Finally an explanation of WHY the long term Rad damage

Logan51

Went to the U of Iowa ENT Dr. on the 21st. He explained that the reason my larynx folds are coming together, blocking my air passage, is due to Rad damage on the the little blood vessels in otherwise okay soft tissue- eventually leading said tissue to die/turn into scar tissue over time. I said, "The same principle as Osteoradionecrosis," and he said Yes then repeated what I had said. Logic holds this applies to all areas that get 60+ Gys, FYI.

I had 68Gys of photon to the bottom-half of my throat, have been FT-dependent since 8/2019, so this explains what happened to the top 1/3rd of my esophagus- turned a considerable amount of said tissue into non-functioning scar tissue. Collateral damage, of course, but...what else is coming down the pike for me? 60Gys to the top of throat, so Epiglottis damage?

December 30th marks my 14th year since C-diagnosis of NPC w/unknown Primary confirmed, so I am long term. Thing is, I first noticed the breathing issue after only 7 years out-and has gradually grown worse. The Dr. said it is inevitable my larynx folds will close/cut-off air flow and the ability to speak, and recommended having him remove part of my one larynx fold to provide air passage, increasing my risk for aspiration complications and impacting the voice I now have. Plus, the procedure will have to be repeated due to growth on edge of section removed. Thus, has me thinking just getting a trachea tube installed would be better.

And, yes, Merry Christmas to all.

wbcgaruss

Dear Logan sorry you are experiencing the continuing changes and issues with radiation treatment. As the years go by it seems the gradual worsening of radiated areas is inevitable. So it looks like you had radiation to a couple of areas of your throat. The good thing is you are cancer-free long term but the bad thing is the heavy penalties you are paying later in life. There is no easy answer to this stuff but at least you manage to deal with all your situations. I know it's difficult and admire you for getting through all this. You have a difficult decision and operation to improve breathing which may carry some of its own problems such as more aspiration or getting a trach. I had a trach for several months in 2019/2020 and I did not mind it as some people do saying it is bothersome to wear the neck strap. The only thing I would like to add is to keep in mind the daily maintenance involved with a trach and some people need to be on a humidifier to deal with increased issues with a trach. I hope you had a Blessed Christmas.

Take Care God Bless-Russ

Logan51

Had a trache for 26 months in my early-Teens, Russ, due to a Mercury Comet dashboard and bridge abutment, so the only thing new is that they're made of plastic now instead of sterling silver😁.

Come what may, my friend, and I thank you.

MarineE5

Logan,

Merry Christmas to you as well. I don't have much to add to what Russ has already mentioned. I do want to THANK YOU for taking the time to post your recent Doctor's visit and make us all aware of the side effects of anyone receiving more than 60 Gy's. I have not progressed along as much as you have with issues, but have noticed it has become more difficult to swallow certain foods I didn't have problems with before. Even some medicines in capsule form have become difficult and I ask for the smaller MG capsules and take more of them to equal the one 300 MG capsule.

I do read your posts so I am able to learn from you and be aware of possible up coming problems.

Again, thank you for posting today. Take Care, My Best to You and Everyone Here

Logan51

You're welcome, Sir, and Happy Holidays to you.

What you said reminds me that I used to tell my Dr. I couldn't swallow "horse tablets" starting several years before the FT came into play. Had a couple bad experiences trying to swallow capsule-shaped acetaminophen (Tylenol-type) pills. I hope and pray your esophagus stays functional enough to avoid the FT.

Sir

Logan51

Follow-up visit with my local ENT confirms what I suspected when the windpipe eventually is closed @ the larynx due to Rad damage:

1) Pool of nasal congestion and water will build up to epiglottis and become an issue- suctioning the only solution.

2) If I get sick and vomit with my damaged esophagus that's had me FT-dependent over 3 years, the risk of a vomit pressure opening a fistula between my windpipe and esophagus is unacceptable because said could put a lot of it in my lungs and would likely cause death me unless:

The only solution that makes sense is having my paralyzed larynx fold near a side laser cut away to provide an adequate air passage, and also a way to get into my lungs if need be with an emergency trachea tube installed. The aspiration risk is significant, but I'll just keep doing what I have successfully by hacking the stuff up and out to avoid pneumonia.

