Tonsil Cancer
Comments
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Tonsil CancerTIM_WWJD said:First Round of Chemo
I haven't been in any shape for the past couple of weeks to look at or add to this thread. I would like to respond to what was said about treatment options. Joe was right there are as many options as there are cases. I think you have to do two things, research your doctors before choosing one and second and most important is once you pick them trust their experience. It doesn't hurt to get second opinions but once you start don't second guess what your doing or they are sugesting. I have tonsil cancer and have chosen a chemo regiment followed by seven weeks of chemo/radiation. I started my chemo 2/9 and wore the pump for a week. I was ill prepared for how hard the side effects would hit me. I get two weeks of recovery between chemo weeks and I am just now feeling pretty good. Here is my live and learn for those just getting started. If your cancer is in your throat get a feeding tube before treatment starts. I have one and it was in use the second week. On chemo you need to keep fluids and nutrition up. Fluids to build electrolytes are a must and I had no desire to drink or eat. My apitite was gone and everything tasted funny. The feeding tube kept me going. My doctors have set a ten percent weight loss as the max before they stop treatments. I know different doctors may allow different things but your body needs the weight to recover. Another thing I advise is rest, I tried to do too much the first week and paid for it. It is hard to sit and do nothing if your use to doing and working. Wow I had better stop this is getting too long. Thanks again Joe for your faithfulness to this site. Kevin thanks for the post and I will keep you updated.
Tim
I also found mine shaving, lump on the right side of my neck. I had a FNA which called the lump a cyst, my ears, nose & throat still wanted to remove it so we did. I was schocked (non smoker , non drinker) when he told me the lab report was SCC. Then we took the tonsils out and cancer was in the right tonsil the starting point. I just finished 7 weeks of rad. & chemo. 8 days ago. No peg tube for me, but I would advise anyone who will have 7 weeks of rad. to get one at about 3 weeks. I'm down to 203 lbs from 247 lbs. Without taste I forget to take calories. Going back to work next week, very gald. Best wishes to all on this site0 -
WOWBobert said:Tonsil Cancer
I also found mine shaving, lump on the right side of my neck. I had a FNA which called the lump a cyst, my ears, nose & throat still wanted to remove it so we did. I was schocked (non smoker , non drinker) when he told me the lab report was SCC. Then we took the tonsils out and cancer was in the right tonsil the starting point. I just finished 7 weeks of rad. & chemo. 8 days ago. No peg tube for me, but I would advise anyone who will have 7 weeks of rad. to get one at about 3 weeks. I'm down to 203 lbs from 247 lbs. Without taste I forget to take calories. Going back to work next week, very gald. Best wishes to all on this site
Bobert
It sounds like you had the best results on this I have heard of. If someone had to go through this it lookslike you are doing great. I also did not smoke or chew and drank moderatly and was just as shocked I had tosil cancer. It has caused me to try to figure out why. I grew up with parents who smoked and worked for years in a smoking allowed company until Oregon passed a law to remove smoking from indoors. I was bad about eating enough fruits and vegtables, I heated my lunch up in plastic containers in the microwave and drank diet sodas. If any of these things are similar to you please let me know.
Thanks Tim0 -
Alternative Therapy--Red Laser Light
My squamous cell carcinoma, left tonsil, apparently was caused by two things: (1) 9 years of performing underwater exercises as a Navy Seal in highly polluted waters and (2) Smoking.
I wish I had seen your email when you first wrote and had not yet undergone radiation or chemotherapy. Since your malignancy is a Stage 1, you would, I think, be a great candidate for red laser light treatment--instead of surgery, chemotherapy, and radiation therapy. Here is the website to go to to read about it: www.umm.edu/news/releases/laser_light.htm It destroys only the malignant tissue and apparently has no side effects. They would not accept me for such treatment of my squamous cell carcinoma, left tonsil, in 2004, because it was Stage 4 and was thus by that time too thick or deep to be penetrated by the red laser light.
Instead, I went through the "golden standard" of radiation & chemotherapy, sometimes combined, so-called sandwich therapy. It was very hard, but I stuck through it to the end and never had any kind of feeding tube. Once that was over and the PET/CT scans showed no residual cancer anywhere, I went to Israel, where I had immunotherapy, using the lymphocytes of my only sibling (who, purposely, was not a good HLA match), to target any cancer cells that might remain in my body, too small to be picked up by a PET/CT. You can read about Dr. Shimon Slavin's immunotherapy at the following website: https://www.remedy-tours.com/content55.html
It is now 4 1/2 yrs. later and there has been no recurrence. However, thanks to the radiation, I have almost no salivary gland function and my ability to taste anything pretty much doesn't exist. For a long time I would ask my doctors when taste would return, and they would string me along, saying that it would soon. Finally one unorthodox, courageous intern admitted that it would probably never return.
