More Dental Stuff

fishmanpa said:

No Offense

Rachel,

No offense taken at all! None whatsoever!

Don't hold back on what you have to say by any means. The fact is, what you posted is what everyone needs to hear from the get go! I'm obviously frustrated with my situation. I'm tired of being sick and tired. Sometimes I read threads here and elsewhere and the facts have sugar sprinkled on them. I'd rather have them straight up, no chaser

I know I'm fortunate as many here have had it a LOT worse than I have but dang! Medical science has come a long way in the last 10 years and you'd think they would help prepare you better. I'm not griping on the level of care I received. They saved my life at JH. I would not have been so fortunate at the hospital I started at I assure you!

Again Rachel. you did not offend me in the slightest way. I needed to vent and as I read my post again, it's exactly what I was doing. 

Positive thoughts and prayers,

"T"

 

 

 

 

T,

i am glad.  I wasnt sure if it was me that told you too much or that the hospital didnt say enough.  In my case they did warn heavelly about teeth, told me it was a study about the effects of cisplatin and rad on hearing, never said i could lose my hearing.  Did know about dry mouth and scarring down of jaw, but nothing about soft palate and swallowing and my voice.  Each side effect took a hit emtionally, i liked selling flooring i loved my contractors but i counlfnt communicate right with them and they slowly found other people, it hurt( my ego more probably).  But no one can take from me the pride of the battle i fought and won,  it even tries to take from me again and again through the years but not one side effect made me wish the alternative happened, and that good or bad i missed one day in the last 12.5 yrs the Lord blessed me with and side effect or not i hope He continues to bless me with years more and the strength to face anything lingering aroung the corner.

hang in there, rest when the pain lets you, it does get better i PROMISE

Love,

Rachel

rachel12yrsuv said:

T,
i am glad.  I wasnt sure

T,

i am glad.  I wasnt sure if it was me that told you too much or that the hospital didnt say enough.  In my case they did warn heavelly about teeth, told me it was a study about the effects of cisplatin and rad on hearing, never said i could lose my hearing.  Did know about dry mouth and scarring down of jaw, but nothing about soft palate and swallowing and my voice.  Each side effect took a hit emtionally, i liked selling flooring i loved my contractors but i counlfnt communicate right with them and they slowly found other people, it hurt( my ego more probably).  But no one can take from me the pride of the battle i fought and won,  it even tries to take from me again and again through the years but not one side effect made me wish the alternative happened, and that good or bad i missed one day in the last 12.5 yrs the Lord blessed me with and side effect or not i hope He continues to bless me with years more and the strength to face anything lingering aroung the corner.

hang in there, rest when the pain lets you, it does get better i PROMISE

Love,

Rachel

My point.....

Even with all of those warnings, awareness, possibility of some pretty bad "Longterm" side effects, would have you opted to not have treatment? I know that I was pretty aware of most of those potential longterm side effects.... I still would have opted for treatment as I did...

If the cancer killed me short term, I wouldn't really matter about the longterm effects of treatment....

I mean what alternatives do you have...

A lesser form of treatment, with the potential of recurrence, or not doing as much upfront as possible...

I think the MD's see it as doing as much as they can to kill the cancer, without killing you first of course. If they don't accomplish that, no need to worry about long term future...

JG

fishmanpa said:

Perspective

Thanks John,

I appreciate the point of view and I agree with you. I don't know how many times I heard this about treatment: "They practically kill you to get you better". Well,  getting to that point was a lot more challenging than I could have ever imagined. Granted, the alternative is fertilizer so there's no doubt in the plan of action to rid me of the cancer. 

Overall, I've not suffered many/most of the side effects listed for rads/chemo. Considering my age and medical history, I fared rather well considering but I'm frustrated (can you tell?). Having to feed and hydrate myself from the PEG to the gout attack to the fatigue etc. has me practically climbing the walls. I miss work! My goal was to at least be back to the office by next week part time (4 hours a day max). If there's not a dramatic improvement in the next week, that's not going to happen  
It's a catch 22 in that I need to get back to the physical therapy for my shoulder as well as swallowing exercises and I'm limited due to the side effects I'm dealing with... ARRGGG! 

The attitude aspect I know was key in me getting through this thus far. To say things got pretty rough is an understatement and sugar coats the reality. There were times, and there still are, where I had/have to withdrawl totally into myself just to deal with pain and frustration. However, it's that inner room where I gain perspective. There's so much going on in the present that needs my full attention. I've been blindsided a few times in my journey and that's what I'm wanting to avoid. 

