squamous cell carcinoma of maxillary sinus

TR2

I had radical surgery on June 9, 2008 that removed parts of the following on the left cheek
Eye orb
nose
cheek bone
upper jaw
hard palate
sinus
nerve
Wondering how long the ache in the eye muscle will continue and the pain at surgery site.
Will not be having radiation treatment.
I have been treating with Ratio-oxycocet 5mg-325mg oxycodone hcl/acetaminophen. 2 pills in morning and 2 more at 4 hr. increments and 1 extra strength advil.
I have had the mouth prothesis made so I can talk and eat but it has been causing pain despite weekly adjustments.
I have little energy and can only work for half a day before I have to have a 1 or 2 hour rest after lunch.
Bye the way I am a 74 year old man that is still working. (on the freedom 85 retirement plan)
Before I had cancer I was very healthy and worked full time and find it difficult to adjust to the change that has occurred since my operation.
I am looking for anyone with simmilar experiences to get suggestions on different ways to handle the pain and medications.

bany

hi dad :P i would also like
hi dad :P i would also like to introduce myself, i am TR2's daughter. I am hoping to find people to discuss the problems my father has been facing these past 5 months, to hear other experiences that might help my mom and dad adjust to the drastic changes cancer has brought to our lives.

creampuff

sir
my brother had the same thing you have......they had took out his left eye and cheek and partof of the roof of his mouth ect...... when he went in to get the reconsturtion surgery(march 2008) they told him he wouldnt make it till x-mas... they had hospice come in and and my brother got mixed up on meds and hospice took him to the facility and he was there for about three days and they told us then (april 2008) three days to one week tops that his cancer prgressed that quick.. my brother wanted to go home to die so i told the family he would get his wish and we took him out of the taylor house and took him home... I gave my brother Ensure Plus to drink cause his mouth hurts so bad that he couldnt eat.. i read on the Mangosteen Juice (you get it at GNC) and also was informed on line that someone else was terminal and had taken this and had no traces of cancer..so i got my brother on that as well.. (i also found out about shark cartledge is good for cancer too) I put my brother on Dan active Immunity drinks also.. and of coures my brother loves his beer so we made sure he didnt get anything light... he was down to 125-135 in weight so this is how i fattened him up.. we prayed for my brother to be healed also.. Gods Hand is in it all from the beginning...my brother is about 225 now i finally got someone to listen to me (Dec)and they gave him a new pet scan... they couldnt explain the scan.. his tumors in his legs was gone, the ones in his lungs was gone the ones in his throat and neck was gone.. he only had a trace in his left cheek area,, they now have him off hospice and he is no classified as no longer terminal and he goes in this feb to mayo for the surgery to remove and reconstrution of his face..i read about you and i thought it was odd tht you have the same thing as he does when this is considered so rare.. i do know they had him do follow up radiation treatments but he stopped those do to the sores in his throat and mouth that the radiation treaments made.. and that was in 2007... my god bless you as he did my brother...if you want to email me i am connibarr@msn.com

bany

creampuff said:

sir
my brother had the same thing you have......they had took out his left eye and cheek and partof of the roof of his mouth ect...... when he went in to get the reconsturtion surgery(march 2008) they told him he wouldnt make it till x-mas... they had hospice come in and and my brother got mixed up on meds and hospice took him to the facility and he was there for about three days and they told us then (april 2008) three days to one week tops that his cancer prgressed that quick.. my brother wanted to go home to die so i told the family he would get his wish and we took him out of the taylor house and took him home... I gave my brother Ensure Plus to drink cause his mouth hurts so bad that he couldnt eat.. i read on the Mangosteen Juice (you get it at GNC) and also was informed on line that someone else was terminal and had taken this and had no traces of cancer..so i got my brother on that as well.. (i also found out about shark cartledge is good for cancer too) I put my brother on Dan active Immunity drinks also.. and of coures my brother loves his beer so we made sure he didnt get anything light... he was down to 125-135 in weight so this is how i fattened him up.. we prayed for my brother to be healed also.. Gods Hand is in it all from the beginning...my brother is about 225 now i finally got someone to listen to me (Dec)and they gave him a new pet scan... they couldnt explain the scan.. his tumors in his legs was gone, the ones in his lungs was gone the ones in his throat and neck was gone.. he only had a trace in his left cheek area,, they now have him off hospice and he is no classified as no longer terminal and he goes in this feb to mayo for the surgery to remove and reconstrution of his face..i read about you and i thought it was odd tht you have the same thing as he does when this is considered so rare.. i do know they had him do follow up radiation treatments but he stopped those do to the sores in his throat and mouth that the radiation treaments made.. and that was in 2007... my god bless you as he did my brother...if you want to email me i am connibarr@msn.com

hi creampuff, thank you for
hi creampuff, thank you for responding to my dad. it is very reassuring to hear how well your brother is doing. thanks for sharing all this information. i will pass it along to him.

