Mucoepidermal carcinoma - mandible (low grade)

jkbrew

When this whole thing started, I was going to have surgery - that's it. Remove part of my mandible - cancer gone. It's been 4 months now. I've had 2 surgeries, 8 radiation treatments and 1 chemo treatment. I have a total of 7 weeks for radiation and 2 more doses of chemo. The cancer was bigger than the surgeon (or anyone else for that matter) thought. Plus, it got into the nerve and the soft tissue of the left side of my mouth.

So, I'm trying not to be panicked, but I am starting to feel the effects of the radiation which is very frightening since I have 6 more weeks of it. The first round of chemo didn't go as well as the doctor and nurses were trying to convince me it would. I can't believe how horrible chemo was. I wasn't prepared at all. I also wasn't "back to myself" for a full week. I lost 7 pounds, threw up, slept, felt sick and I just wasn't "present" for my family. I am 40 years old. I have 3 children: 15, 10, 8 and am married. My family has been wonderful, but my expectations for myself are too high. The experience was like what I image hell to be.

I can't seem to find someone with my same cancer. It would be so helpful to speak with someone who has my same situation. Like, do I 100% have to have a feeding tube? I am really trying to avoid that, but am starting to feel that it is inevitable. I do have a port in my chest.

Just looking for any feedback. Thanks so much!

soccerfreaks

I really appreciate your attitude, jk! "Remove part of my mandible", as if that were a small deal . You have been through a lot already, and I suspect there is more to come.

Me, I had a 15 hour surg to replace half of my tongue (among other things), followed by some rounds of cisplatin and 33 rads, complete with mask. Not quite in the same boat, but I do understand what you are talking about.

Re the reaction to chemo, trust me, when I got my treatments, THAT time, after one day of happy-dappy, I spent two days pretty much curled up in a fetal ball in a dark room.

Do not blame yourself, as you seem to be doing, for not being yourself, as you put it. You are not yourself at the moment. They (your new friends ) are invading your body with poisons designed to kill any stray cancer. It happens that those chemicals also kill good cells. They (your new friends ) are zapping you with radiation that will continue to burn inside of you long after they are done zapping you, all designed to kill the weird cells, but which also happen to kill some good guys.

You are not wimping out by being sick, nor by being afraid. If you were not afraid, we would probably be alarmed!

Lower your expectations for yourself, my friend. That is first. You sound a lot like me. I wanted to be the first guy out of the joint (hospital), the first guy back to work, the first guy to eat a steak, the whole bit. Cancer tends to be an equalizer.

I do not mean to lower expectations as to your capabilities and your fighting power. I mean to quit expecting that you can defy laws of nature. Learn to work with them, and around them, when you can. But do not put too much on yourself.

Concentrate, in other words, on fighting the battle in front of you, and disregard certain previous notions of self. Ironically, you have to be stronger now than ever, by acceding a few things.

It sucks, I know.

As for the peg tube ('feed tube") if it comes to that, it is not such a bad thing. The important thing is that you continue to get proper nutrition. Again, forget the old rules.

Hang in there, and best wishes to you and your family.

Take care,

Joe

MLC53

Hi,
I just wanted to let you know that there is another website (if you don't already know about it) that you can go to for additional support and info. If you do a search there, you might find others that have had the same cancer as you. The address is:
http://oralcancersupport.org/forums/
Hope this helps. Good luck!
Marie

jkbrew

MLC53 said:

Hi,
I just wanted to let you know that there is another website (if you don't already know about it) that you can go to for additional support and info. If you do a search there, you might find others that have had the same cancer as you. The address is:
http://oralcancersupport.org/forums/
Hope this helps. Good luck!
Marie

Thank you
Thank you so much! I did register on that site and am having a little trouble navigating, but it is a great resource and I need as many as I can get.

jkbrew

soccerfreaks said:

I really appreciate your attitude, jk! "Remove part of my mandible", as if that were a small deal . You have been through a lot already, and I suspect there is more to come.

