Squamous Cell Carcinoma With Primary in Tonsil

On Feb 29, 2012 8:42 PM Live40mr wrote:

I had 35 treatments from the Tomo machine from my ear lobes to the center of my chest. I took my treatments during my lunch hour, never missed a treatment, never missed work, lost my hair at radiation point, everything tasted bad, never had any pain medicine, dry mouth around week 4, never burned or blistered, no feeding tubes, did loose 25 lbs but needed to lol.

After treatment ceased hair gew back, taste came back 85-90 percent of salava came back, cancer did not come back :^), I am a true believer that Tomo saved my quality of life. All this was in 2005.

Mark - correct me if I am wrong on anytihng.

Eunice -

While I also believe that radiation with a TOMO machine gave me back a "quality" of life that IMRT would not have, I don't want to downplay the side effects.  Mark did not have chemo and made it through treatment without a feeding tube if I remember correctly (this is VERY rare).  I had basically 70 treatments from the TOMO machine also directed from my ear lobes to upper chest area  (what they call fragmented half doses twice dailiy to reduce side effects).  I lost my hair from my ears down but it grew back - just not as thick as it once was.  Two weeks into treatment I was notified that they could not hold my job for me - but I honestly was in no condition to work anyway at that point.  The chemo drug I endured was cisplatin and it is supposedly the worst for producing nausea.  I lost 26 pounds in the first two weeks and realized the doctors were right - I should have gotten a feeding tube before treatment started.  I asked them for one after they had to meet me at the door of the hospital with a wheel chair because I was too weak to walk any farther. 

The same as Mark, 85-90% of my saliva came back (which as I've said is HUGE).  I have gained back my weight back but have to work on retaining it (upside - no more diets needed).  Are there lasting side effects - yes, but nothing major.  I have a new normal when it comes to eating - I can't tolerate real spicy foods that I used to love, I now prefer dark meat of chicken rather than white, steak is difficult to swallow, and I eat a whole lot of gravy now (radiation can play havoc with the muscles of the esophagus).  But in the words of one of my oncology nurses after I shared the results of my first scan (clean) three months post treatment - "Now you know why we kicked your butt all those months".  Was it worth it, most definitely because I am cancer free.  The treatment is brutal but at least we have a cancer that is cureable - not just treatable as many on CC.  There are many on here that have been where you are and we made it - so can you.  My treatment was in 2007 and the bad times are a distant memory that I only think about when sharing with someone who wants to know what is down the road.  Eunice - you will do great!  AND when you get your first clean scan, the bad days will be a distant memory for you as well. 

Diana              

Yes I was very fortunate not to have had to endure the wrath of chemo. I to sported a fancy bowl cut( i think thats what thay called it ). My doctor stated that if my hair had not fallen out he would have questioned my treatment. I was fortunate my body reacted extremly well against the radiation. I call treatments our tour of duty, meaning that once you are done and get those clean scans boy was it worth it.

   I never want to paint a false picture that this will be easy especialy if you have rounds of chemo. My biggest point that i preach about is that once my treatments ended my life was returned to me all most like it was before them, only with a greater appreciation for it. You will have to be strong, eat when you really don't feeel like it. I look at food as another medicine i had to take to get well again, because it will hurt to swallow and taste very very bad. We pull strenght from with in ourselves, your brain can be your best friend  or your worst enemy during treatment it depends on how you let it. Believe in yourself be confident and let nothing deter you in your quest for life.

   When this is over you will fall in to the ranks of survivors and as Eunicce and myself after years have past find ourselves trying to remember the bad times because the times now are so great.

  You will be and do great through this, so go forth into battle and be victorious, fear nothing.

On Mar 01, 2012 2:42 AM Live40mr wrote:

Yes I was very fortunate not to have had to endure the wrath of chemo. I to sported a fancy bowl cut( i think thats what thay called it ). My doctor stated that if my hair had not fallen out he would have questioned my treatment. I was fortunate my body reacted extremly well against the radiation. I call treatments our tour of duty, meaning that once you are done and get those clean scans boy was it worth it.

   I never want to paint a false picture that this will be easy especialy if you have rounds of chemo. My biggest point that i preach about is that once my treatments ended my life was returned to me all most like it was before them, only with a greater appreciation for it. You will have to be strong, eat when you really don't feeel like it. I look at food as another medicine i had to take to get well again, because it will hurt to swallow and taste very very bad. We pull strenght from with in ourselves, your brain can be your best friend  or your worst enemy during treatment it depends on how you let it. Believe in yourself be confident and let nothing deter you in your quest for life.

   When this is over you will fall in to the ranks of survivors and as Eunicce and myself after years have past find ourselves trying to remember the bad times because the times now are so great.

