long term side effects of radiation for head/neck cancer

318 Posts | Page(s): Prev 12...29 30 31 32  Next 

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

by Dlynn1210 on Wed Aug 01, 2018 12:23 PM

Quote | Reply

On Aug 01, 2018 9:43 AM MDyogi wrote:

On Aug 01, 2018 3:51 AM Sdurnell wrote:

Dilations were a miracle cure for me.  Of course, not a cure for everything, but they got me eating and drinking again, which is pretty darn good even if I can't eat everything everyone else can.

I can put away ice cream as well as anyone!

Best of luck to you.

Susan

My husband's having a dilation for the first time in two weeks.  What should we expect?  Do they hurt and are they dangerous at all?  I'm rather confident about his doctor being good at this but it does seem like a great unknown. 

There are two types of dilations - rigid and balloon. Do you know what kind of dilation your husband is having? A balloon is a tube positioned down the throat and inflated once it is inserted. A rigid involves one tube inserted and then another inserted directly over that tube with another over that tube until the ENT gets the opening stretched to where he wants it. I had two rigid dilations in IL by an ENT that were hugely successful and then I had a balloon dilations in FL by a GI doctor that had NO affect on my swallowing. Only then, 7 years post treatment, did I learn that there are two different types of dilations after I questioned why 2 were successful but this one had no affect. Three weeks after leaving the hospital I found an ENT who did his fellowship in head and neck cancer oncology who did a rigid dilation on a Wed and I was eating ‘meat’ by the weekend. Since then I have had two rigid dilations in FL by my ENT and both were very successful. Dilations are a day procedure with no serious pain involved. The rigid dilations must be done by someone experienced in them because there is a slight danger involved with tearing as the rigid tubes are inserted. A balloon dilation does not carry the same risk but if it does not work there is no gain either. Diana

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

by MERCKX5TOURS on Wed Aug 01, 2018 01:55 PM

Quote | Reply
Hi all HPV tonsil radiation finished in Dec, 8 months ago. All was going fine until July when I really noticed mobility issues with jaw opening, then caught a nasty viral infection from a co worker, and jus last week watched a mysterious “ crater” appear on the spot where I had radiation. Dr did another scope and said all looked normal and clear. Seems to think, and what I e seen from older posts here, a necrosis of sorts where the tissue just doesn’t get blood supply anymore and simply dies off. Of course, everything you put in your mouth has to come in contact with this area, and it makes me feel like I’ve taken 2 steps backwards. Anyone else have the strange mouth sores, or craters? Reading tells me that they are a long time to heal, again, getting used to the new “normal” is physically and mentally exhausting, Thanks

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

by NJM01 on Tue Aug 07, 2018 11:34 AM

Quote | Reply
Hi Merck, I finished treatment in September last year and if it gives you any peace of mind, I still get sensitive areas in my throat and little sores that feel like ulcers. The scar tissue is also an irritant when I swallow and a constant reminder of what I had and went through. The mind games are a challenge but I stay positive by reminding myself that despite advanced staging, the odds of a HPV oropharyngeal cancer recurrence are reasonably low relative to other cancer types after successful chemoradiation. Stay strong, stay positive and see your doctors if you need an extra check-up now and then to keep the mind monkeys at bay. N

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

by Diamond_David on Thu Aug 09, 2018 04:03 PM

Quote | Reply

have not heard of stem cell thing

I had tonsil cancer, radiated to neck 10 years ago. I have to eat smaller bites, wash with lots of drink and food has to be moist, can't eat white emat chicken much. Carry bottle of water everywhere.

Every treatment is different, a lot depends on what KIND of radiation you had and how long they zapped you

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

by Proxielocks on Mon Aug 20, 2018 03:29 AM

Quote | Reply

On Sep 20, 2013 9:54 AM Mary53 wrote:

I am 6 years out and cancer free but have found my issues getting worse with time. I still have my feed tube as radiation killed all the swallowing muscles  ( did the swallowing and speech thing), my mouth doesn't open very wide (like lock jaw, a surgeons and dentists worst nightmare), sinus issues getting worse and voice at time is terrible. Heaven forbid I catch a cold because I'm lucky I can be understood at all let alone breath.It "" target="_blank" rel="nofollow">http://breath.It " target="_blank" rel="nofollow">breath.It seems there isn't much we can do about it. I have tried a few things with no success, so have just accepted it as part of my life.

On the plus side I am blessed to still be alive as I know many that never had any time.On "" target="_blank" rel="nofollow">http://time.On " target="_blank" rel="nofollow">time.On the once and a while days I get depressed because I have so many issues I thank god I'm still alive and able to travel and spend time with my family and friends.

