Mucoepidermoid carcinoma (left hard palate, intermediate grade)
Comments
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MEC, too
I had MEC at the left base of my tongue, diagnosed almost exactly three years ago. While it is rare, the docs all handled it like SCC and things have turned out OK for me. The chemo and radiation treatments appear to be similar to those for SCC, as was the recovery sequence and overall experience. My MEC responded well, and quickly, to the treatments and I've been NED since. So, while our cancer cells are/were different than most on this list, I would recommend that you follow the threads and ask the same questions as the SCC patients and survivors.
There is a wealth of information on this site, so you might want to trace some of threads to get caught up. Sweetblood22 has a great compilation of FAQs in her Superthread that you can find pretty easily.
Good luck with your treatments and come back here often for information, advice, and support.
Mike0 -
Welcome....
Sorry for your situation, and I can't offer you any information on your particulars (I had STGII Tonsil Cancer). But I can offer my thoughts and prayers and welcome you to the forum.
Here's the link to the SuperThread that Dawn has compiled the many contributions from several other forum members;
SUPERTHREAD
Best,
John0 -
Thank you ;-)Skiffin16 said:Welcome....
Sorry for your situation, and I can't offer you any information on your particulars (I had STGII Tonsil Cancer). But I can offer my thoughts and prayers and welcome you to the forum.
Here's the link to the SuperThread that Dawn has compiled the many contributions from several other forum members;
SUPERTHREAD
Best,
John
Thank you ;-)0 -
Thank you ;-)Mikemetz said:MEC, too
I had MEC at the left base of my tongue, diagnosed almost exactly three years ago. While it is rare, the docs all handled it like SCC and things have turned out OK for me. The chemo and radiation treatments appear to be similar to those for SCC, as was the recovery sequence and overall experience. My MEC responded well, and quickly, to the treatments and I've been NED since. So, while our cancer cells are/were different than most on this list, I would recommend that you follow the threads and ask the same questions as the SCC patients and survivors.
There is a wealth of information on this site, so you might want to trace some of threads to get caught up. Sweetblood22 has a great compilation of FAQs in her Superthread that you can find pretty easily.
Good luck with your treatments and come back here often for information, advice, and support.
Mike
Thank you ;-)0 -
MECShemika said:Thank you ;-)
Thank you ;-)
Hi Shemika, and sorry about your diagnosis. I too have it and just had my second surgery on my neck to remove a positive lymph node. Mine was on the base of my tongue but yours is not unheard of. I have read about others with the same location so they will chime in later I hope.
Your doctor probably already told you that Mucoepidermoid Carcinoma is a rare one and there isn't enough information to suggest the most successful therapy. I tried to stick with the most traditional treatment as was suggested by my surgeon. So far I've had two surgeries and am facing the last part of radiation. Low dose because the cancerous areas were surgically removed. Others elect to have chemo and radiation to shrink the tumors and other areas of disease.
Welcome here. This is a group no one wants to join because the cost of admission is high. But you will find lots of support and information here.
Hope all goes well for you. I was told MEC is one of the cancers that respond well to treatment. At least you got that.
Tommy0 -
Thank you ;-)tommyodavey said:MEC
Hi Shemika, and sorry about your diagnosis. I too have it and just had my second surgery on my neck to remove a positive lymph node. Mine was on the base of my tongue but yours is not unheard of. I have read about others with the same location so they will chime in later I hope.
Your doctor probably already told you that Mucoepidermoid Carcinoma is a rare one and there isn't enough information to suggest the most successful therapy. I tried to stick with the most traditional treatment as was suggested by my surgeon. So far I've had two surgeries and am facing the last part of radiation. Low dose because the cancerous areas were surgically removed. Others elect to have chemo and radiation to shrink the tumors and other areas of disease.
Welcome here. This is a group no one wants to join because the cost of admission is high. But you will find lots of support and information here.
Hope all goes well for you. I was told MEC is one of the cancers that respond well to treatment. At least you got that.