  You will be and do great through this, so go forth into battle and be victorious, fear nothing.

Eunice - If you do have chemo, there will be times that more than likely eating will not be possible due to the severe nausea.  If they suggest a feeding tube before beginning treatment, seriously consider it.  I thought I could do it without one and became weaker due to weight loss by the time I decided to go with it.  I should have listened to my doctors. Mark was very fortunate in that he did not have the chemo so eating was still possible for him.  He is so right on about your brain being your worst enemy during treatment though.  Like the little engine that could. 

Diana   

On Feb 29, 2012 8:42 PM Live40mr wrote:

I had 35 treatments from the Tomo machine from my ear lobes to the center of my chest. I took my treatments during my lunch hour, never missed a treatment, never missed work, lost my hair at radiation point, everything tasted bad, never had any pain medicine, dry mouth around week 4, never burned or blistered, no feeding tubes, did loose 25 lbs but needed to lol.

After treatment ceased hair gew back, taste came back 85-90 percent of salava came back, cancer did not come back :^), I am a true believer that Tomo saved my quality of life. All this was in 2005.

Mark: I know that you had the Radiation with the Toma Machine. But what type of Radiation was used. The letters IMRT stand for Intensity Modular Radiation Therapy. Both the Toma and Varain Machine can be used. Do you know how many Gy (Grey) units you had for each treatment?

Thanks for responding, these little bits of information could help someone in the Days ahead.

Sincerely, Eunice

On Mar 01, 2012 1:35 PM eunicep wrote:

On Feb 29, 2012 8:42 PM Live40mr wrote:

I had 35 treatments from the Tomo machine from my ear lobes to the center of my chest. I took my treatments during my lunch hour, never missed a treatment, never missed work, lost my hair at radiation point, everything tasted bad, never had any pain medicine, dry mouth around week 4, never burned or blistered, no feeding tubes, did loose 25 lbs but needed to lol.

After treatment ceased hair gew back, taste came back 85-90 percent of salava came back, cancer did not come back :^), I am a true believer that Tomo saved my quality of life. All this was in 2005.

Mark: I know that you had the Radiation with the Toma Machine. But what type of Radiation was used. The letters IMRT stand for Intensity Modular Radiation Therapy. Both the Toma and Varain Machine can be used. Do you know how many Gy (Grey) units you had for each treatment?

Thanks for responding, these little bits of information could help someone in the Days ahead.

Sincerely, Eunice

Eunice

I know you are researching on the internet but I think you have the idea that the difference between the machines is in the type of radiation - much like there are different types of chemo drugs.  The difference in the machines is the way the radiation is delivered.  TOMO machines deliver radiation slice by slice RATHER than to the entire tumor area like other machines.  No one questions that radiation from any machine will eradicate cancer cells - it is how precise they are in their delivery.  TOMO's slice by slice allows a far more exact delivery of the radiation - and that exactness protects most of the salivary glands.  We are talking about a space of milimeters between the area needing to be radiated and the salivary glands.  You can see where a moving organ (as the head of radiology at Barnes Hosp stated) might benefit a little more from whole tumor radiation BUT a non-moving organ or that organ's area (such as tonsil) would benefit more from a slice by slice method of radiation.  Remember, we are talking about a space measured in milimeters.  IMRT works to conform the beam to the entire shape of the tumor.  TOMO delivers a slice by slice beam and is so accurate that a daily CT is used to precisely place the radiation beam.  The CT scan also allows the operator to modify the treatment should the patient's anatomy change because of weight loss or tumor shrinkage.       

I did a little research on Varian and as Mark said, they are compaing it to IMRT which appears to be delivering radiation in much the same way.  TOMO is entirely different with its slice by slice delivery.  Also, I read quickly through four acticles and the articles on Varion refer to treatment for cancers such as prostate while TOMO clearly states treatment for head and neck cancers. 

The fact that all machines were equal in eradicating cancer is what made it very difficult to decide on which machine to be treated with.  I only wish I had someone who had personally used TOMO to tell me the difference before I had to make my decision.  Thank heavens I made the right decision - but it was days of beating myself up emotionally. 

You have two people on CC telling you that we had radiation via TOMO therapy and we are cancer free AND have 85-90% of our salivary glands while so many others on here had other types and deal with dry mouth due to little saliva production after treatment. 

If you are trying to decide between Varian and TOMO, another point to keep in mind is that TOMO has been around since 2002 and used with high success but there is little information available on Varian because it is a relatively new type of radiation treatment (which means even less information available for head and neck cancers - and the salivary gland).  Mark had his treatment in 2005 and I had mine in 2007 - we are both still cancer free, both have active salivary glands, and both are leading productive active lives today.  When all is said and done, it is a decision only you can make.       

