CancerCompass message board discussion started by Bbj23 on 11/10/2006 http://www.cancercompass.com/message-board/message/all,7718,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am writing to give a slightly different perspective to the newbies who are looking at this board every week. I am four weeks into radiation and chemo treatment of tonsil cancer, squamous cell, that spread to a nearby lymph node. Mine was generally described as Stage III, T2-3,N1,M0. I consulted a surgeon at the Mayo Clinic here in Scottsdale, who would have performed a laser laproscopic procedure on the primary site in the throat (most of which was removed by the tonsillectomy that led to the initial diagnosis) and them conventional removal of lymphatic nodes and connecting tissue in that side of the neck. But I chose to go the radiation/chemo route. (I may still need salvage surgery, and I might have needed radiation after the laser surgery had I gone that route.) Many of the people on this discussion are not very clear about their treatment details. I am getting radiation via a Tomotherapy machine, that delivers an X-ray beam of varying shape and intensity to several targets in my neck (including lymphatic areas on the other side) as the beam rotates around me in a complex helical pattern. This technology was developed at the University of Wisconsin, and I think more than one company is making the machines, but they are not commonly available yet. The point of the varying intensity and shape and angle of beam is to maximize the radiation in the important masses while minimizing the effect on salivary glands, teeth and jaw, inside of throat, and outer skin. I think that IMRT machines vary the intensity, but don't necessarily vary the shape and angle of the beam in as complex of a pattern. My treatment takes 20-30 minutes per day, and about 7:30 minutes of that is radiation. In addition I am getting a high dose of Cisplatin once every three weeks, 300 mg I think. I get this intravenously over a 9-10 hour period, preceded and followed by 2 liters of saline solution, which has the efect of minimizing side effects. They also have me taking Emend that day and the next two days, and I have some other nausea-preventative meds as needed. The result of these procedures, after four weeks, is that I have no significant nausea, never vomited, can still swallow solid food, slight reddening of the skin around the neck, and as yet minimal hair thinning. No weight loss as yet, either. My doctor has given me a script for a mouthwash that substantially eleiminates throat pain. The only serious issue is loss of taste, or more precisely, everything tastes metallic/chalky, and some dry mouth. Now I am not suggesting this could be true for anyone else, nor am I implying my side effects won't get worse before it is all done. People with different tumors (size, location, etc.) would necessarily need different treatment plans, which could involve more radiation to sensitive areas, and not everyone can tolerate chemo. I am otherwise healthy, 58 years old, slightly overweight but have been exercising regularly with a trainer for 18 months. I continue to see him. I am just posting to say that not everyone needs a feeding tube implanted before treatment. If your doctor says he wants to wait and see, listen to him. Don't be frightened by what you read of other people's experiences--which is not to deny the validity of those very unpleasant experiences. I am lucky, so far, and you could be as well. My lymph node has shrunk dramatically in size, and they are going to reimage me this coming week because the target areas are smaller. I will follow up weekly, and try to respond to any questions. Good luck and God bless to all. Bbj23 Fri, 10 Nov 2006 00:00:00 GMT Hi Charlotte, I too had a G Tube and used it as my only nutritional source for 5 months. It sounds as though he needs more calories. I know it takes alot of time out of the day using the tube but he might want to supplement the Nutren with some weight gain stuff that you can get at stores that cater to weight lifters. I got some high protein, high calorie mixes there and made milk shakes using whole milk, ice cream, and the mix. I added that to my usual 6 -8 Nutren 1.5s a day. It worked pretty well for me. I lost 30 lbs but most of that happened after the tube was removed and I still had swallowing difficulty. Defjoeb Fri, 17 Nov 2006 00:00:00 GMT  On 11/10/2006 Bbj23 wrote:I am writing to give a slightly different perspective to the newbies who are looking at this board every week. I am four weeks into radiation and chemo treatment of tonsil cancer, squamous cell, that spread to a nearby lymph node. Mine was generally described as Stage III, T2-3,N1,M0. I consulted a surgeon at the Mayo Clinic here in Scottsdale, who would have performed a laser laproscopic procedure on the primary site in the throat (most of which was removed by the tonsillectomy that led to the initial diagnosis) and them conventional removal of lymphatic nodes and connecting tissue in that side of the neck. But I chose to go the radiation/chemo route. (I may still need salvage surgery, and I might have needed radiation after the laser surgery had I gone that route.) Many of the people on this discussion are not very clear about their treatment details. I am getting radiation via a Tomotherapy machine, that delivers an X-ray beam of varying shape and intensity to several targets in my neck (including lymphatic areas on the other side) as the beam rotates around me in a complex helical pattern. This technology was developed at the University of Wisconsin, and I think more than one company is making the machines, but they are not commonly available yet. The point of the varying intensity and shape and angle of beam is to maximize the radiation in the important masses while minimizing the effect on salivary glands, teeth and jaw, inside of throat, and outer skin. I think that IMRT machines vary the intensity, but don't necessarily vary the shape and angle of the beam in as complex of a pattern. My treatment takes 20-30 minutes per day, and about 7:30 minutes of that is radiation. In addition I am getting a high dose of Cisplatin once every three weeks, 300 mg I think. I get this intravenously over a 9-10 hour period, preceded and followed by 2 liters of saline solution, which has the efect of minimizing side effects. They also have me taking Emend that day and the next two days, and I have some other nausea-preventative meds as needed. The result of these procedures, after four weeks, is that I have no significant nausea, never vomited, can still swallow solid food, slight reddening of the skin around the neck, and as yet minimal hair thinning. No weight loss as yet, either. My doctor has given me a script for a mouthwash that substantially eleiminates throat pain. The only serious issue is loss of taste, or more precisely, everything tastes metallic/chalky, and some dry mouth. Now I am not suggesting this could be true for anyone else, nor am I implying my side effects won't get worse before it is all done. People with different tumors (size, location, etc.) would necessarily need different treatment plans, which could involve more radiation to sensitive areas, and not everyone can tolerate chemo. I am otherwise healthy, 58 years old, slightly overweight but have been exercising regularly with a trainer for 18 months. I continue to see him. I am just posting to say that not everyone needs a feeding tube implanted before treatment. If your doctor says he wants to wait and see, listen to him. Don't be frightened by what you read of other people's experiences--which is not to deny the validity of those very unpleasant experiences. I am lucky, so far, and you could be as well. My lymph node has shrunk dramatically in size, and they are going to reimage me this coming week because the target areas are smaller. I will follow up weekly, and try to respond to any questions. Good luck and God bless to all.Hello my name is Lee and I just completed my first week of Rad. and Chemo including having the tube place in the stomach..... What a week.... well I am thankful to have read your post...I also have t been dig with SCC btwn. Stage 3-4.... I am pleased to know you are doing well. I feel extremely tiered and have not eaten much ...Limited nausea. My treatment will go on for 7 weeks..With 3 10hr treatments of chemo and rad. each day...Cisplatin..Is what they are using...I am 52 years old pretty good shape.., and my diet before all this begun was strictly vegan....   Pothast Sun, 24 Dec 2006 00:00:00 GMT