Tommy
Thank you ;-)0 -
Hi Shemika
Again - sorry you need the site - glad you found it. you'll find that most of us here have some variation of one of a few treatment plans. I had SCC (base of tongue with two lymph nodes involved). My treatment started with open biopsies, tonsillectomy, then induction chemo with three chemo drugs(three rounds over a nine week period). Next came installation of a stomach feeding tube. This was followed by seven weeks of radiation and chemo (a single drug this time - seven smaller weekly doses), later removal of feeding tube and finished up with a modified radical neck dissection (removal of lymph nodes from the right side of my neck). The drugs I had were Cisplatin, Taxotere, 5FU and Carboplatin. Our experiences here run the gamut anywhere between "felt tired and a little ill and sore throat and felt like a bad sunburn for a while, but worked full time throughout treatment" to "absolutely horrible - I thought about quitting". I'm sure more folks (who have a diagnosis more similar to yours than mine) will be chiming in soon. Do well, and keep us posted.
- Pam0 -
Thank you ;-)Pam M said:Hi Shemika
Again - sorry you need the site - glad you found it. you'll find that most of us here have some variation of one of a few treatment plans. I had SCC (base of tongue with two lymph nodes involved). My treatment started with open biopsies, tonsillectomy, then induction chemo with three chemo drugs(three rounds over a nine week period). Next came installation of a stomach feeding tube. This was followed by seven weeks of radiation and chemo (a single drug this time - seven smaller weekly doses), later removal of feeding tube and finished up with a modified radical neck dissection (removal of lymph nodes from the right side of my neck). The drugs I had were Cisplatin, Taxotere, 5FU and Carboplatin. Our experiences here run the gamut anywhere between "felt tired and a little ill and sore throat and felt like a bad sunburn for a while, but worked full time throughout treatment" to "absolutely horrible - I thought about quitting". I'm sure more folks (who have a diagnosis more similar to yours than mine) will be chiming in soon. Do well, and keep us posted.
- Pam
Thank you ;-)0 -
Shemika
I didn't have your cancer, i had SCC, so i have no info for you directly, but, I spent a bit trying to round up some MEC info from past threads, that might be helpful to you. Not sure if you have done any searches or read any past threads. Thought these might be helpful:
mucoepidermoid carcinima
MEC Phase Two
Tonsil cancer-Mucoepidermold carcinoma
Another Mucoepidermoid Carcinoma
Just diagnosed with mucoepidermoid on the upper left palate
Mucoepidermoid Carcinoma (150014)
Mucoepidermoid Carcinoma (203632)0 -
Thank you so much for thesweetblood22 said:Shemika
I didn't have your cancer, i had SCC, so i have no info for you directly, but, I spent a bit trying to round up some MEC info from past threads, that might be helpful to you. Not sure if you have done any searches or read any past threads. Thought these might be helpful:
mucoepidermoid carcinima
MEC Phase Two
Tonsil cancer-Mucoepidermold carcinoma
Another Mucoepidermoid Carcinoma
Just diagnosed with mucoepidermoid on the upper left palate
Mucoepidermoid Carcinoma (150014)
Mucoepidermoid Carcinoma (203632)
Thank you so much for the links. ;-)0 -
messageShemika said:Thank you so much for the
Thank you so much for the links. ;-)
shemika, I sent you a message with some basic info. I am not on here very much any more, but I will try to check it a little more often in case you have any questions about MEC (Mucoepidermoid Carcinoma). This time of waiting is the tough part. waiting for the tests to be run, waiting for the results, waiting to see what the doctor(s) recommend. However, once the decisions are made it gets easier...because then you can fight. There may be pain, there may be discomfort...but it is pain with an end, when it will be over. There will be a point when you will smile, when you will laugh, when you will live without thinking about cancer. those are the moments to fight for. Huge Hugs to you!0 -
Ekdennieekdennie said:message
shemika, I sent you a message with some basic info. I am not on here very much any more, but I will try to check it a little more often in case you have any questions about MEC (Mucoepidermoid Carcinoma). This time of waiting is the tough part. waiting for the tests to be run, waiting for the results, waiting to see what the doctor(s) recommend. However, once the decisions are made it gets easier...because then you can fight. There may be pain, there may be discomfort...but it is pain with an end, when it will be over. There will be a point when you will smile, when you will laugh, when you will live without thinking about cancer. those are the moments to fight for. Huge Hugs to you!
Good to see you post. Hope you, hubby and kidlets are all well. You are my go to person when someone needs info on MEC, I refer them to your very clear, and useful posts. Be well!0 -
Mucoepidermoid carcinoma
Hi Shemika,
I also was diagnosed with an intermediate grade mucoepidermoid which presented in my left palate in March 2010. I know our cancer is a rare one and there aren't that many of us around, but I wanted you to know that you are not alone in this. Please feel free to contact me at any time!0 -
Mucoepidermoid carcinomashellef said:Mucoepidermoid carcinoma
Hi Shemika,
I also was diagnosed with an intermediate grade mucoepidermoid which presented in my left palate in March 2010. I know our cancer is a rare one and there aren't that many of us around, but I wanted you to know that you are not alone in this. Please feel free to contact me at any time!