Diana        

Hello, I'm new to the site.  I found out 4 hours ago that I have squamos cell carcinoma in 1 tonsil and it has spread to the lymph nodes on the same side.  Just wanted to say thanks for all the information that has been posted to the site.  I will be making appointments with all the doctors in the morning to get the ball rolling.

Dave

On Nov 27, 2012 4:54 AM SanDiegoDave wrote:

Hello, I'm new to the site.  I found out 4 hours ago that I have squamos cell carcinoma in 1 tonsil and it has spread to the lymph nodes on the same side.  Just wanted to say thanks for all the information that has been posted to the site.  I will be making appointments with all the doctors in the morning to get the ball rolling.

Dave

Hi Dave -

Sorry to meet this way but there are many on CC that can answer any questions that you may have as you begin down this road.  I just had my five year check up and my oncologist considers me now cured of head and neck cancer.  He was also impressed with the amount of saliva that I have regained which is totally credited to TOMO.  We don't think much about our saliva until it is greatly reduced and then you realize how beneficial it is.  I hope you choose a treatment center that has TOMO radiation.  That was the toughest decision for me to make because the hospital where I was diagnosed was only 20 min from my house but only had IMRT.  CTCA was a 2 hour drive each way and they recommended fragmented radiation (split into 2 sessions a day to reduce effects).  That meant staying in the area from Mon through Fri - returning home only on the weekends.  I called Barnes in St. Louis and asked to talk to the head of their radiation department because I had learned they had both IMRT and TOMO.  I told her that I wasn't going to come to her hosp because of distance but if it were her or a loved one which would she choose.  She told me for tonsil cancer she would go with TOMO.  That was good enough for me.

Take care and keep in touch.  You have a rough road ahead of you but treatment has to be rough to knock out the cancer. 

Diana 

On Nov 27, 2012 5:07 AM Dlynn1210 wrote:

On Nov 27, 2012 4:54 AM SanDiegoDave wrote:

Hello, I'm new to the site.  I found out 4 hours ago that I have squamos cell carcinoma in 1 tonsil and it has spread to the lymph nodes on the same side.  Just wanted to say thanks for all the information that has been posted to the site.  I will be making appointments with all the doctors in the morning to get the ball rolling.

Dave

Hi Dave -

Sorry to meet this way but there are many on CC that can answer any questions that you may have as you begin down this road.  I just had my five year check up and my oncologist considers me now cured of head and neck cancer.  He was also impressed with the amount of saliva that I have regained which is totally credited to TOMO.  We don't think much about our saliva until it is greatly reduced and then you realize how beneficial it is.  I hope you choose a treatment center that has TOMO radiation.  That was the toughest decision for me to make because the hospital where I was diagnosed was only 20 min from my house but only had IMRT.  CTCA was a 2 hour drive each way and they recommended fragmented radiation (split into 2 sessions a day to reduce effects).  That meant staying in the area from Mon through Fri - returning home only on the weekends.  I called Barnes in St. Louis and asked to talk to the head of their radiation department because I had learned they had both IMRT and TOMO.  I told her that I wasn't going to come to her hosp because of distance but if it were her or a loved one which would she choose.  She told me for tonsil cancer she would go with TOMO.  That was good enough for me.

Take care and keep in touch.  You have a rough road ahead of you but treatment has to be rough to knock out the cancer. 

Diana 

 

Thanks.  I'll make sure the first question I ask is about TOMO in the morning.

Dave

On Nov 27, 2012 7:13 AM SanDiegoDave wrote:

On Nov 27, 2012 5:07 AM Dlynn1210 wrote:

On Nov 27, 2012 4:54 AM SanDiegoDave wrote:

Hello, I'm new to the site.  I found out 4 hours ago that I have squamos cell carcinoma in 1 tonsil and it has spread to the lymph nodes on the same side.  Just wanted to say thanks for all the information that has been posted to the site.  I will be making appointments with all the doctors in the morning to get the ball rolling.

Dave

Hi Dave -

Sorry to meet this way but there are many on CC that can answer any questions that you may have as you begin down this road.  I just had my five year check up and my oncologist considers me now cured of head and neck cancer.  He was also impressed with the amount of saliva that I have regained which is totally credited to TOMO.  We don't think much about our saliva until it is greatly reduced and then you realize how beneficial it is.  I hope you choose a treatment center that has TOMO radiation.  That was the toughest decision for me to make because the hospital where I was diagnosed was only 20 min from my house but only had IMRT.  CTCA was a 2 hour drive each way and they recommended fragmented radiation (split into 2 sessions a day to reduce effects).  That meant staying in the area from Mon through Fri - returning home only on the weekends.  I called Barnes in St. Louis and asked to talk to the head of their radiation department because I had learned they had both IMRT and TOMO.  I told her that I wasn't going to come to her hosp because of distance but if it were her or a loved one which would she choose.  She told me for tonsil cancer she would go with TOMO.  That was good enough for me.

