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Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: Sep 21 5:27pm | Replies (538)Comment receiving replies
Hello Everyone. My husband was diagnosed with nasopharyngeal cancer on 1/1/23. He was being seen by an ENT for a few months with initial symptoms of a clogged left ear and those symptoms grew to excruciating pain which mimicked TMJ on the left side of his face, pain in his left ear and then numbness on the left side of his head and face. He was unable to eat and lost about 20 lbs. in the process. By the time he had a MRI on 12/30, they found a mass that was eventually staged as 3/4A. He is currently undergoing the initial 3 chemo cycles and set to begin radiation next month and continue with chemo once a week. We have had a few treatments delayed due to low blood counts as well. He no longer has the excruciating pain, but has not regained the weight, but is able to eat. He is also fatigued most days and having the typical chemo side effects after treatment. He is expected to have a PET scan at the beginning of April. Just curious for those of you who have had/currently have this diagnosis, did you see significant shrinkage of the mass on the first scan following treatment? Just curious since the pain is no longer, should we expect to hear some good news. We understand, regardless of what the scan shows, he’ll still have to undergo the 35 radiation treatments. The doctors have told us about all the side effects that he can expect as a result of the treatments. Also for those of you who have experienced radiation for this type of cancer, curious if these side effects are as bad as they are projecting? Were you able to work going to treatment daily? Thank you for any input you have. This is all so very new to us, as I’m sure it was to all of you. We are honestly still processing and trying to learn as much as we can. Thank you.
Replies to "Hello Everyone. My husband was diagnosed with nasopharyngeal cancer on 1/1/23. He was being seen by..."
Good morning, so sorry for your diagnosis. I have HPV16.
It was on the back of my tongue with cancer in both lymph nodes. My treatments were done at the same time.
5 chemo and 35 radiation treatments.
Unfortunately I had a feeding tube for 4 months and did not work. The side effects were worse than I was told. It wasn’t until I was experiencing the side effect that the Dr would say “yea that can happen.”
Side effects, over abundance of saliva in the beginning. Causes choking. Then suddenly you dry up. NO saliva, swallowing is a struggle. Drink something besides just water for hydration. Sorry this isn’t the news you wanted. If I can give you any other tips, please reach out.
God Bless
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Thank you for your post. I am very sorry to hear about your husband. But he is lucky to have you as his advocate taking initiative to get information to cure him. I am actually a couple months ahead of your husband. I have Hypopharnyxgeal cancer stage 3a. Locally advanced. I also had Breast cancer 15 years ago. I can tell you breast cancer was so much easier to navigate than this. Mainly because there are many resources and awareness for BC. I finished my radiation 3 weeks ago. Cisplatain+35 rounds rads. No surgery. HPV negative (if you are + you are in luck). The treatment is like they say it is. Keep him active and do everything your doctor tells him to do. Keep his weight on with shakes and thick soups as long as possible. Also do the exercises. If they have not told you then ask or google them. 3 weeks post treatment my voice is coming back, I am eating & swallowing carefully and slowly. My radiated skin is peeling and I see new skin. No pain but I just have a cough that comes and goes. But that's fading too. My scans in May, so I too am nervous about my outcome. I am 57 years old, female, with kids in college.
I have many years planned ahead. I would love to meet someone in my situation, HPV negative, to tell me if it worked. For now I pray, exercise, eat healthy, and get hydration regularly. I finally having lunch with friends for the first time in months although I'll be whispering. I will post my scan feedback in May. Best of success. Feel free to reach out if you need anything. God Bless.