Squamous Cell Carcinoma With Primary in Tonsil

On Feb 13, 2012 6:00 PM eunicep wrote:

I have stage 2 Tonsil Cancer. I am 64 years old and a none smoker. My radiation treatments have not started as of yet. I have been doing alot of research. I have been told that if you gargle with Vingaer and Listerine (equal amounts) that will help clear up the soars.

I would think that would burn. I certainly wouldn't do that without asking your doctor. if you're taking treatments, nothing will celar them up but time. They will prescribe wahts caleld "magic mouthwash" which will relieve the pain.

David

First of all if you have not started radiation treatments do not let them use the standard radiation machine. You wan a high art imaging machine. I was treated with a Tomotherapy machine. I hac 35 treatments given during my lunch hour never took any pain meds or had any mouth sores. That was 7 years ago. I have my salave glands still and very little side affects. Please do not let them use the standard radiation machine. See my story at tomotherapy.com patient profiles Mark Montgomery

On Feb 13, 2012 6:00 PM eunicep wrote:

I have stage 2 Tonsil Cancer. I am 64 years old and a none smoker. My radiation treatments have not started as of yet. I have been doing alot of research. I have been told that if you gargle with Vingaer and Listerine (equal amounts) that will help clear up the soars.

Since you have not started radiation treatments yet, I would recommend you check our TOMO Therapy because is is the best for our type of cancer.  I was in a turmoil as to which radiation to go with until I called the head of Barnes Hospital in St. Louis and asked the head of radiology which one she would choose if she or a loved one had tonsil cancer (my research showed they had both IMRIT and TOMO).  She didn't hesitate before saying for tonsil cancer, she would choose TOMO.  The biggest benefit is it helps to retain more of your salivary glands.  You will still have side effects but salvaging a portion of your salivary glands will be huge.

Diana

On Feb 14, 2012 9:42 PM Dlynn1210 wrote:

On Feb 13, 2012 6:00 PM eunicep wrote:

I have stage 2 Tonsil Cancer. I am 64 years old and a none smoker. My radiation treatments have not started as of yet. I have been doing alot of research. I have been told that if you gargle with Vingaer and Listerine (equal amounts) that will help clear up the soars.

Since you have not started radiation treatments yet, I would recommend you check our TOMO Therapy because is is the best for our type of cancer.  I was in a turmoil as to which radiation to go with until I called the head of Barnes Hospital in St. Louis and asked the head of radiology which one she would choose if she or a loved one had tonsil cancer (my research showed they had both IMRIT and TOMO).  She didn't hesitate before saying for tonsil cancer, she would choose TOMO.  The biggest benefit is it helps to retain more of your salivary glands.  You will still have side effects but salvaging a portion of your salivary glands will be huge.

Diana

I wish I had known that. I had NOT Toma. My end result is i carry a bottle of water everywhere, have to eat meat medium rare and have less saliva.

live and learn

David

My husband had tonsil cancer.  His radiation oncologist, who is a family friend and a colleague of my husband's sister, considered both types of treatment and recommended IMRT over TOMO.  I can't say why exactly, knowing him we just trusted his judgement and didn't research further. He did say that they are not all that different but he believed IMRT to be a preferred choice for us.   I can tell you that my husband had 35 IMRT treatments on both left and right sides, and has only one remaining side effect 1 year later.  A little less saliva, that's it.  And he remains cancer-free. 

Just sharing our experience ~ everyone has to make the choice that feels right for their unique situation and needs.

