A new battle

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

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

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.

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!

Justdon, I am a bit confused on how to advise you.
You speak of many different treatments and situations you had but can you name them out and put them in sequence of time when you had them etc. and when your last treatment or operation was.

You speak of a lot of things you went through in sort of a mixed up fashion.

Such as paragraph 2 you say " feeding tube , tracheotomy, node removal , neck surgery, forearm skin graph", did you have any or all these things and in what order.

I don't know why your speech therapist would make a statement as she did can you explain.
I would think if the potential for swallowing was there then it is still there now.
Don't give up hope now.
In fact-NEGU (Never Ever Give Up)
Waiting for your info.
Take Care, God Bless
Russ

I was diagnosed with stage 3 cancer of the base of my tongue late spring of 2023. At that time, because of the location of the tumor the Cancer team said they confident that targeted radiation and chemo would be the best option and less invasive than surgery. I finished my radiation therapy in October of 23 but was then hospitalized because of malnutrition, they peg tubed for seven months and I learned how to eat and swallow again in a month or so, but could drink right away. In January of 2024 I had a PET scan that showed no cancer and I thought I was done with it until like June when I started to experience some of the symptoms I started with originally. When I brought it up to the "cancer team" in August they said they would address that on my October schedule appointment

I thought maybe a CT in advance would be inline, but they didn't have any urgency until the appointment when they saw the tumor and ordered the CT scan after the appointment to see the new mass.

After that is when they told me about the upcoming procedures of removing less than 1/2 of my tongue and the feeding tube , tracheotomy, node removal , neck surgery, forearm skin graph was all part of the 10 1/2 hour surgery and other 2 hour back to OR to go back in because I was bleeding to much.

I thought I would have to work on the swallow and eating thing again, but really didn't realize that I could possibly never swallow again. I failed 2 swallow studies since and have an evaluation appointment in a couple of weeks with the pathologist that seemed pessimistic about my eating again.

I'm adjusting to the swish and spit thing, but dry up when trying to talk, the flap from my arm that they replaced the tongue that was removed doesn't stay moist and requires multiple flushing if I attempt to talk or do swallowing exercises.

I'm trying to wrap my head around what seems to be a life with the tube and I'm having a hard time with it. I feel like it's a life of no pleasure and don't know how to deal with that.

Justdon53 thanks for the detailed explanation.

I would say you had the treatment that is often used these days of radiation and chemo.

Yes not invasive and no disfigurement is involved.

January PET showed no cancer very good.

When you started experiencing symptoms again in June you should have contacted your doctor right away and when you finally decided to let your doctor know something was going on he should have been more proactive.

But understandably many times we are not sure exactly what to do and things don’t always follow recommended paths.

Anytime I thought something was unusual my ENT got me in right away checked me out and then had me get a CAT scan.

Anyway, there was a little lost time there but I don’t know if it would have changed the outcome or the way it was treated the second time.

I must say you are one of the unlucky ones who had cancer come back in a short space of time.

It seems the cancer grew rather quickly.

Well, you had quite a surgery of half tongue replaced with a forearm flap, feeding tube, tracheotomy, lymph node removal, neck surgery, and forearm skin graph.

Like many of us on here, you have had your share of cancer and treatments in your life.

Quite a lot of change in a days time.

I also in my last major situation had surgery and left the hospital with a feeding tube and a trach.

It certainly makes quite a change in your life to adapt to temporarily and possibly permanently but we don’t look at it that way only as short term till we recover our functions and heal.

I understand where you are coming from.

Eating is an accepted function we do at scheduled times and at random during the day.

Many things revolve around food even casual things with people like a cup of coffee.

So if you may be on a feeding tube from now on there are definitely some adjustments to make.

When eating with family you could feed by tube and I have heard of people doing it with friends and even going out and feeding while others eat, discreetly as possible of course which is hard to do.

Some people tube feed and just join friends or family while they eat.

Whatever plan you decide on will depend on what you are comfortable with.

People on here still travel and take formula along or some use a vita-mix or silver bullet to mix theiraffects food.

But first, let's not throw in the towel yet.

Now leaving that all behind, can you swallow at all?

If so and you can’t get much through maybe dilation to open your throat would help, it slowly in small increments makes the swallowing area bigger. Check out the link below.

Everything You Need to Know About Esophageal Dilation

Maybe you just need more time because you may be one whose recovery is a longer affair than some and possibly a different speech therapist if as you say your pathologist seems pessimistic about your eating again.

And you say pathologist, is it some sort of pathologist you have to help with swallowing and eating again or do you have an accredited speech therapist?

If you have a speech therapist maybe you are just at a rough spot and need to have a serious talk with them and let them know you are very serious about swallowing again and get them focused on your success.

You need a speech therapist, they are all things Head and Neck, swallowing, taste, breathing, speech, etc.

Try to get a Speech Therapist who uses Biofeedback for swallowing exercises and training I think it gives you an edge on improvement which in your circumstance wouldn't hurt and working with a good speech therapist who is positive can boost your morale.

Swallowing Exercise with Biofeedback

Swallowing sEMG Demo on VitalStim Plus

Swallowing and Speech Rehabilitation for Head and Neck Cancer

Also for swallowing, there are many videos on YouTube about it here is one but you can search this link to a search and see many more...

https://www.youtube.com/results?search_query=swallowing+after+head+and+neck+cancer+

Head and Neck Cancer Exercises for Tongue and Swallowing

Don do not give up on this yet you just may be able to prove them wrong.

I have read countless stories where patients were told they would never be able to do such and such again only to be proven wrong by a patient that kept on pushing themselves and their docs for answers.

I do not know if this can be changed or not but you may need to go to a different caretaker at least for a second opinion.

This head and neck cancer is really rough to deal with because it effects so many vital functions and certainly, most of us have some side effects we are left to deal with, usually something, it seems no one gets through this not dealing with something.

This can be dealt with and you can do it, stay strong and get your mind set on it, check out this article about this lady "Jeannie Hopper" who had close to the same thing and how she thrived despite of it...

Half of my tongue is gone, but I couldn’t be happier

Oral cancer survivor: 5 quality of life hacks that I didn’t learn until survivorship

As far as myself, the last swallow test I had I failed but I am still eating and it is a slow process, it probably takes me twice as long to eat but it works.

I am sure I will never pass a swallow test and they say I am aspirating but I don't notice it and have never had pneumonia or lung problems I get a CT lung scan and H&N area scan every year and I get the all-clear.

So our lives are definitely changed but don't give in or give up on this.

You never know the exact future but try to make it what you want as much as you can you will prevail and be able to deal with your new normal no matter what the outcome, I know you can.

Wishing You The Best

NEGU (Never Ever Give Up)

Take Care, God Bless

Russ