my dad hasn't been doing well and is not checking this forum. he had a biopsy in dec. which came back positive that the cancer has returned. it is pressing on the nerves of his face and pain management has been difficult. the doctors at the pain management clinic have been trying many different drugs and we're hopeful this latest one seems to be providing him some relief yesterday.

this past week has been full of ct scans, mri's and having moulds made in preparation for radiation. which we are hoping will begin this week. the cancer is growing so rapidly, his pain has been unbearable. we are anxiously waiting the results of the tests because if it has spread, they say that they will stop the radiation.

his doctors say that chemo isn't commonly used for this type of cancer, but offered it to him if he wanted, he declined, wanting to keep his strength for the radiation as this appears to be his best option. i've been reading through so many people's experiences on this forum and i want to thank you. i bought biotene mouthwash yesterday in preparation for the radiation and he used it because he still has sores in his mouth and is unable to use his prothsesis. the mouthwash provided immediate relief, he loves it!

i read some studies that show a drug called erbitux has been approved for head and neck cancer since 2007. i haven't seen any reference to it here and was wondering if anyone has been treated with it? it is commonly used in combination with chemo in cases where the cancer has re-occurred or metastisized. it is supposed to bind to the cancer cells and inhibit their growth.

elaine

hunpot

bany said:

hi creampuff, thank you for
hi creampuff, thank you for responding to my dad. it is very reassuring to hear how well your brother is doing. thanks for sharing all this information. i will pass it along to him.

my dad hasn't been doing well and is not checking this forum. he had a biopsy in dec. which came back positive that the cancer has returned. it is pressing on the nerves of his face and pain management has been difficult. the doctors at the pain management clinic have been trying many different drugs and we're hopeful this latest one seems to be providing him some relief yesterday.

this past week has been full of ct scans, mri's and having moulds made in preparation for radiation. which we are hoping will begin this week. the cancer is growing so rapidly, his pain has been unbearable. we are anxiously waiting the results of the tests because if it has spread, they say that they will stop the radiation.

his doctors say that chemo isn't commonly used for this type of cancer, but offered it to him if he wanted, he declined, wanting to keep his strength for the radiation as this appears to be his best option. i've been reading through so many people's experiences on this forum and i want to thank you. i bought biotene mouthwash yesterday in preparation for the radiation and he used it because he still has sores in his mouth and is unable to use his prothsesis. the mouthwash provided immediate relief, he loves it!

i read some studies that show a drug called erbitux has been approved for head and neck cancer since 2007. i haven't seen any reference to it here and was wondering if anyone has been treated with it? it is commonly used in combination with chemo in cases where the cancer has re-occurred or metastisized. it is supposed to bind to the cancer cells and inhibit their growth.

elaine

erbitux
my mom had erbitux with radiation, it has lesser side effects then regualr chemo. It really didnt make her weak (a littel tired but nothing unordinary) or sick and she didnt lose any hair howerver in her case neither radiation nor erbitux worked cancer had only shrunk down maybe 1" so they had to do surgery. Not sure exactly what her dose was but i know it was a small amount she only weighed 90lbs it does vary per individual but thought i would share with you about side effects and feelings during the erbitux. Hopefully will do with your dad best of luck.

bany

hunpot said:

erbitux
my mom had erbitux with radiation, it has lesser side effects then regualr chemo. It really didnt make her weak (a littel tired but nothing unordinary) or sick and she didnt lose any hair howerver in her case neither radiation nor erbitux worked cancer had only shrunk down maybe 1" so they had to do surgery. Not sure exactly what her dose was but i know it was a small amount she only weighed 90lbs it does vary per individual but thought i would share with you about side effects and feelings during the erbitux. Hopefully will do with your dad best of luck.

