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Mucoepidermoid Carcinoma

TracyLynn72's picture
TracyLynn72
Posts: 744
Joined: May 2013

Those two words ROCKED my world back in January.  I ignored what my dentist said was an abscess tooth and ended up having a 4cm tumor IN my lower left jaw.  They did surgery (5 hours) on March 6th to remove a large portion of my jaw and the tumor.  I had drainage tubes, feeding tube, 50 staples, IVs everywhere they could find a willing vein, and felt like I had hit by a very large truck.  One week later, with all tubes removed and looking/feeling much more human, my pathology report came back that my margins were not clear.  They went back in March 15th and removed my left "hinge" and the rest of my lower left jaw.  40 more staples, more drainage tubes, Ivs, etc...I did finally receive clear margins...praise God! However, with the first surgery not resulting with good results, they wanted me to have 30 rounds of radiation as a precaution.  I'm halfway through the radiation and it has been harder than recovery from surgery!  The spit, coughing, gagging, and mouth sores are a LOT more than I had bargained for!  I'm very thankful to be alive, very thankful to have a loving family and awesome friends that have supported me, and now very thankful to have found this site. I hate, hate, hate going to the dentist and that's why this went so long without being detected.  I urge everyone I know to GO to the doctor and dentist regularly and to NOT smoke.  I smoked and liked it off and on for 10 years.  The worst part is my husband and I both work but our employers do not offer ANY benefits.  So, I'm sitting at about $110k in medical bills right now (before radiology's bill).  It's been a CRAZY year so far!!  God has certainly used this to work in my life and He has brought me through a lot of pain and humility. 

 

Anyone else had MEC? 

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

TracyLynn,

My cancer was not MEC, but instead stage Iva, scc, bot,1-lymph node, hpv+ (suregery, rads & Erbitux) and I was hit by a pick-up not a very large truck. I am sorry you have had your butt kicked and handed to you.

You are right about going to the dentists, if they are worth their salt, they can help in early detection (some cases) and not smoking, enough said.  I on the other hand am hpv+ which might require a different warning.

You are half way through rads so you are most  the way there. If you have any particular questions just ask and if you want to vent, just blow away.  As you know keep swallowing and stay hydrated.

Hoping for some calm,

Matt

TracyLynn72's picture
TracyLynn72
Posts: 744
Joined: May 2013

Thank you for your reply!  This has been WAY more intense than I was prepared for and I'm trying to learn/do all I can.  

 

I've always had a high pain tolerance and not really a "crier", let me tell you...I've cried more in the last 5 months than I have in all 40 years of my life combined.  I can see the light at the end of the tunnel, though, and I'm fighting on!!

 

Do you think it's realistic to make it through all 6 weeks of rads with no feeding tube?  I'm not afraid of one..just curious. 

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

I think the split here is about 50-50.  I personally have been through radiation twice, without a feeding tube either time. 

 

Pat

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Hi TracyLynn,

I made it through 6 weeks without a tube but unfortunately, the last few weeks kicked my tush and I lost too much weight. I finished treatment the morning of April 24th and was getting a PEG put in that afternoon. I needed it too! I was behind the eight ball with nutrition and hydration and was unable to eat anything by mouth and could barely swallow. 

Now, 4 weeks out of treatment I'm doing better and supplementing the tube feedings with soft foods. 

"T"

TracyLynn72's picture
TracyLynn72
Posts: 744
Joined: May 2013

They are checking my weight 3 times a week and last week I lost 4lbs.  He gave me the "look" and shook his head. I'm trying, but everything tastes like snot.  Gross, I know, but true.  My taste buds aren't working and so everything seems nasty.  I'm able to eat some soups, jello, milkshakes and that's about it.  I'm trying to do Boost and Ensure, but like with the milkshakes, the milky type things seem to thicken my saliva up even more.  I'm drinking a TON of water everyday and have no issues swallowing...it's just finding things that don't make my stomach turn. I have 3 weeks to go and if I were to lose 12 more lbs it wouldn't be the end of the world...I've got 10-15 I could spare, but I know he's concerned about nutrition more than anything. 

 

Thank you all for the replies! 

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

TracyLynn,

I had 2 PEGs installed; the first was a b _ _ch, the second ok.  I always managed to drink one meal a day the rest drip, drip, drip.  Looking back, the PEG did make taking pills easier, but I may have gotten by without.  Heck, the H&N forum had me all prepared (and scared).  You just don’t know how bad you are going to be.  Many people wait till the last minute quite successfully.

I lost 45 pounds all together, what a diet.

Matt

DCH21
Posts: 33
Joined: Mar 2013

Hi TracyLynn !

Do you have a peg tube or did you decide against it ?

 

DennisSmile

TracyLynn72's picture
TracyLynn72
Posts: 744
Joined: May 2013

They haven't mentioned one to me yet.  They're watching my weight, though and are concerned that I'm not eating enough. 

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