One patient with glioblastoma still alive nine years later
by B_Positive on Tue Sep 01, 2009 12:00 AM
I am trying to get some real perspective on this subject. I had surgery to remove my right tonsil and lymph nodes in the right neck June 08'. I had 34 sessions of radiation and three rounds of chemo. The last of my treatments ended 10-23-08. I was told at that time " you should be able to swallow in 2-3 weeks". I have been on the G-tube since mid September 08'. I did a FEES test 3 weeks ago and the throat still is swollen. When I ask my doctors how much longer, I get ask, your ENT/ Radiologist/ Speak Therapist. I have asked them all and they all refer to each other. I am going on a year with out eating. I can taste everything perfectly. I am extremely frustrated and wonder if anyone else has faced this. Good or bad, I just want to know.
Thank you all
by PopPop on Tue Sep 01, 2009 12:00 AM
I'm not sure if this had been mentioned before or not, so I will bring it up as a question. Have you talked to anyone about Lymphadema, swelling of the face and neck areas ?
I know after I had my neck dissection on the right side and 1/3 of my tongue removed, 30 treatments of Radaition. The Doctors were concerned on how my healing was going more than the swelling. It was several months afterwards that I really complained about the stiffness and soreness of my face and neck that the Radiation Oncologist sent me to the Cancer Physical Therapist.
She taught me how to get the Lymphnode system flowing and that helped with the swelling which was causing my neck to be tight and my throat to actually be smaller on the inside. So, swallowing was difficult for me. Once the swelling went down, I was able to eat better. Still no saliva, but it is better.
My Best to You and Everyone Here
by Defjoeb on Wed Sep 02, 2009 12:00 AM
After I was done with treatment I was sent to the Speech Pathologist for a swallow test to see if they could remove my PEG. I was having some difficulty swallowing and the fluoroscope showed 2 areas of swelling in the throat. They called them bumps. They told me they would probably go away but sometimes the radiation will actually change a person's physiology and they might not go away. Well, 3.5 + years later and they haven't gone away. I guess I'm one of the lucky folks who's physiology has changed. This may or may not be the case with you but I just wanted to relay my experience. I still have some swallowing issues and have developed very strong and powerful jaw muscles from the excessive chewing I must do to get anything down. I mean, I chew soup. I hope your swelling goes away and you can resume normal eating. Regular civilians don't know what a gift that is.
by FaithHL on Wed Sep 02, 2009 12:00 AM
I don't know if this would apply in your situation, but I thought I'd pass along the information.
After finishing my treatment, I noticed my neck would be swollen in the morning and my tongue/throat were also a little swollen from my treatment. Someone mentioned to find message therapist that does Lymphathic message. It helps the body drain the edema from the chemo and radiation. I found a therapist, but haven't made an appointment as yet.
by visionati on Thu Sep 03, 2009 12:00 AM
I was diagnosed in Nov 08 and did the surgery (tonsil, tongue, neck and also a neck dissection,ful radiation and 8chemo treatments....under my chin is now very swollen and my neck is thivcker front to back. I have no real saliva if I eat nything that has a dry texture. My surgeon said, no worries but I am still so stiff and it hurts when i swallow, my chemo radiation guy says the radiation destroys the ellastic properties of the cells in this area and it may or may not get better. My suggestion is always the same, question everything you feel, and do not stop with a non - answer...keep asking and pushing till you do get an answer. You are blessed with perfect insight now, your BS awareness level should be very high, challenge the doctors to PROVE their is no problem, if there isn't good for all, if they find something then you where proactive.
by blouise on Thu Sep 03, 2009 12:00 AM
by Chasman on Thu Sep 03, 2009 12:00 AM
On 9/3/2009 blouise wrote:My husband was treated for stage 4 SCC diagnosed in October 2004. He had the standard 36 radiation and 6 weeks of chemo. He finished treatment in January 2005.He has not eaten by mouth since Dec 2004. He has a PEG. He has had 14 dilations to the esophagus and throat. He has had 2 tracheotomies(tube in throat to breathe) both have been were removed. His throat was basically "fried" by the radiation he received. He has non stop mucous production and his voice has been permanently weakened. We were reassured the side effects of treatment were temporary. He cannot swallow his own spit. Has anyone had this experience this? Is there any hope for us? We were told if he even tried to swallow he would choke to death because he has no epiglottis as it was severley damaged by the radiation (that is the piece that covers your airway when you eat so food does not go into the lung).
by B_Positive on Thu Sep 03, 2009 12:00 AM
by blouise on Wed Sep 16, 2009 12:00 AM
by blouise on Sat Sep 19, 2009 12:00 AM
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