Incidentally, don't let anyone talk you into a tonsillectomy following radiation and chemotherapy: There's no point to it, since, if the cancer returns, it could return anywhere along the gastro-respiratory tract and anyway, your throat would not heal from the surgery for a long, long time, because of radiation changes.
Best of luck to all of you!0 -
Tonsil Cancer
My husband has cancer in his left tonsil. It has spread to his lymph nodes in his left jaw. The doctor started him on 2 radiation per day for 6 weeks. And also 6 Chemos which may be cut to 4. Feeding tube and all. So far is doing well, but has bouts of nausea from radiation. Lost a good deal of weight. the VA said his comes from Agent Orange used in Vietnam. James has never smoked, chewed or dipped. Has always been healthy til now. Will keep you posted for his DR. said that he had an 80% cure rate.0 -
Initial "Cure" vs. Recurrence Later
Anyone with tonsil cancer--especially that has spread about locally--should, of course, go along with whatever treatment is recommended by his doctors. And usually if that treatment includes radiation and chemotherapy, the result should be that a later PET/CT scan will be negative for any cancer.
The important thing to bear in mind, though, is that head and neck cancers have a high statistical rate of recurring, not necessarily exactly where the initial cancer was found, but usually somewhere along the aero-gastric tract. How can you prevent it from coming back?
Based on our experience, we would recommend, once you've completed the "gold standard" for treatment and have the least residual malignancy possible, that you look into immunotherapy. Although I went all the way to Israel to have that follow-up immunotherapy at the clinic of Prof. Shimon Slavin, I believe something similar may be available here, maybe at the N.I.H. (National Institutes of Health).0 -
Possibly a link?chinaberry25 said:Tonsil Cancer
My husband has cancer in his left tonsil. It has spread to his lymph nodes in his left jaw. The doctor started him on 2 radiation per day for 6 weeks. And also 6 Chemos which may be cut to 4. Feeding tube and all. So far is doing well, but has bouts of nausea from radiation. Lost a good deal of weight. the VA said his comes from Agent Orange used in Vietnam. James has never smoked, chewed or dipped. Has always been healthy til now. Will keep you posted for his DR. said that he had an 80% cure rate.
http://csn.cancer.org/node/1678870 -
Also in Oregon
Hi Tim,
I went through the same treatment at OHSU and St. Vincents in the winter of 2005/06. I haven't been on this site much lately as I've been so busy with a new job. If you have any questions I can answer (I also had squamous cell carcinoma of the tonsil with 2 lymph nodes also infected) I would be happy to answer what I can.
Wayne0 -
new to site
Hello,
I have just recently found out that I had a tonsil cancer. I do not smoke or drink so this came as a surprise to me. I have recently discovered that it is becoming more common to get this squamous cancer on the tonsil and not be in the usual categories. I understand that it is considered an non hpv or an hpv which at this point I do not know which I am considered to be.
I found my mass when I happened to be washing my face and noticing a hard lymph node. I had no other symptoms or lumps. I was sent to an MRI which showed positive for a mass then was referred to an ENT doctor who discovered the mass on my tonsil.
The doctor felt we found it early and suggested the course of treatment and then referred me to the radiation oncologist to get his perspective.
I was faced with two options.
Have a biopsy then if it was definitely positive have radiation then chemo or have the biopsy then if tested positive have the tonsil removed, and surrounding lymph nodes.
Both options seemed reasonable. I also have an issue with gag reflex so did not really want to attempt a needle biopsy and because it was pretty certain it was cancer I had the option to go in for surgery under a general and the doctor would pull out the tonsil with mass, do frozen section and while I was still sleeping to have it sent for a result. If it did come back as positive then he would proceed with the large hard lymph node being removed and surrounding lymph nodes taken out with a neck disection. After much thought I decided to go in for surgery to remove the tonsil with mass. The reason I did that was I thought with it removed I would start fresh with not tumor and that less radiation would be needed since the tumor was not there and I would not necessarily .need chemo if I went that route.
The surgery was done last Monday, tumor was positive. The surgery was supposed to take 2 hours but lasted over 5. Complications arose because the tumor they thought was on the lymph node was actually wedged between the jugular and the lymph node which made it tricky to remove. I got the pathology report and it showed out of 56 nodes taken out only 4 near the tonsil were positive for cancer. Overall the prognosis looks good.
I was told that the surgery would be the easy part and the radiation would be difficult.
I have had a miserable week. The neck and face is so swollen that I can barely move my neck. Swallowing is next to impossible, I have been having ear pain and overall feeling very weepy. I started to wonder if this would be worth all that I am going through and maybe not go with radiation at all since this was a sample of how I was going to feel during the treatments.
