My husband, David Laylor, was originally diagnosed with squamous cell carcinoma (SCC) of the tongue in September 2012. He underwent seven weeks of daily radiation treatments plus five weeks of concurrent chemotherapy, then 3 rounds of adjunctive chemotherapy several months later. He remained cancer free for over four years. Last June a new lesion on his tongue was biopsied and found positive again for SCC.
David had been receiving immunotherapy treatments (Keytruda) every three weeks since last July at Cancer Treatment Centers of America in Zion, IL, where he received his initial treatment and all follow ups. The treatment was slowing the growth of the lesion, but not eradicating it, and around the first of the year the cancer started growing rapidly, so we started looking at other treatment options.
He cannot undergo the same type of radiation for the same duration as he did before. His goal as before was to preserve his tongue, which led him to consult with Dr. Thornton at Hampton University Proton Therapy Institute, who recommended radioactive implants, or brachytherapy, followed by four weeks of proton radiation to the surrounding areas. There are very few radiation oncologists who still utilize brachytherapy for head and neck cancer in the U.S, and our search took us to Dr. Harrison at Moffitt Cancer Center in Tampa, FL, where an appointment was made for March 22.
However, as of last week (week of March 5), the facial pain David has been experiencing shifted from the right to the left side of his face, and the tip of his tongue changed color. By Friday last week, the whole tip (about 1/3 of his tongue) had turned black and has no feeling, because the blood and nerve supply has been cut off. Because of the recent and rapid changes in his condition the plans to go to Moffitt in Tampa are out the window and he is forced to finally make the arrangements he has been staunchly avoiding for the past five years. After his consults in Chicago this week and in no small part because of his own acute awareness of his condition, he must now make preparations for surgical intervention.
The consensus is that he needs a total glossectomy. This is a 10+ hour reconstructive surgical procedure that involves placing a tracheostomy tube and feeding tube (PEG tube), removing the tongue, removing the lymph nodes on both sides of the neck (neck dissection), and reconstruction of a new "tongue" with muscle from either his forearm or thigh. The possibility of a laryngectomy at the same time was mentioned because they say he may be too great an aspiration risk, but he will refuse it. He could be in the hospital for around 2 weeks and will have likely months of speech therapy and physical therapy to learn how to speak again and how to swallow again. The trach will come out when he leaves the hospital, but the PEG tube doesn't come out until he passes a swallow study. Right now we're working with a surgeon at the ENT clinic at EVMS in Norfolk to schedule the surgery. Because of how rapidly things are changing, time is of the essence.
To add on top of all this, I spent five days in the hospital from February 20-25, 2018 being treated for toxic shock syndrome(!) which only piled more stress upon an already very stressful situation.
David is going to be out of work for a long time, and I will have to take time off to care for him. We will need assistance for our regular living expenses as well as for medical copays and coinsurance. We have four children: Melissa (almost 15), Joshua (age 12), and twins Angela and Abigail (age 11). David has three adult children and we are grandparents by all of them. I also care for my elderly mother who has been living with us for 3 years and suffers with congestive heart failure and some degree of dementia.
Thank you for reading this. Any amount you give is appreciated; no amount is too small, and we also covet everyone's prayers for healing.
- Giovanna Rose
- Phuong Rose
- Mike Russell
- Javier Hinojos
- Angeline Posey
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