long term side effects of radiation for head/neck cancer

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RE: long term side effects of radiation for head/neck cancer

by cagy2 on Fri Jul 20, 2018 09:44 PM

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Lets just say throat cancer!  The radiation will affect different parts of the throat.  It depends on the way the program is laid out and the expertize. I had tongue and esophageal ( right even with my upper chest bone)  Tongue cancer and tonsil cancer is in the same place and with the same treatment.  Call it what ever you want, to me there is not any difference.  My neck was burned more than when I had tongue cancer, but it is all well now except for stiffness when looking up.  

RE: long term side effects of radiation for head/neck cancer

by Dlynn1210 on Sat Jul 21, 2018 01:26 AM

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On Jul 19, 2018 5:18 AM butler wrote:

gabapentin helps with the pain and cramping.  Stretching, massage and accupresur/acupuncture has also helped some

I am going to ask my doctor about Gabapentin. At least it gives me something that might help. It is becoming more pronounced - the tingling feeling is happening all through the day and stronger. At least there is a pretty chance it is related to the radiation. Thank you for the heads up - what Cancer Compass is all about! Diana

RE: long term side effects of radiation for head/neck cancer

by Shirleyperez on Sat Jul 21, 2018 07:19 PM

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On Jul 20, 2018 8:41 PM Dlynn1210 wrote:

The results definitely depend on a doctor’s expertise in certain procedures no matter what speciality they are practicing. Even though they may do rigid dilations I have never heard of a GI doctor attempting one. I was told the one who did the balloon on me was a very good GI doctor but he did not even suggest doing a rigid dilation. In fact when I asked him after the fact, he simply said “I don’t do them.” The first ENT that I went to in FL described the dangers involved with a dilation (I didn’t know then that there are two different kinds) and said ENTs don’t do them in FL - and then referred me to a GI doctor. Before I could get into the GI doctor I was hospitalized with a brain bleed. The Doctor I now see is a otolaryngologist who did his fellowship in head and neck cancer oncology at Stanford. To say he is good at what he does is putting mildly. My throat was closed to the point I couldn’t eat anything without aspirating - not even noodle soup. The hospital would not give me any food during my 6 days stay so I demanded to be released. I was on an IV for nourishment and getting weaker by the day. Within two days after leaving the hospital I had done my research and found my current doctor. It was two weeks before I could get into see him basically living on soup broth in those 2 weeks. He performed the dilation on Wed and I was eating solid food by the weekend. Going forward he has managed to get the opening a little wider each time - although as I get a ‘little’ older he suggested we do them a little more often. I have ‘older’ friends who needed dilations who have never had cancer or radiation so I guess it goes with getting a little older also. Diana
Who was the dr?

RE: long term side effects of radiation for head/neck cancer

by EDWARD123 on Mon Jul 23, 2018 03:16 AM

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i think we re all in the same boat ,,and its starting to sink ith all of us in it .

RE: long term side effects of radiation for head/neck cancer

by Dlynn1210 on Mon Jul 23, 2018 12:06 PM

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RE: long term side effects of radiation for head/neck cancer

by Shirleyperez on Mon Jul 23, 2018 12:21 PM

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On Jul 23, 2018 3:16 AM EDWARD123 wrote:

i think we re all in the same boat ,,and its starting to sink ith all of us in it .

Instead of getting better, I am getting worse. I was eating soft foods swallowing it down with water. One mo. After treatment. Now 4 months, and I can’t even do that. Has anyone else ever gotten worse instead of better?

RE: long term side effects of radiation for head/neck cancer

by cagy2 on Mon Jul 23, 2018 01:13 PM

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This is normal!!!  It like bumping your leg,  black and blue marks show up later.  Same with radiation. It may close up completely which mine did.  Takes about a year to get back too something of a new normal. Dilations will be required too. Everyone is different as is every dr. and treatment.  Good luck and lean on this board for support.

RE: long term side effects of radiation for head/neck cancer

by Dlynn1210 on Mon Jul 23, 2018 02:27 PM

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On Jul 23, 2018 12:21 PM Shirleyperez wrote:

On Jul 23, 2018 3:16 AM EDWARD123 wrote:

i think we re all in the same boat ,,and its starting to sink ith all of us in it .

Instead of getting better, I am getting worse. I was eating soft foods swallowing it down with water. One mo. After treatment. Now 4 months, and I can’t even do that. Has anyone else ever gotten worse instead of better?

I did get worse and was on a feeding tube for a year post treatment for tonsil cancer.  I went for VitalStim therapy with my Speech Pathologist who also gave me 'exercises' to do.  I was back eating within a short time - baked ham first - the fat content makes it easier to swallow.  I eat dark meat of chicken more than white meat (which was all I ate before treatment) - again because of the fat content.  I have a new normal now and one I follow.  I do need 'rigid' dilations occasionally when swallowing gets difficult once again but overall 11 years post treatment I am still cancer free.  Note what I said about rigid dilations versus balloon dilations - especially for tonsil cancer survivors. 

Diana

RE: long term side effects of radiation for head/neck cancer

by cagy2 on Mon Jul 23, 2018 02:42 PM

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My Dr. uses a balloon only when it is only the stricture muscle that needs stretching

RE: long term side effects of radiation for head/neck cancer

by Dlynn1210 on Mon Jul 23, 2018 03:30 PM

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On Jul 23, 2018 2:42 PM cagy2 wrote:

My Dr. uses a balloon only when it is only the stricture muscle that needs stretching

Cagey - You had cancer in two different locations (tongue and esophagus) than I had (tonsil). I always clarify that I speak from a tonsil cancer survivor’s experience only. Web MD has excellent diagrams showing the tongue, tonsils, and esophageal track (aka a food pipe). https://www.webmd.com/oral-health/picture-of-the-tonsils . The tonsils are in a different location than the tongue and esophagus - although they are close in proximity. I had TOMO radiation which is very precise in targeting the tonsils and avoiding areas in very close proximity. My problem is always at the opening of the base of the tongue and above the esophagus. By the time the tube used in a balloon is inserted - before it is inflated - it is past the area where my constriction is located. The rigid begins with a small tube inserted and a tube with a minute increase in size is inserted over that one. It continues on until the ENT feels it has been stretched enough for that procedure. This is why a balloon may well work on you but had NO affect on me. The GI doctor told my husband just before he did the balloon that I would find I needed a feeding tube and would be on one for life. He came into the surgical room telling the nurses “I am only doing what she wants - not what I know needs to be done. She needs a feeding tube.” Less than a month later Dr. Steininger did a rigid dilation and I was eating within days. No feeding tube! Diana
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