Improvements

ERomanO

There is a bit of a gray area between improvemnts and just getting used to the new normal, but little by little I've noticed some definite improvements, especially in my saliva recently.  When I think back to a year ago I didn't really know about Xylimelts or Act dry mouth lozenges, so I had to be absolutely sure that I had water with me at all times.  If I didn't my throat would get uncomfortably dry.  After I learned (on here) about the dry mouth products available they became a part of my daily regimen.  Even though they helped a lot I still had to make sure I had some water with me because those products helped to keep my throat from drying out but the rest of my mouth still needed the moisture.  In time I found myself able to forgo the water much of the time but I was still reliant on the Xylitol products.

Recently I noticed that my tongue felt sensitive... almost as if it had been burned.  At first aI attributed that to eating to many acidy foods, but even after I cut out the acid the sensitivity remained.  Hoping that this wasn't some sort of medical issue I thought about what else I may be eating that could cause this.  It then ocurred to me that I was using the Xylimelts excessively.  Just like a chain smoker I would put a new one in my mouth as the previuos one was in its final throws.  I thought to myself that although Xylitol helps, overdoing it can't be good. So I cut way back on thr Xylimelts, almost cutting them out altogether, and viola!, the soreness went away.  Now I only use one at night and just use the Act lozenges occasionally.  Although eating foods with "foobricants" helps, I don't feel like I dare not take a bite of anything unless I have water nearby.  I think my overuse of the dry mouth produts was hiding ther fact that my saliva was actually getting better.

The neuropathy is still around, but I have noticed a little improvement there for several months now.  I'm sure that I've gotten used to it, too, just as I have gotten used to my tinnitus.  Now if I could only get used to lower back pain I'd be doing alright!

It's really hard to tell if fatigue is an issue or not.  I push myself physically each week to where I sometimes just run out of gas and can't help but become exhauted.  But I also think you can't get to your 60's without feeling a little more tired than you used to.  But I feel like the physical activity is helping me feel beter in general, so I keep at it.

All this typiing has tired me out.  I think I need a nap!

My best to all of you!

MarineE5

I think I need a Nap

ERomanO, 

After reading your post, I think I can use a nap as well . Kidding aside, thank you for the recent information on the Xylimelts and Act dry mouth Lozengers. It is something that we should be aware of as doing anything in excess can have side effects.

Like you, I try to keep moving depending on how I feel each morning. Some days I have good energy and think I am 29 to only find out later in the day that I start to feel my age of 72. I stop once I start feeling clumsy so I don't hurt myself. 

My Best to You and Everyone Here

Sabrina23

So glad to hear E Romano on improving

So happy to hear on your improvements ERomano.  God Bless All on this forum and may we all share in improvements and be NED! Prayers are with everyone on this forum. 

 

Logan51

Thanks for the info

E R

Did not know about Xilemelts. Now that I can't swallow except in extremely small sips, and it going who knows where, I've been an ice cube addict! Will see if I can find and try them in moderation.

Thanks

ERomanO

Logan51 said:

Thanks for the info

E R

Did not know about Xilemelts. Now that I can't swallow except in extremely small sips, and it going who knows where, I've been an ice cube addict! Will see if I can find and try them in moderation.

Thanks

Xylimelts may not be for you,

Xylimelts may not be for you, Dave.  Whatever is created from the dissolving of the disk has to go somewhere, and I don't think you want to aspirate it.  Have you tried the Biotene oral rinse and/or the toothpaste?  Maybe those would be better for you since you don't swallow them???

phillyboy

Improvements

 Improvement for me is very slow . 24 months post neck radiation and maybe 10% saliva and taste have recently returned. Saliva is so important for your mouth. Xylimelts are essential for me at night and help. 4 hours per disc then water every 15 minutes with some biotene spray. During day ,water every 15 minutes, avoid dry ,salty food especially bread which is my favorite. Still have neuropathy but very slow to improve even with strong medicines that have other unpleasant effects. No longer taking them. Ear damage is permanent and very annoying. Hearing aids did not help. Mouth sores are still around.This coupled with the problems of aging are affecting quality of life. Fortunately I can eat small pieces and swallow and am thankful for that. Cancer affects everyone differently and  you have to deal the best you can with this disease. This new norm is not easy!

