Salivary Glands Done, nada. Help

Drivingdaisy said:

ERomanO

Mine are toast and going on 4 yrs & a surgery for them for repair they are done toast. Will no longer have any Saliva.  My problem is My needing fluid constantly compounds a Sodium Condition where My sodium drops extremely low & have already had 1 stroke from it.  I fond old tests from during Chemo & My Sodium was normal but continued to decline.  unfortunately I guess My Dr didn’t care enough to address it before it went way below normal now for life.  I now have to take 6-8 sodium pills daily & eat sodium enriched foods or dinners to try to keep it up enough not to have to spend 3 days & money out of our pocket in the hospital just to get a Saline/ hydration bag to raise it it up to My new normal which should be 125, hard to keep up tho.  Read about it, very scary.  It’s like water poisoning hense why your not suppose to drink much fluid.  Try that with extreme dry mouth & 6-8 salt pills a day.  This has in turn caused since last year a stomach issue so allot of dirrahea & pain.  Losing weight back to 110 lbs after finally reaching finally 120 before stomach issues started.  I am 5’6”. Went down to  98 during treatment & on feeding tube.  All this Dr didn’t address & wont help now.  If I could get IV infusion in his lab maybe at least every 2 weeks I wouldn’t have to take all the salt that of course also messes with My Blood pressure.  He won’t due to liability issues.  Should be mointered in Hospita.  I know many friends that got these bags during their treatment.  My Dr has a IV Lab in his building & Lab, he is in a Cancer Center.  He finally broke down once and did it over a year ago before My stroke and I felt reenergized & so good.  When my sodium is up I feel better.  Not even My Kidney Dr will help.  Just so frustrating.  Was reaching out to find someone going what I am was why I asked for help.

I made some inappropriate comments, and I am truly sorry.

Your condition sounds very complicated... well beyond simply treating symptoms of dry mouth.  Have you tried seeing a different doctor?

ERomanO said:

What kind of help are you looking for?

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I know how aggravating the dry mouth is.  The worse thing about dry mouth is when my throat gets dry, so I do whatever I can not to let that happen.  I have found that ACT DRY MOUTH Moisturizing gum works thr best for quick relief.  Xylimelt tablets (one on each side) are good while sleeping, walking or other exercising.  I find that my mouth gets a little more dry when I'm doing intense workouts, probably because I have a tendancy to breath through my mouth.  Biotene oral rinse a few times a day also.  I no longer drink dry red wine (my favorite) because it causes severe dry mouth.  I still drink beer, but only lager, and only (for the most part) on weekends.  Eating foods that are either a little spicy, tart, or other wose flavorful seems to help a bit.  There is always a water bottle in my car.  

I know, dry mouth really stinks, but I either deal with it or I can lament having it and never go out in public again.  I think I'll deal with it, play the waiting game and get on with my life.

Last time I had a follow-up with my oncologist docs/nurse practitioners it was mentioned that my thyroid was okay, but borderline.  So I may have to go on thyroid meds as well.  But people I know that take them say it's no big deal.

Hi , Today marks 1 year of radiation and chemo being  done for Adneiod cysts car.   We need help with food I have tried everything Looking for reciepes for dinners or any suggestions, My husband drinks 3 ensures every meal , he can swallow but no salvia makes alot things impossible. Please Help

Drivingdaisy said:

MarineE5

Hello and thank you for responding to My post.  I am so sorry you are going thru this also.  Especially when so many on this site regain something.  Any little bit helps.  First since Treatments I do not respond well to prescription meds so the Levothyroxine tho looks good on lab reports does nothing for My energy and I am always cold.  Hard when you live in Florida and now we are already going entering into 90s weather and I’m in long sleeves.  Have to carry a lightweight sweater also anywhere I go due to places over air conditionin.  Don’t like visiting friends or family in colder temps since I can never feel warm.  Use to live up North and know how to layer but I have tried but end up miserable the whole time visiting and dread going outside.  I also developed  Sodium issue during treatments was I just explained to ERomeO above.  So yes as much as I try to move forward each day brings another issue to deal with.  So exhausted and with NO quality of life, don’t really care if I exist.

I go through spells of feeling cold, especially my hands. I attribute that to my neuropathy, or whatever is causing the neuropathy (which is still inconclusive).  I live in NE Ohio and I have found myself wearing gloves more during cool weather than I normally would, but eventually I just started trying to ignore the cold feeling because it was just that - a feeling.  It wasn't as though I was suffering from hypothermia or that circulation was cut off.

As to your sodium (electrolyte) deficiency, maybe a nutritionist can help you there.  I'm not sure if I am understanding the connection between that and the dry mouth unless you're talking about having to ingest salty foods to try to get it stabalized.  I would think taking salt tablets would get the job done without drying your mouth out more.  I would also think just trying different things (i.e. Biotene products) to give you a little relief from dry mouth would be sufficient to get by.

The other day I was telling my dentist about how eating foods with citrus causes my saliva glands to get that intense feeling, like they are trying to go into hyper drive.  He said that was a "parasympathetic respose".  My point here is that certain foods tend to be less drying and even have a tendancy to promote some saliva production.  The bonus here is that you get to eat lots of foods as you experiment.

DrivingDaisy, sounds like we were hit in the same area, left tonsil SSC. Although it metastisized to one node, MD Anderson now considers that a stage I.  I don't have the complex medical history you have, but my throat is always dry and has neuralgia (?)...feels "wooden"... from the radiation.  My salivary glands are ok, but taste buds really never came back so food doesn't taste very good. I now eat to live; I used to live to eat...loved good food.  So it's depressing, these changes.  Exercise is very important for me, and at times i've taken antidepressants. Chemo brain is certainly an issue as well. Slowed mental speed, total blank occasionally on remembering past events. Seems like a wall between me and my memory. Have to be careful not to aspirate liquids. Family, of course, and work have helped. I retire soon, so I hope that's not too stressful.

I hope you can find a path that fits for you and your needs. You've been through a lot...treatment really was brutal! You deserve the BEST! Good luck!

Four months is not a long time in H&N cancer recovery time.  At the four month mark I was getting bummed because the neuropathy that began at around thr 3 month mark was getting worse.  I was getting out and about, but dry mouth maintenance was something I really had to stay on top of.  I am now 1 month shy of the one year mark and things have gotten better - neuropathy has eased up considerably and dry mouth although ongoing is less of a nuisance.  I sometimes find myself leaving the house and forgetting a bottle of water (but I at least always keep some Xylimelts and Act dry mouth lozenges in the car).  I guess what I'm saying is that there is always the possibility that things will get better, even if only a little.    A friend of mine used to tell me that I would have to get used to a "new normal" but I didn't want to hear it. I wanted to be completely normal again.  Well, I have accepted that new normal and it isn't the end of thr world.  You and I are about the same age (tomorrow I'll turn 63) and I look at it this way - I accept how things are and I'll continue to try to enjoy my life as much as possible, even with the annoyances (note:  when I am having fun I don't even think about those annoyances).  If down the road things improve even more then that's a bonus!

I'm sorry to hear about the heart attacks.  I hope those will be a thing of the past.

Best wishes to you!