OP Contributing Member (25+ posts) Joined: Feb 2012 Posts: 36 Likes: 4 | Hello Vicki: I would also like to apologize to you for not acknowledging your kind reply.
It is indeed a bizarre phenomenon, this excessive projectile saliva. I was told immediately after my treatments ended by my surgical oncologist and radiation oncologist that they were able to save some of my salivary glands but others were destroyed. They explained xerostomia and told me I would experience this for the rest of my life. My radiation oncologist prescribed Pilocarpine, a medication to treat “dry mouth”, from which I was indeed suffering. I cannot say it helped. I can say my surgical oncologist (who happened to be a world renowned surgeon, professor and researcher) simply shook his head indicating he had no faith in this drug. I continued with this medication for many years yet always had no saliva. I should also mention that I have seen many speech therapists and none were of any help to me.
One day I just decided to discontinue treatment with this drug. Oddly enough I noticed no change. Ultimately it became necessary to have all my teeth removed. Initially after the extraction I received full dentures (upper and lower). Unfortunately I was unable to wear them successfully (that’s another story). There came a point in time when I noticed my mouth was not continuously dry. Upon desisting wearing the dentures I began to notice the “spewing saliva syndrome”, particularly when I speak loudly. It persists to this day.
So it’s a perplexing situation for which nobody has been able to explain or offer a remedy. I remain hesitant to undergo any type of injections because I fear the potential negative side effects.
Lastly I must say I too, like your Dad, found comfort in wearing masks because they contained the saliva spray; and I too am constantly cleaning phone, tablet, computer, and car interior.
Age 60 DX SCC T3N1M0 R BOT 10/04 135lbs TX Hemi-Gloss 11/04 MET Neck 12/04 TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose 06/05 RND,42 nodes 1 bad,All clear 120lbs DX femoral hernia 09/09,repair 10/09 94lbs HBO 11-12/10 11/10 All teeth out,05/11 dentures DX hypothyroid,04/13 DX inguinal hernia,repair,04/15 127lbs DX cachexia (CACS),03/16 98lbs DX EPI, TX PERT,10/18 115lbs DX RFS,11/18 DX iron deficiency anemia,02/19 118lbs TX infusions,04-06/19 115lbs DX calcified atheroma carotid |