thank you tracy, it's good
thank you tracy, it's good to know your mom didn't have bad side effects, some of the warnings don't sound very promising. dad is going to ask about using this drug if the tests show the cancer has spread. hopefully it will work for him. thanks for sharing your experience.

elaine

RedE2NJoy

bany said:

thank you tracy, it's good
thank you tracy, it's good to know your mom didn't have bad side effects, some of the warnings don't sound very promising. dad is going to ask about using this drug if the tests show the cancer has spread. hopefully it will work for him. thanks for sharing your experience.

elaine

new here
hi all....
I am new to this site, but have recently finished surgery, chemo and radiation treatments for squamous cell carcinoma of maxillary sinus here in Salem, Oregon. Finding this site hosting others with the same type of cancer is encouraging as four Dr's have told me how rare the cancer is and I have not had good luck getting much info online.

Guess I should start by saying the diagnosis came in February. Surgery to remove about half of the hard pallet, a portion of my right cheek bone, a great deal of tissue and muscle from the right cheek and 13 lumps and the lymph node from the right side of my neck. I did 32 radiation treatments and 7 chemo treatments (cysplatin--spelling???)in May and June.
I will have another PET scan in a week or so to serve as a 'base scan' to see how things look in another six months or so.

I was fortunate enough to push through the swallowing difficuties and by coating my mouth and tongue with the painkilling oncology mouthwash and drinking several Carnation Instant Breakfast VHC throughout the day, I managed to forgo the feeding tube. I lost about 35 pounds during treatment, but just recently started eating more soft foods.

The tongue is still RAW feeling and the taste buds are pretty not working, but I can take small bites and do fairly well. Between the surgery (and the amount of muscle/tissue removed from the cheek) and the radiation which causes shrinkage, I can still only open my mouth about 13 mm--'normal' is more like 50mm--so I am limited as to what I can get into my mouth to chew.

NOT complaining, just reviewing the situation which seems frustrating at times. All in all, I had a great staff of medical professionals and equally important a great support system of family and friends who offered up all sorts of prayer and positive support.

I am not sure if this will get posted for all to read or just as a reply to Tracy as I am new and not sure what I am doing. My goal, to use the site to learn and/or share experiences to make things easier for all of us.

Peace and better health for all....
John

Ecclesiastes3

RedE2NJoy said:

new here
hi all....
I am new to this site, but have recently finished surgery, chemo and radiation treatments for squamous cell carcinoma of maxillary sinus here in Salem, Oregon. Finding this site hosting others with the same type of cancer is encouraging as four Dr's have told me how rare the cancer is and I have not had good luck getting much info online.

Guess I should start by saying the diagnosis came in February. Surgery to remove about half of the hard pallet, a portion of my right cheek bone, a great deal of tissue and muscle from the right cheek and 13 lumps and the lymph node from the right side of my neck. I did 32 radiation treatments and 7 chemo treatments (cysplatin--spelling???)in May and June.
I will have another PET scan in a week or so to serve as a 'base scan' to see how things look in another six months or so.

I was fortunate enough to push through the swallowing difficuties and by coating my mouth and tongue with the painkilling oncology mouthwash and drinking several Carnation Instant Breakfast VHC throughout the day, I managed to forgo the feeding tube. I lost about 35 pounds during treatment, but just recently started eating more soft foods.

The tongue is still RAW feeling and the taste buds are pretty not working, but I can take small bites and do fairly well. Between the surgery (and the amount of muscle/tissue removed from the cheek) and the radiation which causes shrinkage, I can still only open my mouth about 13 mm--'normal' is more like 50mm--so I am limited as to what I can get into my mouth to chew.

NOT complaining, just reviewing the situation which seems frustrating at times. All in all, I had a great staff of medical professionals and equally important a great support system of family and friends who offered up all sorts of prayer and positive support.

I am not sure if this will get posted for all to read or just as a reply to Tracy as I am new and not sure what I am doing. My goal, to use the site to learn and/or share experiences to make things easier for all of us.

