But whether that's good or bad isn't yet clear
by brittlw on Sat Jan 05, 2008 12:00 AM
by Driller on Sun Apr 06, 2008 12:00 AM
I have been cancer free since fall of 2003. I had cancer of the parafin sinus. I have always had to deal with some swallowing issues. As of last May it has gotten worse. March 7, 2008 I had an emergency trache placed and a feeding tube. I had pneumonia from aspirating food into my lungs and my breathing had become very labored. Also, my epiglottis is severely scarred from radiation therapy in 2003. The epiglottis is the cause for the problem with aspirating and difficulty breathing. I am in the process of being evaluated by ENT doctor in Denver, Co. I have no news as to a solution at this time.
by brittlw on Wed Apr 09, 2008 12:00 AM
by pilotj on Wed Aug 12, 2009 12:00 AM
by brittlw on Thu Aug 13, 2009 12:00 AM
Sorry to say there have been no changes. If anything he is worse now than a year ago. The scar tissue is just terrible. He had his esophagus stretched July 21 and is having it done again on Aug 18. He has been to several doctors in different states including Wakeforest Hospital, Vanderbilt, and MD Anderson and everyone tells him the same thing. Short of rebuilding his throat and removing his voice box and living with a trach the rest of his life there is nothing that can be done to "fix" the problem. We just keep praying for a miracle and praying for technology to come up with a fix. People in general have no idea how this affects a person and a family's life not being able to swallow. Little and big things are affected. Family gatherings, going out to eat for socializing, church functions....food is a huge part of our lives and when you can't swallow it takes alot of enjoyment out of life for him and for those of us who love him.He is still cancer free praise God ....we can't lose sight of that, but his life and ours is forever changed!! Hope your Dad gets along well and gets relief of his own.
by blouise on Thu Sep 03, 2009 12:00 AM
by bmoore on Mon Oct 26, 2009 01:43 AM
I have been looking for someone else with the same problems my husband has... We understand how it feels...he was hoping to be eating by Thanksgiving. What is this all about? we are new to this problem. Please reply and talk to my husband or me. Just to -maybe- put our heads together on this matter.
by netcompute on Wed Dec 16, 2009 05:11 PM
I had radiation and chemo also, since early 2007, i have not been able to eat or drink since. it appears due to the epiglottis being scarred. I am trying to decide whether i should have it removed altogether or shortened. The epiglottis forms a pocket in my throat that causes the food/drink to get stuck there, sometimes i aspirate, other times the food will sit there for up to 12 hours before i cough it out.
its amazing at how little the doctors know about this. I to was told that my cancer of the neck was 100% curable. I was eatting fine when they removed the cancer, but because they could not determine the primary, they performed radiation on my entire neck, killing my saliverty glands and everything else. I feel like putting those doctors under the same treatment, this is not a cure, but a form of torture. This is not a life, i am very frustrated at the lack of care and knowledge. I have an appointment at Mass General tomorrow and will insist on solutions.
by brittlw on Thu Dec 17, 2009 11:06 PM
My Dad's condition is still the same. He goes every 3 to 4 months for a throat dilation but it doesn't really solve anything. I am like all of you...just uterlly AMAZED at the lack of knowledge of this condition and appalled that they continue to do treatments in this manner with these results. My Dad's life and ours has been forever changed. People say " At least he is cancer free and still here with you" and yes praise God he is, but the quality of life that he has been given is not a fun life. Food is all encompasing.... fellowship, family gatherings, taking a sip of water when you are boiling hot. Everything in our society focuses around food and the enjoyment of food. Holidays are especially tough on him and the rest of us as well. I feel for all of you, especially this time of year!! Hopefully a miracle can be found- I pray it will!!
by lovingspouse4 on Thu Dec 17, 2009 11:27 PM
Reading all these posts has made me very, very fearful. Do you all feel that the ROs were at fault? I heard the Radiology part is extremely complicated and should be done by someone very experienced in HN cancers. How can you know?
My heart goes out to all of you who have suffered so.
My husband is starting Chemoradiation THerapy right after Christmas. He is feeling wonderful, eating more and various foods every day ~ but he still has a least one enlarged cancerous node in his neck, even after "successful surgery." So I don't see that we have a choice. Just as you didn't, except in retrospect.
I'll be praying for all of you, both caregivers and patients. Being a caregiver myself, I'm intimately aware of the pain in watching a loved one suffer. the "what ifs". second guessing everything we do (or fail to do.)
May God bless you with his peace, the peace He gives in the middle of trials. Ask Him for it, He will in no way turn you away!
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