Thank you for sharing your story with me. I'm sorry that you have to go through this. Do you still have a whole in the roof of your mouth? I'm two weeks and one day out from surgery and I am having the worst time trying to get fluids down because I can't get used to the fluids going in my nose. I have lost 19 pounds since the surgery which is one of the pluses for me ;-) but I can't wait to be done with all of this. It's just really hard for me right now. Yes the cancer is out of my mouth but the recovery period is kicking my butt. At first they told me that my cancer was intermediate but then they told me that it was low grade I didn't read my final path report I'm just going on what the doctor told me. He also said that I didn't need any radiation, so that's good, but like I said earlier this recovery period is kicking my butt. What kinds of foods were you able to eat. I'm drinking Ensure Immunity Boost, eating jello, applesauce, and pudding.I find that I can't eat or drink anything too cold, like ice cream right now. So do you were an obturator if so How long after your surgery were you able to start wearing it? Before all of this happened I already spoke kind of like somebody was pinching my nose and now Oh my nobody hardly understands anything that I'm saying and that frustrating me. The flap that they tried to create to cover the hole in the roof of my mouth failed so the hole is mostly open and fluids gets into my nasal cavity every time I try to drink something, so I drink from a straw a little bit at a time. I started to get a little depressed about the whole situation. I had to tell the people that I be around that they just don't fully understand what I'm going through. Maybe everything will get better for me soon. Again thanks for replying to my post.0 -
Jumping in hereShemika said:Mucoepidermoid carcinoma
Thank you for sharing your story with me. I'm sorry that you have to go through this. Do you still have a whole in the roof of your mouth? I'm two weeks and one day out from surgery and I am having the worst time trying to get fluids down because I can't get used to the fluids going in my nose. I have lost 19 pounds since the surgery which is one of the pluses for me ;-) but I can't wait to be done with all of this. It's just really hard for me right now. Yes the cancer is out of my mouth but the recovery period is kicking my butt. At first they told me that my cancer was intermediate but then they told me that it was low grade I didn't read my final path report I'm just going on what the doctor told me. He also said that I didn't need any radiation, so that's good, but like I said earlier this recovery period is kicking my butt. What kinds of foods were you able to eat. I'm drinking Ensure Immunity Boost, eating jello, applesauce, and pudding.I find that I can't eat or drink anything too cold, like ice cream right now. So do you were an obturator if so How long after your surgery were you able to start wearing it? Before all of this happened I already spoke kind of like somebody was pinching my nose and now Oh my nobody hardly understands anything that I'm saying and that frustrating me. The flap that they tried to create to cover the hole in the roof of my mouth failed so the hole is mostly open and fluids gets into my nasal cavity every time I try to drink something, so I drink from a straw a little bit at a time. I started to get a little depressed about the whole situation. I had to tell the people that I be around that they just don't fully understand what I'm going through. Maybe everything will get better for me soon. Again thanks for replying to my post.
Hi shemika,
Although I don't have MEC, I've been through the process of radical surgery of the mouth, complete with tracheostomy, feeding tube, extensive vascular grafting, etc, and have had radiation to the mouth/throat area twice. The most recent radiation ended just a few days ago, and was for a carcinoma involving the soft palate.
Ive had a lot of feeding problems in the last year, including the "everything runs out my nose" routine. So I'm qualified to say I can identify with your frustrations.
Having said that, I'm next going to tell you that you need to be very patient with yourself. These problems are there to be solved, and they will be solved. Just not as quickly as you would wish. There's lots of healingto do yet, then things won't be so dang sore, and you won't be so temperature sensitive, and your swallowing mechanism will react better.
Then you will have to retrain your swallowing mechanism. A lot of what used to go out my nose no longer does, and it is because I changed the mechanics of swallowing. Don't ask me to describe to you exactly what I did, because I don't think I can do that in type. But I did gradually solve this problem. It took months of practice. This time I didn't use a speech pathologist to help me, but I have in the past for this type of thing.
