Trismus, neck pain, tooth pain, jaw pain, vocal chord paralis, trach tube

Hi Cindy
Sorry to hear you're being challenged so much.

Please know that you're not alone in your trial. There are folks here who suffer in much the same ways you are suffering.

I'm one of the lucky ones, I think. Of all your issues, the teeth is the only one I have. My voice is altered, and "off" at times, but it's almost always very easy to understand me when I speak - I sound normal to people the vast majority of the time. No trismus, can eat most foods, no trach needed.

Unfortunately, there are many who aren't as lucky as I've been. Sorry you're in that group.

Do you have any local cancer support groups? Here, we have Cancer Support Community - it was Wellness Center, then teamed up with Gilda's Club. It helped me to see, in person, people who had been through cancer treatment (or were in the process of going through treatment). Some days I just wanted to SEE that I wasn't the only one.

I HATE to hear that your situation has led you to drinking a lot. It's very very common for people who've gone through "our" treatment to have problems with depression. Have your doctors talked with you about that? We have many people on this site who have been greatly helped by anti depressants. I can say it's easy for me to not drink a lot - the damage from the rads makes it painful for me to drink hard liquor, so I don't.

If folks see your post, I'm sure you'll be surprised by how many people here have struggled with serious depression - to me, it's easy to understand the prevalence among people "like us".

I also am glad that you're giving this community a chance to reach out to you - as I'm sure you've already seen, there are wonderful people here - they really helped me on my cancer journey, and would be happy to help you as well. Keep posting.

So sorry to hear about the
So sorry to hear about the pain you are suffering. You are in my prayers.

Deb bie

Hi, my wife is going through

Hi, my wife is going through the same things. 1 year after surgery plus radio and chemotherapy. She has severe trismus, dry mouth and unbearable pain. I can totally understand you. i wish there was some effective treatment to combat these side effects of cancer treatment. She is just 30 years old and we both are doctors. i cannot see her in so much pain daily.

Greend said:

Welcome to "after effects" club
There are a couple of us who have and are going through the same thing. Doc told me that if these problems are going to happen they will usulayy occur around the 7-8 year point following treatments I have 100% of the same problems and spent $thousands to find out what caused it and also that there is not a lot that can be done. I was treated in 1996 and lost feeling in my chin in 2008, voice and back pins in 2009 and then finally had to get a Peg because I was losing weight and had pneumonia form aspiration food four times in nine months.

I can't remember the last time I was able to order through a Drive Through Window at any fast food place.

Yes it does suck but it is the hand we have been dealt and I hate that anyone has to go through this after beating cancer.

Denny

Denny

So how was the first 12 yrs?  Many issues.  Finished mine in 2016, 6 months later side effects started and gone downhill since or made already existing problems even worse in 4 yrs.  Every time something came up tried to get as much info from this site, Drs, Internet for suggestions to help combat the problem even eventually got a Natural Dr to stay away from more Chemicals.  Plus Drs treat symptoms not root causes.  I found most times a way to manage to try and enjoy some time with family & friends.  But as things as they would kept getting worse it couldn't be comfortable and kept trying different things.  Anytime I seemed to get a handle everything would change again & Id be miserable.  To lose saliva and have it replaced by Chemo Saliva made eating nearly impossible.  That was in First yr.  plus developed severe sodium low issue from drinking too much water or anything because of dry mouth.  Spend numerous times in hospital being given  IVs and being overdosed with Saline bags when I told them only need 1 but why won't Drs listen to you?  They have done it every time.  So found private IV Clinic to get my saline if blood shows low or I feel low on sodium and have to pay for it.  But kidney & Chemo Drs don't like that since I should be monitored. Though they have IVs lounges themselves but won't send me to that no 3 days in hospital going up & down with IV bags.  Just wish I could have had longer than 6 months of quality than so uncomfortable & can't even enjoy family outings like I once could.  Having a low Stage HPV Cancer I could live another 20 yrs but how without going insane.  No immunity, can't eat well, throat hurts constantly from dryness, can't sleep since they can't get thyroid dosing correct so tired, just can't do much of anything and I was so high energy & loved life, positive in 2016.  I traveled 3 yrs innEurope with this little patch of skin no Dr was concerned about.  Stupid Me had to go to ENT for bad allergies from Internist recommendation.  He started cutting & biospyied it twice & hell on earth began for Myself & My family.  How are you feeling now?  Hope you are well & healthy and stay safe from this beastly Virus.   Keep that Immunity Strong.  Hugs from a far distance, Lisa

