Im surprised to hear your doc said you would be pretty much completely finished with your recovery at the on e year post rads mark. You still have way more than a month and half until you are fully recovered. After my first year post rads, I noticed significant saliva improvements. My sense of taste was still off at the one year post rads mark too. The last taste to return was sweet and it seemed to be very sporadic for a long time with one day tasting one way and the next day completely different.
Im definitely NOT anyone to compare yourself to!!! Every time I thought I was finally ok, I ended up getting OC again. I was only around 7 months post rads when I had my first recurrence and needed surgery to remove the OC tumor. After I was almost a year past the surgery I had all my teeth removed from the rad damage to them. The plan was to get dentures but unfortunately I ended up getting OC again instead of being well enough to get dentures. From that point on there were so many complications I cant even keep track of them all.
As far as my eating goes, no I can not eat a sandwich, hamburger, piece of pizza, apple, or 99% of any other food regular people enjoy. Im very limited to soup broths, yogurt, jello, soft ice cream, cheesecake, gnocchi, sometimes I can eat bread or dinner rolls but its hit or miss if they are very soft and I have butter or dip in soup broth to help make it even softer and easier to chew. Without teeth its almost impossible to eat normally plus I have major issues with my ability to swallow which will never improve so I wont ever do any better than I currently am doing with eating. But... I am so very fortunate to be able to eat even the few items I can eat here and there!!! Ive known quite a few OC patients who arent able to eat or drink anything at all. Not one bite or sip for many years is so much worse than a few of my limitations that I have learned to adapt and to manage. Thats one reason I dont usually talk about my own eating limitations. By knowing so many who cant eat one bite or take even one tiny sip of water is so much more difficult than what I go thru. Im very VERY fortunate to be able to eat the few things I do.
The pilocarpine taken at only a month post rads probably would not work. Once you get past the first year post rads, Id suggest trying to take the pilocarpine again. It takes time to build up before it works, at least 3 maybe 4 or more weeks before you would notice any results in saliva production.
All that medication did for me was to make me sweat like crazy, so much so that I couldnt stand being so sweaty all the time. It was summer when I tried it so Im certain the time of year only intensified my sweating side effect and I probably should have tried it again in the winter months.
Im sorry but I cant remember much about improving my saliva production back then. I was going thru heck with 8 months of 3x a day picc line very strong antibiotics, seeing the wound specialists every other day and doing HBO which is very time consuming. I had a long standing unhealing "tunnel" that was about 6-8" long from behind my left ear along my top L upper jawline to about an inch or 2 right beneath my left eye. No matter what the wound specialists tried, nothing worked to close that "tunnel". The only thing that worked was the 8 months of very strong picc line antibiotics with the HBO dives. I couldnt focus on any other ailments getting better as I had too many serious issues with compromised healing. I had 3 large areas (about 4' x 7") on my thighs for graph sites that were very slow to heal plus the large "shark bite" on my R forearm that had staples in for weeks which hurt like heck. There were so many wounds that werent healing the last thing I paid attention to was my saliva or eating. It took me way over a year, probably closer to 2 years to recover from the 2009 surgery.
Im certain you have lots more time to see improvements with your sense of taste, saliva production and eventually build yourself up to eating almost normally like you did before you had OC. I had a good friend who thought she was completely recovered from her mandibulectomy but about 3 years after her surgery she started working with a speech therapist who worked wonders with helping her to relearn how to improve her eating. She formerly was right about the same as I still am with only a very few items Im able to eat. After a few months and lots of practicing her ability to eat was noticeably improved and she could eat almost anything she liked. I was very impressed at the progress she made!!! After you are getting closer to being 2 years post rads, Id check in with your doc and see if they could refer you to a speech therapist or SLP that could help you with your eating. It takes lots of dedication and hard work but Im almost positive if my friend could overcome what she did, you can too
. I just wish it didnt take such a long time!!!
Hang in there!!! There really is hope for an improvement down the road