Much love ~ GDW

According to the head of radiation at Barnes, her recommendation of TOMO over IMRT for tonsil cancer had to do with the involvement of moving organs versus non-moving organs.  She said TOMO was a little more precise when it involved a non-moving organ like the tonsil and tonsil area (unlike a lung where she would recommend IMRT).  The hospital I was diagnosed at only had the IMRT machine and of course, they felt it was just as good as TOMO.  The oncologist was wonderful and I was scheduled to begin treatment there only 10 miles from my home but I decided to go for a second opinion at the Cancer Treatment Center of America 90 miles from my home.  They recommended a similar treatment plan only with TOMO radiation.  They also used fragmented radiation - splitting up the radiation treatment into two sessions a day - to lessen the side effects.  Rarely does the same hospital have both types of machines so both my husband and I did extensive research.  There were two very reputable hospitals advising us to go with two types of radiation which is why I decided to call Barnes after learning they had both machines.   They had nothing to gain by giving me their honest opinion as they had both types and I was not going to be their patient no matter which type I chose.  I have been on this site since 2007 and believe I chose the best type of radiation for tonsil cancer.  Both types of radiation - TOMO and IMRT - have equal results in fighting cancer and I am still cancer free after four years - but patients using TOMO therapy stand a better chance of retaining more of their saliva gland. 

When we chose to go to CTCA - 90 miles from my home - that meant an additional expense because we had to get a hotel room Mon through Thur nights - and later in treatment, we had to stay seven nights a week in a hotel because I wasn't up to traveling.  We were 100% convinced that it was far better to drive 90 miles and spend all week in a hotel just to be able to have TOMO radiation.  As I sit here pooling saliva in my mouth as I type this, I am elated that my husband and I made the choice we did.  I do have other side effects from the chemo - hearing loss, memory loss, and I can no longer tolerate a lot of foods (like anything spicy), but at least I have most of my saliva gland activity which is huge.                 

Diana   

On Jul 10, 2005 12:00 AM Steffani wrote:

My friend was just diagnosed with stage 3 of cancer of the tonsil...he’s getting ready for radiation and chemo treatments. What can we expect from all of this? What is the survival rate? I keep reading different things. I’m so scared. This is my best friend...he just had his MRI but we haven’t gotten the results back yet. Hopefully maybe you can fill me in on what to expect...thank you so much

I have Stage two Cancer of the Tonsil also. I recommend that you do alot of research. I am now searching the different types of radiation. The best so far has been what they call TomaTherapy and or TomaDirect, Targets the Cancer, doesn't kill to many good cells. I am also looking at Cyberknife Radiation, trying to research it. The Toma has been around over 6 to 7 Years,They say it does not kill the Slavia glands I am a non-smoker. The Doctors tell me most smokers will get Lung Cancer. I was diagnosed over 5 months ago. Went under the knife to remove the Right Tonsil, Upon waking up I still had my Tonsil, The reason they said was they could not get it all so they would not remove. Have your bad teeth removed and also keep your teeth clean, they do not like to do radiation without this being done. Get the PET Scan it is the Test they use for Cancer treatment. Keep his weigh on Doctor tells me to eat everything I can. They like you to gain 35 lbs to 50 lbs for treatment. Weigh loss alwayshappens when doing Radiation, I have been eating and still have lost 10 Lbs. High potein drinks are great. Get them from a Health Food Store. I just started a Whey Protein isolate lots of vitamis. I drank my first drink today in a Peanut Butter Milk Shake recipe, which is made with Ice Cream. Very high in Calories.

PS Stay upbeat around your friend, he needs support. He will not get much sleep.

 Good Luck and God Bless You,your friend and His Family.

Sincerely, Eunice

On Feb 26, 2012 1:27 PM eunicep wrote:

On Jul 10, 2005 12:00 AM Steffani wrote:

My friend was just diagnosed with stage 3 of cancer of the tonsil...he’s getting ready for radiation and chemo treatments. What can we expect from all of this? What is the survival rate? I keep reading different things. I’m so scared. This is my best friend...he just had his MRI but we haven’t gotten the results back yet. Hopefully maybe you can fill me in on what to expect...thank you so much