Take care and keep in touch.  You have a rough road ahead of you but treatment has to be rough to knock out the cancer. 

Diana 

 

Thanks.  I'll make sure the first question I ask is about TOMO in the morning.

Dave

Hello Dave,

   Diana has given you great advice. Remember doctors and hospitals are experts here, but are also in their respective fields to make money. They are dedicated to making you better no doubt but are not going to refer you some where else that may have better equipment to treat your paticular cancer.

  I also had squamous cell( Primary in the right tonsil which had spread to the top three lymphs on the same side. I had a modified neck dissection to remove the lymphs in the right side of my neck and my tonsild removed. I was the first patient an the James Brown Cancer center inLouisville Kentucky to be treated by the Tomotherapy machine. Did this machine save my life? No. Any radiation machine would have done that. What this machine did was save my QUALITY of life. I am a big advocate of Accurray/Tomotheray. There machine is like no other. You journey you are about is a tough one But its is achievable. Remember it is your body, you will have to live the rest of your life dealing with any side affect that may come from treatment not your doctor. If you don't like what you are hearing then a second opinion is a must. I am eight years out and compete in enduranse sports, I race in Tomotherapy racing skins to help spread the word. I believe it is the most important word that you will hear.

Stay positive, eat healthy so your body can help heal itself, find a good liquid vitiman because it will become  hard to swallow, You will soon start this journey and when completed you will see life in a totally different perspective. and you will become a survivor like us.

Mark

On Nov 27, 2012 7:13 AM SanDiegoDave wrote:

On Nov 27, 2012 5:07 AM Dlynn1210 wrote:

On Nov 27, 2012 4:54 AM SanDiegoDave wrote:

Hello, I'm new to the site.  I found out 4 hours ago that I have squamos cell carcinoma in 1 tonsil and it has spread to the lymph nodes on the same side.  Just wanted to say thanks for all the information that has been posted to the site.  I will be making appointments with all the doctors in the morning to get the ball rolling.

Dave

Hi Dave -

Sorry to meet this way but there are many on CC that can answer any questions that you may have as you begin down this road.  I just had my five year check up and my oncologist considers me now cured of head and neck cancer.  He was also impressed with the amount of saliva that I have regained which is totally credited to TOMO.  We don't think much about our saliva until it is greatly reduced and then you realize how beneficial it is.  I hope you choose a treatment center that has TOMO radiation.  That was the toughest decision for me to make because the hospital where I was diagnosed was only 20 min from my house but only had IMRT.  CTCA was a 2 hour drive each way and they recommended fragmented radiation (split into 2 sessions a day to reduce effects).  That meant staying in the area from Mon through Fri - returning home only on the weekends.  I called Barnes in St. Louis and asked to talk to the head of their radiation department because I had learned they had both IMRT and TOMO.  I told her that I wasn't going to come to her hosp because of distance but if it were her or a loved one which would she choose.  She told me for tonsil cancer she would go with TOMO.  That was good enough for me.

Take care and keep in touch.  You have a rough road ahead of you but treatment has to be rough to knock out the cancer. 

Diana 

 

Thanks.  I'll make sure the first question I ask is about TOMO in the morning.

Dave

As Mark said, whatever your hospital has is what they will promote because, unfortunately, it all comes down to what will financially benefit them. That is why I went to a third party for advice as to which one was better.  The way the head of radiology explained it to me was if it were a moving organ, she would recommend IMRT but with a non-moving organ (like tonsil) she would definitely go with TOMO because it is more precise and would aid in salvaging the salivary glands.  Once they are destroyed by radiation, there is no getting them back.   

As you travel down this road, you will find that you have to take charge of your own health at times.  The hospital I was diagnosed at told me that IMRT was the same as TOMO and equally as good - which it is not.  They are a great hospital but it still came down to what benefited them financially and advising me that another hospital had a better type of radiation was of no benefit financially to them. 

Once we are diagnosed with cancer, we are like a deer in headlights - and while still in shock we must make decisions that will affect us for the rest of our lives.  Mark was my mentor throughout my trip - and we come back to be there for others.  Even though Mark and I have never met in person,  he was there for me throughout my treatment.  I know how much it can mean to someone who is fighting cancer to know that others have been this route and come out on the other side.  Please keep in touch -         

Diana