Ideas for column?
My thoughts were before diagnosis ( I was misdiagnosed for months), after diagnosis but pre treatment, treatment months and then post treatment.
Any ideas of thoughts from you out there? My main idea for doing this is to help others to listen to their bodies, reach out for help and know there are many who can help (of course this message board would be listed as I wish I had been on it during my treatment instead of just afterwards).
I look forward to your input.
Peace,
Nancy aka toughcookie
Comments
-
Nancy
Great idea telling people about CSN I wish I knew about it back in 2002 when I was first told I had cancer; as there are many things I would have done different. To me people just need to know where to get help and the best place is from others who have been there.
Wishing you the best
Hondo0 -
Your Article
NWASEN,
I am an eight year survivor of head/neck cancer. I was diagnosed at state four and the treatments were exceptionally difficult. I had eight weeks of cemo, eight weeks of radiation (last week double dosage) and surgery. Along with that I had a staph infection in my port that was almost the final straw.
Having said that, it is incredible the life I now live. There is nothing (except eating steak) that I cannot do today that I did before my cancer.
Something I discussed with a medical research writer before was: There are all types of testing for cancer and during cancer. Why is there not some DNA testing on cancer survivors to try and find out if there is something in there DNA that enable them to handle the treatments and be cured. There has to be a genetic reason for why some survive and others do not.
If I can be of any help to you on your article or research please let me know. There are way to many specific items that I went through to put into this email.
Good Luck.0 -
DNA TestingGary 1946 said:Your Article
NWASEN,
I am an eight year survivor of head/neck cancer. I was diagnosed at state four and the treatments were exceptionally difficult. I had eight weeks of cemo, eight weeks of radiation (last week double dosage) and surgery. Along with that I had a staph infection in my port that was almost the final straw.
Having said that, it is incredible the life I now live. There is nothing (except eating steak) that I cannot do today that I did before my cancer.
Something I discussed with a medical research writer before was: There are all types of testing for cancer and during cancer. Why is there not some DNA testing on cancer survivors to try and find out if there is something in there DNA that enable them to handle the treatments and be cured. There has to be a genetic reason for why some survive and others do not.
If I can be of any help to you on your article or research please let me know. There are way to many specific items that I went through to put into this email.
Good Luck.
Gary, what would be the point of the DNA testing... I'm sure that the MD's want to save everybody.. It would be bad mentally if you happened to fall into the category of not having the right DNA.
To me I believe that a positive attitude is huge during treatment. The power of the brain and the chemicals it produces during those times is little understood I believe.
Also faith and religion, power of support from faith, family and friends.
General health going in to treatment is also a biggie...
For myself, (as I was in perfect health other than havinf cancer, LOL), they preety much gave me the full gamet sixteen weeks of four different types of chemo, seven weeks of those were concurrent chemo and daily rads, amifostine each of those 35 days, injected into the stomach.
I was very lucky to comeout with clean scans and few residual side effects.
I just feel there is so much more that goes into cure and out come....
Now if they could figure out why some have the unfortunate fate of having the cancer or hpv turn into cancer and work on a better immunization, that would be awesome.
My tonsil cancer from HPV gave very little symptoms, but there were a few there in hindsight.
Just before diagnosis I had a little irritation in my throat, not bad, and didn't get worse..it just wouldn't go away.
But for a good six plus months before that, I'd occasionally get a puffed up throat in the mornings. Swollen on the inside making it hard to swallow. After a little coffee and time, it would go away. This happened once or so every few weeks.
Eventually I went to my GP whome apparently wasn't thinking anything cancer related as I didn't use tobacco or drink much, and he probably wasn't up on the high frquency of HPV we are seeing now in non-smokers.
He precribed antibiotics, mild at first, then Levaquin, neither touched it. After about two months of this I went to the ENT. In the mean time, I also had a lump pop up on the same side on my throat as the irritation. On my first visit he scoped my, sent me for a CT and told me on the first day he felt that I had SCC and more than likely it was HPV+.
He setme up for the tonsils to come out that next Monday (Friday was the exam day). That Monday he took the tonsils out, confirmed it was STGIII SCC, and a few weeks later, tissue biopsy came back as positive for HPV+.
Best,
John0 -
Screening is VitalSkiffin16 said:DNA Testing
Gary, what would be the point of the DNA testing... I'm sure that the MD's want to save everybody.. It would be bad mentally if you happened to fall into the category of not having the right DNA.
To me I believe that a positive attitude is huge during treatment. The power of the brain and the chemicals it produces during those times is little understood I believe.
Also faith and religion, power of support from faith, family and friends.
General health going in to treatment is also a biggie...
For myself, (as I was in perfect health other than havinf cancer, LOL), they preety much gave me the full gamet sixteen weeks of four different types of chemo, seven weeks of those were concurrent chemo and daily rads, amifostine each of those 35 days, injected into the stomach.
I was very lucky to comeout with clean scans and few residual side effects.
I just feel there is so much more that goes into cure and out come....
Now if they could figure out why some have the unfortunate fate of having the cancer or hpv turn into cancer and work on a better immunization, that would be awesome.
My tonsil cancer from HPV gave very little symptoms, but there were a few there in hindsight.
Just before diagnosis I had a little irritation in my throat, not bad, and didn't get worse..it just wouldn't go away.
But for a good six plus months before that, I'd occasionally get a puffed up throat in the mornings. Swollen on the inside making it hard to swallow. After a little coffee and time, it would go away. This happened once or so every few weeks.
