At 2 years out I started having neck spasms from fibrosis due to radiation damage to the neck muscles. My understanding is that this is to be expected. For the past several years I started having problem with erratic blood pressure and the docs attempted to control this with BP medications. This was my first trip to the ER. Oddly I had a routine followup with my MO and it kept going up instead of down, like it typically does (I have "white coat" syndrome) . When it hit 181, systolic, they loaded me into a wheelchair and down to the ER I went. They fine tuned me and I was discharged later that day.

I started having Fevers of Unknown Origin (FUO) and had many tests to get to the bottom of that, culminating in another ER visit and subsequent 4 day hospital stay when it hit a nice toasty 105 degrees, in December of last year. All the while, I am seeing a pulmonologist, infectious disease specialist and a hepatologist (I have HCV) as well(. I have had about every blood test there is, as well as a bronchoscopy (with lavage), endoscopy with stomach biopsy, bone marrow biopsy (thats a fun one - I have the entire procedure video'd on Facebook) - Warning - not for the sqeamous! This all coming to a head a few weeks ago with a brainstem bleed (stroke) with a second bleed the very next day while having dinner in the ICU.
Brian and I had discussed the BP issues and he sent me an article on Baro-reflex failure, long before I had the stroke, I started enlightening my medical team to this issue. They were reluctant to believe me, leading me down many diagnostic paths such as; the HCV has become active in the stomach (due to a thickened antrum) which showed up in a spiral CT during the 105 degree fever incident. I'm still being followed for MGUS (Monoclonal Gammopathy of Undetermined Significance) due to low B12 and a positive monoclonal antibody test (the MO was going down the non-hodgkins lymphoma route then). If there is a bright side to having a stroke, at least it finally connected to dots, so to speak. It turns out the FUO was caused by aspiration pneumonia. I see, from reading the posts, that's showing up more with long term survivors. Evidently I have had swallowing issues for quite some time (nobody told me - I just thought it was part of the "new normal"), on the right side (where the radiation was focused) and the left side, sort of, carried the load until the stroke. I failed the video fluoroscopy test and then the full extent of the swallowing issues was visualized. I am hoping that rehab allows me to resume at least some swallowing function in the near future. I the meantime, I had to have a peg installed, which I fought vehemently during my original treatment, (sooner or later its going to get ya!) I was always in the "not to peg" camp. It was that or death from pneumonia. I've only been out of the ICU for a week so PT is just getting started. They tried a new BP medication which caused such severe zerostomia, that I went back on Atenolol and hopefully that will help me from having another stroke (which occurred in the Pons area of the lower brainstem). I am recovering rapidly from the stroke (hopefully I won't have another) and there will be more revealed as I travel down this path.

I forget to mention that during the next spiral CT study next month they're finally going to do an ultrasound of my carotid, I already know why the results are going to be. I can tell by looking.

GEEEEEZ the drs probably run and hide when you come in the door.

(sorry couldn't help myself) you are a survivor my dear!!!!

Wow. Hopefully they get everything sorted out for you. It sounds like a perfect storm maladies. I am sorry about the stroke... assuming it happened in the hospital they likely dealt with it swiftly so I'm praying there's no permanent damage. With physio and a swallowing specialist I hope you will regain your swallowing. Hugs.

Gary, I don't know even how to wrap my mind around this. Puts my own swallowing difficulties in huge perspective, although I must admit I perked up my cyber ears when you mentioned aspiration pneumonia and thinking it was normal.

All I can do is send best wishes and courage, which you clearly have in abundance. I'm really sorry about your having to get the PEG because like you that was something I resisted vehemently during my treatment. Hope it's something you can deal with without too much discomfort.

Please let me know if there's any way I can help you.

Let me clarify. I didn't think that pneumonia was normal, only swallowing problems were. Until I was hospitalized it manifested itself as a one day fever that would resolve itself then recur a month later. As it got worse it was occurring weekly (but never lasting more than 1 day). It baffled my entire medical team. Classic FUO, typically is a fever that lasts several weeks. Even when I was in the hospital on December I had no pneumonia diagnosis.

I don't come here very often anymore, but saw your post. My husband is about 11 post treatment, too. The aspiration pneumonia has become a huge issue for him...he spent 2 weeks in the hospital (after I called 911 in the middle of the night) fighting a very severe case of it. He had been treated (probably more like "undertreated" for less severe cases for many months). Even though we both were pretty certain of the cause, the hospital doctors didn't want to acknowledge that it was aspiration pneumonia until they had done HIV test, tuberculosis tests, etc. It was a swallowing test that finally convinced them of how bad his post-radiation swallowing was, causing the aspiration. He went back on the dreaded PEG tube in Sept and is still on it, though doing swallowing therapy and trying to eat by mouth again.