SO I guess my question for those out there with the same problem, who had surgery to remove the mass before they started radiation did you have the smae issues with your ability to eat and have swallowing issues? I would love to hear feedback. Thanks everyone0 -
Surgery then radiationsouplady said:new to site
Hello,
I have just recently found out that I had a tonsil cancer. I do not smoke or drink so this came as a surprise to me. I have recently discovered that it is becoming more common to get this squamous cancer on the tonsil and not be in the usual categories. I understand that it is considered an non hpv or an hpv which at this point I do not know which I am considered to be.
I found my mass when I happened to be washing my face and noticing a hard lymph node. I had no other symptoms or lumps. I was sent to an MRI which showed positive for a mass then was referred to an ENT doctor who discovered the mass on my tonsil.
The doctor felt we found it early and suggested the course of treatment and then referred me to the radiation oncologist to get his perspective.
I was faced with two options.
Have a biopsy then if it was definitely positive have radiation then chemo or have the biopsy then if tested positive have the tonsil removed, and surrounding lymph nodes.
Both options seemed reasonable. I also have an issue with gag reflex so did not really want to attempt a needle biopsy and because it was pretty certain it was cancer I had the option to go in for surgery under a general and the doctor would pull out the tonsil with mass, do frozen section and while I was still sleeping to have it sent for a result. If it did come back as positive then he would proceed with the large hard lymph node being removed and surrounding lymph nodes taken out with a neck disection. After much thought I decided to go in for surgery to remove the tonsil with mass. The reason I did that was I thought with it removed I would start fresh with not tumor and that less radiation would be needed since the tumor was not there and I would not necessarily .need chemo if I went that route.
The surgery was done last Monday, tumor was positive. The surgery was supposed to take 2 hours but lasted over 5. Complications arose because the tumor they thought was on the lymph node was actually wedged between the jugular and the lymph node which made it tricky to remove. I got the pathology report and it showed out of 56 nodes taken out only 4 near the tonsil were positive for cancer. Overall the prognosis looks good.
I was told that the surgery would be the easy part and the radiation would be difficult.
I have had a miserable week. The neck and face is so swollen that I can barely move my neck. Swallowing is next to impossible, I have been having ear pain and overall feeling very weepy. I started to wonder if this would be worth all that I am going through and maybe not go with radiation at all since this was a sample of how I was going to feel during the treatments.
SO I guess my question for those out there with the same problem, who had surgery to remove the mass before they started radiation did you have the smae issues with your ability to eat and have swallowing issues? I would love to hear feedback. Thanks everyone
All though my cancer was not tonsil, but sinus. I had surgery then radiation and I would say all though the side effects were awful, (dry mouth, swallowing problems, sinus dryout) I dont regret my decision to have the IMRT treatments. I did not want a reoccurence of the cancer and felt I needed to do whatever it took to not go through it again. All though no treatments are guaranteed, 7 months after my last treatment Id say Im 80 - 90% back to "normal".
Radiation is not easy, get all the help you can get from your doctors, (feeding tube, pain meds, aquaphor for the skin, mouth medicine to numb your throat) that will help ease the discomfort you are having to deal with.
Hang in there, Its gonna get better. One day at a time
Sirena0 -
It suxsouplady said:new to site
Hello,
I have just recently found out that I had a tonsil cancer. I do not smoke or drink so this came as a surprise to me. I have recently discovered that it is becoming more common to get this squamous cancer on the tonsil and not be in the usual categories. I understand that it is considered an non hpv or an hpv which at this point I do not know which I am considered to be.
I found my mass when I happened to be washing my face and noticing a hard lymph node. I had no other symptoms or lumps. I was sent to an MRI which showed positive for a mass then was referred to an ENT doctor who discovered the mass on my tonsil.
The doctor felt we found it early and suggested the course of treatment and then referred me to the radiation oncologist to get his perspective.
I was faced with two options.
Have a biopsy then if it was definitely positive have radiation then chemo or have the biopsy then if tested positive have the tonsil removed, and surrounding lymph nodes.
Both options seemed reasonable. I also have an issue with gag reflex so did not really want to attempt a needle biopsy and because it was pretty certain it was cancer I had the option to go in for surgery under a general and the doctor would pull out the tonsil with mass, do frozen section and while I was still sleeping to have it sent for a result. If it did come back as positive then he would proceed with the large hard lymph node being removed and surrounding lymph nodes taken out with a neck disection. After much thought I decided to go in for surgery to remove the tonsil with mass. The reason I did that was I thought with it removed I would start fresh with not tumor and that less radiation would be needed since the tumor was not there and I would not necessarily .need chemo if I went that route.
