Hi all!

Been dropping by, thought I'd join in.

My story (short version) male, in my late 50's. As a teen I had non-Hodgkins lymphoma, it was aggressively and successfully treated. In my late 30's I started to have some gastrointestinal problems, kind of like irritable bowel syndrome, unpleasant but manageable. Occasionally I'd have bouts of vomiting, about 8 or so times that'd land me in the emergency room, usually 3 -4 days of rehydration and back home.

About a year ago I had a persistent sore throat and was diagnosed with cancer on the left tonsil, not too advanced. Treatment was to be 21 days radiation and 3 hits of chemo. One week into the treatment I was vomiting and couldn't keep down food or liquid. Went to ER. They thought it might be small bowel obstruction and admitted me. A scan showed a possible blood clout in leg, so they gave me a bag of heparin. Turns out what I had was a bleeding stomach ulcer, and the heparin caused me to bleed out and drown on my blood. Was coded and place on life support.

A few weeks later they removed the ventilator and gave me a swallow test, I aspirated on the barium and started to drown again. For some reason they didn't have me on a blood sat monitor so they couldn't tell I was suffocating. Fortunately my wife kept telling them something was wrong, and I was coded and incubated, again.

A few weeks later they went to drain some fluid around a lung, but nicked and collapsed the lung, back on the ventilator. And a g-tube, and a tracheotomy.

After about 2 months I was finally out of ICU for good, but the emergency incubations paralyzed a vocal chord and left me with Dysphagia.

I was moved to an acute care facility to wean me off the trach, deal with the swallow, speech, and general rehab. It took 6 months to get to walk and swallow again.

During most of that time the cancer treatment was on hold, when it did resume after about 6 months they couldn't do the chemo because my body couldn't take it. So 4 weeks of radiation (which included 90 minutes of ambulance daily).

Was finally able to go home about 4 months ago.

Currently having 3 days a week of phys rehab, 1 or 2 days of speech and/or voice rehab, a day or two of jaw therapy to deal with the trismus and a weekly visit to a dentist for light therapy on the radiation burned hole in my soft pallet.

Biggest challenge (beside not getting too depressed) is eating. Although my taste has returned, and the back of the mouth isn't that painful anymore, the tongue has become extremely painful, I eat by nibbling like a rat due to trismus, chewing is a pain, there's lack of saliva, and the swallow is weak so bits of food get caught in the throat. I'm a mess when I eat.

But on the bright side my wife has been a champ throughout the whole ordeal, my last PET scan was clean, and at this point almost everything is slowly improving.

Some things will never get back normal, my voice, jaw opening, saliva and swallow, but the pain should subside some, and hopefully I can eat enough to yank the g-tube at some point, although that might take another year or so.

If there's one thing I wish my doctors had told me it would be to get a Therabyte right away. even before radiation started. That may have helped to limit the trismus.

Welcome to OCF. It looks like you have been thru alot. I may have missed it but I saw you mention radiation but didnt see you mention you had been diagnosed with oral cancer. Where was your tumor? When were you treated?

For some patients the therabyte works and for others not so much. I was one that it didnt really help. There is also a Dynasplint which is similar to the therabyte appliance.

Sorry to see you are dealing with being on the feeding tube. Its no fun! I detest mine but for me, its a necessary evil. Are you are to tolerate the ensure or other vitamin type nutritional drinks?

"Where was your tumor? When were you treated?"

Cancer of left tonsil. I was treated with one does of chemo and 5 hits of radiation last October. Then all the other stuff happened. And I subsequently had 21 additional zaps of radiation in April.

"For some patients the therabyte works and for others not so much."

My trismus hit me about 2 -3 months post radiation. On Friday things seemed okay, but by Monday I couldn't put one finger in my mouth. Truth is it was probably slowly getting worse, I just didn't realize it because I wasn't eating or speaking much.

It's helped, but not a lot. I didn't use it much at first because it aggravated general throat pain. That's subsided a bit, although there's still some tooth pain and a lot of tongue pain. After using it I can easily fit a finger in, but in an hour or so it's smaller already. But I'm going to keep at it, I think overtime it will help, and I'm afraid that if I stop I'll regress.

"Sorry to see you are dealing with being on the feeding tube. "
To be honest, it doesn't bother me that much, which I find odd. I think that currently eating is such a pain that the g-tube is a welcome, and necessary, relief. But I do miss eating and hope I can get back to it.

"Are you are to tolerate the ensure or other vitamin type nutritional drinks?"

Presently I'm on Nutren 2.0, 3x a day - 1,500 calories. Our insurance covers it, but I don't know for how long. I was drinking Carnation Instant Breakfast, but for the past few weeks it's intolerable because of the associated tongue pain while drinking it.

Welcome Yod! Reading your story was like an action packed novel! You sure have been through quite a bit.

Check with The Oley Foundation for your formula and feeding supplies if your insurance cuts you off. Its a patient exchange program fitting needy patients with those who dont need their supplies any monger. All the user pays for is the cost to ship which if I remember correctly is only $16 a case. For some without the best insurance it can be much cheaper than their co=pay is.

Welcome. You have been through so much in the recent past. I hope things smooth out for you. Usually newcomers learn a lot from those here; I think in your case, you are immediately promoted to sergeant and tell others how it goes! Hang in there.

Welcome Yod,

I had a somewhat similar experience as yours after 5 days of induction chemo in 2009. I was hospitalized, and in an acute care facility for 6 months as a result of chemo side effects, 2 months were in ICU, ventilator, paralyzed, over 110lbs lost, etc. I didn't go on do any radiation until over a year later, and like you, I had to learn to walk again. 5 years later, I overcame most the problems, gained back 50 lbs, eating everything by mouth, minus my current teeth and trismus trouble, but am far better than I was back then. I have a smile on my face when I see the hoyer lift, and wheelchair.

Good luck with your continued recovery.

Thanks for the welcomes and tips!

Hello Jod, wow you are working so hard. Cheering for you to keep it up. Its OK and completely understandable that you are feeling down. Keep being open and accepting of all you feel, its the only way to get better.

Sophie

Is this common with chemo? Do people often become hospitalized and can't continue cancer TX? Also, Paul, do you feel that the time off from cancer TX due to hospitalization probably caused the cancer to spread? I just wonder what one should do in these situations.

Not sure of the question, is this common with chemo? I assume you are speaking about adverse side effects making treatment impossible? I say yes, maybe not to mine or your extent, but you will see more patients that are unable to complete chemo treatments as opposed to radiation due to adverse side effects, labs, and is often underestimated, I know I did. My cancer did spread/return due to not having curable treatment (radiation) in a timely manner, plus the inability to have chemo with radiation up to three years later, and limited to a few types, and low dosages only. My original ENT said if I did not have such a reaction I probably would have been cured by now. That was 4 years ago.

As far as what you can do? The best you can. That's all. What may not be appropriate today, may be tomorrow. If you did 4 weeks radiation, had a clear PET, you did well, especially after your horrific encounter. The main thing is we are here. My doctor once told me it doesn't matter what adverse affects you had, what matters is you were strong enough to pull through and survive.

Be well.