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#16891 01-16-2005 05:49 AM
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I'm sorry i didn't give my diagosis on my last input. I have Nasopharyngeal and started my first week of treatments.I'm having chemotherapy and radiation at the same time. This will go on for 10 weeks, one week on one week off. I've been though my first week.I feel great so far, but i know the worst is to come. I just wondering what to expect. I keep thinking the worst,but hope for the best.
Thanks Scott

#16892 01-16-2005 03:54 PM
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Scott,

Hello, my husband also has Nasopharyngeal Cancer that was diagnosed in October 2001. Boy can we tell you a book full of stuff. Do you mind telling me how ald are you? My husband was 33. He is a white male which is very rare for him to have this. It is common in Asian decendants. After the biopsy the had a port and peg tube put in. Do you have that? He defintely needed these two things. He was very sick from the chemo and was put in the hospital both times. They gave him a chemo pack that was plugged into his port for 10 days at a time twice. The radiation burned him very badley enough to that it closed his throat completely for 18 months. Has your cancer spread to the lymph nodes? He sat at home and watched Emeril on Food Network and cooked for me and our kids even though he couldn't eat. Then he finally had to go to another surgeon in Nashville, TN who opened his throat up. He still gets it opened periodically. He has dry mouth and gluey substance from the saliva glands being dried up from radiation. He constantly carries around a water bottle. The cancer did come back at the two year mark. It was right above the line where they stopped the radiation. They said a cancer cell was laying dormant for two years and started to grown. He found this out because he developed double vision and he is now in the clivis bone near the brain stem. He then did a CPK Radiosurgery. Then it came back and he is now on his 3rd round of chemo and radiation. Please write to me if you need any advice. We have been down a rough road but he has been a big trooper through this. I wish you the best Scott.

Paula

#16893 01-16-2005 04:06 PM
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Paula is right that Nasopharyngeal cancer is common among Asians, particularly along Southern China. There are many new cases every year in the hospital where I was treated. To ease the tension of Scott, this type of cancer is highly treatable. In Hong Kong, the survival rate of such cancer at an early stage is over 90%. For more advanced stage, surgery is not usually recommended but of course side effects from radiation can be serious and may affect hearing. Any way I am not an expert but have come across many more nasopharyngeal cacner patients than tonsil cancer ones in my place.

Karen.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
#16894 01-17-2005 03:07 PM
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Scott:
Just sit back, enjoy the ride, and let God handle the details.


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#16895 01-17-2005 05:15 PM
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This is going to start a ruckus, and I hesitated before posting it. I disagree with Darrell's posting and concept.

Don't just sit back and let things happen to you, trust in your doctors or not. Learn everything that you can, informed people make the best decisions. That means you are not just along for the ride when someone else makes a decision, you are part of the decision making process. You can't be if you are not involved


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#16896 01-17-2005 05:35 PM
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Amen, Brian.

In another topic, Darrell encouraged a young man to continue chewing tobacco, because he knows people who used tobacco for decades and didn't die. Now, he wants Scott to sit back and "enjoy the ride." Well. I took the ride and I can't remember a lot of enjoyment along the way. Thank goodness the Infopop software includes an "ignore" list.

Ken


SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
#16897 01-17-2005 05:51 PM
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One of the drawbacks to a public forum is that anyone gets to say what they want, and there is never a lack of opinions. Luckily on this forum most of them are well founded and come from first hand experience, the kind that really stays with you. Even when we get into it with each other, (and as most of you can remember I am usually the one that gets all the arrows in my back), it is in the spirit of getting the best information out possible. The disagreements pass, but are allowed to stand if no one is getting hurt by the actual information itself in the heated debate. One of the good things about being the controller of the forum, is that I own the delete button. Unfortunately one of my daily chores is to look at the postings that are put on over night (I only have time for the blatant ones) and delete the charlatans trying to get people to go to Mexico for treatment, take some herbal cure all etc. etc., all in the name of preying on those who have little hope. But the button works just as well in lesser instances as well if you look around. If anyone ever feels there is a post on this board that is going to potentially mislead someone or worse, hurt someone


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#16898 01-18-2005 04:02 AM
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Ken,

Don't take me for a peacemaker here, It is not my nature. I checked the tobacco thread and Darrell was not involved. This is a new thread and although I, like Brian, don't care for the advice, I don't think Darrell intended for Scott to chew tobacco while he enjoyed the ride. I think he was trying to calm Scott's fears.

Glenn

#16899 01-18-2005 05:23 AM
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Glenn,

Darrell's post has been removed from the "dipping snuff" thread. My reaction was angry, but I don't have a delete button. Brian does, and I think he used it appropriately. Maybe Darrell was having a bad day. Maybe I was.

Bottom line, I hope Scott picks up the sword and fights the beast every step of the way. Taking an active role in the process helps conquer the fear.

Ken


SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
#16900 01-18-2005 09:06 AM
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Ken,

No argument here. I guess I just could not fathom anyone writing anything down-playing tobacco use here, and the post was removed before I posted.

Glenn

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