The surgery was done last Monday, tumor was positive. The surgery was supposed to take 2 hours but lasted over 5. Complications arose because the tumor they thought was on the lymph node was actually wedged between the jugular and the lymph node which made it tricky to remove. I got the pathology report and it showed out of 56 nodes taken out only 4 near the tonsil were positive for cancer. Overall the prognosis looks good.
I was told that the surgery would be the easy part and the radiation would be difficult.
I have had a miserable week. The neck and face is so swollen that I can barely move my neck. Swallowing is next to impossible, I have been having ear pain and overall feeling very weepy. I started to wonder if this would be worth all that I am going through and maybe not go with radiation at all since this was a sample of how I was going to feel during the treatments.
SO I guess my question for those out there with the same problem, who had surgery to remove the mass before they started radiation did you have the smae issues with your ability to eat and have swallowing issues? I would love to hear feedback. Thanks everyone
Yes the tonsillectomy was terrible but after about 10 days the worst is over and you start to feel better. Keep trying to stretch the neck and keep it moving, that will help in the long run. Keep drinking and eating to keep the swallowing reflex trained.
Please go forward with the radiation as there is no cure with surgery alone. Radiation is really what it takes to kill this beast. The chemo can make the radiation much more effective, a one two punch if you will, but chemo usually isn't a primary treatment.
Get the PEG tube put in right away, you will need it.The first week or so of radiation/chemo isn't bad either but towards the end of the second week your taste buds will start to go. After that swallowing food became awful for me as the taste was so bitter and I lost a lot of weight. Once I got the PEG tube in that all stabilized.
It is a terrible and painful treatment but we'll be here to help you through it. You have a new life now, not one you wanted but to survive you will have to be strong and determined to do whatever it takes.
Get in to see a dentist NOW and get a thorough cleaning. Get some of the fluoride rinse he uses so you can rinse with it every day. The radiation is hard on the teeth and an infection can get out of control once your body's defenses are down. You want to be as healthy as possible before the radiation starts.
Also, plan some meals ahead for the next couple of weeks of your favorite foods and tastes. It may be a while before they taste the same (or similar) again. Putting on a few pounds (if you are an average person) probably won't hurt as you will lose them all during the treatment. You can't gain or lose too much weight after your mask is made or it doesn't fit properly anymore and all the prep work has to be redone.
Wayne0 -
tonsilwboaz said:It sux
Yes the tonsillectomy was terrible but after about 10 days the worst is over and you start to feel better. Keep trying to stretch the neck and keep it moving, that will help in the long run. Keep drinking and eating to keep the swallowing reflex trained.
Please go forward with the radiation as there is no cure with surgery alone. Radiation is really what it takes to kill this beast. The chemo can make the radiation much more effective, a one two punch if you will, but chemo usually isn't a primary treatment.
Get the PEG tube put in right away, you will need it.The first week or so of radiation/chemo isn't bad either but towards the end of the second week your taste buds will start to go. After that swallowing food became awful for me as the taste was so bitter and I lost a lot of weight. Once I got the PEG tube in that all stabilized.
It is a terrible and painful treatment but we'll be here to help you through it. You have a new life now, not one you wanted but to survive you will have to be strong and determined to do whatever it takes.
Get in to see a dentist NOW and get a thorough cleaning. Get some of the fluoride rinse he uses so you can rinse with it every day. The radiation is hard on the teeth and an infection can get out of control once your body's defenses are down. You want to be as healthy as possible before the radiation starts.
Also, plan some meals ahead for the next couple of weeks of your favorite foods and tastes. It may be a while before they taste the same (or similar) again. Putting on a few pounds (if you are an average person) probably won't hurt as you will lose them all during the treatment. You can't gain or lose too much weight after your mask is made or it doesn't fit properly anymore and all the prep work has to be redone.
Wayne
thank you Wayne, i thought I was totally prepared for the surgery, feeling like I knew what to expect but was so wrong. The tonsil, neck is so sore that it burns and I find it too hard to deal with. It has been just over a week now after surgery and it still hurts so much. The doctor told me initially that I would have no trouble eating or anything after surgery but I guess since he had to do so much more surgery that the outcome was not what was desribed.
Today I see the surgeon and the chemo doctor to have them go over the report and suggest what treatment he feels is best for me. I was discouraged yesterday when I posted my comment, worried that I was not going to be able to go thru the side effects of radiation but after talking it thru with a friend she reminded me that I do not have to decide about anything next week or next month that I only have to decide is what I want to do for today...that got things back in perspective so I guess I am ready for the next step. I just got a little scared I guess. Having to face this alone without family members near by is hard when you are face with this journey but you begin to see what quality of friends you have when things like this happens.0 -
Not Alonesouplady said:tonsil
thank you Wayne, i thought I was totally prepared for the surgery, feeling like I knew what to expect but was so wrong. The tonsil, neck is so sore that it burns and I find it too hard to deal with. It has been just over a week now after surgery and it still hurts so much. The doctor told me initially that I would have no trouble eating or anything after surgery but I guess since he had to do so much more surgery that the outcome was not what was desribed.