From another member of this club

My side effects from chemo + rads ("The gifts that keep on giving") started about 6 months after treatments ended.  That was late 2009.  In additon to every thing you and the others have expereinced, I had osteoradionecrosis and an esophegeal stricture.  The ORN led to a jaw resection in 2014, and eventually the problems with swallowing led to a permanent feeding tube in 2019.  The point is not to compare my side effects to those you and others have, but to encourage  you to stay positive and enjoy what life as a cancer survivor allows  you to do, not what those treatments have taken from you.  You can't get those things back.  I had several bouts with depression over the years, as each round of bad news came to me and my wife.  But, we chose to stay positive, and thankful for what i can still do--not what I've lost. As I have said for over 10 years--this sucks, but it sure beats the alternative to what I was facing way back then. If I can help at all, please PM me on this site.

mike

Lisa, Mike, Cindy and all

As an 11-year Survivor who was treated locally, though supposedly affiliated with the U of Iowa, for Level 2-3 Nasopharyngeal, unknown Primary, I can relate. However, I choose to take Mike's attitude, rather than b**** about the quality of life.

I was very active from 2009-2014 under a different name. Tim/Hondo was the one who PM'd me about another case who got my tx regiment, which is the only one I've found on the forum. He had made a post in the general section at the bottom of the Discussion Boards page. A 20-year Survivor, he got the same concurrent C&R I did, but did so with an 8-week stay in a Hospital, perhaps due to their not having the technology at the time. From comments over the years, people on this Forum just don't get it. I did not have the option of not having a 3rd Chemo, like so many do now. I carried both an FU-5 and Cisplatin pump and bag for 48-hours in weeks 1&4= they flooded my system with the full Chemo in those two 4-day sessions. I was too sick for Rads in week #5, and started #6 in the Hospital- where I spent 4 nights getting Antibiotic drips. As for that man Hondo tipped me off on, I made a reply and did a PM to him, because in his post he stated that if he had to do it over again he would have gone thru no treatment and just let the C kill him, which was both a shock and disappointment for me to read.

And, being an unknown Primary, they zapped me in 20 different places/session: 56Gys above the chin; 60 to the upper-throat; and 68 to the bottom of throat. I was 55, then.

Side effects began with the mouth very soon, as the base of back bottom teeth became exposed (I could see them). In the years to follow I've spent over $15-K out of pocket on Dental- 2 root canals and 3 Crowns, and the rebuilding of the tops to some 12 teeth.

L'Hermitte's syndrome, of course, early-on, then unpleasant neck spasms- from the base on both sides to just above the chin, and located in 1" wide areas below the ears. A Neurologist got to witness a spasm on my first visit to him, and I've been on 2 meds ever since then= the last 7 years. Had been going to another Neurologist, but he retired. With my current situation I've reduced the number of meds/day, and pay for it with discomfort.

I did return to work as the Lead Shop Inspector at a metalworking factory 1-month after the last Rad session, and kept my Power Port for 15 months and FT for 17 in case the C came back. By 2012 I could not help but notice my energy level was taking a hit. Had me on Thryoid medicine because of the temperature fluctuations, but by 2018 I quit them and just live with it.

And yes, my saliva has never been close to the same. I call it "Toxic saliva." It's a thick white foam, and was with me but not that big a deal when I was drinking a lot of water and able to eat. Nasopharyngeal, my nasal congestion is always with me, too. It goes without saying that dry mouth has been with me since tx. 

Then, in 2019 I started losing weight. I knew I was coughing-up some of the 3 Ensures I drank for breakfast, but a major failure on a swallowing test, followed by an ENT scope which revealed what I was told after, "I see scar tissue everywhere. And escpecially at the base of your throat," lead to my being Feeding Tube dependent since 8/6/19. The only thing I dare to swallow are tiny bits of water from ice cubes I use to moisturize my mouth and throat. SO, as far as loss of taste goes- So the heck what? It's just grub/food. In the big picture, loss of taste complaints are for people who are having problems accepting their new normal and just need something to b**** about. Just compare the personal magnitude of losing the taste of food to losing your life...Now all my grub is Jevity or Boost VHC, and without any taste whatsoever. The only tastes: flavored water ice cubes, and the danged saliva that has me carry a spittoon wherever I am.

And do I expect jaw problems from Osteoradionecrosis? Yes, because my ENT said it will likely be soon down the road. And yet, now that I don't eat...And to spend all that $ on my teeth, when all they do now is form a smile...

Way I see it: C has only one thing in mind- killing us. I got an overkill on the amount of Rads, and the Chemo was delivered in the harshest way, but the result is I'm now over 11 years out to the good. As for the treatment negatives I live with, I have Drs who understand and have me on Meds, and I just accept the new normals with the same attitude I had when going thru 23 Ops., post-car accident when I was 13: How would Butkus deal with this? The answer: Come what may. I learned when a Teenager, no matter how bad things get there are people in worse shape/have a poorer quality of life. I instantly lost any sense of self-pity when I met a Teenager in the Chicago Hospital I was going to for those Ops. who suffered 85% of his skin loss in a fire... 

Us on the forum, post-tx, are still alive, so live...Time...We've all gotten a second chance.