More Dental Stuff

13»

Comments

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    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

    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

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    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"

     

     

     

     

    Just Throwing This Out There....

    T, while you want it straight up, and even you yourself are frustrated at times concerning lingering effects from treatment..., not everyone can handle it straight up. It might even be counter productive for them to know things could go south one way or another down the road as aresult of treatment for cancer.

    I'm not trying to defend the medical community or how they prepare patients. I'm sure they are as different as each of us are.

    From my perspective, I think the intent is to keep you as positive and hopeful as possible initially. Someone with hope and a positive attitude will respond better than someone with a lot of uncertainties and negative thoughts.

    Get you through the battle of killing cancer first, deal with the possible side effects after you survive.

    And again, I can pretty much assure you that you won't get all of the possible long term side effects you have concerns with. Some you might, some might be totally unrelated as each of us get older.

    The point where you are currently, treatment over, but not recovering as fast as you would like is something that we all go through. That's where it comes in when you hear recovery is measured in weeks and months, even years on some things.

    I'm a big believer that positive thoughts, determination and will power is huge...

    Look at people like Lance Armstrong, regardless if he did or didn't use performance enhancers.... Look what he has overcome and accomplished.

    For me and where I am, which I know is a few years ahead of you, but I am thankful to be alive (which I know you are, no question about that), but I'll deal what the future brings me as it plays out.

    And again, like you agree, be aware, but also know that each of us are different you may not ever have some of the long term side effects that are possible.

    Anyways, my thoughts on it..

    JG 

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    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

    Flip Side

    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

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    Skiffin16 said:

    Flip Side

    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

    Exactly John and NO i wouldnt

    Exactly John and NO i wouldnt have changed anything, i was too young and i wanted and still do to LIVE!

    Thank you Jesus for it all,

    Rachel

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Skiffin16 said:

    Just Throwing This Out There....

    T, while you want it straight up, and even you yourself are frustrated at times concerning lingering effects from treatment..., not everyone can handle it straight up. It might even be counter productive for them to know things could go south one way or another down the road as aresult of treatment for cancer.

    I'm not trying to defend the medical community or how they prepare patients. I'm sure they are as different as each of us are.

    From my perspective, I think the intent is to keep you as positive and hopeful as possible initially. Someone with hope and a positive attitude will respond better than someone with a lot of uncertainties and negative thoughts.

    Get you through the battle of killing cancer first, deal with the possible side effects after you survive.

    And again, I can pretty much assure you that you won't get all of the possible long term side effects you have concerns with. Some you might, some might be totally unrelated as each of us get older.

    The point where you are currently, treatment over, but not recovering as fast as you would like is something that we all go through. That's where it comes in when you hear recovery is measured in weeks and months, even years on some things.

    I'm a big believer that positive thoughts, determination and will power is huge...

    Look at people like Lance Armstrong, regardless if he did or didn't use performance enhancers.... Look what he has overcome and accomplished.

    For me and where I am, which I know is a few years ahead of you, but I am thankful to be alive (which I know you are, no question about that), but I'll deal what the future brings me as it plays out.

    And again, like you agree, be aware, but also know that each of us are different you may not ever have some of the long term side effects that are possible.

    Anyways, my thoughts on it..

    JG 

     

    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"




  • ET@cowboy
    ET@cowboy Member Posts: 15
    fishmanpa said:

    Be aware

    Thats my point about this subject. The seriousness of the dental aspects of radiation therapy were not really addressed prior to my treatment other than I needed to take care of any "potential" issues prior. It wasn't until I read about HBO treatments, jaw replacements and such that the gravity of this potential side effect reared it's ugly head. It "seems" the vast majority of H&N survivors have some issue. It"appears that it's not a matter of "if" but "when" we'll encounter more complicated issues above and beyond a cavity or crown. 


    Obviously, one should not become consumed with this issue just like any other issue about our cancer. All we can do is the best we can do and take measures to make sure we do what is best for us both physically and mentally. The purpose of the thread is to gain some idea of a standard of care. If the fluoride rinse I'm currently using is not as effective as trays, I want to know that. If there's a toothpaste that is recommended above others, I want to know that. 


    "T"

     

     

    Teeth

    Good morning. When this whole thing started my wife's cousin (Dentist) who worked with head and neck folks at the VA in Dallas recommended the following Flouride trays using Topex Take home care gel 4%, NuetralMaxx 5000 plus turbo for once a day. Biotene gel at night. As in your case no one mentioned dental issues. Later when asked,  my RAD Onc mentioned the trays. The old standard was to remove the teeth. Now they try to save your teeth. Unv of Baylor medical in Dallas has a great dental program. I would think JH would as well.

    Eric

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    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"




    LOL...Unfortunately...

    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
    MarineE5 Member Posts: 1,030 Member
    Skiffin16 said:

    LOL...Unfortunately...

    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

     

    Good Words...

    John( Skiffin16) wrote....

     

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

    That is what I did and continue to do. I have a mental list of things that I need to do along with a list on paper. Each day is different, some days I feel like I need a nap shortly after waking up, other days, I feel pretty darn good and can get things done. I do pay for it the next day or two, but as John wrote, adjust each day to how you feel now. As mentioned, we find a "New Normal" and adapt.

    You will get back to the level you want to be at eventually, there is no set date in any of this.

    My Best to Everyone Here

     

     

     

  • CajunEagle
    CajunEagle Member Posts: 408
    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

    Yes indeed.........

     

    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

  • LCSister
    LCSister Member Posts: 13
    Feedback from Oral Surgeon

    All...

    Took my brother to the oral surgeon today to have his wosdom teeth evaluated pre-rad.  Thanks to all of you I was informed and felt more confident in encouraging my brother to have them removed.  Dentist thought they should come out, rad onc doc wishy-washy, the oral surgeon he had talked to said not necessary.  This women clearly felt it was indicated to pull them.  And did just that so not to delay his rad any longer then necessary.

    She spoke to me regarding post rad issues she sees.  She definately sees a fair share of issues.  Many times she says due to pts not being diligent and/or forgetting to do all the things to protect them during and after treatment.  She strongly advocates for flouride trays and rinses and frequent mouth care.  She really reinterated not to forget this after the treatments are over and the cancer is gone! 

    She did say that there are still cases of those who do everything they are supposed to and are faced with issues.  She said even needing/deciding for dentures is an issue post rad....the blood supply to the gums is not the same any longer. 

    Hope this helps...

     

  • Sheilarhc
    Sheilarhc Member Posts: 46
    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

    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.....