Good luck with trying something new and would love to hear if it works.

Sounds like the same thing with my husband. What caused your cancer? Husband started treatments in Feb 2009. He was on the feeding tube for 18 months and went off of it for about 5 months. Then got to where he could not swallow, or talk. To make a long story short we went to UCSF. He was told that there is nothing else that they could do for hime. He has been losing his teeth, they just break off. I asked him doesn't your mouth hurt with pain. He said NO because I don't have any feeling in my mouth. He doesn't feel any pain because they are dead. This has been a nightmare for him. For someone who loved to Run, eat, talk and now can't do all that anymore. I feel he is just wasting away from being 205 and now is 125 pounds. From being a loving person with patients, he is bitter and has NO patients anymore. Very frustrating to you, when you cannot speak to where people can understand what you are trying to say to them. Cancer is illness that you just cannot survive alone without getting some counseling. Depressing for the one who is suffering with the cancer and the spouse that suffer right along with them. You just cannot do it alone. People say that they are blessed to be alive. My husband does not feel that way. I am the spouse and I have been suffering now for two years with depression. I love my husband and I will always be there for him. I suck it up and say to myself, what if it was me instead of him. I know I would feel the same way that he is feeling.

Prayers for all that are suffering with this NASTY BEAST as we call CANCER.

Patty, Ca

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

by Ardukhunter on Fri Oct 05, 2018 12:41 PM

Quote | Reply
I completed radiation in Nov 17 for stage 1 cancer on vocal chords. Lots of problems with feeling like something was in my throat. Now I have a chronic sore throat. This week I just found out the cancer is back and it is not clear what the path forward is. Probably taking out the larynx

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

by john19382 on Fri Oct 05, 2018 05:09 PM

Quote | Reply

So sorry to hear that the cancer has returned.  It is something that many of us think about and unfortunately too many of us experience it.  

It probably makes sense to consider different options  -meaning geting a couple of opinions.    

If you let this group know the area where you live, there is a good chance someone will have knowledge about the health care options. 

Personally, I was close enough to Philly so I went to Penn Medicine - not the only option I explored but the one that worked for me. 

Hang in there - we are all pulling for you...

John

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

by Sister58 on Fri Oct 05, 2018 11:07 PM

Quote | Reply
Hi, Patty. My name is Beverly. I have been caregiver for my older brother off and on since 2001. His started with tonsillar cancer then. Surgery to remove his tonsils wasn't enough, and one year later he had massive doses of radiation. Since then he has had horrible side effects from the radiation. Vocal chord paralysis, brachial nerve plexopathy, which has caused his right arm to be paralyzed. In May of last year another tumor was found at the base of his tongue. They removed his tongue and what was left of the left side if his throat. They removed the muscle from his left chest to graft to his throat and make a "tongue". In June of this year they found another tumor at the back of his throat just in front of the spine. They removed his larynx and the top of his esophagus. They removed the muscle from his left upper leg to make what is called a flap, and to graft the back of his throat. He isn't married, and has no children, so I have been his caregiver thru these major surgeries, and take care of all his business for him. He has had a feeding tube for 2 1/2 years. Now he has to be ventilated at night because his breathing stops. I empathize with you and your pain. It is hard to watch someone you love go thru something so traumatic and painful. I know that you are hurting so much inside and can't share it with the one person you have always shared your pain with. I am lucky to still have my husband who helps me a lot. I am sorry your husband has had to go thru this horror, but I am sorry that you have to. No one understands what it is to be a caregiver until they have walked that path. My prayers are with you both. If you ever just need to vent......... Beverly

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

by Janey6 on Sat Oct 06, 2018 04:01 PM

Quote | Reply
Beverly, I hope you have some help with your brother. He’s lucky to have you. He has really had such a rough time. Most folks don’t think of Head and Neck surgery being so devistating. The side effects of radiation keep getting worse as years go by. My husband now has a feeding tube seven years out of treatment. Also his speech isn’t clear anymore. We just keep thinking....what’s next? I’ve read that major cancer centers are trying to de-intensify RT. They are aware of life altering side effects. Keep the Faith. Janey6

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

by Proxielocks on Tue Oct 16, 2018 09:14 PM

Quote | Reply

My husband had it all. Almost 10 years out and it has only gotten worse over the years.UCSF said there is nothing else they can do for him. They told us that it will only get worst. Excatly what has been happening. We take one day at a time.

Patty

318 Posts | Page(s): Prev 12...29 30 31 32  Next 
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.