This is my first post on the forum. It was
this thread about a Washington Post's article from 2016 that led my husband to seek treatment with the same physicians last year. I read the article that was mentioned here and it was like reading what happened with my husband; feeling crummy, shaving and felt a lump on his neck, went to the doctor, and was diagnosed with
HPV+ squamous cell carcinoma of the tongue. The tumor was at the base of his tongue. And the lymph node got large so quickly. We first went to a different treatment center and my husband was going to get treated there. But he was really anxious about the radiation after reading about all of the side effects. That's when I stumbled on this thread and the article.
He was the last recruit for this clinical trial, which was 3 rounds of chemo to shrink the tumor, followed by robotic surgery to remove whatever was left. He started his chemo treatment June 28, 2017 and had his third chemo treatment on Aug 9, 2017. He was treated with cisplatin and taxotere each time. After the first treatment, the tumor shrunk about 50%, after the second treatment it wasn't visible at all and the lymph node had gone from the size of a walnut to the size of a cherry pit. The surgery removed the footprint of his tumor, a portion of his epiglottis, and lymph nodes on both sides of his neck.
The surgery was the most difficult part of the treatment. He was in the hospital for 4 days and was sent home with the feeding tube in his nose. That stayed in for 6 weeks. It was so hard, if not impossible for him to swallow for the first 3 weeks or so. The only way he could get water and nutrition was through the tube. That's another story about how we figured out what to use as nutrition because what we were told at the hospital was really bad advice.
The pathology report came back with no visible signs of cancer for both the tongue and lymph nodes.
It wasn't until mid October that the feeding tube came out, although he was working everyday on regaining his ability to swallow. He also went to a lymphedema specialist several times a week for 3 months and that helped tremendously.
It is now a year since his last chemo treatment. He had an MRI a month ago and everything still looks good. And he is back to normal. He can eat anything now and he has no dry mouth. And, most importantly for him, he is still able to remain active. He's an avid cyclist and easily puts 150 to 200 miles a week on his bike. There are still some residual after effects from the surgery. Some numbness in his neck and the lymphedema can bother him sometimes after he's been really active. But, he continues to improve.
If anyone is considering an alternative to the usual standard of care, I would highly recommend asking your doctors about this study. They just presented the data from this clinical trial at the most recent ASCO meeting. I am grateful that they were willing to think outside the box and come up with a treatment that would avoid the long term side effects of radiation.
