Jerry has had a recurrence of head and neck (nasopharyngeal) cancer. I’ll share with you our journey which began some years ago and include a reminder about the importance of quality after-care and follow-ups for cancer patients.
Like many of you, Jerry had been seeing an ENT for 'sinus problems' as far back as 1997/1998. In February 1999, Jerry mentioned to his PCP a lump which had appeared behind his right ear, 2 weeks before. His doctor said it was a swollen lymph node and prescribed 14 days of antibiotics. He wanted Jerry to return at the end of the 14 days. When Jerry went back, the node had not decreased in size. The doctor ordered a CT scan and referred him to an ENT.
The ENT said the scan appeared to show cancer and a needle biopsy was done. The biopsy
confirmed squamous cell carcinoma. Thus began the journey to locate the primary site, which was
determined to be the nasal pharynx. Treatment included radiotherapy, 5 days a week for
8 weeks. A radiation mask was used and you can read about the mask construction and
-->Nasal Pharynx Cancer - Radiation Mask
Chemotherapy, 3 infusions of Cisplatin 3 weeks apart, was also done. And a number of infusions of Ethyol, which was a new drug at that time. Ethyl was reputed to reduce or negate the onerous side effects of chemo and radiation on the taste buds, saliva glands etc..
Jerry has lived with numerous side effects, some of the more usual and some that were never discussed in our consultations. We were told that there was a slight risk that Ethyol could prevent the chemo and radiation from destroying the cancer cells. He completed the radiation but did not receive the third infusion of Cisplatin. He was having muscle spasms in his left arm and blurred vision in his right eye. He was considered a likely candidate for a stroke based on a sonogram, EEG, and MRI
We moved to be near family shortly after his treatments ended. Jerry was checked by an ENT at least once a year. In 2004 and 2005, he suffered from increasing issues with his sinuses, allergies, and ear problems. By the beginning of 2006 these problems were significant. He had tubes in his ears and began taking long-term allergy shots. Jerry's sinuses were such a problem that he was doing sinus washes constantly. His throat was bothering him more and more. In mid 2006, he was put on round after round of antibiotic for a sinus infection and was using ear drops for an ear infection. None of this helped.
Jerry had been seeing the same ENT from 2000 through 2005. He switched to a new ENT in early 2006. That doctor prescribed the antibiotics for sinus and ear infections. When this doctor was out, his associate saw Jerry. All of these doctors were very aware of Jerry’s cancer history. It was the assistant to the ENT associate who asked Jerry one day, "have you had a PET scan recently?" We said "no", never. She left the room and the doctor arrived shortly afterward. He told us that Jerry should have a PET scan because of his history.
The scan was done a week later on Novemeber 7, 2006, and confirmed what we already suspected. Jerry has cancer of the posterior pharynx extending from the skull base to the left tongue base with a possible invasion of the skull base and ethmoid air cells. At least one and perhaps two lymph nodes are involved plus the posterior right hypopharnyx
Jerry cannot have radiation again. We were told that the major tumor from the skull base to the tongue cannot be removed by surgery. He started weekly chemotherapy on November 30, 2006 in hopes of making him more comfortable by shrinking the tumors. He received Methotrexate and Erbitux. He had a reaction to Erbitux. It has been replaced with Vectibix which is approved for colon cancer but not head and neck cancer. Jerry is receiving it “off label”. Trials for approval of this drug for head and neck cancer have begun. A port was put in before Jerry started chemo and a feeding tube shortly after. Both of these have been a blessing. At this point everything goes into Jerry through the tube as his soft palette isn’t working properly and anything he tries to swallow comes out his nose or goes into his lungs.
Since beginning of his treatments on 11/30, Jerry has survived 4 serious health episodes. The first was the reaction to Erbitux which was immediate and severe. Four days later he was airlifted to the hospital in shock brought on by the pain caused by the laxative used to deal with the constipation which is caused by the pain meds. In late December, his blood pressure and oxygen level bottomed out during chemo and he was put on oxygen even at home. On Jan. 16, 2007, he had a minor stroke (TIA). The oncologist has ordered a CT scan on Jan. 23rd to see if the chemo is shrinking the tumors. If not, we’ll discuss options which we already know are very limited.
We are blessed to have each other and many caring, supportive, friends and relatives. My husband is retired, so work isn’t an issue. I do bookkeeping/accounting and have cut back to working from home only. My heart goes out to those of you who have jobs and children to care for as well as dealing with treatment; and others of you who have no family or friends to help.
I am sharing this story of reoccurrence not to scare you but to reinforce how important it is to have good follow-up care. Don’t ever assume that doctors are doing everything that they are supposed to be doing or always know what they are doing. Jerry was "scoped" every year but by the time the tumor was identified by the PET scan it was already large enough to make it difficult for him to swallow. When the ENT was asked to do a biopsy to confirm that it was indeed the same type of cancer, the doctor was able to do it in the office by depressing the tongue and cutting off a small sample. Simple as that!
Please - question, question, question and demand tests.
I send my sincere best wishes to those of you who are struggling with cancer and to those of you who are providing care and support. Treasure each day and remember that -- worrying does not empty tomorrow of its troubles but today of its strength.