Logan51

E R

Toothpaste? Yes. And regular mouthwash. Was told water is lung friendly, so have a "thing" now for ice cubes. 

Thanks for the advisory warning.

ERomanO

phillyboy said:

Improvements

 Improvement for me is very slow . 24 months post neck radiation and maybe 10% saliva and taste have recently returned. Saliva is so important for your mouth. Xylimelts are essential for me at night and help. 4 hours per disc then water every 15 minutes with some biotene spray. During day ,water every 15 minutes, avoid dry ,salty food especially bread which is my favorite. Still have neuropathy but very slow to improve even with strong medicines that have other unpleasant effects. No longer taking them. Ear damage is permanent and very annoying. Hearing aids did not help. Mouth sores are still around.This coupled with the problems of aging are affecting quality of life. Fortunately I can eat small pieces and swallow and am thankful for that. Cancer affects everyone differently and  you have to deal the best you can with this disease. This new norm is not easy!

I got lucky, I guess

I have been living with tinnitus for 20-25 years... ringing in my ears 24/7.  It's unpleasant, but I've just learned to live with it.  So when I was told that cicplatin can cause permanent hearing loss, that worried me more than anything, and I was so relieved when it didn't happen.

I'm taking 300mg Gabapentin tablets 4 times a day.  At first they made me woozy, but that subsided within a few weeks.  I don't think it affects me at all now, other than taking the edge off of the neuropathy. 

I forgot about the Biotene spray, but I was using that quite a bit also.  I probably wasn't much different than you when it came to dealing with dry mouth - it was a non-stop effort. But slowly - almost unnoticed - it has gotten a little better.  There are still some things that simply will not go down without a sip of water, but as long as there is something - and it doesn't have to be much - in or with the food that acts as a lubricant, swalling isn't an issue.  I've also noticed that things that would normally cause the dry mouth to worsen, like coffee or alcohol, don't have that effect anymore.  I can enjoy a glass of dry red wine in the evening without my mouth feeling like it's sriveling up.

I'm not saying that I've escaped that "new normal" and returned to the old normal, but there has been improvement, and I think it's important for others to see that sometims things can get better.

ERomanO

Logan51 said:

E R

Toothpaste? Yes. And regular mouthwash. Was told water is lung friendly, so have a "thing" now for ice cubes. 

Thanks for the advisory warning.

I still have been using one

I still have been using one Xylimelt disk at night, and usually without any issue.  But last night was one of those nights when a little bit trickled down the old windpipe, causing me to wake up and cough it out.  I may have to try forgoing the Xylimelt disk and just brush with the Biotene toothpaste before going to bed (I don't use it very often).  Might have to go back to having a small glass of water next to the bed in case I wake up with a parched throat, which isn't too pleasant ether.

Seems like we can't get away from haviong to make the constant adjustments.

ProustLover

ERomanO said:

I still have been using one

I still have been using one Xylimelt disk at night, and usually without any issue.  But last night was one of those nights when a little bit trickled down the old windpipe, causing me to wake up and cough it out.  I may have to try forgoing the Xylimelt disk and just brush with the Biotene toothpaste before going to bed (I don't use it very often).  Might have to go back to having a small glass of water next to the bed in case I wake up with a parched throat, which isn't too pleasant ether.

Seems like we can't get away from haviong to make the constant adjustments.

Lubricity

My husband used a spray called Lubricity which we ordered from Amazon.  It was pricey, but worked best during that time period when he woke up frequently during night with parched throat.  The nurse at the radiation place gave him some free samples, and it really helped him.   Over time, his saliva has returned to great extent, and he relies mostly on water and biotene dry mouth oral rinse.  

CivilMatt

ERomanO,

ERomanO,

I have been traveling inside the “gray zone” of recovery, side effects and (new normal) since my beginning of post treatment in March of 2012. I have tried XyliMelts, Biotene,Stoppers4, Spry and many others (gum, lozenges, rinse).   I currently take two XyliMelts at bedtime, (every night).

