Tonsil Cancer - Squamous Cell

On Mar 06, 2012 2:09 AM pineconepeg wrote:

My husband was diagnosed today.  Thank you so much for your informative post. 

Hi Peg -

I am a survivor of squamous cell cancer of the left tonsil.  You will find many on Cancer Compass with similar stories.  First, the good news - your husband has been diagnosed with a type of cancer that is not only treatable but cureable.  The usual treatment for "tonsil" cancer is surgical removal of the tonsils followed by chemo and radiation.  While treatment is brutal, it has excellent results.  The first thing I will advise you on is the type of radiation.  This is very important - not for a cure but for a better quality of life.  TOMO radiation is the best choice for our type of cancer.  You will find facilities that have IMRT radiation machines who will tell you that their machine works as well - and while it does, it is not able to preserve our salivary glands like TOMO.  This was the first major decision I had to make - and at a time that I knew little about cancer treatment.  I had two cancer treatment centers telling me their machines were the best or equal.  I finally thought to call Barnes Hosp in St. Louis and asked the head of radiology her opinion.  They had both types and knew I wasn't coming there for treatment so held no vested interest in steering me the wrong direction.  She told me for nonmoving organs such as tonsil, if it were her or a loved one, she would go with TOMO.  If it was a moving organ, she would go with IMRT. 

I won't throw a ton of information at you now since I am sure you are just trying to adjust to the diagnosis - at least, that is where I was at the first couple of weeks.  It was my husband who researched, researched, researched.  Just know that you have a terrific group of tonsil cancer survivors on Cancer Compass that will be here every step of the way.  We have been down the road you are now traveling and can be a source of information, comfort, and at times, just there to lend an ear.  I am the first tonsil cancer survivor to post but there will many after me.  As I said, treatment is brutal but definitely worth it for the end results. 

Diana       

On Mar 06, 2012 2:53 AM catchtoit wrote:

On Mar 06, 2012 2:09 AM pineconepeg wrote:

My husband was diagnosed today.  Thank you so much for your informative post. 

Im so sorry peg.  I have good news by way of a clinical trial that attempts to shrink the tumors before you take any chemo, radiation and most importantly before surgery.

That means that more tissue can be preserved.  The drug is called Multikine and is in a phase 3 trial.  They recieved orphan drug status from the FDA.

The drug has no serious side effects.  It works to prime your immune system to fight the tumor.  Many many people have seen the tumors either stay the same, shrink, or disappear altogether.

One of the criteria for the trial is that you are newly diagnosed late stage, never recieved chemo or radiation.  This is so that your immune system is in tact and able to work with Multikine. 

I am going to give you a link to the clinical trial website and the company page.  There are two locations in the US.  Mississippi and the VA hospital in NJ. (I'm a veteran)

Please take a look.  Perhaps you and someone you know can benefit from this.

Respectfully,

Larry

http://www.clinicaltrials.gov/ct2/show/NCT01265849?term=mult ikine&rank=1"" target="_blank" rel="nofollow">http://www.clinicaltrials.gov/ct2/show/NCT01265849?term=mult target="_blank" rel="nofollow">http://www.clinicaltrials.gov/ct2/show/NCT01265849?term=mult

http://cel-sci.com/    "" target="_blank" rel="nofollow">http://cel-sci.com/    " target="_blank" rel="nofollow">http://cel-sci.com/    lots of information here on Multikine.

Larry -

You have been posting this same reply at least since July 2011.  You do not give any information about yourself - whether you are a cancer surivovr.  With "tonsil" cancer, there are no clinical trials to shrink tumors, the tumor is encased in the tonsil - and the tonsils are removed.  Chemo and radiation follow with excellent results!  

Diana 

On Mar 06, 2012 2:58 AM catchtoit wrote:

http://cel-sci.com/ "" target="_blank" rel="nofollow">http://cel-sci.com/ " target="_blank" rel="nofollow">http://cel-sci.com/

 

first one didnt work.

 

Regards,

I followed the link and this clinical trial is directed at advanced stage head and neck cancers - NOT specifically tonsil cancer.  I personally would never go with a clinical trial (which means it is new and unproven) when there is a tried and true treatment for tonsil cancer that has gotten excellent results for years.

Diana 

Diana

You are right. There are many test and new treatments but the tried and true (gold standard) have in this case wonderous results. That is why I specified exactly what chemo I received for others to discuss with their doctors as you can see there are a few different types.

Mu sister (mother of four) died of breast cancer five years after receiving the wrong chemo. When she was seriously ill for the second time UC Irvine stated the chemo she received from another hospital in south Orange County gave her the wrong chemo for her specific type of cancer.Please learn from this situation and get a second opinion also on the type of chemo they will be using. The second opinion should be through out the entire treatment. I did not go thru the treatments at the first pathetic hospital that caused me many medical problems from the start.  I got a second opinion on ever step of the treatment from UT South Western in Dallas and that is where I received my treatment with unmatched professionalism.

 Please all beware of who post and verify like Diane ask are they a survivor or just posting to get people for their studies. I am a survivor just turned 56 when diagnosed now I am 58 with the last two CT scans clear.

Lardog

On Mar 08, 2012 2:44 AM lardog04 wrote:

Diana

You are right. There are many test and new treatments but the tried and true (gold standard) have in this case wonderous results. That is why I specified exactly what chemo I received for others to discuss with their doctors as you can see there are a few different types.