Eventually I went to my GP whome apparently wasn't thinking anything cancer related as I didn't use tobacco or drink much, and he probably wasn't up on the high frquency of HPV we are seeing now in non-smokers.
He precribed antibiotics, mild at first, then Levaquin, neither touched it. After about two months of this I went to the ENT. In the mean time, I also had a lump pop up on the same side on my throat as the irritation. On my first visit he scoped my, sent me for a CT and told me on the first day he felt that I had SCC and more than likely it was HPV+.
He setme up for the tonsils to come out that next Monday (Friday was the exam day). That Monday he took the tonsils out, confirmed it was STGIII SCC, and a few weeks later, tissue biopsy came back as positive for HPV+.
Best,
John
As some of the recent news has reviewed;
1. A lot of H& N is HPV or EB virus related.
2. Many if not most of the population is HPV + (Not sure about EB)
3. Minimal symptoms until at later stages
4. And as WE all know, but others do not-For cancers, one of the most brutal re: rad damage,
wt loss, teeth etc, needs routine screening.
5. There will continue to be a strong increase in H& N cases in non smoking/drinking
population who are usually considered to be at low risk for this.There used to be a mind set that only those who smoked/drank were at high risk for H & N cancer. We need to change that to ALL Adults/Young Adults are at risk for H & N cancer.
There was some thread about education for oral hygienists. Will try to find that for you.0 -
One of the things I noticed
One of the things I noticed about a lot of articles that talk about HNC, especially around the time Michael Douglas was diagnosed, is that they do not express how difficult the treatment can be. I remember one doctor stating that ''his throat may be sore, and he may feel like he has the flu.''. I would not compare what I went through with the flu. Also people do not seem to understand how severe the side effects can be. I really got tired of hearing, "Well, so&so had radiation for ________(fill in the blank with everything other than HNC) and they could eat, and they were fine."
I would also like an article to stress the possible contributing factors, from HPV, EB, smoking, drinking.....
I would like to see a real article and story of an actual survivor, like you. I know it will be great. Hope you will post it so we will be able to read it!0 -
Ditto...sweetblood22 said:One of the things I noticed
One of the things I noticed about a lot of articles that talk about HNC, especially around the time Michael Douglas was diagnosed, is that they do not express how difficult the treatment can be. I remember one doctor stating that ''his throat may be sore, and he may feel like he has the flu.''. I would not compare what I went through with the flu. Also people do not seem to understand how severe the side effects can be. I really got tired of hearing, "Well, so&so had radiation for ________(fill in the blank with everything other than HNC) and they could eat, and they were fine."
I would also like an article to stress the possible contributing factors, from HPV, EB, smoking, drinking.....
I would like to see a real article and story of an actual survivor, like you. I know it will be great. Hope you will post it so we will be able to read it!
Good luck on your article and the approach from the survivors perspective...someone that has actually gone through it.
Best,
John0 -
A survivor's perspectiveSkiffin16 said:Ditto...
Good luck on your article and the approach from the survivors perspective...someone that has actually gone through it.
Best,
John
Thanks for all your perspective. I should know this week if I get the green light for this. I was spared for a reason.
I am not religious at all but I do believe in the power of love. I think I have found my niche if I can write this. Saving one person would make me feel great.
i just got back from the Survivor's Day celebration at the James in Columbus where they had lots of radiation masks that had been decorated. I noticed that we head and neck cancer people seem to be the most antimated and vocal too. Have any of you noticed that? I met some very cool survivors that had lots of info to share.
Cancer was no day at the beach but I have had alot of good come out of it as a result. I love reading the messages posted here and I think about my fellow survivors everyday.
Peace to you all
nancy aka toughcookie0 -
Spokespersonnwasen said:A survivor's perspective
Thanks for all your perspective. I should know this week if I get the green light for this. I was spared for a reason.
I am not religious at all but I do believe in the power of love. I think I have found my niche if I can write this. Saving one person would make me feel great.
i just got back from the Survivor's Day celebration at the James in Columbus where they had lots of radiation masks that had been decorated. I noticed that we head and neck cancer people seem to be the most antimated and vocal too. Have any of you noticed that? I met some very cool survivors that had lots of info to share.
Cancer was no day at the beach but I have had alot of good come out of it as a result. I love reading the messages posted here and I think about my fellow survivors everyday.
Peace to you all
nancy aka toughcookie
Nancy we will all be pulling for you and wish you the best with the inerview.
Hondo0 -
NancyHondo said:Spokesperson
Nancy we will all be pulling for you and wish you the best with the inerview.
Hondo
I agree with Sweets that the article should tell the population that the treatment is much more harsh than the cancer. We all felt good to great going into treatment and we all got our "arses" kicked by this and our lives have changed. Stressing the importance of having dentists really look in our mouths instead of just saying open up and giving a glance or two. Good luck with the article and let us know how we can read it and when....
all the best,
Steve0 -
Healthyhawk711 said:Nancy
I agree with Sweets that the article should tell the population that the treatment is much more harsh than the cancer. We all felt good to great going into treatment and we all got our "arses" kicked by this and our lives have changed. Stressing the importance of having dentists really look in our mouths instead of just saying open up and giving a glance or two. Good luck with the article and let us know how we can read it and when....
all the best,
Steve
LOL, yes, other than having cancer, I was in perfect health.
JG0
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