What happened with this site?

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What happened with this site?

by Marmaduke on Wed Nov 20, 2019 03:00 PM

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I agree with others about the lack of comments now. Such a shame. It was very helpful and comforting to communicate with others like myself. I’ll try the other site Susan posted. Good luck to all.. Donna

RE: What happened with this site?

by Proxielocks on Tue Dec 03, 2019 05:34 AM

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It has been awhile since I have been on here. My husband had stage 4 head/neck cancer. This was back in December 2009 just before Christmas when he was diagnosed with it. I am sadden because it changes your life and your relationship with with your loved one over the years. I believe it really changes them because of it. My husband cannot talk, he still feeds through a feeding tube. This was a man who loved to eat. A man who was healthly, who ran 9 miles a day and ate healthy food. However, over the years he has gotton worst. He once weighted 172 and now his weight is about 115 now. He cannot talk because his tongue will not come out for him to be able to get the words out. It has been a long journey with his condition that just seems to get worst. He get Aspraition pneumonia very easly now. He is always so cold. One reason is because of of his weight. What do you do? I do alot of praying for him. Why did this have to happen to him/to us? Many, many tears. He once had beautiful teeth. He now has just rotted teeth that has broken off to stubs. And nothing they can do. No dentist wants to do anything because he is a LIBILITY for them. He even went to Clear Choice and nothibg they could do. Everyone is afraid that he could die  working on him. Now his teeth has all rotted and most have broken off. However, the roots are still in there. Sad everytime he shows me a picece that has broken off. He goes and puts them in his collection that he keeps in his medicine cabinet. It is sad to watch him have to go through all this. I know the day is going to come, and I am not prepared for it. I don't even want to think about it. The Aspraition pneumonia is what worries me. He is always so cold, can't seem to get warm. I have done a lot of praying over the years. However, God is in control and when it is our time to go then that will be when he calls us home and not before that time. I am sorry to say my husband is not a believer in GOD. However, I am and it is up to God when he says it is his time to go and a before then. I pray that there will be a cure for Head,neck cancer. And for all other cancers. Prayers and God Bless all that are dealing with THIS NASTY BEAST WE CALL CANCER.

Patty

RE: What happened with this site?

by Sdurnell on Sun Dec 08, 2019 09:15 PM

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Patty,

I am so sorry about your husband and that no one is willing to help him.  I was diagnosed the monthe before he was, and am doing fine now.  This think is so unpredictable.  

I have a few thoughts.  Gaining weight would really help him probably.  Is he using a formula in his tube?  If so, he might be able to get one that has more calories in it to help with the weight.  Or if he's using a product like Ensure, there are some high-calorie versions of these too.  See if he can meet with a dietitian (make sure s/he is a Registered Dietitian) about it.  His ENT or cancer center can probably refer you to one.

Have any dentists suggested using hyperbaric oxygen treatments and then pullling teeth?  This is a treatment that is used for all kinds of reasons, some very experiemental, but for dental work after radiation it is so proven that insurance companies will pay for it.  See if you can find a cancer dentist (again, try at the cancer center for a referral) or mabye an oral surgeon with experience with head and neck cancer patients.  I was advised to get all my teeth pulled before radiation and am glad I did.

And, while there is no cure for us, there is something better than a cure for this cancer.  It's the HPV vaccine, and it will prevent HPV-related cancers, including cervical and many head and neck cancers.  I am an advocate for this vaccine to be given to young teens everywhere;  it has been proven to be successful for cervical cancer, and there are studies going on now about H&N cancer.

Best of luck to you and your husband.

Susan

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