Me, I had a 15 hour surg to replace half of my tongue (among other things), followed by some rounds of cisplatin and 33 rads, complete with mask. Not quite in the same boat, but I do understand what you are talking about.

Re the reaction to chemo, trust me, when I got my treatments, THAT time, after one day of happy-dappy, I spent two days pretty much curled up in a fetal ball in a dark room.

Do not blame yourself, as you seem to be doing, for not being yourself, as you put it. You are not yourself at the moment. They (your new friends ) are invading your body with poisons designed to kill any stray cancer. It happens that those chemicals also kill good cells. They (your new friends ) are zapping you with radiation that will continue to burn inside of you long after they are done zapping you, all designed to kill the weird cells, but which also happen to kill some good guys.

You are not wimping out by being sick, nor by being afraid. If you were not afraid, we would probably be alarmed!

Lower your expectations for yourself, my friend. That is first. You sound a lot like me. I wanted to be the first guy out of the joint (hospital), the first guy back to work, the first guy to eat a steak, the whole bit. Cancer tends to be an equalizer.

I do not mean to lower expectations as to your capabilities and your fighting power. I mean to quit expecting that you can defy laws of nature. Learn to work with them, and around them, when you can. But do not put too much on yourself.

Concentrate, in other words, on fighting the battle in front of you, and disregard certain previous notions of self. Ironically, you have to be stronger now than ever, by acceding a few things.

It sucks, I know.

As for the peg tube ('feed tube") if it comes to that, it is not such a bad thing. The important thing is that you continue to get proper nutrition. Again, forget the old rules.

Hang in there, and best wishes to you and your family.

Take care,

Joe

Thank you and a question for you.
Thanks Joe! I am having Cisplatin (1 done, 2 to go, 2nd one next week) and at least 30 rads (I thought it was 35, but am hoping it is only 30 0 I've had 12). Did anti-nausea medicine help you after chemo? If so, what kind was it? I was prescribed Metoclopram and Prochlorper with some kind of steroid, too. Plus I was given Lorazepam. I almost couldn't keep everything straight. Isn't there just one really, really good anti-throw up medicine that works for the majority of the human race?

Thank you for the well wishes,
Kim

soccerfreaks

jkbrew said:

Thank you and a question for you.
Thanks Joe! I am having Cisplatin (1 done, 2 to go, 2nd one next week) and at least 30 rads (I thought it was 35, but am hoping it is only 30 0 I've had 12). Did anti-nausea medicine help you after chemo? If so, what kind was it? I was prescribed Metoclopram and Prochlorper with some kind of steroid, too. Plus I was given Lorazepam. I almost couldn't keep everything straight. Isn't there just one really, really good anti-throw up medicine that works for the majority of the human race?

Thank you for the well wishes,
Kim

Nausea
Kim, I was prescribed compazine and phenergan for nausea. Unfortunately, I must admit, they did not keep me nausea-free. They probably did help with the effects, in fact, I'm fairly certain they did, but they did not eliminate nausea and even the throwing up (a good side benefit of a peg tube, by the way, is that you can go to a sink and open your personal 'spigot', and let the stuff leave that way instead of through your mouth ).

It is something to deal with, as far as I can tell. No one said the journey was going to be an easy one, but it is well worth the trip, my friend!

Take care!

Joe

soccerfreaks

jkbrew said:

Thank you and a question for you.
Thanks Joe! I am having Cisplatin (1 done, 2 to go, 2nd one next week) and at least 30 rads (I thought it was 35, but am hoping it is only 30 0 I've had 12). Did anti-nausea medicine help you after chemo? If so, what kind was it? I was prescribed Metoclopram and Prochlorper with some kind of steroid, too. Plus I was given Lorazepam. I almost couldn't keep everything straight. Isn't there just one really, really good anti-throw up medicine that works for the majority of the human race?

