Can I Borrow Someones Saliva????

Tomorrow will be 7 weeks post treatments. I started back to work a couple weeks ago and found out pretty quickly that I returned a bit too soon. My work is letting me take Wednesdays off at least thru the month of July to give me that mid-week break. It seems to be working well. I know everyone is different but can I get an idea from those of you who have "been there" when their saliva glands started working again? I miss mine a lot. It's 104 degrees in Tulsa today so saliva would be great. I had no surgeries so just the normal 7 weeks worth of radiation on the left side and chemo once a week. I'm a bit baffled why my right side glands aren't squirting. I'm doing a decent job eating but I'm still about 70% feeding tube. My tongue seems to be my second biggest issue. The left side still has a very sore spot on the left side that makes talking a chore because it's hard to talk without your tongue rubbing against your teeth which almost brings a tear to my eyes if my pain pills are starting to wear out. That's all I've got for now. I hope everyone out there; no matter what stage of treatment or recovery is doing well.
Scottie sent you a prayer.
Laurie, Pen sent you a hug.
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6 mo. out of treatment, and I still need lot's of water just to keep the throat wet, and especially to eat, tho I use the liquid nutrition as a swallowing aid, too. If you can start swallowing your liquid nutrition, you can ditch the peg tube soon after, that's what i did anyway...but yeah, the saliva thing is lookin' like it's gonna be probably life-long with me, and I'm ok with that, I guess...can't do much about it anyway, so carrying tasty liquid refreshment and lot's of smoothies is in my future, and prolly yours, too...take care and hang in there, James!!!
From reading the other post it looks like everyone has saliva issues. Right now swallowing the liquid nutrition is doable but way to often it "tickles" (for lack of a better work)the sore spot on the back of my throat causing me to cough.....which causes me to gag.....we all know what happens when gagging starts. I'll try again next week and eventually I'll make it work......thanks for the info
I noticed a difference a month or so ago - I'm nine months post treatment. If my mouth is dry, I can close my mouth for about fifteen seconds and it gets moist. I still need water but not nearly as much as I did at six months out (there's hope Ed). It seems to be continually improving. I am taking pilocarpine for saliva production. That helped immediately after treatment and seems to still be helping. Angie
9 months.....YUCK........LOL......I'll be patient being that I really don't have an option. I'll ask my Dr. or Dentist about pilocarpine...Thanks
The other name for pilocarpine is saligen I think. It helps. My accupunturist (internal medicine) doc prescribed it initially. He then went out with stomach cancer and my rad onc prescribes it now.
Hi James..I'm a year + 2 months and saliva is better but not 'back' to normal. The ones that have not been bombed by radiation will try to take over for the ones that are fried but doesn't seem to me that it will be completely back ever. Eating and drymouth are two of the continuing inconveniences you might have. Bread, ground meet, swallowing etc...with some foods keep the slow process in your head. I, too had the irritating tongue soreness especially from talking (I'm a band director) so talking was a heavy dose of "back to work" too early. Even now, I have an irritating ulcer on the right side of my tongue where my teeth (back molars)'s really pissing me off but I can't get rid of it. Keep us posted and remember - Improvements a little at a time MONTH BY MONTH!!!
Thanks for the info Pat. I guess I'll wait a bit longer before I start crying too much about my lack of saliva.
Acupuncture helped my saliva. (I am minus one saliva gland due to surgery.) About the time that I wasn't sure if acupuncture was really working or not, I had to miss a week and could really feel the difference in my saliva. I am 2 1/2 years out of radiation and 1 1/2 year cancer free. I still have saliva problems. More so when talking or if I am stuffy from allergies and breathing out of my mouth. I keep water with me and by my bedside and also carry a small fine mist spray bottle of Biotene dry mouth rinse. I use that more when I don't want to swallow water - like in the middle of the night or talking to someone - I still have a problem swallowing thin liquids. That has gotten better. A little Biotene spray helps and is probably less in my mouth than after gargling with the rinse. The other Biotene products give me tiny blisters?!? I could not talk for a couple months after radiation so I do not remember how the tongue felt then. I still have problems with a sore spot on my tongue and it rubbing my teeth on the right side. I am seeing a doc for that. I cannot imagine going back to work as early as you did. I had thought of it several times but never made it back for one reason or another. Now I think maybe in a few months. Take care, Hugs and prayers Sandyjo
Hi James, Oh boy, the saliva thing is terrible! I hate it! I did try pilocarpine and didn't think it helped. I may try it again but it's no magic pill. As far as the right side of your neck, are you sure it wasn't radiated? I know that even with a left cancer only, they commonly radiate the opposite neck since rarely, the cancer cells can migrate to the "goodside". If you have hair loss symmetrcally fully across the back of your head then they radiated both sides and included the posterior lymph nodes ( I think). And, my tongue had one large healing area too. Very painful to eat, talk, etc. Hurts worse than my throat. Recovery is a b*****. I am miserable. Just hanging on. Hugs, Karen
I've never even heard of pilocarpine until today. I was radiated on both sides just a lot more on the left side. HAIR LOSS.....YES...A couple weeks ago I went to my hair cutting lady an said "YO. My hair is now so thin you gotta do something" SHE DID. She didn't cut it all off but it hasn't been this short since I was in he military......but it looks much better than the thin longer stuff I was sporting. Facial/neck hair is not growing at all on either side. Just my luck I'm sure I still have ear and nose hair :) I think both of us are still too soon out of treatments to have saliva glands working. At least that's a theme I'm reading from the post from the "more experienced" folks. I'll say it again: WE'LL GET THERE
