Hi All, My first post... Hopefully we can give each other advise as I have been through the surgery and treatment and now recovering! I was diagnosed with cancer on the right side of my tongue (squamous cell carcinoma) with the possibility of it spreading to my jaw and lymph node. I had surgery in March 2018 removing half of my tongue and flap reconstruction (from my left thigh) a large number of dental extractions, neck dissection to remove lymph node, lip and jaw split to access the tongue etc. They also discovered that the cancer had spread to my Thyroid and these were removed recently (Dec 2018) Like many, I completed the 33 days od Radiation & Chemo treatment - June 2018. This is when the challenges really start! Talking, eating and just trying to be normal again. I lost my job and have no personal insurance so became very depressed and now experiencing financial hardship - but we battle on!!
I was given the all clear last week - they believe they have cut out all the cancer and it has not spread any further! YEY!!
One of the hardest things at the moment, and always has been is the saliva & Mucus! Although better, it still drives me nuts! I have tried just about everything and my doctors always just say - it takes time! Recently I have "Glycopyrrolate" which has helped a bit but does increase the dry mouth. Has anyone found anything that helps? I still have the stringy Mucus down the back of my throat and produce too much saliva that I cant talk - then of course the dry mouth sets in!
I am also considering trying "Hyperbaric Oxygen Treatment" - mainly for my jaw and nerve damage in my mouth, has anyone tried this?
I am 16 years post treatment this and I noticed that my dry mouth symptom is getting worse and worse since last June. During day time, I have to sip water every 15 ~ 20 minutes otherwise, My mouth will feel very sticky. Needless to say, every morning my mouth is sticky and burning, I talked to ENT doctor asking for medicine to stimulate saliva but the doctor said it has been so far out from radiation, the medicine won't work any more. I am wondering if anybody here has experienced similar situation like this, and how do you handle it?
I am linking an article that broaches the topic of cancer survivorship. I think we (cancer patients and their families) need to get better about asking at the outset what life will be like after treatment is completed. This article discusses calling for a shift in thinking to focus not just on treating tumors but also on minimizing lifelong medical problems that can be caused by malignancies or by surgery, medication, and radiation.