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| Date Entered at Shared Experience: 09/01/2004 |
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THROAT |
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My husband was diagnosed with throat cancer on April 30, 2003. He was told he should get his affairs in order because he had 3-4 weeks left, he was 56. He had no symptoms other than a strange taste in his throat. His treatment options were to have radical surgery which would take half of his throat and his voice box, or chemo and radiation. We opted for radiation and chemo. They began by taking a biopsy, which ended up being nearly all of one tonsil. He could not swollow for several days after that. A week later thay pulled all of his teeth, he was told that if any of his teeth were bad, they would get infrected from the radiation and it could kill him. During this time the tumor in his throat was doubling in size weekly. |
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Cisplastin |
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He had three all day doses of cisplastin. Seven and a half weeks of radiology, five times a week. As he got closer to the end of the radiation and more tissue was being burned it got harder and harder for him to go for the treatment. He got down to three treatments left and said he could not do it any more. He took a week off but did go back and finish. Each time he had chemo it was on a Tuesday, by Saturday he would be in the hospital. The first time for only two days and then they gave him medication to help prevent him from being sick afterwards. The next two times was for seven days each. He ended up having to have a feeding tube inserted in his stomach because he could swollow nothing. His weight went from 186 to 127. He would often sleep 22 out of 24 hours. Our twelve year old son was on summer vacation and spent the entire summer taking care of him while I had to work. I was able to take off a few days now and then when he was really bad or when he was in the hospital. My son and I stayed in the hospital 24/7 except to go home and shower and change clothes. All of his treatments were over by August and we got the good news that they had been able to get all the cancer. |
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He was on the feeding tube until November. Part of his problem was that when they pulled his teeth they put in tempoary plates and during his treatments his gums shrunk and his weight loss made it impossible for the teeth to fit. Also because of the radiation his gums did not heal very fast. The doctors told us that he woudl recover from the treatments and should be back to normal by Christmas time. He changed dentists and was told that it really had not been necessary to have had all his teeth pulled. He had a new set made. It is now a year later his gums are still not completely healed, he can wear his teeth for short periods of time but he can not chew with them. His saliva glands were completely burned out and will not come back making it extremely difficult to swollow. He tried differnet saliva making pills but none worked. He drinks his food - milkshakes made out of 5 scoops of chocolate ice cream, two packages of chocolate instant breakfast and one cup of milk, he has four of these a day. In the mornings I make two packages of instant breakfast, eggbeaters (2) one cup of milk and heat it in the microwave, he drinks this and tries to eat a pancake. Another problem he has is that nothing tastes as it did, so we tried all kinds of things blended in the blender but the taste and appearance would turn him off to even being able to try it. He has got his weight back to 160 but he gets extremely frustrated because he wants to eat. The doctors gave us information sheets on all of his chemo medicines. They told us that he would definately lose all his hair, but he didn't. It thinned a little but not noticiably. They did not say much about the other symptoms and side effects that could happen. The nerve endings in his feet and hands are damaged making it hard for him to walk and hold on to things. His hearing and eyesight have become very poor. He is constantly fatigued, napping a couple of times a day. He is grateful that he is still here, however his quality of life has become very depressing to him. Our son is almost 14 now and there isn't very much he can do with him. Everything tires him so quickly. |
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When he was first diagnosd I immediately went to the internet to find what I could, because they originally only gave him 3-4 weeks we did not feel we had time to consult other doctors or look into alternatives. The first day we were in the cancer doctors office I saw a lady that had a large notebook and it said "Rogers stuff" on it. I immediately went out and bought a 3inch 3 ring binder, dividers etc. I organized it into several categories. Every single piece of paper and information was kept in that book. It went to every appointment and hospital visit. Since my son was the one that usually accompanied my husband, there was a note section where he would write down every thing the doctor said, many times my husband would be dopey and not be able to remember. It had every medication listed, what it was for and when and how much to give. It helped since we were seeing three differnet doctors we could tell them what the other doctors had prescibed and it helped my son if I was at work and my husband had any problems that needed medicating. I would definately reccomend any one just starting out to keep a note book like this, it turned out to be a magnificant help. |
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I am searching for information from any where for what to do now. The doctors have him come in every six months for a check up but they are not addressing his present condition. I am hoping that some one out there has gone through the same recovery problems and has ideas on how to alleviate some of his systems. We tried different medications for the nerve damage but none helped. I have him taking multi vitamins but his fatigue does not go away. |
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