What happened with this site?

8 Posts | Page(s): 1 

What happened with this site?

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

Quote | Reply
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

Quote | Reply

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

Quote | Reply

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

RE: What happened with this site?

by Marmaduke on Sat Dec 14, 2019 06:13 PM

Quote | Reply
Nancy: my heart aches for you both. I’m on this track your husband is on. I was diagnosed in 2015 with head and neck cancer. It’s a heck of a treatment and I was hospitalized the last week of treatment and placed on a feeding tube as I had lost nearly 60 lbs. had both 37 radiation and 6 chemo. Fast forward to today. I’m still on a feeding tube as my swallowing only got worse. Just got out the hospital after 6 days to get another tube put in as it popped out and had to be replaced. I’ve had a couple injections into my right dead vocal chord which props it up against the good Chord which allows me to speak again for 5-6 months. It does wear away and I'm waiting to see what’s next if anything. Eating mostly by tube now since this?? Throat is getting tighter so may look into the dialation option to open it up as I can’t swallow my spit now. Many many procedures which included hyperbaric dives 60. I talked to people who were 10-15 years out that needed dental work who got hyperbaric treatment before snd after the work and did fine with the healing process. So far, I’ve not lost any teeth, but time will tell. Not sure if you said how old your husband is Nancy. I’m 71 and have several other diseases to deal with as some our age do. It’s a tough road to hoe, no doubt. It took me a while to accept things weren’t getting better, but some times worse over time. Personally, I try to stay positive, stay in the word daily and enjoy the life I’ve got left. I’m a Christian so I lean heavily on Him a lot thanking him every day for giving me the strength to fight through the tough stuff everyday. I’ll pray for you and your husband. Glad you shared on here and if you would like to private message me just to talk, feel free. I’m not quite at the 5 year mark so I’m behind your husband in the progression of this awful monster. Hoping we all can endure until they find more solutions to our maladies from our treatment. God Bless all those who are on this board. Donna

RE: What happened with this site?

by Marmaduke on Sat Dec 14, 2019 06:14 PM

Quote | Reply
Sorry Patti, I was mistaken calling you Nancy ??

RE: What happened with this site?

by Fiona2020 on Wed Dec 18, 2019 07:44 PM

Quote | Reply

i need patient level experience/info for chemo and see little discussion on urachal adenocarcinoma tx. Who knows of other patient / real experience sites are available for my rare cancer?

RE: What happened with this site?

by Sdurnell on Thu Dec 19, 2019 01:15 AM

Quote | Reply

Hi Fiona.

This is a site for head and neck cancer, primarily squamous cell carcinoma.  You might try the bladder cancer section of this site, or you could go to Inspire and try there.

Best of luck to you.

Susan

RE: What happened with this site?

by johnsonly1 on Mon Jan 20, 2020 02:51 PM

Quote | Reply

Good morning Marmaduke, my husband was diagnosed in April of 2015 and life has never been the same. We knew swallowing would be a problem that would most likely get worse over time - just thought we would have more time. While in treatment my husband's esophagus completely closed up and required surgery to open it back up.  Since then he has had to have his throat stretched every 6 months or so. Last week he had it done again, however we were told that they could no longer stretch it as much as they have in the past. It only seemed to have helped very little...he is able to swallow things like pudding, apple sauce ...etc. This has made him very depressed. He told me he would rather starve to death than to be on a feeding tube the rest of his life. I am at a loss as to how to help him from this point. We are born again Christians and totally depend and trust the Lord...but it is so discouraging to watch John suffer through eating. I am beginning to research to see if there are any other options for him - anything that may help him eat, at least a little longer. And if that is not enough to deal with, last month he had to have neck surgery because the radation has caused damage to the bones...  When he was first diagnosed in 2015 we asked what the possible long term side effects could we expect - we were told there was no way of telling since everyone is different. But as I read the post on here I see that the majority all suffer the same fates....just infuriating that we didn't get more up-front facts. Sure would have made all that we are dealing with a little eaiser if we would have had a heads up. Thanks for allowing me to vent. 

8 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.