Still have a voice and get by with breathing as-is, and now I know what I will want to have done down the road in this new Rad-damage battle normal- which I Pray none of you experience...perhaps I have created a new initial name for such: RDB🕚️

My best to everyone and their 2023.

wbcgaruss

Logan, I am glad you are still able to maintain and deal with this situation. Certainly not easy. I have been dealing with breathing issues also due to probably damaged nerves from my last lymph operation which caused paralyzed vocal cords. I commiserate with you. I pray you can continue on as you have been and do not need the operation you mentioned.

Wishing You the Best

Take care, God Bless-Russ

Logan51

Op is inevitable, Russ, but I thank you for the Prayers.

I'm not looking for sympathy and never have. No matter how bad things are, there's always many more in worse shape- whether it be with C, MS, Alzheimer's, bad burn victims, etc., etc. I only post what is happening to me as info for others about the possible toll of long term Rad side-effects, in my case to the throat and both esophagus and windpipe @ the larynx, in hopes those who've had or are about to go thru tx become aware and talk to their C Dr. team about. I had 19th Century (!) Photon Rads, rather than the new Proton, but the issue of damage to blood vessels is likely in play with both.

Used to laugh about the team of Drs. who invented the G-tube I had during tx, and after. Think my Rad Dr. knew them!

steven59

Logan51, I appreciate your man up attitude about what you're dealing with. It seems it wasn't until the last 6-8 years Dr's started attempting less aggressive treatment for hpv+ patients after so much success curing it. There is always somebody who has it worse, and I just hope you take the time to recognize your own courage while going thru this.

Logan51

Thank you, steven. I was not HPV+, but was "unknown Primary"- why they zapped me in 20 places/session.

And I do wonder if the less aggressive is better. Phrannie was not HPV, and she had a less aggressive tx regiment than I did. It came back, and took her in just a few years. She said her C team had contacted MD Anderson, so I assume her regiment was okay by them, yet it failed to rid her of the danged C.

Best of luck to you, and stay strong.

OregonGreen

https://csn.cancer.org/discussion/comment/1702898#Comment_1702898

Thanks for the heads-up, I am only 6 months out from 35 70gy treatments for stage 4 tonsil mass. I was so freaked out to hear I had cancer with no real symptoms other than a hard on lump under my jaw I just went along with all the doctors suggestions. 😐

johnsonbl

Logan, as my radiation oncologist said at the UI... I'll be dealing with the after effects of the treatment 30 years after but I'll be cancer free. Guess that's the trade off. I got a slightly smaller dose of rad, only 60 gy I believe (can't believe it's been long enough that I forget the specifics...right about 6 years). I think I was treated just as they started backing off on some of the standard non-HPV treatments. Hopefully it will pay off for me in the long run.

Best of luck and hope you are doing well.

Brandon

Logan51

Thank you, Brandon, and you're welcome OregonGreen.

Rains it pours, sometimes...last Friday, January 20th, I was told C is back in my life. Different area, though. Going to surgically remove the tumor, and in doing so further assess the severity of it, on February 8th. Way things are going, it's like- whatever, and I may never get lasered in your impressive U of Iowa Hospital.

Back in the day on this forum I used to post a saying once in a while, and it still applies- That's life. Get used to it...And I will.

wbcgaruss

Logan I am so sorry to hear that you are dealing with cancer again. I pray that it is very small and the surgery will remove it completely with clear margins. I am praying it is very minimal and will cause no extra problems.

Wishing You the Best

Take Care God Bless-Russ

Logan51

Thank you, Russ. Just another bump in the road of life.

MarineE5

Logan,

I am sorry to hear that the beast has reared it's ugly head once again with you. You have been thru a lot over your lifetime. As you stated" That's Life, get used to it" and you will. You may have heard another saying I often reference. "It's not the size of the dog in the fight, but the size of the fight in the dog that counts". You are one tough S.O.B. Logan.

My Best to You

Logan51

Thank you, Sir. Coming from you, that certainly means a lot to me.