Today I see the surgeon and the chemo doctor to have them go over the report and suggest what treatment he feels is best for me. I was discouraged yesterday when I posted my comment, worried that I was not going to be able to go thru the side effects of radiation but after talking it thru with a friend she reminded me that I do not have to decide about anything next week or next month that I only have to decide is what I want to do for today...that got things back in perspective so I guess I am ready for the next step. I just got a little scared I guess. Having to face this alone without family members near by is hard when you are face with this journey but you begin to see what quality of friends you have when things like this happens.
You are never alone in your fight to beat cancer. All of us here are here to help those that need it. Please feel free to email me here or at my personal email address sirenaf40@aol.com anytime you just need a cancer buddy
Sirena0 -
Tonsil Cancersouplady said:new to site
Hello,
I have just recently found out that I had a tonsil cancer. I do not smoke or drink so this came as a surprise to me. I have recently discovered that it is becoming more common to get this squamous cancer on the tonsil and not be in the usual categories. I understand that it is considered an non hpv or an hpv which at this point I do not know which I am considered to be.
I found my mass when I happened to be washing my face and noticing a hard lymph node. I had no other symptoms or lumps. I was sent to an MRI which showed positive for a mass then was referred to an ENT doctor who discovered the mass on my tonsil.
The doctor felt we found it early and suggested the course of treatment and then referred me to the radiation oncologist to get his perspective.
I was faced with two options.
Have a biopsy then if it was definitely positive have radiation then chemo or have the biopsy then if tested positive have the tonsil removed, and surrounding lymph nodes.
Both options seemed reasonable. I also have an issue with gag reflex so did not really want to attempt a needle biopsy and because it was pretty certain it was cancer I had the option to go in for surgery under a general and the doctor would pull out the tonsil with mass, do frozen section and while I was still sleeping to have it sent for a result. If it did come back as positive then he would proceed with the large hard lymph node being removed and surrounding lymph nodes taken out with a neck disection. After much thought I decided to go in for surgery to remove the tonsil with mass. The reason I did that was I thought with it removed I would start fresh with not tumor and that less radiation would be needed since the tumor was not there and I would not necessarily .need chemo if I went that route.
The surgery was done last Monday, tumor was positive. The surgery was supposed to take 2 hours but lasted over 5. Complications arose because the tumor they thought was on the lymph node was actually wedged between the jugular and the lymph node which made it tricky to remove. I got the pathology report and it showed out of 56 nodes taken out only 4 near the tonsil were positive for cancer. Overall the prognosis looks good.
I was told that the surgery would be the easy part and the radiation would be difficult.
I have had a miserable week. The neck and face is so swollen that I can barely move my neck. Swallowing is next to impossible, I have been having ear pain and overall feeling very weepy. I started to wonder if this would be worth all that I am going through and maybe not go with radiation at all since this was a sample of how I was going to feel during the treatments.
SO I guess my question for those out there with the same problem, who had surgery to remove the mass before they started radiation did you have the smae issues with your ability to eat and have swallowing issues? I would love to hear feedback. Thanks everyone
As with you I had tonsil cancer without being in any risk catagory. I had my tonsils removed but did not have as much dissection as you did. My surgeon loaded the area up with marcaine and I had very little pain for 2 days before the soreness crept in. It was manageable with Tylenol for me, but everyone has a different pain threshold. Knowing that what you will go through could be a rough course, not doing so would be even worse. The effects of having the cancer spread and the systems it could affect is a much worse scenario. Survivors are here because they in many different ways with many different stories and experiences, made it through the treatments and want to encourage, help, and to be honest with those who are to face what we've been through. I would encourage you to write down questions for your medical team and continue to ask the people on this site to get answers and support. We may have had different treatments, side effects, and results, but we have overcome this. Just reading some of the responses, I see that you are getting good advice. There are good people on this site who are willing to help and give you emotional support. Don't hesitate to use that. If you've never been a fighter before, you are one now and we are behind you, beside you and with you cheering you on.0 -
Hi Soupladysouplady said:new to site
Hello,
I have just recently found out that I had a tonsil cancer. I do not smoke or drink so this came as a surprise to me. I have recently discovered that it is becoming more common to get this squamous cancer on the tonsil and not be in the usual categories. I understand that it is considered an non hpv or an hpv which at this point I do not know which I am considered to be.
I found my mass when I happened to be washing my face and noticing a hard lymph node. I had no other symptoms or lumps. I was sent to an MRI which showed positive for a mass then was referred to an ENT doctor who discovered the mass on my tonsil.