Thanks again for your post. Sometimes seeing in writing what you already know is the nudge you need to keep moving forward.

"T"

You are only in control and in charge to a point... Your body is what is really in charge, if it's not where it needs to be for you to accomplish the goals you have set, it's going to let you know...as it has.

BTW, from above..., did you think killing you, or nearly doing so would be easy, LOL... I know you are tougher than that, you're like me, you're going kicking and screaming...

Adapt, that's a key... control what you can when you can, and adapt to pan B when needed. Accomplish those things that take more energy and thought when you can, push the less physical things to the times when you have less energy to deal with them.

You seem to have everything down as for calories, hydration, meds, etc...

It's just the part that you don't have a few things where you want them as of yet...., you will I promise. But not a minute sooner than your body is ready.

Now might be a good time to get some of those creative juices flowing that takes more mental power than brute strength... Catch up on the things that you hate normally, but never have time for.

Just re-direct your plans and schedule to fit your energy and strength...

You have done amazing, and though YOU don't see it at times, we that have been in your shoes do...

JG

MarineE5 said:

My guess is yes

Don,

I would think that one of your Doctors would prescribe the higher Flouride for you if they know your history of H & N cancer.

My Best to You and Everyone Here

Get that Prevident 5000.  There is one for us with dry mouth problems, and my gorgeous, sky blue eyed, blonde Dentist orders it for me and always is sure it's in stock at the office.  I just find it amazing how my medical team takes care of me.  My Dentist even went to the trouble of taking extra classes at the LSU Dental School in New Orleans that deal with H & C patients that she may have to deal with in the future.  For the last four years, I've been her only H & C patient.  I've been in this routine every morning in dealing with Colgate Floride Gel and the trays for 20 minutes....pop in a Salagen....a Gabapentin for Neuropathy....a Prevacid.....3 minutes using the Waterpick water flosser...and then a good 3/4 minute brushing with the Prevident.  With the exception of the Prevacid, I follow this same routine prior to hitting the hay.  Teeth cleaned (no deep) every 3 months....complete exam after cleaning, and xray annually.  There's not much more I can do, except use some Act Floride in the Waterpick.  Only problem I've had is an irritation where my wisdom tooth was yanked prior to rad treatment, so looks like I'm not going to change a thing and continue to knock on wood.

Larry

MarineE5 said:

My own little test/study

"T",

Like you, I was concerned about the outcome of switching from Trays with Flouride 1.1% Gel to Toothpaste with the 1.1% Flouride in it like the Gel used in the Trays. I was concerned about future affects, does the toothpaste equal the Gel?

My study history is as I mentioned in other posts. 5 years using Trays with one drop of Gel for each tooth in the Trays. No cavities, only problem was the cracked teeth from me biting on some hard food, caps installed and all is well. At the 5 yr mark, switched to the Flouride Toothpaste, same Flouride level 1.1%. Difference is that I brush it on like I am brushing my teeth normally, instead of rinsing with water right after brushing, I spit and let the remaining little bit set on my teeth for 30 minutes just like I used the Trays. As mentioned before, I tend to over do things, so I try for 60 minutes if I can, if not, after 30 minutes, I rinse and gargle as usual.

Results for the last 3 plus years, no cavities so far. I use the Previ-Dent 5000 toothpaste. So, in my own little study, the Trays Flouride Gel and the Brushing of the Flouride Toothpaste are equal in my results. I will know better at the 5 year mark of brushing. I have not cracked anymore teeth as I am careful to watch what I am eating.

I was lucky, the Hospital that I was treated at was a Teaching Hospital. They had a Cancer Team that included a Cancer Dentist who was up front about the care of my teeth and future problems. He made it very clear that the care of my teeth would be for the rest of my life and if I couldn't commit to the program, then get Dentures after all my teeth were removed and after treatments.

I was also told by him to make sure that no matter where I get my teeth cleaned to let them know not to do a DEEP cleaning, as the gums could be damaged and cause issues down the road.

My Best to You and Everyone Here

Thank you for all that information, I think it's very helpful. First, i'm going to try leaving the toothpaste on my teeth as using the fluoride try's are just too painful.....that's such a great idea. Second, I'm going to talk to my dentist because he has recommended DEEP cleanings and I've had at least one.  Besides my teeth issues I've also had a lot of gum recession and just recently had unsuccessful gum graphing surgery. Now I wonder if the deep clean had anything to do with the graphing failure. 

It's the things that make you go hmmmmmmm

Thank you again.....