yeah James i'm busted too..but every day is a new climb up a new mountain,cos there is more/less of me than yesterday..interesting,but not fun..God's got my back so i'll make too
I'll second Paul's suggestion about water. Make sure you are getting plenty of water. Your pain meds are going to dry you out and if you are even a little dehydrated, the salivary glands aren't gonna work well (even the good ones). Also, I used Biotene frequently (and still do) and that seemed to help. Hang in there, brother! This is tough time. You are getting better (just not as fast as you would like). I am praying for you! Scottie
As with most everyone else, saliva or lack of it is my biggest issue now also. My Rad onc. said it could take up to a year or even longer to recover some salivary glands and that more than likely I would have some degree of dry mouth for the rest of my life. Ya its irritating but considering the alternaative I think I can adapt to it. Lots of water and Biotene products. Worst is at night, waking up every 1.5 to 2 hours either to swig water or to piss from drinking all that water, lol. Hang tough, the tongue, mouth and throat will get better. You continue to be in my prayers as does everyone facing this battle. Take care and still get plenty of rest.
Hang in there buddy. You will improve. I wish I had some saliva to give you but alas, my mouth is the mojave desert also.
Someone Please Give Me any Input Possible, Hi all, I am new here, and was just digonised with T2N2Mo squamous cell cancer of the tonsil which seems to be related to a viral origin because it is P16 positive, also left Lymph node is swollen, but CT/PET show nothing anywhere else. I am told this is fairly easy to treat, I am to do Chemo and radiation for 6 to 7 weeks, IMRT or Tomo, not sure yet. And was told there is a very good chance I may not need any surgery after the treatment. Initially was told that I had to go through a 14 to 16 hour surgery first, then my treatment. Im looking to chat with someone that is going through this or has gone through this similar situation. I really Just want to discuss the Treatment vs Sergury first issue! My Sergicual Oncoligst wanted me to have the surgery first then treatment, the RT and Chemo Oncoligst told me either way I need the treatment, and if I do the treatment first I may not need the surgery, another surgeon kinda confirmed this as well. Here is a Quote form Him "You have a T2N2Mo squamous cell cancer of the tonsil which seems to be related to a viral origin because it is P16 positive. This is advanced disease and you will most likely require all three modalities to treat it (surgery, Chemo, and radiation). Your options for best survival are: 1) Surgery followed by radiation and possible chemo therapy depending on the final pathology 2) Chemo radiation and saving surgery for salvage or residual disease. So one treatment potentially avoids surgery the other potentially avoids Chemo. There is evidence in the literature that suggesting that theses two treatment are equivalent in survival but there is also Alberta specific data that seems to suggest that surgery option offers better survival for Albertans." Thanks to anyone that can provide info.
Dale.......sorry to meet under these crappy circumstances. It sounda like we have similar cancers. I had swollen left lymph node and that was my only sore fever.......felt great....... Curious what the surgery was going to be for? Removing tonsils or lymph node or both??? My Dr. told me that since the cancer had spread to the lymph node that removing the tonsils would be of no benefit to me. I ended up doing 7 weeks of daily radiation with chemo once a week. Completed my treatments about 2 + months ago. Easy to treat.....I guess........dealing with the side effects and getting back to normal afterwards....NOT SO EASY. Read some blogs from other tonsil folks.....stay positive.......take the advise of some of us who have been there and we can tough this out with you. Keep us posted Ask questions and someone here will have an answer.
 I found the lump on my neck (lymph node) no pain or any other signs, still have no side effects at all. As far as I know the surgery was to try and remove the left tonsil and do some work on the lymph nodes, but I'm told the only advantage was a single digit higher percentage rate of success, and that this was not a proven fact.So no one ever mentioned a possible surgery to you? Are you done your Chemo and RT? What is the worst part?I have not started anything yet still waiting, should be soon though. Any info and tips on making things easier will be great,thanks
 Just thinking James, have you had a CT since finishing your treatment, if so does it look clear, or maybe it is too soon ,I don't know. Im hoping I m making the right choice by opting out of the surgery, it just seems that if there is a chance of not needing it by doing the treatment first, I feel it is worth the risk.
For myself and from what I read from other bloggers the 1st PT Scan is about 3 months after treatments. Mine is scheduled for August. We obviously hope this initial scan is cancer free; however many show scarring tissue or other abnormalities that could resemble cancer. If that is the case then another scan will be done 3 months later (November in my case) to compare with the 3 month scan. Scarring tissue should be shrinking where as a tumor could remain the same or grow larger. Not sure if this helps you make a decision or of luck buddy.
 I have already decided to do the treatment first, 6 to 7 weeks of RT with Chemo 1 time every week, and hope that no surgery is needed. Just waiting for things to start, have the mask hold done last week, and should have the feeding tube put in any time now and I think RT and Chemo will start in about 2 or 3 weeks. Sounds like you will be fine. Thanks for the Info, will keep you posted, also let me know what is happening with you! Take Care
geeeeeeeze. I just spent 30 minutes going over side affects and what to expect and it didn't download. My fingers are now pooped. I'll try again this evening and post again.
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Vital Info


February 24, 2012

Skiatook, Oklahoma 74070

October 27, 1964

Cancer Info

Tonsil Cancer

February 22, 2012

Stage 3


Oklahoma Oncology

May 10, 2012

Swollen lymph node beside that I feel great.


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