One patient with glioblastoma still alive nine years later
by ScaredAgain on Tue Jan 04, 2011 09:22 PM
I am 52 years old and just lost my beautiful young wife(38) to cervex cancer 28 Sep 2010, we only found out she had cancer 28 May 2010. I did the Hospice deal and spent 2 months by her side. Thankful i did. Now I have just been told I have Squamous cell cancer of the epiglottis. Luckly I just received my PET scan results today and it appears it is just the epiglottis. Like that isn't enough. I am scared about my treatment because I live alone, how much help will I need during treatment? I will be getting Chemo and Radiation Five times a week for 8 weeks no surgery. How long can i expect to continue work and drive myself to appointments?
by kimmy326 on Fri Jan 20, 2012 01:48 AM
Hello, I had the same cancer same diagnosis I was only stage one epiglottis cancerat age 37 I did have surgery and 35 radiation treaments. I did well for about the first 10-15 treatments. Then it started to kick my butt! So I would say I had someone driving me to my radiation treatments around the 6th week due to all the pain meds I was on. I lost around 32 ponds and could only eat liquids for around 2months. I did not work past that. I would say have someone you can call to help you out here and there, but I pretty much took care of myself. I did go into the hospital on my last treatment for 5 days due to I was dehydrated. I am almost 3 years out and so far cancer free! Keep your head up and pray often! Best of luck to you! I will keep you in my prayers. Take care!!!
by kimmy326 on Fri Jan 20, 2012 01:49 AM
Hello, I had the same cancer same diagnosis I was only stage one epiglottis cancer at age 37 I did have surgery and 35 radiation treaments. I did well for about the first 10-15 treatments. Then it started to kick my butt! So I would say I had someone driving me to my radiation treatments around the 6th week due to all the pain meds I was on. I lost around 32 ponds and could only eat liquids for around 2months. I did not work past that. I would say have someone you can call to help you out here and there, but I pretty much took care of myself. I did go into the hospital on my last treatment for 5 days due to I was dehydrated. I am almost 3 years out and so far cancer free! Keep your head up and pray often! Best of luck to you! I will keep you in my prayers. Take care!!!
by ScaredAgain on Wed Jan 25, 2012 06:23 PM
Thanks for your encouragement:) I have completed my treatments and have been told everything looks great, still doing monthly follow ups. I lost 100lbs. But I do feel better than I have for a long long time. Just wish my wife was here to see the new me:( Thanks again.
by kimmy326 on Wed Jan 25, 2012 10:34 PM
I,m glad you are doing fine. I was wondering I finished my treatments October of 2009 and then 5 months later lost my voice Feb of 2010 all I could do is whisper and now I got somewhat of a voice I sound very hoarse ppeople always ask me if I'm sick or do I have layrngistis. I have had 2 surgeries to try to correct this but still the same voice my ENT tells me its all the scar tissue on my vocal folds. Have you had any problems with your voice? Also I sometimes get pain that goes from my left ear down into like the left side of my throat. My ENT tells me this is a muscle due to me straining to talk it gets painful? I don't know do you have any of these problems?
Thanks , God Bless
by ScaredAgain on Thu Jan 26, 2012 12:21 AM
I finished my treatment April 2011, and still have voice issues. My voice has good days and bad. My ENT says my vocal cords are going to be very fragile and any sinus drain or slightest cold and i can hardly talk. I did get a slight infection that made my throat painful but once that was cleared up it doesn't hurt. When i speak sometimes I do sound hoarse and people comment, I just tell them not to worry It hurts their ears more than my throat, after cancer i am just glad to talk at all. My worst side effect is the morning when i wake up, i need to spit ALOT to clear the white junk from my throat.
by PamelaJ1 on Wed Mar 21, 2012 08:16 PM
I was diagnosed with same cancer, same place. I finished treatment June 2011, and still have voice issues. Sometimes it works awesome and I sound close to normal, and then the next day I sound like a frog or else my throat is so sore I have to whisper so as not to irritate my throat and make myself cough which is not good. I have been suffering from a huge amount of phlem the last month or so and it has made everything seem worse than usual. Have any of you had any problems with your thyroid? I have started to get extremely fatiqued lately, the no motivation, I am not moving feeling.
by ScaredAgain on Fri Mar 23, 2012 01:41 PM
Haven't had any issues with my thyroid, The phlem thing I can relate to. The phlem is really white and seems worse with the weather" spring" and then my voice follows. I found to always try and speak with a normal tone and not to strain or talk loud seems to help. Sorry about the fatigued issue, make sure you are eating the right type food.
by PamelaJ1 on Fri Mar 23, 2012 05:34 PM
Yes the phlem is really white and sometimes extremely thick and it started as soon as the weather warmed up, I had no problems this last winter, except when I caught a cold from my husband. My voice is totally gone now I am back to whispering yet again. But my throat is very sore, I just seen my ENT and he didnt seem to notice anything with my throat, but he did say my vocal cords seem to have gotten alittle stiff and are not touching anymore, so he said we will watch it for a few more checkups and if it dosen't fix it self we will go from there.
by PamelaJ1 on Fri Mar 23, 2012 05:37 PM
This post could have been written by me as those are the same problems I am having now, except I have not had any surgeries yet. I was hoping to avoid that but I am thinking this may have to happen in order to have a voice of anything beyond a whisper.
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