So many new names...

Barbaraek

I was off the board for a bit while we were out of town and I just can't believe how many new names are on the board. Loveandbelieve, SQLNOLE, Aking, and Jim Willis - welcome to the CSN H&N family. While it makes me sad to see our rolls ever expanding, I'm glad you found our group. I wonder if head and neck  cancer is becoming more prevalent...especially with the HPV virus? Hopefully it will all translate into research funding and some treatment breakthroughs.

Barbara

wmc

Barbara that is so true, it is getting less common everyday.

It is a double edged sword in a way. It is good that they found this site and group, as it is the best one I had found. This has more knowledge and advice with someone is going through. Covers all family, caregivers, and those who survived and fighting as well.  The expression, you don't know someone until you walked in their shoes, is so true. Then you add all the different kinds, or locations H&N cover, is why they say it is the second worse treatment one can go through.  I guess what gets me the most is when it comes back and goes to the lungs, but you can't be treated or get into the trials for lung cancer. Both are still SCC, but you can't get in. I can see how it can change the dynamics of a trial, but the FDA approver two new ones, but it is only for the lung only, and someone who that is there last hope, but can't have it is just so sad.

Maybe this turned into a "venting" sesion for me, but if so then I needed to. I stay on here because I have been able to help someone get through this, maybe just a little easier. There times I just don't want to respond, and I know how scarred they are, but I have to give true facts and incourgement so they can fight with everthing they have, yet you know the outcome.  Having HPV+ responds better to treatment, but seems to be recurring so much lately.

All I can do is try to give sound advice when asked, and give the support and just be there to listen when they need. Then get myself back to where I need to be as well. I do spend much of my time with the other group for Laryngectomees as we get new members all the time there as well. Wow you talk about being scared. The fight cost them there voice and smell, then what ever the radiation damage they have. I have received messages that I have helpped them do things they are told they can't do. Many have been able to have a pulmonary function test that they were told can not be done on a neck breather, but it can, so I made a video at the request of my doctors at Stanford to show just how to do it.  It is just some days I just need to walk away some so my shoulders can mend some. We have lost too many. It didn't help that ACS lowered my servivor numbers by 10%, now it is 53% for my stage three, makes me think more.

Thanks for the ear...........

Bill

SQLNOLE

wmc said:

Barbara that is so true, it is getting less common everyday.

It is a double edged sword in a way. It is good that they found this site and group, as it is the best one I had found. This has more knowledge and advice with someone is going through. Covers all family, caregivers, and those who survived and fighting as well.  The expression, you don't know someone until you walked in their shoes, is so true. Then you add all the different kinds, or locations H&N cover, is why they say it is the second worse treatment one can go through.  I guess what gets me the most is when it comes back and goes to the lungs, but you can't be treated or get into the trials for lung cancer. Both are still SCC, but you can't get in. I can see how it can change the dynamics of a trial, but the FDA approver two new ones, but it is only for the lung only, and someone who that is there last hope, but can't have it is just so sad.

Maybe this turned into a "venting" sesion for me, but if so then I needed to. I stay on here because I have been able to help someone get through this, maybe just a little easier. There times I just don't want to respond, and I know how scarred they are, but I have to give true facts and incourgement so they can fight with everthing they have, yet you know the outcome.  Having HPV+ responds better to treatment, but seems to be recurring so much lately.

All I can do is try to give sound advice when asked, and give the support and just be there to listen when they need. Then get myself back to where I need to be as well. I do spend much of my time with the other group for Laryngectomees as we get new members all the time there as well. Wow you talk about being scared. The fight cost them there voice and smell, then what ever the radiation damage they have. I have received messages that I have helpped them do things they are told they can't do. Many have been able to have a pulmonary function test that they were told can not be done on a neck breather, but it can, so I made a video at the request of my doctors at Stanford to show just how to do it.  It is just some days I just need to walk away some so my shoulders can mend some. We have lost too many. It didn't help that ACS lowered my servivor numbers by 10%, now it is 53% for my stage three, makes me think more.

Thanks for the ear...........

Bill

truly appreciate
Barbara and Bill, I truly appreciate the knowledge and experience that you gals and guys have to share with us newbies!

There is so much stuff thrown at us noobs, which 6 weeks ago, I had neither heard of nor contemplated. Your wisdom is so incredibly inestimable!

Richard

MrsBD

New Names

You are so right, Barbara. Any time I see a new name it saddens me to know what that person will have to suffer. My oncologist said in addition to the HPV caused cancers, they are also seeing an upswing in non-smoker, non-drinker, non-HPV women like me. It's very frustrating not to know a cause and whether my children need to be concerned about their own risks. On a brighter note, every day it seems there is another discovery and reason to hope for a way to prevent or cure cancers. We'll keep praying! 

wmc

MrsBD said:

New Names

You are so right, Barbara. Any time I see a new name it saddens me to know what that person will have to suffer. My oncologist said in addition to the HPV caused cancers, they are also seeing an upswing in non-smoker, non-drinker, non-HPV women like me. It's very frustrating not to know a cause and whether my children need to be concerned about their own risks. On a brighter note, every day it seems there is another discovery and reason to hope for a way to prevent or cure cancers. We'll keep praying! 