Mu sister (mother of four) died of breast cancer five years after receiving the wrong chemo. When she was seriously ill for the second time UC Irvine stated the chemo she received from another hospital in south Orange County gave her the wrong chemo for her specific type of cancer.Please "" target="_blank" rel="nofollow">http://cancer.Please " target="_blank" rel="nofollow">cancer.Please learn from this situation and get a second opinion also on the type of chemo they will be using. The second opinion should be through out the entire treatment. I did not go thru the treatments at the first pathetic hospital that caused me many medical problems from the start.  I got a second opinion on ever step of the treatment from UT South Western in Dallas and that is where I received my treatment with unmatched professionalism.

 Please all beware of who post and verify like Diane ask are they a survivor or just posting to get people for their studies. I am a survivor just turned 56 when diagnosed now I am 58 with the last two CT scans clear.

Lardog

I was akways under the impression that chemo was chemo - it wasn't until my treatment plan was laid out by the Cancer Treatment Center of America (CTCA) that I learned that there are "different" chemo drugs.  For tonsil cancer, cisplatin is the drug of choice.  CTCA was where I went for a second opinion - and I chose to be treated there.  It meant driving 90 miles one way and staying in a hotel through the week wherein the hospital were I was diagnosed was only 10 miles from our home.  TOMO was the deciding factor, in addition to fragmented radiation treatments (half the amount twice a day to reduce the side effects) instead of a full dose once daily.

One of the first things you learn on CC is to take charge of your own health/treatments.   

Diana       

Diana,

You're right, my husband and I are kind of in shock.  My husband, Mark, had a mild heart attack a month ago and subsiquently had a cardiac cath and a stent put in.  As a sesult of that they should not do surgery for at least a year, partly because of the risk of another heart attack, and partly because he has to be on Plavix now, which majorly increases bleeding.  Because of this they plan to do chemo and radiation with the tonsil and the neck tumor in place. 

"Larry" said this type of cancer is inside the tonsil.  That is not true in my husbands case.  His tonsil is definately full of cancer, but he also has 3 cancerous lesions on the outside of the tonsil, plus the tumor on the left side of his neck. 

I suppose eveyone runs into complications.  We are scared to death.  This forum is very comforting and informative.

Dont be silly.

Read the trial in it's entirety.  I know why you are skeptical and defensive, but the choice is always yours. 

Read the trial.  Understand it. 

Tonsil cancer is a type of head and neck cancer.  Most tonsil cancers are squamous cell carcinomas but some can be lymphomas. 

If you know you have scc this trial pertains to you.

Read it.  It could save someone's life. 

It would be foolish not to read it.

read the trial.  It can reduce the tumor without toxic effects therefore making surgury less evasive.  Then you get the gold standard which btw hasnt changed in 50 years. 

It boosts the immune system to treat the tumor as it would the flu.  It not only makes the surgury easier for the doctor, but it breaks the tumor down so that chemo and radiation are more effective with less doses.

Read the trial.  Please dont discount it because someone here said something smart without reading it.  She might not know what she's talking about.  I do.

read the trial dianna.  Please.

head and neck cancer is a category.  Tonsi cancer falls under head and neck cancer.

The gold standard, unfortunatly, destroys the immune system.

Squamous cell carcinoma is what the trial is target for.

I urge you to study the science involved.  Interleukin 2 has been studied, with regards to tumors for many years by many countries.

How do you think cisplatin became FDA approved?  Clinical trials.  Cisplatin is one of the most damaging drugs out there...why would you not be open to reading about something that is non-toxic and hasnt caused any serious side effects from anyone who has taken it in a clinical trial thus far?

I urge you to listen to the poster that says you have to take your medical care into your own hands. 

What that means to me is that you have to do the research and learn everything there is to know about cancer and possible treatments.

Please dont discount something that you dont understand.

Read the trial.

On Mar 08, 2012 3:49 AM pineconepeg wrote:

Diana,

You're right, my husband and I are kind of in shock.  My husband, Mark, had a mild heart attack a month ago and subsiquently had a cardiac cath and a stent put in.  As a sesult of that they should not do surgery for at least a year, partly because of the risk of another heart attack, and partly because he has to be on Plavix now, which majorly increases bleeding.  Because of this they plan to do chemo and radiation with the tonsil and the neck tumor in place. 

"Larry" said this type of cancer is inside the tonsil.  That is not true in my husbands case.  His tonsil is definately full of cancer, but he also has 3 cancerous lesions on the outside of the tonsil, plus the tumor on the left side of his neck. 

I suppose eveyone runs into complications.  We are scared to death.  This forum is very comforting and informative.

Hi Peg

Shock is very normal in the beginning.  It took me a couple of weeks just to adjust to the knowledge that I had cancer.  What type of radiation are they talking about?  As I said, TOMO radiation enables us to retain much of our salivary gland function.  It radiates slice by slice as it moves over the affected area where IMRT encompasses the tumor in its entirety and radiates the salivary gland.  I know it doesn't sound like a big deal but a dry mouth does have a negative impact on our health. 

Just remember, there are many of us on CC who are tonsil cancer survivors and we are here to answer any questions, offer support when needed, or just listen when someone needs to vent.  We have been where you are now heading - and we care about each other.

Diana