They will figure out the obturator thing for you, and that will be the gold medal solution. Your speech will improve, but right now it is what it is. Heck, with this last radiation, I've sounded like an absolute idiot for the last, oh, 6 weeks, and until the swelling goes down (i hope it does go down), that's just me. Frustrating sometimes, like trying today to tell the guy at Home Depot about a special part I needed:)
Its all good. You've won the most important battle. You got the cancer out with a good prognosis. The rest of this is going to take time. Be kind to yourself.
And get enough calories in to stay sane.
Pat0 -
Sorry to hear about yourlongtermsurvivor said:Jumping in here
Hi shemika,
Although I don't have MEC, I've been through the process of radical surgery of the mouth, complete with tracheostomy, feeding tube, extensive vascular grafting, etc, and have had radiation to the mouth/throat area twice. The most recent radiation ended just a few days ago, and was for a carcinoma involving the soft palate.
Ive had a lot of feeding problems in the last year, including the "everything runs out my nose" routine. So I'm qualified to say I can identify with your frustrations.
Having said that, I'm next going to tell you that you need to be very patient with yourself. These problems are there to be solved, and they will be solved. Just not as quickly as you would wish. There's lots of healingto do yet, then things won't be so dang sore, and you won't be so temperature sensitive, and your swallowing mechanism will react better.
Then you will have to retrain your swallowing mechanism. A lot of what used to go out my nose no longer does, and it is because I changed the mechanics of swallowing. Don't ask me to describe to you exactly what I did, because I don't think I can do that in type. But I did gradually solve this problem. It took months of practice. This time I didn't use a speech pathologist to help me, but I have in the past for this type of thing.
They will figure out the obturator thing for you, and that will be the gold medal solution. Your speech will improve, but right now it is what it is. Heck, with this last radiation, I've sounded like an absolute idiot for the last, oh, 6 weeks, and until the swelling goes down (i hope it does go down), that's just me. Frustrating sometimes, like trying today to tell the guy at Home Depot about a special part I needed:)
Its all good. You've won the most important battle. You got the cancer out with a good prognosis. The rest of this is going to take time. Be kind to yourself.
And get enough calories in to stay sane.
Pat
Sorry to hear about your situation and thanks for replying to my post.0 -
Sorry to hear about yourlongtermsurvivor said:Jumping in here
Hi shemika,
Although I don't have MEC, I've been through the process of radical surgery of the mouth, complete with tracheostomy, feeding tube, extensive vascular grafting, etc, and have had radiation to the mouth/throat area twice. The most recent radiation ended just a few days ago, and was for a carcinoma involving the soft palate.
Ive had a lot of feeding problems in the last year, including the "everything runs out my nose" routine. So I'm qualified to say I can identify with your frustrations.
Having said that, I'm next going to tell you that you need to be very patient with yourself. These problems are there to be solved, and they will be solved. Just not as quickly as you would wish. There's lots of healingto do yet, then things won't be so dang sore, and you won't be so temperature sensitive, and your swallowing mechanism will react better.
Then you will have to retrain your swallowing mechanism. A lot of what used to go out my nose no longer does, and it is because I changed the mechanics of swallowing. Don't ask me to describe to you exactly what I did, because I don't think I can do that in type. But I did gradually solve this problem. It took months of practice. This time I didn't use a speech pathologist to help me, but I have in the past for this type of thing.
They will figure out the obturator thing for you, and that will be the gold medal solution. Your speech will improve, but right now it is what it is. Heck, with this last radiation, I've sounded like an absolute idiot for the last, oh, 6 weeks, and until the swelling goes down (i hope it does go down), that's just me. Frustrating sometimes, like trying today to tell the guy at Home Depot about a special part I needed:)
Its all good. You've won the most important battle. You got the cancer out with a good prognosis. The rest of this is going to take time. Be kind to yourself.
And get enough calories in to stay sane.
Pat
Sorry to hear about your situation and thanks for replying to my post.0 -
Mucoepidermoid carcinomalongtermsurvivor said:Jumping in here
Hi shemika,
Although I don't have MEC, I've been through the process of radical surgery of the mouth, complete with tracheostomy, feeding tube, extensive vascular grafting, etc, and have had radiation to the mouth/throat area twice. The most recent radiation ended just a few days ago, and was for a carcinoma involving the soft palate.
Ive had a lot of feeding problems in the last year, including the "everything runs out my nose" routine. So I'm qualified to say I can identify with your frustrations.