I have Stage two Cancer of the Tonsil also. I recommend that you do alot of research. I am now searching the different types of radiation. The best so far has been what they call TomaTherapy and or TomaDirect, Targets the Cancer, doesn't kill to many good cells. I am also looking at Cyberknife Radiation, trying to research it. The Toma has been around over 6 to 7 Years,They say it does not kill the Slavia glands I am a non-smoker. The Doctors tell me most smokers will get Lung Cancer. I was diagnosed over 5 months ago. Went under the knife to remove the Right Tonsil, Upon waking up I still had my Tonsil, The reason they said was they could not get it all so they would not remove. Have your bad teeth removed and also keep your teeth clean, they do not like to do radiation without this being done. Get the PET Scan it is the Test they use for Cancer treatment. Keep his weigh on Doctor tells me to eat everything I can. They like you to gain 35 lbs to 50 lbs for treatment. Weigh loss alwayshappens when doing Radiation, I have been eating and still have lost 10 Lbs. High potein drinks are great. Get them from a Health Food Store. I just started a Whey Protein isolate lots of vitamis. I drank my first drink today in a Peanut Butter Milk Shake recipe, which is made with Ice Cream. Very high in Calories.

PS Stay upbeat around your friend, he needs support. He will not get much sleep.

 Good Luck and God Bless You,your friend and His Family.

Sincerely, Eunice

Question, Anyone know or have had any experience with Cyberknife Radiation?

Thanks Eunice

On Feb 13, 2012 6:08 PM eunicep wrote:

Hi David:

I have stage 2 Tonsil Cancer on the right also. I went in for a scheduled Surgery, after waking up still had the bad Tonsil. They did a Biospy (has to be done in a germ free enviroment) they do a scoop down into the throat looking for other signs of Cancer this is routine. I went to Cleveland Clinic Weston and also MD Anderson Cancer Center in Orlando. They schuled me for Surgery there also at last minute they cancelled it.   ???? Best of Luck to you on your Surgery. What is your Stage of Cancer????

Eunice -

I'm not sure who you were responding to here but if it was Diamond David, when you check his post you will see it was written in 2008 so most likely he is years past treatment.  It doesn't happen often that a blog gets resurrected so many years later but this particular blog started in 2005.  As survivors we often come back to support those who are now where we once were. 

I wish you the best in the days ahead - treatment is brutal but in the words of one of my radiation oncology nurses "Now you know why we kicked your butt all those months".  This was her response when I gave her the results of my first PET scan after treatment ended. 

Diana 

On Feb 26, 2012 1:34 PM eunicep wrote:

On Feb 26, 2012 1:27 PM eunicep wrote:

On Jul 10, 2005 12:00 AM Steffani wrote:

My friend was just diagnosed with stage 3 of cancer of the tonsil...he’s getting ready for radiation and chemo treatments. What can we expect from all of this? What is the survival rate? I keep reading different things. I’m so scared. This is my best friend...he just had his MRI but we haven’t gotten the results back yet. Hopefully maybe you can fill me in on what to expect...thank you so much

I have Stage two Cancer of the Tonsil also. I recommend that you do alot of research. I am now searching the different types of radiation. The best so far has been what they call TomaTherapy and or TomaDirect, Targets the Cancer, doesn't kill to many good cells. I am also looking at Cyberknife Radiation, trying to research it. The Toma has been around over 6 to 7 Years,They say it does not kill the Slavia glands I am a non-smoker. The Doctors tell me most smokers will get Lung Cancer. I was diagnosed over 5 months ago. Went under the knife to remove the Right Tonsil, Upon waking up I still had my Tonsil, The reason they said was they could not get it all so they would not remove. Have your bad teeth removed and also keep your teeth clean, they do not like to do radiation without this being done. Get the PET Scan it is the Test they use for Cancer treatment. Keep his weigh on Doctor tells me to eat everything I can. They like you to gain 35 lbs to 50 lbs for treatment. Weigh loss alwayshappens when doing Radiation, I have been eating and still have lost 10 Lbs. High potein drinks are great. Get them from a Health Food Store. I just started a Whey Protein isolate lots of vitamis. I drank my first drink today in a Peanut Butter Milk Shake recipe, which is made with Ice Cream. Very high in Calories.

PS Stay upbeat around your friend, he needs support. He will not get much sleep.

 Good Luck and God Bless You,your friend and His Family.

Sincerely, Eunice

Question, Anyone know or have had any experience with Cyberknife Radiation?

Thanks Eunice

I've never heard or read about cyberknife radiation being used with tonsil cancer but have read on CC where it has been used successfully with other types. 

Diana