Peace and better health for all....
John

Thank you.
Ive been researching again on my dad's cancer. I thank everyone's posts here and hope that my post will be helpfull to someone out there.
My dad is 70 years old. He had nasopharynx cancer 40 years ago. He was treated in asia with radiation ( There was no records of where he was radiated ).
My dad started to get nose bleeds pretty frequent. About once a week, usually when he bends down.
Most the doctors said , it was just dryness from his previous radiation.
But then, he went for a biopsy, and surely enough it was a new cancer squamous cell carcinoma (maxillary sinus cancer ).
- He was treated with radiation and chemo.
- After this his diet was still "some" meat...
-About a year later. He started to get nose bleeds again. The doctor gave him 6-12 months if he didnt do the surgery . His surgery was a 6 hours. I forgot what the procedure was called, but its where they cut him from the eyes -> nose line -> upper lip.
The size of the cancer was about the size of an egg. ( This was in late 2008 ).

One day, he was seeing double, so we went to the er ( memorial sloan kettering - this is where he is being treated - ) - The doctor on the er and the scan said that the cancer went to his brain.
"Oh My God"!! Dad has been through so much via surgery, and to have it sneak up to his brain! WTF!
Me and Mom Prayed so hard that night !!! Only a miracle can save my father.
After a week of being in the hospital, they said , yes there is a tumor in his brain. But they are not sure - and its not worth for a biopsy. They ruled it as radiation necrosis. A miracle did happen.

Dec- Jan ( current )- They saw something in the scan just recently, Dad went for a biopsy again. Sure enough. It was back. This time , the surgeon said he cant get it. Gives him an average of one year.
Dad's diet is congee. He has no taste in his mouth. He cant see too well. He cant really hear from one ear.
He eats raw veggies ( Grid up / Wheat Grass Also ).
Radiation , I dont think its an option, since its too close to his eyes. His eye is puffy, cause the liquid collects there, since the cancer is blocking its path...

Are there any options ? Stem cell ? Is it worth to try it and goto asian ,since maxillary nose cancer is common amongs asian population?
I know we are at the best care possible ( memorial sloan kettering nyc ) !!!

- Any Advise Anyone?

Hondo

Ecclesiastes3 said:

Thank you.
Ive been researching again on my dad's cancer. I thank everyone's posts here and hope that my post will be helpfull to someone out there.
My dad is 70 years old. He had nasopharynx cancer 40 years ago. He was treated in asia with radiation ( There was no records of where he was radiated ).
My dad started to get nose bleeds pretty frequent. About once a week, usually when he bends down.
Most the doctors said , it was just dryness from his previous radiation.
But then, he went for a biopsy, and surely enough it was a new cancer squamous cell carcinoma (maxillary sinus cancer ).
- He was treated with radiation and chemo.
- After this his diet was still "some" meat...
-About a year later. He started to get nose bleeds again. The doctor gave him 6-12 months if he didnt do the surgery . His surgery was a 6 hours. I forgot what the procedure was called, but its where they cut him from the eyes -> nose line -> upper lip.
The size of the cancer was about the size of an egg. ( This was in late 2008 ).

One day, he was seeing double, so we went to the er ( memorial sloan kettering - this is where he is being treated - ) - The doctor on the er and the scan said that the cancer went to his brain.
"Oh My God"!! Dad has been through so much via surgery, and to have it sneak up to his brain! WTF!
Me and Mom Prayed so hard that night !!! Only a miracle can save my father.
After a week of being in the hospital, they said , yes there is a tumor in his brain. But they are not sure - and its not worth for a biopsy. They ruled it as radiation necrosis. A miracle did happen.

Dec- Jan ( current )- They saw something in the scan just recently, Dad went for a biopsy again. Sure enough. It was back. This time , the surgeon said he cant get it. Gives him an average of one year.
Dad's diet is congee. He has no taste in his mouth. He cant see too well. He cant really hear from one ear.
He eats raw veggies ( Grid up / Wheat Grass Also ).
Radiation , I dont think its an option, since its too close to his eyes. His eye is puffy, cause the liquid collects there, since the cancer is blocking its path...

Are there any options ? Stem cell ? Is it worth to try it and goto asian ,since maxillary nose cancer is common amongs asian population?
I know we are at the best care possible ( memorial sloan kettering nyc ) !!!

- Any Advise Anyone?

Hi Ecclesiastes3
Welcome to CSN.

Sounds like your dad has been through a lot, there are some alternative medicines that you can try but only when the doctors give up, it has been working for me but can’t say it will work for anyone else. I will keep you and your Father in my prayers.

God bless you, take care of your dad, God will reward you for your love