There is two others that cause Throat cancer....

One that so many don't concider is acid reflux. It ranks about #3 or tied with HPV+. The acid reflux advanced mine by a lot. Now mine is from smoking, but the acid burned my throat and then the tobacco did the rest. I never knew I had acid reflux as I almost never had heartburn. The acid in the stomach when you have a flair up is stronger than battery acid. It will burn a hole in your esophagus or throat and should be taken very serious.

The last #5 is: They just don't know why, you just did for no known reason. This is the hardest to deal with because there is no reason or anything you did or could have done different. That really bothers people the most. The Why....

Bill

 

 

donfoo

wmc said:

There is two others that cause Throat cancer....

One that so many don't concider is acid reflux. It ranks about #3 or tied with HPV+. The acid reflux advanced mine by a lot. Now mine is from smoking, but the acid burned my throat and then the tobacco did the rest. I never knew I had acid reflux as I almost never had heartburn. The acid in the stomach when you have a flair up is stronger than battery acid. It will burn a hole in your esophagus or throat and should be taken very serious.

The last #5 is: They just don't know why, you just did for no known reason. This is the hardest to deal with because there is no reason or anything you did or could have done different. That really bothers people the most. The Why....

Bill

 

 

what?

Hey Bill,

How you doing? When you swing by the south bay again, coffee on me!

I think I'm not reading this correctly. Are you saying that acid reflux is in some way complicit with the development of  oropharyngeal cancers? I've hear of the aggravation caused by acid reflux but never any medical connection to the cancer itself.

Take care,

don

 

wmc

donfoo said:

what?

Hey Bill,

How you doing? When you swing by the south bay again, coffee on me!

I think I'm not reading this correctly. Are you saying that acid reflux is in some way complicit with the development of  oropharyngeal cancers? I've hear of the aggravation caused by acid reflux but never any medical connection to the cancer itself.

Take care,

don

 

Yes I am.. Acid reflux has recently been.....

Yes they have reported that acid reflux can be the cause of throat and esophagus. Hera is a quote..Yep, you read that right: acid reflux, of which heartburn is a symptom, can actually cause cancer;  Frequent Heartburn Increases Risk Of Throat Cancer By 78%

I read about this when I got mine about 2.5 years ago. GURD is very serious and if it goes up higher in the throat to the larynx it is called, LPR. You just dont hear about LPR unless you have it or know someone, I know I never knew about it, and I have it.  Now I know mine was from smoking, but the acid burning my throat is what helped with me coughing blood as the tumor was blasted with acid.  

They [doctors] say #1 is smoking or tobacco, #2 Heavy drinking,  #3 HPV+, #4 Acid reflux, and last is they just don't know why.

Acid reflux hits the esophagus the most, and esophagus cancer is also much worse and lower survivor rates.

Thanks as I am doing really good, and hope you are as well.

Bill

swopoe

There are a lot of new names,

There are a lot of new names, and it makes me so sad. That said, I am so very glad they have all found this place.

my husband is in the percentage of unexplained H&N cancers. Age 40 at diagnosis, non smoker, non drinker, no acid reflux, not HPV, nothing. Otherwise perfectly healthy. It is terribly frustrating to think of why this happened in the first place.

CivilMatt

swopoe said:

There are a lot of new names,

There are a lot of new names, and it makes me so sad. That said, I am so very glad they have all found this place.

my husband is in the percentage of unexplained H&N cancers. Age 40 at diagnosis, non smoker, non drinker, no acid reflux, not HPV, nothing. Otherwise perfectly healthy. It is terribly frustrating to think of why this happened in the first place.

??????????????????????????????

Nadine,

Why?  Good question, who knows, care to guess?

Somewhere in your husbands history a cancer cell(s) took hold.

Be it hereditary, environmental, compromised immune system, wrong place wrong time or just bad luck?

Questions abound, answers are a plenty, acceptance is just that and that is cancer.

Best always,

Matt

Kent Cass

CivilMatt said:

??????????????????????????????

Nadine,

Why?  Good question, who knows, care to guess?

Somewhere in your husbands history a cancer cell(s) took hold.

Be it hereditary, environmental, compromised immune system, wrong place wrong time or just bad luck?

Questions abound, answers are a plenty, acceptance is just that and that is cancer.

Best always,

Matt

Of note to Bill and others

Yes, Bill is correct about the acid reflux, which may have been the main cause for my Cousin's Esophageal C, and death. Thing is: ESOPHAGEAL C HAS IT'S OWN PAGES with threads, just like we do with Head and Neck. Just check-out the     "Discussion Board" list of the different Cs. The acid reflux comes up from the stomach into the esophagus, not the windpipe; though, in extreme cases when found late, or not found and treated correctly, it is possible it could breach into the windpipe if it is on the windpipe side of the esophagus. Whole different C beast, and deals with the digestive tract, rather than the air passage tract we typically are discussing. Just to clarify, as acid reflux is not a common cause for the Cs we with H&N typically have; but, rather, is typical for Esophageal, which is a separate C than we deal with on our pages of the ACI forum.