Hate to scare people currently going through treatment, but the aftermath of this disease (more specifically, the treatment) is brutal. But, hey, at least he is still alive.

Anita, I'm sorry to hear your news. It reaches a point that "...but...at least...still alive..." doesn't cut it any more. The brutality for many doesn't rear it's ugly head until years down the road; for others it was relentless and never let up.

"Brutality" is about right.

After taking liquid B-Max ND, B vitamin supplement since May, I managed to get my B12 levels to double normal (better than 75% of normal, which is a very good thing. My Igg numbers are unchanged so the MO will be following me indefinitely for MGUS. I have ditched the formula and eat only blended foods now and feels lots better - even gaining a little weight back. I see the MO next week so I'll update things in more detail then.

Saw the MO. He's happy with my progress but still testing me every 6 months for MGUS. More than likely, the MGUS is due to the hep C that I have.

Great news, Gary.

Ionizing radiation is a risk factor for MGUS as well. It was published in Blood magazine back in 2009. Likewise for MDS. My elevated calcium levels led to more studies for me back to 2009. The possibilities from late effects of radiation are astounding.

One of the difficulties after radiation, is finding anyone that is well-versed on the "syndrome" side of the issues versus looking for a prevailing disease. Almost any neurological, neuromuscular, endocrine and blood disorder has some similarities to one who doesn't specialize in cancer aftercare. Radiation doesn't cause those diseases as much as presenting as a random and broad set of symptoms to manage. It's the randomness that prevents anyone from standardizing treatment protocols.

"It reaches a point that "...but...at least...still alive..." doesn't cut it any more."

I agree. The older I get, the worse I tend to feel. I had many good years post surgery, radiation and chemo, but as I age, everything seems to be going down hill. As if the aging process isn't hard enough!!

Radiation .... the gift that just keeps on giving.

I hear you Donna. The aging process, by itself, is brutal enough, then accelerated by the radiation therapy. Nobody thought I would live 5 years either. My original estimates were 26% chance of 5 year survival! I guess its a high class problem that we're living long enough to feel the long term effects of radiation. From the beginning I felt like RT aged me 10 years - now I am convinced. I have no pretenses about living a normal life span...

This thread is both encouraging and terrifying. I'm still working on swallow recovery, though I am eating fully by mouth these days ... and I have to say, as much as I sometimes choke, I've actually wondered if swallowing liquid badly was going to cause me some sort of pneumonia. Good to know it's something I should look out for. I've also got a good doc, I just posted in another forum, he caught that my thyroid is all out of whack, which had NOT crossed my mind as part of recovery. (I swear it's still chemo brain...)

Still alive is good ... Thriving is better.

Kristen, knowing what I know now, I would have done all of my restaurant bucket list sooner ;-) I do have other 12+ year survivor friends who are having no issues, so just as we all respond differently to treatment, so we respond differently to post treatment as well. You may have thyroid damage because of the position of your tumor and the radiation beam entry points. They can manage that with medications. Aspiration pneumonia probably won't show up until year 10, post TX, if it shows up at all. Neck spasms were the first radiation damage issue to appear at about year 2.Swallowing liquid badly will get you pneumonia. At this early stage in treatment, they should be able to provide you with swallowing therapy that is effective. Things to watch out for down the road are baro-reflex failure. This can cause BP, heart rate and temperature problems. If this does occur, it will be at about 10 years post Tx. Just stay in the now and don't get into the future too much.

OK. This thread is very interestkng to me. I did not have radiation, only a 1\3 glossectomy with flap anterior right side of tongue. About 8 months post I was admitted to the stepdown ICU unit with FUO and sepsis. Doctors blamed it on pneumonia but nothing showed up on 2 chest xrays. I was treated in the ICU for 3 days for sepsis of unknown origin. I now wonder if it was aspiration since my new normal includes trouble chewing and swallowing anything but very small bites. I had pneumonia like symptoms for a week before I went to the hospital with fever of 102. Very interesting. My local doctors were stump ed as to why I was septic and near organ failure with no obvious source of infection.

