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sister58's Message Board Messages

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Hi, Patty. My name is Beverly. I have been caregiver for my older brother off and on since 2001. His started with tonsillar cancer then. Surgery to remove his tonsils wasn't enough, and one year later he had massive doses of radiation. Since then he has had horrible side effects from the radiation. Vocal chord paralysis, brachial nerve plexopathy, which has caused his right arm to be paralyzed. In May of last year another tumor was found at the base of his tongue. They removed his tongue and what was left of the left side if his throat. They removed the muscle from his left chest to graft to his throat and make a "tongue". In June of this year they found another tumor at the back of his throat just in front of the spine. They removed his larynx and the top of his esophagus. They removed the muscle from his left upper leg to make what is called a flap, and to graft the back of his throat. He isn't married, and has no children, so I have been his caregiver thru these major surgeries, and take care of all his business for him. He has had a feeding tube for 2 1/2 years. Now he has to be ventilated at night because his breathing stops. I empathize with you and your pain. It is hard to watch someone you love go thru something so traumatic and painful. I know that you are hurting so much inside and can't share it with the one person you have always shared your pain with. I am lucky to still have my husband who helps me a lot. I am sorry your husband has had to go thru this horror, but I am sorry that you have to. No one understands what it is to be a caregiver until they have walked that path. My prayers are with you both. If you ever just need to vent......... Beverly
James went to UT Southwestern, Zales Lipshy hospital, (which is closing soon, but a new one is already open, and preparing for patients.). Dr. Larry Myers did his surgery last May, and in April, this year. DR. Gordon did the reconstruction this year. I'm sorry, I can't remember Dr. Gordon's first name, but he works closely with Dr. Myers. I can't say enough about these doctors and their residents. The staff at the hospital is also excellent. We were there for two weeks, and the care James received was excellent. That being said, I hope you never have to go thru this. Beverly
Hi, Susan. You are so right about each case being different. My brother did well for about 12 years after massive doses of radiation. In about 2012 everything started to fall apart. His right arm began to weaken. His voice became very raspy, and he began to have trouble swallowing, and would aspirated quite often. Unfortunately, we knew nothing about dilation, and his doctor (who we have since dismissed) did not tell us about this procedure. He has since lost the use of his right arm, and was put on peg tube. In 2015 he had a tracheotomy. In May of last year he had laryngectomy and his tongue removed because of a new tumor. In April this year he had pharyngectomy. The doctor removed about 1 inch of esophagus and rebuilt it with muscle from his thigh. Fortunately, he is healing well. We pray that this will be his last battle with this horrible disease, but don't walk around with blinders on either. Ever cautious, and checking for anything abnormal. I wish we had known more back in 2001. My first recommendation to him would have been to search out another doctor. If I could give anyone who his facing this kind of cancer some advice, it would be ALWAYS GET A SECOND OPININION FROM SOMEONE WHO HAS DEALT WITH THIS BEFORE. As always my prayers are with you all.
My brother had massive radiation in 2001. Has already gone thru what you are going thru now, and more. If we can help with info let us know.
Hi! cootercoco, I too am a caregiver to a survivor of head and neck cancer. My brother is 65 years old. Since 2001, he has had 4 major surgeries. Removal of tonsils due to tonsillar cancer in 2000. In 2001 a lump appeared on the right side of his neck. He underwent 31 days of very aggressive radiation treatment. For many years he was cancer free and doing very well. In about 2011 he began to notice numbness and tingling in his right arm. He also began to have trouble swallowing, and quite often would aspirate. After many visits to many different doctors, he was diagnosed by a sports Dr. With brachial nerve plexopathy and a paralyzed vocal chord. Both of these were direct results of the radiation treatment. These continued to deteriorate until he lost most of the use of his right arm, and had to have a tracheotomy. That was in 2016. In June of 2017 he had to have a complete laryngectomy, and removal of his tongue due to a new tumor. They removed a large piece of chest muscle to rebuild the back of his throat, and build a "tongue". He recovered very quickly and was living by himself and caring for himself, mostly. In April of this year they found another cancerous lesion on the back of his throat. This time they removed about an inch of his esophagus and took a large piece of muscle from his right upper thigh to do reconstruction. He is healing well, and back home with me checking on him often. Luckily , he lives 3 doors down from me. I also have had my mother living with me for a year. Being a caregiver is difficult. I never know just how far to go before I am considered " hovering ". James is non-verbal, so I have to be very careful so not to make him feel helpless, but still be aware of his needs. It always helps to talk to someone who has been there, and yet I truly wish there was no one. I hate that your husband is going thru this. But, my prayers are with you.