Side note:  My wife buys the XyliMelts, Spry tablets and Biotene dry  mouth rinse,1 liter bottle, on line and in bulk, so I always haves a supply of dry mouth relief, for when I need them.

I can go to sleep without taking the XyliMelts , but if I do not take them, I will wake up with an extremely dry and parched mouth. It is almost always better to have taken them. Usually, they are dissolved by 3am. And the residual effect carries me to morning.  I estimate that I have gone through around 5,500 XyliMelt dissolving discs.  Only once did I inhale one in my sleep and I immediately got out the instructions and read about…”what would happen if inhaled a XyliMelt disc?” Whether the disc is in your mouth or throat or lung, the disc will entirely dissolve, so nothing would need to be done but give it time to dissolve.  Coughing may help.  Who knew that being a H&N survivor would be so exciting.  Also, my dentist asked me  “if I starting chewing tobacco because of a red mark on my gums.” I told him about the XyliMelts and he was fine with my  answer. I actually was a little offended that he would ask about me using chewing tobacco as I thought the condition of my nice healthy, white teeth would preclude such a question.  That brings me to my final XyliMelt positive dental information I have. I have had good dental check-ups for 7y,7m post treatment and I think the moisture in my mouth from the Xylimelts has been good for my teeth. As a side note, I did not lose any teeth to rad treatments and my rad onc and my dentist did talk to each other before my treatments began.

At more than 7 years post I have decent saliva, but I do probably drink 10 glasses of water a day. I do drink a lot of water or tea or milk with each meal.  I do have an occasional pop, but pop is very strong to me “new normal”.  I do like pop, just not as much as I did before BIG C.  I have an assortment of water bottles and I am always trying to find a better one. I ask people for a glass of water all the time, whether I am at the dentist, the doctor or a meeting with local, state of federal officials.  100% of the time, folks will help me out. I realize I can go for hours without a drink, but I prefer to be ready at all times.

One last thing, I am still having positive improvements to my taste, at 7+ years post treatment.  I feel lucky that my taste is pretty good.  It is VERY, VERY, VERY different from the old Matt, but it is good.

This post took me for every to write. It is sunny outside and I am out of here.

Matt

 

 

ERomanO

ProustLover said:

Lubricity

My husband used a spray called Lubricity which we ordered from Amazon.  It was pricey, but worked best during that time period when he woke up frequently during night with parched throat.  The nurse at the radiation place gave him some free samples, and it really helped him.   Over time, his saliva has returned to great extent, and he relies mostly on water and biotene dry mouth oral rinse.  

Thanks for the suggestion!

I will give it a try.  I slept w/o a Xylimelt last night and woke up one time with a bit of a dry throat.  A sip of water took care of that.

ERomanO

The "gray zone"

That's a good way of putting it, Matt.  As I replied to ProustLover above, I went without a Xylimelt last night and woke up once with a dry throat.  My mouth feels a little drier at night in general so I suppose going back to using one disk at bedtime (Dave K, take note as a little aspiration is apparently not a big deal).  I am avoiding using 2 at a time per the "acid burned tongue" I was experiencing with overuse.

The strange thing with the Xylimelt disks is that they will stick quickly and very securely to the upper gum on the right side, but not so on thr left side.  As long as I adhere it to the right side I think there is little to no chance of one dislodging.

At my last visit with my dentist he commented on how I have at least a little bit of saliva and how some other radiated throat cancer patients he has/had have absolutely none and how his mirror sticks to their cheek.  My teeth, although kind of crooked in places, are in very good shape

At my last visit I asked the one nurse practiioner what their patient statistics say is the average time it takes for saliva to return and she said about 5 years.  That's acceptable to me.

Fortunately I sort of lost my taste for pop a long time ago.  I used to drink gatorade after biking for a long distance in warm weather, but I lost that taste with my treatments.  So it's almost all water for me.  Other than that my taste buds have come back easily to 90%, maybe 95%.  I just wish I could leave some of thr calories behind.

The gray zone has made me re-examine my strategies on coping with side effects, and in a positive way.

Thanks for that "reality tour bus" cartoon.  That put a smile on my face this morning!