Gary,
I have not been on this forum in a while and I am very sorry to hear of your difficulties. I am now over 12 years out and had a bad episode last year that I now also believe was aspiration pneumonia. The swallow studies do show that I aspirate thin liquids and it was suggested that I use thickener, which I do when I drink Boost. About the only other liquid that I ingest is water, which I was told is generally not too harmful if it reaches the lungs. I am told that, since I cannot swallow without drinking water, the real danger comes from small bits of food which can flow into the lungs along with the water. The therapists at MDACC suggested that I enroll in their "swallowing boot camp" to improve my swallowing, but as I am still able to eat most any non-spicy food, and only have had a one day fever episode in the last year and a half, I have not followed through.
Your posts and those of others are causing me to re-think that decision. I did have a feeding tube during treatment and I do not want to return to that. As some may recall, I am also dealing with osteonecrosis issues in my jaw, where the skin has never quite grown back in the gum after a molar came out 2 years ago. My dental oncologist keeps trying things and I see him often, and so far no need for jaw replacement.
I have been very fortunate for the last 10 years or so and have no real complaints, especially compared to the hard times and suffering that many of you have experienced. We are lucky to be around 11 plus years later but it looks like bad stuff just comes with long term survivorship.
I wish all of you the best.

Danny

Danny, what kinds of things has your dentist been trying?

First of all, I have had two sequestrectomies, minor surgery to remove dead bone. He has me taking Pentoxifylline, a drug which is supposed to increase blood circulation in the body, along with Vitamin E, which is supposed to increase the effect of the drug. I go in every month or so and the dental oncologist lately says that the spot is looking good and that there is evidence of some skin growth.
Since there is a hole where the molar used to be that gathers food, upon eating I immediately flush it out with sterile salt water and use clorhexidine rinse a few times a day. So far I am maintaining, which is good, because a year or so ago, I assumed that a mandibulectomy was in my near future. Long term, who knows?

Thank you, Danny. I would guess 400 mg Pentoxifylline and 400 IU Vitamin E 3 x daily? Have you had HBOT as well?

Best wishes for all this resolving without surgery.

Gary,
Yes, I went through approximately 40 HBO treatments a year and a half ago, following my first sequestrectomy. Coincidentally or not, it was during the time of the HBO treatments that I became very ill with what I thought was the flu, but turned out to be aspiration pneumonia. The HBO treatments led to a serious deterioration of my vision by causing minor cataracts to grow, and my hearing also got worse during that period.
The good news: I got cataract surgery and see better than I have since age 10 and I now wear hearing aids, which I probably needed for a while anyway. I only had to pay for the hearing aids. Thanks goodness for Medicare.
Best of luck with all of your issues.

Hi Danny, at least we're still here to bitch about it! I dealt with the FUO for a year and a half before they figured it out. Since the tube I have aspirated twice from reflux so there is more than one way to get pneumonia. Wasn't serious enough to check into the hospital though - just rode it out at home and it was the typical chills/fever/fever break in less than 12 hours thing. The last time I saw the eye doctor they told me I had developing cataracts as well. My hearing also sucks but after 50+ years standing next to the ride cymbal, I'm not surprised. Indeed Medicare has saved my ass more than once!

Feeding tubes aren't awful if you're not on formula!

I have developed a type of macular degeneration in one eye, from radiation, with massive huge floaters. I guess it never stops. I wonder if I will lose my sight, hearing or swallowing first some days.

Ed, I worry about that myself, especially when I could watch the collimators changing shape during treatment.
\

Dealing with the latest episode. I'm resigned that this is how it will be from here on out.

Couple of aspiration pneumonia episodes since I last posted. Then, last week ER and a week in the hospital with pneumonia that isn't typically aspiration - more likely due to weakened immune system and possibly infection from rotting teeth. Guess where the rotting teeth came from...radiation. This latest pneumonia also resulted in sepsis, so even after being released from the hospital, he's going in every day for IV antibiotic therapy. Because of all the poking from IVs and chemo during treatment, finding uncompromised veins is always a challenge.

Swallowing issues haven't gotten any better, either. Even after more than a year of weekly swallowing therapy, swallowing seems to get worse and worse. Husband is now resigned to having his PEG tube for the rest of his life and getting most of his nutrition that way.

I hope somebody that has just started into this journey isn't reading this. Then again, maybe treatments have changed in the last 10+ years and these late side effects are a thing of the past - I certainly hope that is true.

Sorry to hear of the latest challenges. I've been battling pneumonia most of the year myself and my eyesight is coming and going. I seem to be the only one left from the days of old without a feeding tube. This stuff gets overwhelming at times.

I hope things get better, if I may use such a word. Hang in there, Anita. Sending you some heartfelt love and hugs.

Me too Anita.
Sending you positive vibes , hugs and love.

Im so very sorry to read about the latest struggles your husband is having.

Have you looked into the Mic-key button for a permanent feeding tube? Ive heard many good things about all the benefits of having a small button instead of that big "tail".

Best wishes!