Everyone's experience s different. I am here to ask for prayers for my brother, who I have shared a lot about on this sight. He was just diagnosed with his 4th bout with this disease. We go to Dallas, Monday to find out how bad, and treatment options. He just had Laryngectomy, and his tongue removed last June. Please pray for him. As always, my prayers are with you all.
Hey, Ron. My brother had tonsillar cancer in 2001 (?). He has had a couple of bouts since then. The most recent was last June. They removed his larynx and tongue. Good news is he healed really fast, got back on his feet, and gained his weight and strength back. About 6 years ago, again (?), he began to have sharp pain in his neck and shoulder on surgery side. Many, many Dr. visits later, a sports Dr. diagnosed him with brachial nerve plexopothy. He said he had only seen one other case in his years of practice. Unfortunately, James lost the use of his right arm, and still has the pain and severe nerve tingling on that side. They have found no treatment. I certainly am not saying this is your problem, but it can't hurt to ask your doctor. James's problem was caused massive radiation treatment. He has had lifetime max radiation. His recent pet scan showed he was cancer free, but at his appointment with his surgeon this week, they found a small nodule in the back of his throat. Removed it for biopsy. We are praying it will come back clean. Keep the faith. Beverly
Dear Gerry, what a beautiful story. I am sorry you had to deal with this horrible disease, but your story gives hope to those who are going through it now. James, too is one of the long term survivors, from the era when radical treatment left long term, unknown effects. His right arm is paralyzed, he is on a feeding tube, has had a complete laryngectomy, and his tongue removed. He too is still plopping around this good earth. He has never once asked why this had to happen to him. He has with great dignity accepted that it did, and moved on. I am extremely proud of him, and now of you. It was a joy to hear from you. You remind us all that there is always hope. May God continue to bless you. I would love to hear from you again. As always, my prayers are with you all. Beverly
Hi, Marmaduke; The fact that you are on this sight, seeking, and giving help, proves that you are amazing as well. I have come to realize that few of us end up staying on the path we built for ourselves in our younger days. We all reach those nasty crossroads and just have to trust God to lead us down the correct road. No matter what it is that interferes with our plans, we never go back " to how we once were". Let's just hope and pray that we come out better in the end. Keep sharing your story, and encouraging others. That may be God's gift to you. Remember to laugh, even when it is difficult. I love hearing from everyone on this sight. Each of you are amazing people. As always, my prayers are with each of you. Beverly
Hi, Donna You couldn't be more correct. This is a horrible disease. I have been amazed watching my brother fight this since 01, and reading the messages of courage and encouragement on this sight. So many strong people, who are willing to share their experiences. I believe their experiences may give someone the courage to keep fighting. James also had the paralyzed vocal chord. A result of the radiation therapy. I think they over radiated James, but in 01 they didn't know what they know now. He had to have all of his teeth pulled before they would start treatment. At the end of treatment he had 3rd degree burns from mid-ear to mid-chest, front and back. About 5 years ago he was going to have dental implants, and was told he would have to have hyperbaric treatments beforehand. When the dentist consulted with his oncologist he found out that the amount of radiation was so high that even the hyperbaric treatments wouldn't help. James is truly an amazing person. He takes everything in stride, always prepared for the next step. I believe attitude is important in healing. Just keep adjusting those sails and stay the course. And, if you ever just want to talk I'm here. When I think of all you guys I have met on this sight, and James, I think of the verse: "I FOUGHT THE GOOD FIGHT. I STAYED THE COURSE. I FINISHED THE RACE." The fight in all of you amazes me. You are strong, resilient, and a blessing to everyone you come in contact with. As always, my prayers are with you all. Beverly
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About sister58

Caregiver
Head and Neck Cancer
After Treatment, Cancer Nutrition, Diet, Emotional Support, Radiation

My brother James was diagnosed with tonsil cancer about 16 years ago. He did 31 days of intense radiation. He had 3rd degree burns when treatment ended. He went thru all the pain without a single complaint. He was cancer free until 2014 when it returned. Since then things have deteriorated. He has a paralyzed vocal chord. Brachial nerve damage which has caused paralysis of his right arm. His airway is closing, and he has very little voice left. He is fed via peg tube because of aspiration. But, he hangs in there, and I am very proud of him I have become his caregiver, his voice, and his right arm.

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