Slow progress

phillyboy Member Posts: 23 Member
edited February 2019 in Head and Neck Cancer #1

Greetings to all of you Cancer survivors for which I am one. I will try to shorten a very long story which is mostly positive with some setbacks. Radiation and Chemo finished July 2017 after neck surgery for stage 4 carcinoma which can be treated successfully if it hasn't metastasized. Mine hadn't and I have so far been cancer free. Just being alive is a blessing but there were times when I wanted to give up but didn't. After effects of radiation and chemo have been very unpleasant to me. Needed a feeding tube for 6 months . Still have no taste or saliva. Very difficult to eat but cutting meats etc. into small pieces and washing it down is the only choice. Other soft or moist foods I can swallow. Need water every 15 minutes. Xylamelts at bed time are great. No dry mouth for 4 hours. Lost 40 pounds but now stable. I enjoy eating small portions throughout the day. Other big surprises are some hearing loss, some vision loss,nerve damage causing painful neuralgia in my neck and legs causing a gait. People tell me I look good and I hope it is true. Fatigue is still there but slowly getting better. No more PET scans planned unless a recurrence which is possible but unlikely. Teeth and mouth need lots of care daily. Flossing,brushing and mouth trays with fluoride are essential. Some Lymphademia is present in the neck surgery site and can be painful. I have a prescription which helps along with a hand massage. It is tight but I can swallow. This could be permanent along with no taste, saliva or nerve damage. Remember that not everyone will have these serious after effects but they could have others. Cancer is so unpredictable. I am extremely happy to be alive and sincerely wish the best for any of you that are struggling with neck cancer. Do not give up because there is always hope.


  • MarineE5
    MarineE5 Member Posts: 1,024 Member
    You have company


    I hate to say it, but I have most of the side effects that you speak of. I too had a PEG Tube for roughly 6 months and eat mostly moist soft foods. My taste buds started to wake up about 4 months out of treatment but not completely. Lymphedema is an issue and we need to sleep in an inclined position to help keep the fluids away from our neck. 

    I don't go anywhare without out a water bottle, but others get their saliva back. I read of one person here ( Sorry it was some time ago and can't remember who) actually had his saliva coming back 6 years after his treatments, so don't give up. 

    Like many here, we adapt to a New Normal. I recently passed my 14 year mark from final treatments. 

    My Best to You and Everyone Here.