The doctor felt we found it early and suggested the course of treatment and then referred me to the radiation oncologist to get his perspective.
I was faced with two options.
Have a biopsy then if it was definitely positive have radiation then chemo or have the biopsy then if tested positive have the tonsil removed, and surrounding lymph nodes.
Both options seemed reasonable. I also have an issue with gag reflex so did not really want to attempt a needle biopsy and because it was pretty certain it was cancer I had the option to go in for surgery under a general and the doctor would pull out the tonsil with mass, do frozen section and while I was still sleeping to have it sent for a result. If it did come back as positive then he would proceed with the large hard lymph node being removed and surrounding lymph nodes taken out with a neck disection. After much thought I decided to go in for surgery to remove the tonsil with mass. The reason I did that was I thought with it removed I would start fresh with not tumor and that less radiation would be needed since the tumor was not there and I would not necessarily .need chemo if I went that route.
The surgery was done last Monday, tumor was positive. The surgery was supposed to take 2 hours but lasted over 5. Complications arose because the tumor they thought was on the lymph node was actually wedged between the jugular and the lymph node which made it tricky to remove. I got the pathology report and it showed out of 56 nodes taken out only 4 near the tonsil were positive for cancer. Overall the prognosis looks good.
I was told that the surgery would be the easy part and the radiation would be difficult.
I have had a miserable week. The neck and face is so swollen that I can barely move my neck. Swallowing is next to impossible, I have been having ear pain and overall feeling very weepy. I started to wonder if this would be worth all that I am going through and maybe not go with radiation at all since this was a sample of how I was going to feel during the treatments.
SO I guess my question for those out there with the same problem, who had surgery to remove the mass before they started radiation did you have the smae issues with your ability to eat and have swallowing issues? I would love to hear feedback. Thanks everyone
This is my first post. I finished my treatment for tonsil cancer in April of 2007. I was told I was stage 3, but they did not recommend surgery, instead I had 39 radiation treatments and 7 chemos. I never smoked and am not a drinker, and had never worked with hazardous materials.
I can not address the surgery but I can address the radiation. First of all, I have to say radiation does not hurt. Usually, my treatment was one or two minutes not including the machine adjustments. It is the side effects that cause the problems. Having said that, you will get through it ! We all did ! I don't know how specific you might want me to be, but you can ask me anything you would like. I am the type of person that wants to know everything that is going to happen, but I realize not everyone wants to know everything.
My salivary glands did get damaged and I have limited saliva. I can taste everything savory, but can only taste the first few bites of sweet. So, the weight that I lost stayed off because I don't eat bread or cake or anything very starchy anymore. Actually, if I drink a lot of water I can eat anything but it's too much work and it tastes watered down so what's the point. I can't eat spicy anymore, which I use to enjoy. But, I just attended my daughter's college graduation this weekend and I'm going to my son's Master's graduation the end of this month. I am soooooooooooo Happy that the treatment worked!
It is going to be tough BUT, YOU WILL GET THROUGH IT!
I wish you the best,stay positive and I hope you keep in touch.0 -
tonsil surgerySIRENAF42 said:Not Alone
You are never alone in your fight to beat cancer. All of us here are here to help those that need it. Please feel free to email me here or at my personal email address sirenaf40@aol.com anytime you just need a cancer buddy
Sirena
thanks Serena, I appreciate it. my email address is jwandpa@gmail.com it would be great to have someone out there who understands. So far this site has been very informational and I have felt comforted knowing that others are out there who have been through the same things.
Today I saw the chemo doctor and found out the stage of my cancer and suggested treatment. I was caught a bit off guard when he told me I should also have chemo combined radiation treatment. I was expecting to hear in my case since I had the surgery I would not need the chemo.
The other things I was surprised about is the stage of cancer. I was told the staging for neck and throat cancer is different than other types but I was told it was a stage 4. I was floored. My primary tumor was in the tonsil and was a bit over 2cm and there were 4 other nodes in the same area that also tested positive. I thought that since it was not advanced in the other regions of my neck and limited to a small area that I was in a good place. The surgeon thought that I should be about 80% curable with radiation. In talking to the chemo doctor it does not sound as much. The cancer has not spread to any other organs or areas within the head. I am told now that I have a higher risk. So now the decision is what to do with the treatment. He also gave us an option for a different type of chemo treatment.to combine with the radiation and it is called Erbitux and us supposed to be less harmful to kidney functions as well as it foes not cause your hair to fall out or any other serious side effects. The only effects it has seems to be a rash and diareha. This method has been around for less time than the usual cetuximal but certainly sounds like it might be a good option. The thing about the Erbitux is it has not been tried on cancers who have had it surgically removed so not as much data out there. It is believed that possibly whether or not which chemo is used it ups the cure rate to an additonal 10% if used in conjunction with radiation. so that is today, anyone else out there given the option of Erbitux and if so how was it?0 -
Tonsil Cancer
It is now four years to the day since I was diagnosed with tonsil cancer. I currently volunteer at our local cancer treatment center I wanted to comment on the Chemotherapy. I had Cisplatin which is one of the old drugs that causes a lot of side effects in many patients. I was very sick and hospitalized after each of my three rounds of Chemo. The center here has switched to Erbitux for the very reasons you identified. The patients have very few side effects and the cure rate is the same.
