My name is Lisa F. My husband is Jim. He was diagnosed with stage 4 HPV related throat cancer in May of 2014. He had surgery to remove the tonsil and 25 lymph nodes along the left side of his neck. 12 of those nodes were cancerous. Once he healed from surgery he was given 6 chemo treatments once a week for 6 weeks. While in chemo he also went through radiation treatments for 5 days a week for 32 total treatments. At the end of his treatments the doctors had to put in a feeding tube. He is still on a feeding tube. He has severe esophagus stenosis and the neck has severe fibrosis from late effects of radiation. We've been told he will never get off the feeding tube. He has had 15 dilations up to February 2017 without much success. He recently went through 60 dives in a hyperbaric oxygen chamber. We have been told if we are unable to get the fibrosis stopped he may need a trach. He was treated originally in Kansas City and last spring we went to Mayo for a 2nd opinion. They thought they might be able to help by doing back to back dilations. The first time they tried it he stopped breathing and they did not continue. Stenosis and fibrosis prevented them from doing any further treatments. Currently he is seen regularly by the chemo oncologist. He continues to lose weight and we have tried adding bulk up powder to his meals. He has this horrible coughing up of a ropee phlegm which has continued for years. He chokes on tiny sips of water. This is a brief synopsis of what we have been dealing with through these past 4 years. Interested to see if there are others with some of these same issues.
Thank you for your time.

Hi Lisa,

I am so sorry to hear what you and your husband are going through. My husband had base of tongue HPV SSC and he came out of radiation with his esophagus totally closed as a result of scarring. He was placed on a feeding tube permanently. However, John found an interventional radiologist who would try a new approach. The IR put two magnets, one above and one below the spot where the scars had closed the esophagus. Then we just waited for the magnets to work. What happened was, the magnets pulled together and created the opening in the esophagus. John was able to eat and drink, albeit carefully and swallowing only soft foods. The SLP who saw him was pleased as John had continued to do his swallowing exercises for the whole time through his radiation/chemo treatments and until he had this procedure. Following the procedure, John had about 5 dilations to further stretch his esophagus.

If the story had ended there, that would be a happy ending. Unfortunately, six months after the procedure, John developed silent aspiration and that caused several bouts of very serious pneumonia from which he eventually passed. I should also mentioned that John’s cancer had metastasized and he was on a couple of clinical trials while he was searching for treatment for his esophagus.

That was at the beginning of 2016. Recently, the IR contacted me and asked for my permission to publish the study in the procedure. While talking on the phone, I found out that IR has only done this procedure once — on John. We knew there were other possible patients before and John even agreed to talk to them about his experience but I guessed those patients decided against it.

I must let you know that I am in Toronto in Canada but if you are interested in getting the doctor’s name and contact info, please let me know and I will send you the info by private message through the forum. Alternately, your husband’s doctors may want to talk to our IR if they are interested in replicating the procedure. It may also be that your husband’s stenosis has still left a tiny opening and so the procedure is inapplicable. I can’t say. You’ll need to confer with your doctors.

I would just advise you to be very careful about the coughing that happens when your husband drinks. That may we’ll be a sign that he’s aspirating. Like the SLP said to us, even a bit of saliva getting into the windpipe would end up causing trouble over time. I know it’s extremely tough not to be able to swallow and it has a huge impact on one’s life, not only for the patient but the caregiver as well. I have been there.

BTW, has your husband seen a dietitian if he is losing so much weight? I found our dietitian very helpful in that regard.

Lisa F, welcome to OCF! Im very sorry to read about everything your husband (and you as his caregiver) has been thru. Im glad your husband has now gotten to a comprehensive cancer center (CCC).

Gloria has given you some great info. Maybe I missed it in your post... Has your husband had a barium swallow test to see if he is capable of swallowing sips of water? Even a couple drops of water going down the wrong pipe can lead to a very serious problem. I was hospitalized for about 10 days a couple years ago for the aspiration pneumonia. While in the hospital I met with a dietitian and SLP plus I did the barium swallow test. I found the taste and temperature of the items I was given to swallow made it difficult for me to get them down. Needless to say, I failed miserably! Sadly, its very common for oral cancer (OC) survivors to have life long swallowing problems after going thru chemo/rads. Iv e had several members here I was close to who were not able to eat or drink anything... not even one b ite or one sip of water. The 2 friends Im thinking of had several recurrences and multiple rounds of rads which made it impossible for them to swallow anything at all as collateral damage.

As far as your husbands weight goes. Definitely ask where your husband is currently being seen for a nutritionist or dietician. During treatments patients need at least 2500 calories daily ands 48-64 oz of water to maintain their weight. If the patients is still losing weight with taking in 2500 calories every day then their intake must get increased to 3000 or 3500. For some patients with high metabolism rates, even taking in 4000 calories a day is not too much. Cancer patients bodies burn up calories at an incredible rate when going thru rads. Then in the recovery phase the patients intake must still be at a much higher than normal level, especially for the first year post rads. Every patient is different and will react to procedures, medications, etc in their own unique way that is slightly different than other patients. It took me about 7 years after finishing chemo/rads in 2007 to begin to gain weight. My case is different as I had OC 3x in 3 years. So another 5 years after finishing my last OC treatment is when all my milkshakes, smoothies and cheesecake began to catch up to me and I gained about 20 pounds. Currently Im 9 years post OC ands I still to this day struggle to maintain my weight. I dont ever want to be back to my original weight but I do like to have a few extra pounds on me in case I get sick as I tend to drop 10-15 pounds in only a few days whenever I get sick. Im thinking since your husband is struggling to keep his weight on he will need a big boost to his usual daily calories. Im not a doctor, nutritionist or medical professional (like all our members, we're just regular people), but after being part of this organization for 12+ years Ive seen and helped thousands of patients who have struggled with their weight. Ask the doc if its ok to add high protein whey powder (to help speed healing) to your husbands diet. Also ask about if upping his calories to 3000 a day for about 2 weeks as a trial to see if you can control his weight loss. Im assuming the hyperbaric oxygen treatments (HBO) were to help your husband to heal. The whey powder will also help with that as well. Every day, I add 3 scoops to my formula in my liquid nutrition bag of Bob's Red Mill Unflavored Whey Powder in a light green 12 oz bag found in my local Wegmans grocery store's health food aisles. Its not easy finding the unflavored kind anymore since it has become so popular to athletic people where you will almost always see it in chocolate or vanilla. Id also ask the doc if any supplements can be added to his diet. I use a liquid multi-vitamin Centrum makes thats found in almost any grocery, drug or department store. The liquid vitamin can go right into the feeding tube, just flush it good afterwards.

Hope these ideas can help your husband.

PS... As a caregiver, dont forget to make some time for you too. Being a caregiver is HARD!!! I know I could never do what the wonderful caregivers here have done for their patients. Carrying the weight of the world on your shoulders and endless worrying can build up and take its toll on you too. Even a walk around the block every night or going out to lunch once a week with a friend can help you to maintain an upbeat, positive attitude even if you're weighed down b y worrying. We're here for you too.