7 year follow up

ERomanO

Last week I went up to Cleveland Clinic for my 7 year follow up. I met with 2 different NPs (3, if you count the one that was shadowing). It was pretty routine - lots of questions, say ahhh, scope through my nose and down to the original BOT site, say other syllables, etc. Everything looked good and I once again proved to be unremarkable. I also had a chest x-ray. All good there, too.

I still suffer from dry mouth and don't think it's all that bad. I have Act dry mouth lozenges with me at all times and use them as needed. I always need a little sip of water while eating, otherwise dry foods will get stuck in my throat. It's kind of a minor thing and just part of my routine.

Neuropathy is still a thing, but it seems to be diminishing a bit. I keep a stockpile of gabapentin and on most days I don't take any until the late afternoon and evening. A couple week ago I had acute bronchitis and was taking cough syrup with codeine, among other medications. I noticed that I didn't take any gabapentin for about a week or so. I guess anything that numbs your senses gets the job done.

All in all I feel pretty good, the effects from cancer treatments being is the least of my least of my issues (and none are so bad that it degrades my quality of life… much). But I still remain vigilant, like when I had a little white spot show up under my tongue, next to a molar (this was while I had bronchitis). Of course, the first thing that comes to mind is "could this be a reoccurrence?". No, it was just a canker sore and was gone in a few days. I suspect I'll be looking over my shoulder this way for the duration.

My girlfriend is a triage nurse at Cleveland Clinic, and a few weeks ago she received a clinic wide memo saying that all cancer research has stopped due to federal funds being cut off. This is concerning. I'm not sure how much this would affect Head & Neck cancer, but C is C and research is important. I hope the powers that be can find a way to keep it going.

I apologize for not being around, but life has not slowed down. In fact, it has gotten busier than ever… and in a good way.

To those of you just starting out on this journey, or just finished up treatments and heading into recovery, keep the faith and find good, practical advice here from those that have been there. All the best to you!

goffrey

It is horrible how cancer research has been cut off, even for children. I have friends in the oncology field and they are so disheartened by what is happening. It WILL impact lives.

ERomanO

ESPECIALLY for children!

wbcgaruss

Good to hear you had a great 7-year follow-up ERomanO.

After H&N cancer, you can't get better news than that.

Thanks for mentioning Act dry mouth lozenges. I use the Act Dry Mouth Mouthwash in the morning after brushing my teeth as per my Dental hygienist's suggestion, but I did not know they made lozenges. I will give them a try; something else to add to my dry mouth arsenal.

I remember you showing up on the forum here, and it sure doesn't seem like 7 years, my they have gone by so quickly.

Overall, you sound like you are doing very well. I am so glad for you.

Yes, it is too bad they are cutting cancer research, but hopefully it is just temporary.

Wishing You The Best

Take Care, God Bless

Russ

I celebrate with you on 7 years of NED

ERomanO

I agree, Russ - the time just flies by!

I tried Biotine dry mouth rinse, but isn't find it all that effective. Act lozenges, on the other hand, work pretty well. There was another member here when I first joined that mentioned the Act lozenges. That's where I heard about them. I can't remember his name though.

One of the NPs asked if I was still using salt and soda rinse, and I said no. She said it would help with the mucus buildup (maybe from the bronchitis). Honestly, after I finished treatments and was recovering, I stopped using the salt and soda rinse and threw away the bottles I used to mix it in and to spit into after each rinse (which was all day long). After 7 or 8 weeks, that tasted became disgusting to me, and I never wanted to taste it again. I'm not sure if I'll take her aadvice or not.

I hope you're doing well, too.

MarineE5

Hello ERomanO,

Good to see you and read your good report. Yes, we are like the old Timex watch, just keep ticking. I am going to look for those Act lozenges and give them a try.

My Best to You and Everyone Here

ERomanO

Hello MarineE5!

Good to see you still ticking.

Re: Act dry mouth lozenges. I prefer the mint flavor. I’ve had the honey/lemon flavor as well, but didn’t think it was as good as the mint. I think the mint stimulates the salivary glands.

All the best to you!

steven59

give me the act gum.

LyndaKay54

https://csn.cancer.org/discussion/comment/1722650#Comment_1722650

I too will try the Act lozenges, as the Biotine doesn't work that great for me either. Thanks for mentioning them and congratulations on your 7 years !

LyndaKay54

wbcgaruss

I agree, I have tried Biotene products and they don't meet the hype they are given.

Don't forget the old standard that always worked for me and so many others on the board here "Xylimelts"

Also I have had some good experiences using a couple CVS Products…

One is a copy of the Xylimelts and works nearly as well called "Dry Mouth Discs"

CVS also has a spray that I am satisfied with called? Well what else other than "Dry Mouth Spray"

Also what keeps a constant activating of extra saliva is chewing gum. The act of chewing gum is chewing, thus urging more saliva to help dissolve food simulated by the gum.
Not just any gum though. I was told by a hygienist that I should look at the ingredients on a pack of gum and the one with Xylitol listed closest to the top of the ingredient list contains the highest level of Xylitol. The farther down on the list of ingredients it falls the less it is. The gum below is very close to the top of the list as you see.

My Dental Hygienist also recommends "Act Dry mouth Mouthwash" in the morning after brushing. She said keep it in swishing around for at least 30 seconds or more.

Wishing everyone a wonderful day.

Take Care, God Bless

Russ

Larry449

https://csn.cancer.org/discussion/comment/1722773#Comment_1722773

Russ, I tried the Xylimelts for my dry mouth a couple years ago but - hard to explain- my teeth are crooked and I just couldn’t get them to stick! Probably threw more than half of them away. Last week my dentist mentioned them and I told him they wouldn’t stick. He said I’m not his first patient to say that and said other patients have success sticking them to the inside of their cheeks instead of their teeth. I’ll be giving them another try.

wbcgaruss

Hi Larry, good to hear from you.

I know where you are at, I have had some issues with them sticking at times.

My No.1 Problem I think was that I would put one in and after a short period of time feel like I needed to test it to see if it is really sticking. Many times I found it was stuck pretty good and would have stayed if I would have left it alone or given it just a bit more time. But now I broke it loose and we are starting the process all over again. Also it seems to me that once you un-stick it that makes it take a little longer the second time to get it adhered again.

Just put the Xylimelt tablet in and settle it into into a spot and just relax and forget about it and don't test it at all to see if it is sticking, just let it set and most times I have found it adheres no issues.

A couple things I will mention here you probably already know it and do it.

Put the disc on the outside, between the cheek and gum or tooth, not on the inside with the tongue. This is so if it does come loose while you are sleeping the chances of you swallowing it are greatly minimized. In fact the adhesion properties of the tabs are designed I think for just this reason, sleeping and not having an issue.

Make sure you are putting the thinner portion of the Xylimelt Disc against your teeth, this is the adhering part which is a light brown, which you probably already knew but I thought I would mention it.

Also imagine someone with no teeth, I would imagine just putting it against your gum would work fine. In fact I think they are made to get them wet and the adhering side works like a glue sort of and they should stick to a lot of surfaces as long as thy aren't radically uneven.

CVS has a couple products I have been using and tried them because they are on with products offered under our medicare advantage plan involving CVS.

One is a copy of Xylimelts called Dry Mouth Discs which I would rate just about as good with a little different flavor.

The other is CVS Dry Mouth Spray which seems to work and last pretty well as long as you avoid swallowing a lot, if so then spray more in.

And finally if you are out and about and going to be awake I slip a piece of Trident gum between my cheek and gum or chew it and it really helps and has Xylitol in it.

Wishing you the very best…

Take Care, God Bless

Russ