Most of the cancer treatment centers operate in conjunction with the larger cancer centers of the United States (M.D. Anderson, Mayo, Sloan Kettering) just to name a few. The treatment protocols for the various types of cancer are fairly standardized but adjusted or modified to fit the individual case being treated. The standard for tonsil cancer is both chemothery and radiation. As the earlier commments indicated the primary is radiation while the chemo makes it more effective. This is the case whether you have your tonsils removed or not. In my case they were removed including tissue surrounding the right tonsil.
Besides the PEG tube you will also want to consider either a Port or a pic-line for your chemotherapy. The drugs are hard on your veins and this way you do not have to get an IV started every time you have treatment or need fluids during your treatment.
Hope this helps you. This is a great site so keep us posted on your progress and we will be here to help get you through it.0 -
Erbituxsouplady said:tonsil surgery
thanks Serena, I appreciate it. my email address is jwandpa@gmail.com it would be great to have someone out there who understands. So far this site has been very informational and I have felt comforted knowing that others are out there who have been through the same things.
Today I saw the chemo doctor and found out the stage of my cancer and suggested treatment. I was caught a bit off guard when he told me I should also have chemo combined radiation treatment. I was expecting to hear in my case since I had the surgery I would not need the chemo.
The other things I was surprised about is the stage of cancer. I was told the staging for neck and throat cancer is different than other types but I was told it was a stage 4. I was floored. My primary tumor was in the tonsil and was a bit over 2cm and there were 4 other nodes in the same area that also tested positive. I thought that since it was not advanced in the other regions of my neck and limited to a small area that I was in a good place. The surgeon thought that I should be about 80% curable with radiation. In talking to the chemo doctor it does not sound as much. The cancer has not spread to any other organs or areas within the head. I am told now that I have a higher risk. So now the decision is what to do with the treatment. He also gave us an option for a different type of chemo treatment.to combine with the radiation and it is called Erbitux and us supposed to be less harmful to kidney functions as well as it foes not cause your hair to fall out or any other serious side effects. The only effects it has seems to be a rash and diareha. This method has been around for less time than the usual cetuximal but certainly sounds like it might be a good option. The thing about the Erbitux is it has not been tried on cancers who have had it surgically removed so not as much data out there. It is believed that possibly whether or not which chemo is used it ups the cure rate to an additonal 10% if used in conjunction with radiation. so that is today, anyone else out there given the option of Erbitux and if so how was it?
I had tonsil cancer in 2007, left tonsil, stage III,it was 4cm but had not spread to the nodes. My first chemo was Cisplatin, but then I continued with Erbitux. The first treatment is over a period of two hours, that is to see if you have an allergic reaction. The following treatments were only one hour long. My only side effect was a mild breakout around my nose . Once treatment was over it cleared up completely.
I also had Amofistine injections everyday to try and save my salivary glands. I had an injection in each arm everyday before radiation and it became painful. If you know the pain of a tetanus shot, you can imagine the compounded effect of 78 injections. So it hurt, but after all the radiation I still have some saliva, which is a good thing.
Getting back to Erbitux, it had been used for other cancers, but had just been approved for head neck cancer when I took it. I was told it was less harmful to the rest of the body so I decided to take a chance since radiation is really the primary treatment. The fact that your doctor has suggested Erbitux even though you had surgery would tell me to ask yourself how well do you trust your doctor. You can read about Erbitux yourself and if you have questions ask your doctor.
I will share any of my experience with you that you want to know. Keep positive, it will work out.0 -
erbituxbyzas said:Erbitux
I had tonsil cancer in 2007, left tonsil, stage III,it was 4cm but had not spread to the nodes. My first chemo was Cisplatin, but then I continued with Erbitux. The first treatment is over a period of two hours, that is to see if you have an allergic reaction. The following treatments were only one hour long. My only side effect was a mild breakout around my nose . Once treatment was over it cleared up completely.
I also had Amofistine injections everyday to try and save my salivary glands. I had an injection in each arm everyday before radiation and it became painful. If you know the pain of a tetanus shot, you can imagine the compounded effect of 78 injections. So it hurt, but after all the radiation I still have some saliva, which is a good thing.