Mic-key button feeding tube (main OCF pages)

Perhaps you should start a new thread on Trismus? I have lots to say about this:)

Friends,
July 2nd was the 13th year since my diagnosis, so this time of year I usually post about how fortunate I have been to be cancer free and to have lived a mainly normal life since I healed from my treatment. I have been around to watch my kids grow up, graduate college and become fine young adults and I outlived my dear mother who died last year at 95. I returned to work and have been married to a wonderful woman for 10 years and we have traveled the world together. So no big complaints....
But, the degeneration in my jaw has apparently continued and I have an appointment for my third sequestectromy to remove more dead bone where a tooth came out and never healed despite the HBO treatments. I have dodged the bullet for a couple of years but would not be surprised if a mandible replacement is in my future. In the meantime I have been aspirating liquids more lately and suspect that I have a little pneumonia. My dentist at MDACC just put me on an antibiotic called Levaquin which I am hoping will solve the pneumonia problem.
I can eat just about any non spicy food as long as I drink water, but the water can be aspirated to the lungs and carry food particles.
I did not mind my feeding tube during treatment because I could look forward to removing it one day. The prospect of going back to a feeding tube now is rather depressing, as is the idea of a .mandibulectomy.
I realize that I have been so very fortunate to have been able to live well and enjoy these last 11 to 12 years after a stage IV diagnosis so I don't want to whine, but I damn sure don't like it, either.
Hoping for the best and wishing the same to all of you on this 4th of July.
Danny

Danny, first congrats on having so many good, healthy years after going thru brutal OC treatments. Im very sorry you have some long lasting after effects. A mandibulectomy is not an easy surgery and recovery can be a long one. Wishing you all the very best with everything you are going thru.

Christine,
I can always count on you for good vibes! Thank you for your years of kindness and support to so many people on this forum.
I am sure that I will be okay and I am glad that you have survived your ordeals.

Take care,
Danny

Hi Danny, it certainly is great to read that you have survived your cancer . Seen your kids grow up. Enjoyed a wonderful marriage. However, you are entitled to "whine" as you put it. Dental issues and Osteoradionecrosis are not to be sneered at. They cause many here unpleasant and long lasting issues. Issues you know about. You have done the PEG before so are familiar with those issues, not trivialising them either. I do so wish you a quick and long lasting resolution to all these current problems.
Tammy

Good to hear from you, Danny. I hope you get some better news and stability soon.

Thank you Tammy and Uptown. It seems that you and yours have gone through much more than I have and I wish you and your loved ones all the best. I had to drive over 4 hours today to far NE Texas for a court case in a little town tomorrow. I am feeling better today, and feeling good greatly improves my outlook.

After following your recovery, your bike rides, your marriage, and more, over the years, we really should meet up for coffee or water sometime soon. If you get up to the DFW area let me know or if you want to come to the Houston walk October 17, I'll be there.

Sorry, I just saw your reply. I will do my best to make the Houston walk.

13 years after treatment, I am in the same situation: felt lucky I am still alive but have to struggle with many long term side effects. Particularly the difficulty of swallowing and choking on liquid. Doctor has warned me several times not to eat by mouth, but I have not put in the PEG tube yet. Mucus build up is another issue for me, I have to constantly clear my throat. Dry mouth and constant sensation of sore throat woke me up several times a night...All teeth were pulled out at year 10 after 30 sessions of HBO...

Hi! I am also a LT survivor..had OC 3x..first at 22 yrs old(1994) , last time at 26.i had a doctor originally who was awful. I sued him for malpractice & won-but nothing could make up for what pain this man has caused in my life I am now 43 & dealing w the long term side effects. I have all Dental implants in my mouth..have done over 100 HBO..have always had issues speaking but recently my palate began shrinking & it has caused a very nasal sound to my voice. It is beyond awful. People now ask me if I am deaf. I am barely understandable. The swallowing & tongue movement is also a huge issue. I gave a diet of about 10 things that I eat. I am in therapy but at this point in my life I feel like I have nothing left to give. I have fought so much & it just feels like "enough Is enough".. I hate to complain bc I should be grateful, But at this point, I'm just very sad & tired of living like this. I dream of waking up with a normal sounding voice. And the mucous is a problem as well. If anyone has something positive I'm all ears!! Thanks!!

Hi, Dani

You have every right to complain. Speech and eating are such fundamental functions that to lose them even partially is more than anyone can take lightly. What do your doctors and SLT say about the palate?

I understand that you feel as if all the fight has gone out of you. A body and mind can only take so much. You say you are in therapy. Is that with an SLT or a health psychologist? An experienced health psychologist should be able to help you deal with these issues. I didn't know that such a role existed until recently and I'm impressed by the help I've been given.

You are in the right place here. I'm not a long term oral cancer survivor but I've been in the shadow of cancer since 1996 and I know what a burden it places on us. It's hard, so hard but we are special because of what we have endured. Let all your emotions out, seek as much help as you can and then see if your old determination comes back.

I wish you well.