of our future grandson Oliver was December 2, and Damaris flew there on November 15 to help Bret in the final days of her preganancy and first days of motherhood.  I hope that Ollie is born between now and my flight back to Costa Rica.  I miss Damaris, and Tim and Bret, so I'm looking forward to seeing them in Skokie, but as might be imagined, the prospect of getting to see and hold my first grandson is totally awesome!

Follow-up PET Scan August 28, 2012, Still No Cancer

As I noted in my blog about my May 6 PET scan and doctors visits, Dr. Gourin decided that she wanted to see me every two months and wanted me to have another PET scan in five months.  Since I was interested in consolidating travel from Costa Rica where I live to Baltimore as much as possible, because of the high cost, I ended up scheduling my subsequent PET scan and visits with doctors for the same day, August 28.  My PET scan that day showed no abnormal positron acquisition, and Drs. Gourin and Quon seemed very positive about the results nine and a half months post-treatment.  Dr. Marur wasn't available that day because she was out of the country.  Drs. Gourin and Quon were very pleased with the recovery of the tissue that had been irradiated in my mouth, throat, and nasopharanx; Dr. Quon stated that it wasn't evident that I had even undergone radiation therapy.  My lymph nodule high on the left side of my neck near the angle of my jaw (high-cervical lymph nodule) has remained palpable but seemingly unchanged post-treatment, and both doctors are quite confident that it is a "burned-out" nodule, as Dr. Quon referred to it on May 6.  Both doctors recommended that I return to Johns Hopkins for another PET scan and for them to examine me in December, which would be one year post-treatment.  That visit is now scheduled for December 4.  I also saw speech and swallowing therapist Donna Tippett, who strongly recommended that I continue the swallowing exercises that she had given me during my treatment and that I have been continuing, although not as frequently as she recommends.  I shared with her that I don't really experience problems swallowing, with the exception of needing to drink some liquid to help swallow dry, crumbly foods, such as bread.

I continue to experience dry mouth, but it appears that my saliva glands are slowly recovering, because keeping a water bottle handy 100% of the time isn't as essential as formerly.  Nevertheless, I try not to leave home without it.  I still awake too frequently during the night with a very dry mouth, no doubt because my mouth opens as I sleep and my throat dries out as I breathe.  Also, if I engage in fairly active exercise, which I do three times/week playing badminton outside with friends, my throat dries out quickly if I'm breathing through my mouth.  I purchased some packs of Biotene Dry Mouth gum while in the States for my last follow-up visit, and that helps greatly while exercising vigorously.  I've learned that the effect of the gum last longer if I resist the temptation to take sips of water, apparently because the water washes the enzymes that are in the gum down my throat.  The gum contains enzymes that supposedly help the damaged salivary glands produce saliva.

I enjoyed being able to spend time with our daughter Raquel and see the new apartment that she shares with her fiance Alex in Alexandria, VA.  She drove me to Baltimore for my scan and doctors visits at Hopikins, and accompanied me for my visit with Dr. Quon.  I greatly welcomed her company, because for some reason I was nervous about what the PET scan would find.  Raquel and I went on a short sail one evening on the Chesapeake Bay skipjack Minnie V. on the Potomac River out of Alexandria, owned by the Potomac Riverboat Company.  I then flew to Chicago to see our son Tim and daughter-in-law Bret and their new apartment in Skokie IL.  We had a fun afternoon at the last day of the Chicago Jazz Festival in Grant Park.  They're expecting our first grandson, Oliver, whom I hope to meet on the way back to Costa Rica from my Dec. 4 visit to Hopkins.  I'm hoping that Raquel will be able to accompany me to Chicago to meet her first nephew.

Follow-up PET Scan May 6 - Still No Cancer

Following my PET scan on March 5, three months following the end of my seven-week combined chemo-radiation treatment, Dr. Christine Gourin, who first diagnosed my left tonsil cancer on August 5 and biopsied my tonsil and nasopharanx on August 12, requested that I return to Hopkins in two months for a follow-up PET scan because the remains of my high cervical lymph node to which the primary cancers had metastasized "lit up," although emitting positrons at a level below what Hopkins specialists consider indicative of cancer presence.  A PET scan at Hopkins on May 7 still found no indication of cancer, but the remains of the same lymph node "lit up."  Dr. Gourin told me that standard practice used to be to surgically remove all of the lymph nodes on one or both sides of the neck with metastasis of head and neck cancer to them, but her experience had shown no increase in survival with such radical neck dissection.  She told me that she wanted to monitor the remains of the lymph node and see me every two months.  The lymph nodes on both sides of my neck had been irradiated along with my left tonsil and nasopharanx cancers during my seven weeks of radiation treatment from October 17 to December 5.  Concurrent chemotherapy with carboplatin had continued to shrink the tumors and increase the lethality to tumor cells of the radiation.  Last week, after seeing the results of my May 7 PET scan, my radiation oncologist Dr. Harry Quon at first recommended that my lymph nodes on the left side of my neck be removed, but after carefully feelng the lymph node that was still palpable, and that had "lit up" again during the follow-up PET scan, said that the node felt "burned out," and agreed with Dr. Gourin's recommendation to continue to monitor it.  On March 6 he had recommended two thyroid tests every six months, which were included in my blood work drawn on May 7; thankfully, these turned out negative.  Other blood test results were also within normal ranges, and my medical oncologist, Dr. Shanti Mathur, agreed with Dr. Gourin and Dr. Quon that the remaining palpable lymph node was probably scar tissue and continue to be monitored.  So I will have to return to Hopkins every two months, and get another PET scan in four to six months.

I greatly enjoyed being able to spend a lot of time with Raquel, and am especially grateful for her picking me up at Washington National Airport, staying with me at our friends' Leroy and Flor de Liz Snyder, driving me back and forth to Johns Hopkins in Baltimore, and especially joining me at my appointments with my doctors to hear the results of my PET scan and their recommendations.  I also enjoyed seeing Leroy and Flor de Liz and their children Cynthia, Kenneth, and Bibiana.  My friends Mark and Bella Smith graciously put me up on the night I flew in from Costa Rica, May 5, and on May 9 and 10 following my Hopkins appointments, and it was great to spend time with them, also.  Mark and I were joined by friends who also work with the USDA Foreign Agricultural Service for lunch on Thursday at the USDA Cafeteria.

On Friday, May 11, Raquel took me to National Airport to fly to Chicago to visit Tim and Bret, where I am now, as always enjoying their company and Chicago's Lakeview neighborhood, CTA transportation, and downtown shopping.  We'll attend a Whitesox v. Detroit Tigers game on Tuesday, where we'll be routing for the Tigers, who have been Bret's favorite team since growing up in Michigan.  I return to Costa Rica on Wednesday, where Damaris, Steve, and Pati have "held down the fort" and welcomed the positive news from my tests at Hopkins.

I continue to be a survivor, thankful for the support of family, friends, and the contributions of modern medical science, all blessings of our Creator.