Bill is also right about the poor survival rate for Esophageal, as compared to H&N. Structure of the esophagus is not only very different from that of the windpipe, but it's structure makes it so that it can be difficult to find. One of the better known cures for it, an Aunt of mine had done years ago: cancerous section was cut out of her, then the two ends re-stitched together, and she's in her Eighties, now.

FYI

kcass

 

swopoe

CivilMatt said:

??????????????????????????????

Nadine,

Why?  Good question, who knows, care to guess?

Somewhere in your husbands history a cancer cell(s) took hold.

Be it hereditary, environmental, compromised immune system, wrong place wrong time or just bad luck?

Questions abound, answers are a plenty, acceptance is just that and that is cancer.

Best always,

Matt

Wells said, Matt. Well said.

Wells said, Matt. Well said.

Hondo

Always room for one more

While I don’t like to see more people with this stuff, I know it is a part of life. I am old and used up and did my time but when it is someone young just starting off in life and they have to deal with this, it just doesn’t seem fare. I guess that is one of the many reason some of us stay here on CSN, it is to help others get through this part of life.

 

Tim

donfoo

Kent Cass said:

Of note to Bill and others

Yes, Bill is correct about the acid reflux, which may have been the main cause for my Cousin's Esophageal C, and death. Thing is: ESOPHAGEAL C HAS IT'S OWN PAGES with threads, just like we do with Head and Neck. Just check-out the     "Discussion Board" list of the different Cs. The acid reflux comes up from the stomach into the esophagus, not the windpipe; though, in extreme cases when found late, or not found and treated correctly, it is possible it could breach into the windpipe if it is on the windpipe side of the esophagus. Whole different C beast, and deals with the digestive tract, rather than the air passage tract we typically are discussing. Just to clarify, as acid reflux is not a common cause for the Cs we with H&N typically have; but, rather, is typical for Esophageal, which is a separate C than we deal with on our pages of the ACI forum.

Bill is also right about the poor survival rate for Esophageal, as compared to H&N. Structure of the esophagus is not only very different from that of the windpipe, but it's structure makes it so that it can be difficult to find. One of the better known cures for it, an Aunt of mine had done years ago: cancerous section was cut out of her, then the two ends re-stitched together, and she's in her Eighties, now.

FYI

kcass

 

Missed "esophageal"

Since most here are HNC I was associating the acid reflux with that rather than cancer further down in the throat. Still interesting what it is about the acid reflux that is linked to cancer. thanks guys

wmc

donfoo said:

Missed "esophageal"

Since most here are HNC I was associating the acid reflux with that rather than cancer further down in the throat. Still interesting what it is about the acid reflux that is linked to cancer. thanks guys

GURD & LPR

LPR is a condition that occurs in a person who has gastroesophageal reflux disease (GERD). Acid made in the stomach travels up the esophagus (swallowing tube). When that stomach acid gets to the throat, it is called laryngopharyngeal reflux (LPR). 

Many have never heard of LPR and I hadn't untill I had it. It goes much higer up into the throat.  It is comon in those who had a laryngectomy as when they seperate the throat, they have to cut the upper sphincter muscle, which is what keeps food and acid down.  It is not very comin in H&N but more have it that we think. You get to where you tast the acid.. You don't really get heartburn, but if you burp, you can and will often tast acid.

Bill

wmc

Hondo said:

Always room for one more

While I don’t like to see more people with this stuff, I know it is a part of life. I am old and used up and did my time but when it is someone young just starting off in life and they have to deal with this, it just doesn’t seem fare. I guess that is one of the many reason some of us stay here on CSN, it is to help others get through this part of life.

 

Tim

Pay it forward, or just pay it back.

Well said Tim. For me I was given a second chance, and many here helped when I was starting out. If what I had and what I have learned from all that made it, could make it easier on someone then that is what I need to do. Sometimes I may have to be a little blunt, and I don't really like to, but I need to tell the truth. They want to know what to expect, and how to deal with it. I know I wanted and needed to know the truth. What was I going to go through to beat this. Only then can I get prepaired. It is very hard to talk to someone who has not lived it. They try, and try to help and understand what you go through. They just have know idea what we have been through, or go through everyday. I never had radiation, or chemo, so I could only learn from those who did. 

I did have my voice removed and I'm ok with it, but that is an everyday, and every minute of the day it will affect your life. I even think about every time I swallow anything, but liquid more. Am I going to asperate and cough, or is it going to just hang up in the throat. The cold is the worst as cold air can hurt to breath. Also when you exhale and you can see the persons breath, and it is coming out the neck takes some getting used to.

It is nice just to know you made a difference in someone's life, and made it a little easier for them. When my time comes I will know I made a difference................. I could not ask for anything more than I mattered.

Bill