Hi

I am new to this forum though my wife (Doreen) has been participating for a couple months now.

I have (had?) Squamous Cell Carcinoma Stage 4 which presented as a massive tumor at the base of tongue and into the throat. I had surgury (April 12, 2005) where they removed my entire tongue and part of my esophagus. Surgury was followed by Chemo and radiation (simultaniously) and I am now 5 weeks out of treatment.

My question is I don't know when to expect certain after effects to start improving. I was hoping other survivors with similar problems might shed some light as to when things started getting better for them.

My first issue is my secretions. I have a trach and it seems that I am constantly having to clear it of secretions every few minutes. It seems I cant wear my speaking valve for any length of time because of my need to clear my trach. How long did it take after radiation for this to significantly improve?

My second issue is opening my mouth. I currently can not proceed with swallowing therapy nor get dental trays made because I can't open my mouth very wide. I have a Therabyte which I use to try and stretch my jaw, I use it 5 - 10 times a day each time holding for a duration of 5 - 10 minutes. Progress seems to be very slow. Has anyone one had any great success going from a jaw that barely opened to greatly improved range of motion? How long did it take?

Lastly my energy is improving but I still have days where I have to really force myself to do much more than sit in a chair all day. What have been your experiences with fatifue and how long before you were feeling better (80% or better) mostly everyday?

I realize everyone may heal at their own pace but hearing from others who have overcome or failed to overcome similar issues may help me set some realistic goals to shoot for.

Thanks for any input.
Lee

Sorry. I did not have part of my esophagus removed, but rather, part of the larynx.
Thanks,
Lee

Lee, I am almost three months out of radiation and I still don't have 80% if my old energy back. I thought I would but my recovery seems to be much slower than I'd hoped. I'd say I'm about at 50% and some days less. Some days I am just flat-out exhausted all day like I just finished rad.

The mouth gunk got better for me around..week 7? week 8? It took longer than I thought it would. It was gradual and I still carry PUFFs everywhere ebcause I have spit attacks where I have to just get a bunch of gunk out. Also I have either had allergies or a little cold lately and all that nose gink seems to drain to halfway down my throat now and then it just sits there until I spit it out.

As for trismus (not being able to open your mouth), I just a couple of weeks ago noticed I was getting that in some much worse and more noticable ways than before (can't even fit two fingers in the gap between my upper and lower teeth in the am--let alone 3). I am in the proecss of ordering a therabyte--let me know how yours works because I certainly HOPE it will do soemthing to help change that around for me.

Nelie

Lee, you have just gone through a HUGH surgery. You probably get tired of hearing this, but sleep, rest, sleep, rest as much as you need to to help your body heal. My husband had surgery April 21st[not near as extensive as yours, and 30 radiation txs.] He is just now getting his energy level up a bit. Wishing you the best while you recover. Amy