A new battle

Logan51

We all know what going thru H&N tx is like- a 2-month battle that drags on as long afterwards.

A thought occurred to me with where I'm at now, almost 13-1/2 years since my last Rad session: first there was the battle of going thru treatment, and now there's the battle of dealing with the long term side-effects of C Radiation tx and compromised quality of life.

I've been Feeding Tube-dependent since 8/6/2019 because of what the Rads did to the top 1/3rd of my esophagus, which was collateral damage; and, near as I can tell, over the last +/- 6-years I've been dealing with the gradual growth of scar tissue and paralysis with my larynx folds that, in July of 2020, I was told I only have about 20% of a normal air passage in my windpipe, and the ENT Drs. are leaving it up to me on when I want a trachea tube installed.

I have been lucky not having to deal with Osteoradionecrosis and jaw replacement, knock on wood, but the bottom line is: first, there's the treatment battle to get rid of the C, and then down the road there will be a new battle to deal with the treatment's debilitating Rad damage for some of us. All cases are different, of course, and I was treated by the "Local Locos" in early 2009 instead of a cutting-edge University team more recently, and hope your long term survival leaves you in a lot better shape than I'm experiencing.

Perhaps I'm just doing a bit of a vent, but the long term issues of tx are something everyone should talk to their C team about.

wbcgaruss

I'm right there with you Logan many side effects are catching up with me, and you, and others on the board. We wanted to get rid of the cancer and they did that for us and I don't think we would want it any other way but like you say in later years the after-effects catch up. Even those treated in the best hospitals are not necessarily better off because it just depends on the cancer involvement each person had.

It is certainly not fun at times. It is hard not to feel down at times but we are blessed that there are so many options available today. Sometimes when I am feeling negative I get a piece of paper and write down the positives I have in my life. Count your blessings count them one by one. Before you know it you have a lot of items on the sheet. We can't turn back the clock and just move forward one day at a time.

Hang in there Logan and vent all you want it is good for you too. I know how you feel.

Wishing You the Best

Take Care God Bless-Russ

Logan51

Thanks Russ. Each hour I'm awake in every day in the time of sjá life I have is precious, and come what may.

Mikemetz

Logan,

I can certainly relate to the side effects on your esophagus, and can check off every one of them you mentioned for myself--and start a second list for ORN. Except for a small glass of OJ in the morning to take my crushed vitamins with, I'm 100% dependent on a feeding tube. Even with that, I'll cough up OJ particles for about an hour after because I can't swallow them 100%.

Have you looked into Botox injections to relieve some of the tightness in your neck, to give your esophagus and windpipe a bit more room to expand? Certainly not a 'cure' but I get them every 90 days, and they help quite a bit.

Botox is expensive, so you might have to get your docs to push your insurance provider a bit to get them paid for.

Mike

Mikemetz

Forgot to mention that I'm also 13 and a half years out from rads and chemo. Congrats on making it that far, and keep up the 'glass half full' outlook.

mike

Logan51

Botox was never mentioned to me, so I thank you Mike. Have a November with my local ENT, then late-December at the U of Iowa, and will ask about with both Drs.

debbiel0

I totally understand! I am 5 yrs out, and the treatment I went through to save my life, keeps on asking for payback! I try to be grateful, but some days it's very hard. I was fortunate to be able to ditch the feeding tube after a year. Eating has never been the same. We all have a list of can and cant do, on that one. Now, I am 2 yrs into the necrosis game . Doing everything I can to avoid jaw replacement. I am not sure that if I was told of the ongoing problems it would have changed my mind on treatment options, but I would be more prepared.

13 +yrs is a huge success story, and I hope you know, that we know, it hasn't been easy. 💕

debbiel0

https://csn.cancer.org/discussion/325717/a-new-battle

I also can relate. 5 yrs later, I an going thru osteonecrosis.. it is not fun! I am trying all recommended treatments, hoping for the best. It is very painful. No one ever warned me about these complications. Not that I would have changed my treatment plan, but being aware would have been nice. Although, I did have 3 good years before this ugly disease reared it ugly head again! I am thankful for that. I feel bad that my family is worried about me again.

wbcgaruss

Debbie, I am with you I don't think they mentioned the different possible side effects down the road, if so I don't remember it. I am guessing they usually don't say much because most people including me just want to get whatever treatment is needed and get rid of this cancer out of my body. They did impress on me though how nasty and brutal the treatment would be although I was never prepared fully for the full effect of it. I am so sorry you are going through this and have you on my prayers list and pray for you every day. Are they giving you enough pain meds for your pain level? You should not have to endure pain on top of it if you have pain ask them for more and stronger meds. Also when dealing with steady pain you need to get on a schedule and stay ahead of pain and just take pain meds on a schedule like every 4 or 6 hours till you get through the worst and then slack off. You know that's the thing, especially with cancer it affects the whole family and it seems more so than any other health event in our lives. Although other diseases do also. I know of family members that lost weight while a loved one had cancer and went through treatment.

Wishing You the Best

Take Care God Bless-Russ

debbiel0

I do have a very good pain routine. But I find it really hard to "pop pills" every second turn around. I really have to push myself to do what is best...then suck it up princess and carry on!