Tongue cancer

@jaybb1 here is the website for the face wrap. I use it with a "chip bag" from my OT. Its a bag of foam rubber chips. Sounds weird but works great. I got my first one from my Mayo OT and it worked well. Since then I buy them directly from the company. The one they sell on Amazon is too hard to get on right.

@sandy8043 Thank you--Sandy. Now I know what to expect over the next 2 or 3 years. Still wondering if beyond neck--- Lymphedema can spead to upper chest area (but not shoulders) where I have disconfort and tightness. I was thinking that dry-mouth would correct itself over the next year or two, but that is to be seen. I was not aware of face compression wrap, will look into it

Hi @jaybb1

Your upper chest having discomfort and tightness could be from aspirating on your own salvia, eating food or liquids. Sometimes you may not even know that it's happening. If you get CT scan with part of your surveillance after treatment, it should be able to detect it. Happened to me which turned into a low-grade aspiration pneumonia that I was walking around with for many months. I figured it out with my own research and got a referral from my ENT to see a pulmonologist who gave me an Aerobika Device as mucus was plugged up and this released it. Since then, it has reduced substantially and I even can take very deep breaths again without coughing or feeling that tightness.

God Bless

@zenren14 You waited a year to start seeing a MLD specialist in HNC. Interesting. Did not know there is a MLD therapist dedicated to HNC. Tomorrow is will meet my therapist and see if she is MLD or mainly motion. And find out her experiences treating HNC. I am reading in some articles that therapy, MLD, should be done initially 3 to 5 times a week. I thought by talking to a few centers that it is 1x a week since that is what they do. Anyone going multiple times a week. ???Thank you everyone for responses

@zenren14 Good feedback: swimming. I will need to go back to the "Y' and restart my swimming that I stopped several months ago.

@zenren14 You waited a year to start seeing a MLD specialist in HNC. Interesting. Did not know there is a MLD therapist dedicated to HNC. Tomorrow is will meet my therapist and see if she is MLD or mainly motion. And find out her experiences treating HNC. I am reading in some articles that therapy, MLD, should be done initially 3 to 5 times a week. I thought by talking to a few centers that it is 1x a week since that is what they do. Anyone going multiple times a week. ???Thank you everyone for responses

@jaybb1 Today I had my first visit with my MLD/CDT Therapist. Based on this evaluation, I am now scheduled for 2x a week for the next several weeks. I was suprised, this is what I wanted but seeing that the norm appears to be 1x a week, I thought I would have to fight for multiple visits per week. .She confirmed the 3 focus areas to be treated: Neck, Left Shoulder, Upper Chest. The Neck is the result of surgery. The other 2 I contribute to radiation therapy and wonder if I had Proton Radiation instead Photon I would not have this additonal areas. I am fortunate that the therapist is: CLT, Lana qualified, Norton Certified, and experienced in and treats mainly H&N and CDT (Complete Decongestive Therapy)