Thank you for the well wishes,
Kim

Rads
Incidentally, be very pro-active with respect to your radiation treatments! Another guy and I had the same treatments (35) at the same time with the same doc and he ended up back in the hospital with severe burns while I had little more than a sunburn on my chest (along with the interior swelling that we could apparently do nothing about).

My wife is a wound care nurse and she advises using a water-based product post-radiation treatment, each and every day. If I understand correctly, petroleum-based products actually help to cook you because they are absorbed by the skin. It is all too complicated for me, but I pass it along, as I have been for close to three years now.

I used something called Biafene (sp?) but I know there are other products out there, and some folks say that aloe worked quite well for them.

The point is to take very good care of yourself post-treatment each and every day, probably a couple or three times a day. We always rubbed me down right after tx, and then right before bed.

Obviously, check with your doctors before making any changes, but be sure to give this subject great respect and concern.

Take care,

Joe

wboaz

Hey jk,
I also went through
Hey jk,

I also went through 33 rads, a tonsillectomy, radical left neck dissection and 6 treatments with Cisplatin. Nutrition is one of your most important factors through all of this so I advise getting the PEG tube. I held out and then I needed it so they did it the day after Christmas. Unfortunately the nurses that do home hospice and show you how to use the tube didn't return until the new year. It was a long and hungry week. We are going into the holidays and lots of drs and nurses will be taking time off. You need to be able to feed yourself.

As to nausea, talk to your chemo Dr and the nurses that give the chemo, they may be able to make some changes and really help with that. If you are in pain or suffering you have to yell and fight for your rights. They are busy and won't see you as more than someone going through the process unless you make them look at you.

My radiation Dr. said "you are about to go through the worst treatment we have for Cancer. You will be in a lot of pain, we can help you with that but you have to be a fighter and you have to tell us everything." I hated him on that day for scaring me and my wife so bad but he was just telling it like it is. It will get better. It may take a while and you will have to adjust to a new "normal" but it does get better.

I will pray for you that the good Lord gives you the strength and patience to persevere through this. Be positive, look for humor and know you are loved, attitude is very important now.

Wayne

Unknown

This comment has been removed by the Moderator

Butterflygal

Cancer of the right mandible
Hello there,
I just found this website and read your story. It is very late and I have to go to bed but I wanted to tell you that I think I have the same cancer as you. My cancer is in my lower jaw. I have Diffuse Large B Cell lymphoma of the right mandibular bone. I will post my story tomorrow. Look forward to keeping in touch
sincerely,
J. Andrews

Hal61

What Joe said
Hi Kim, I'm sorry your treatment time is increased, and that you now have this to deal with. Joe's original response is a great encapsulation of the psychology of chemo treatment. You might want to consider sharing it with some (or all) of your family.

I had 35 rads and three Cisplaten sessions. After each session I would feel fine the day of infusion, o.k.,the next, and pretty shell shocked with treatment symptoms on the the third and following days, the degree of treatment symptoms lessening a bit each day for 4-7 days. I took "ondansetron"(zofran)and "prochlorperazine." Neither was effective on the days I was most nauseas. I was rarely incapacitated, and was able to drive myself the relatively short (35 min) distance for daily radiation and chemo. The good news is that you'll come out of that fog. Get your rest, and nutrition, and take the pain meds as you need them. I mention this because I've spoken on a few occations with good people who were in pain, and not taking the meds because taking them was a sign of weakness or wickedness. It's not, they're made for situations just like yours.

Remember that everbody across the boards sympathizes. General reactions to the same chemo regimen are fairly constant, so be patient with yourself. I always think of a snippet from Lance Armstrong's "It's Not About The Bike."

He was contemplating a problem that had come up with one of his sponsors during his treatment time, the sponsor was asking to re-evalualte his contract, one of his three substantial contracts. "Don't get me wrong, I was worried abut the money, and I was hurt by their timing, and by their halfhearted words of support. But on the other hand, I had a more immediate problem to concentrate on----not puking."

Just hang in, and you'll be fine. Best to you and your family.

Hal61