Having said that, I'm next going to tell you that you need to be very patient with yourself. These problems are there to be solved, and they will be solved. Just not as quickly as you would wish. There's lots of healingto do yet, then things won't be so dang sore, and you won't be so temperature sensitive, and your swallowing mechanism will react better.
Then you will have to retrain your swallowing mechanism. A lot of what used to go out my nose no longer does, and it is because I changed the mechanics of swallowing. Don't ask me to describe to you exactly what I did, because I don't think I can do that in type. But I did gradually solve this problem. It took months of practice. This time I didn't use a speech pathologist to help me, but I have in the past for this type of thing.
They will figure out the obturator thing for you, and that will be the gold medal solution. Your speech will improve, but right now it is what it is. Heck, with this last radiation, I've sounded like an absolute idiot for the last, oh, 6 weeks, and until the swelling goes down (i hope it does go down), that's just me. Frustrating sometimes, like trying today to tell the guy at Home Depot about a special part I needed:)
Its all good. You've won the most important battle. You got the cancer out with a good prognosis. The rest of this is going to take time. Be kind to yourself.
And get enough calories in to stay sane.
Pat
Sorry to hear about your situation and thanks for replying to my post.0 -
holeShemika said:Mucoepidermoid carcinoma
Thank you for sharing your story with me. I'm sorry that you have to go through this. Do you still have a whole in the roof of your mouth? I'm two weeks and one day out from surgery and I am having the worst time trying to get fluids down because I can't get used to the fluids going in my nose. I have lost 19 pounds since the surgery which is one of the pluses for me ;-) but I can't wait to be done with all of this. It's just really hard for me right now. Yes the cancer is out of my mouth but the recovery period is kicking my butt. At first they told me that my cancer was intermediate but then they told me that it was low grade I didn't read my final path report I'm just going on what the doctor told me. He also said that I didn't need any radiation, so that's good, but like I said earlier this recovery period is kicking my butt. What kinds of foods were you able to eat. I'm drinking Ensure Immunity Boost, eating jello, applesauce, and pudding.I find that I can't eat or drink anything too cold, like ice cream right now. So do you were an obturator if so How long after your surgery were you able to start wearing it? Before all of this happened I already spoke kind of like somebody was pinching my nose and now Oh my nobody hardly understands anything that I'm saying and that frustrating me. The flap that they tried to create to cover the hole in the roof of my mouth failed so the hole is mostly open and fluids gets into my nasal cavity every time I try to drink something, so I drink from a straw a little bit at a time. I started to get a little depressed about the whole situation. I had to tell the people that I be around that they just don't fully understand what I'm going through. Maybe everything will get better for me soon. Again thanks for replying to my post.
I was able to be fit for a temporary obturator pretty quickly. you just need to get a referral from your oral surgeon or your ENT. I am so happy to hear that it was low grade! happy dance for you!
as for food and fluids up the nose, I still have some with my obturator, but it is better. I eat a lot of macaroni and cheese. nothing too hot or too cold. I also recommend using a lot of neil med sinus rinses after you eat to help keep your nasal cavities from getting infections. I take small sips of liquids and almost "toss" them towards the back of my throat when i eat or drink without my mouthpiece. I also always have tissue and paper towels with me when I eat. sometimes you can add a food thickener (available at a pharmacy) to your foods to make it easier to get more down. best of luck to you! HUGS!0 -
mucoepidermoid carcinomaekdennie said:message
shemika, I sent you a message with some basic info. I am not on here very much any more, but I will try to check it a little more often in case you have any questions about MEC (Mucoepidermoid Carcinoma). This time of waiting is the tough part. waiting for the tests to be run, waiting for the results, waiting to see what the doctor(s) recommend. However, once the decisions are made it gets easier...because then you can fight. There may be pain, there may be discomfort...but it is pain with an end, when it will be over. There will be a point when you will smile, when you will laugh, when you will live without thinking about cancer. those are the moments to fight for. Huge Hugs to you!
Hello ekdennie,
I was told that you could provide some information to me regarding MEC. My 25 year old sister was diagnosed in 2009 and the MEC has had a recurrence as of 6/30/12. She will be starting chemo very soon. What are some of the ways me and my family can help her feel comfortable during her chemo treatment? What helped you deal with your diagnosis. My sister is very quiet and doesn't talk much about it, but I can imagine she is freighted and scared.0
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