Getting back to Erbitux, it had been used for other cancers, but had just been approved for head neck cancer when I took it. I was told it was less harmful to the rest of the body so I decided to take a chance since radiation is really the primary treatment. The fact that your doctor has suggested Erbitux even though you had surgery would tell me to ask yourself how well do you trust your doctor. You can read about Erbitux yourself and if you have questions ask your doctor.
I will share any of my experience with you that you want to know. Keep positive, it will work out.
you said that I should question the doctor I had if he suggested the erbitux, can you explain further and your experience avout it. The doctor stated that since I was a stage 4 and stage 4 in this case does not mean it spread to other organs just that I had 4 positive nodes near the primary which makes the stage I guess. He stated that due to the stage that I should have the radiation plus the erbitux or citplastin to help assure I do not have a reoccurance....if you have futher information I would love to hear it, thanks you also mentioned something about amosfistine for slivary glands I have not heard anything about that, what is that all about?0 -
Tonsilljoy said:Tonsil Cancer
It is now four years to the day since I was diagnosed with tonsil cancer. I currently volunteer at our local cancer treatment center I wanted to comment on the Chemotherapy. I had Cisplatin which is one of the old drugs that causes a lot of side effects in many patients. I was very sick and hospitalized after each of my three rounds of Chemo. The center here has switched to Erbitux for the very reasons you identified. The patients have very few side effects and the cure rate is the same.
Most of the cancer treatment centers operate in conjunction with the larger cancer centers of the United States (M.D. Anderson, Mayo, Sloan Kettering) just to name a few. The treatment protocols for the various types of cancer are fairly standardized but adjusted or modified to fit the individual case being treated. The standard for tonsil cancer is both chemothery and radiation. As the earlier commments indicated the primary is radiation while the chemo makes it more effective. This is the case whether you have your tonsils removed or not. In my case they were removed including tissue surrounding the right tonsil.
Besides the PEG tube you will also want to consider either a Port or a pic-line for your chemotherapy. The drugs are hard on your veins and this way you do not have to get an IV started every time you have treatment or need fluids during your treatment.
Hope this helps you. This is a great site so keep us posted on your progress and we will be here to help get you through it.
Thank you for the information. There is so much to absorb and I am sure as i am everyone just wants to make the right decission to be odds are in thier favor.
I have talked to the doctor regarding the feeding tube and he thought that maybe I would not need it however even after 10 days of the surgery for the tonsil removal I am still not able to eat much due to the area still healing so if that is an indication of what is to come I wonder if it will become necessaru. the tube, what is the process of having it put in and how is it taken care of, maintianing the care and such. I already asked about pic line since my veins are not easy to deal with on usual days so I think that is a good idea.
How soon after radiation did you find difficulity with swallowing or eating? WIth the tube did it help maintain your weight? Were you able to drive yourself to and from treatments all thru treatments?
Thanks again for information
Patti0 -
difficulity with swallowing and eatingsouplady said:Tonsil
Thank you for the information. There is so much to absorb and I am sure as i am everyone just wants to make the right decission to be odds are in thier favor.
I have talked to the doctor regarding the feeding tube and he thought that maybe I would not need it however even after 10 days of the surgery for the tonsil removal I am still not able to eat much due to the area still healing so if that is an indication of what is to come I wonder if it will become necessaru. the tube, what is the process of having it put in and how is it taken care of, maintianing the care and such. I already asked about pic line since my veins are not easy to deal with on usual days so I think that is a good idea.
How soon after radiation did you find difficulity with swallowing or eating? WIth the tube did it help maintain your weight? Were you able to drive yourself to and from treatments all thru treatments?
Thanks again for information
Patti
I agree, you find out you have cancer and you have to make all these decisions within such a limited amount of time.
I had radiation over a period of 8 - 8 1/2 weeks. The first two weeks I ate normally. Then I began to notice a difference and needed to eat soups or pasta, foods that would go down easily. Over time my mouth developed sores and inflammation and it became more difficult to find things that I could eat.
The radiation causes everything to dry up but the mucous part of the saliva is left, so as the inflammation increased in my mouth I found it extremely difficult to swallow. I ended up dehydrated and had to be hospitalized for almost two weeks at the end of my treatment.
I did not have a feeding tube, if I had, I probably would not have become dehydrated.
I mentioned I took Amofostine, to help save my salivary glands and I also took Kytril along with it to prevent nausea. I can't even remember the medicine I had to swish in my mouth before radiation. For me it all became exhausting and I was so fortunate to have my husband drive me back and forth every day. The ride took from 30 to 60 minutes depending on traffic. How far will you have to travel for treatment? I think it would be a good idea to arrange for someone to drive you and then see how you feel once you're in treatment. Everybody's treatment and reaction is similar but different.
This all may sound terrible and it is to a degree, but once treatment is over it begins to get better, it just takes time.0
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