Long Term Survivors of Snuc

I am looking for people who are living with this cancer and have been successfully. I was diagnosed about a week ago and started treatment with chemo. I feel so hopeless because I cannot find long term survivors to talk with me. Gail R.

Please don't give up hope and continue to fight.

Hello.  My name is April, I am a member of a non profit organization called CaBRI in Ann Arbor, MI.  We are studying SNUC and attempting to learn as much as possible to ultimately determine an effective course of treatment.  Considering there are less than 100 people who have been diagnosed with SNUC at any given time, it is difficult to compile the data and to expect any major breakthroughs as quickly as more commonly known cancers is hopeful but not likely moreso because the larger well financed companies focus their efforts on more widespread types of cancers.  However, finding effective treatment for SNUC could very well have a positive effect on other types of cancers also.  CaBRI's parent company Cayman Chemical was devastated personally from the loss of an employee in 2006 from SNUC and the President of the company has made this a charity project of his in memory of Andrei.  Our goal is, as the case with all cancer, is to learn what course of treatment and the order in which it has been given to patients and to study biopsies and tissue samples.  If you'd like to learn more about us, please visit www.snuc.net.  I hope you are doing well and amidst what you and your family must be enduring, I am simply informing you that CaBRI has an open door to welcome you with utmost compassion and empathy if at any time your family feels they would like to collaborate with CaBRI to get educated.  Take Care.

My husband was just diagnosed with snuc 3 days ago. It is hard to be hopeful, but I have found some info that leads me to be hopeful.
We are in the U.P. of MI. I am very familiar with AA and U of M.
Thanks for the info and I will check out your website.
Kristina

My dad was just diagnosed and we are from lower michigan.   Can you tell me how things have gone for you?  What stage are you in?  What treatments?

My husband was diagnosed with SNUC of maxillary sinus in Jan. of 2008.  It was pretty advanced, but no METs or lymph node involvement.  He had 39 radiation treatments and 3 rounds of Cisplatin and 5FU over 3 months.  As of Sept 2008, his PET scan was clean.  I will not lie to you- the treatment was very rough.  He was extremely nauseated and had terrible sores in his mouth.  Lost over 40#- had a feeding tube inserted after he lost most of the weight.  Be sure to discuss having the feeding tube inserted early in course of treatment.  If he doesn't end up needing to use it, good, but at least it is there if needed. 

The main problems he is dealing with now are the side effects of chemo and radiation- dry mouth, things don't taste the same to him, some difficulty swallowing meat, tear ducts scarred from radiation, peripheral neuropathy-numbness in feet.

Reading about SNUC on the Internet is scary- it is such are rare cancer-we were told only about 100 cases diagnosed per year.

But as my husband says, he is still vertical!  Please feel free to ask any questions- I check this site often, so if you have any more questions as time goes on-please write.

Good luck to you both

Kathy

 

On 1/12/2009 scootie45 wrote:

My husband was diagnosed with SNUC of maxillary sinus in Jan. of 2008.  It was pretty advanced, but no METs or lymph node involvement.  He had 39 radiation treatments and 3 rounds of Cisplatin and 5FU over 3 months.  As of Sept 2008, his PET scan was clean.  I will not lie to you- the treatment was very rough.  He was extremely nauseated and had terrible sores in his mouth.  Lost over 40#- had a feeding tube inserted after he lost most of the weight.  Be sure to discuss having the feeding tube inserted early in course of treatment.  If he doesn't end up needing to use it, good, but at least it is there if needed. 

The main problems he is dealing with now are the side effects of chemo and radiation- dry mouth, things don't taste the same to him, some difficulty swallowing meat, tear ducts scarred from radiation, peripheral neuropathy-numbness in feet.

Reading about SNUC on the Internet is scary- it is such are rare cancer-we were told only about 100 cases diagnosed per year.

But as my husband says, he is still vertical!  Please feel free to ask any questions- I check this site often, so if you have any more questions as time goes on-please write.

Good luck to you both

Kathy

Kathy,

   Thank you so much for responding!  Can I ask what Hospital you were using?  The Doctors we are using seem to be dragging their feet.  I believe my dad has no met's or lymph node involvement at this time.  However, they still haven't done any treatment.  Since 12/16 he has lost his vision in his right eye, that went in about two weeks.  Now they won't do surgery because in the week we waited for the second MRI it had gone into the brain.  Now they tell us that they need to put a port in so they can do chemo but then it has to heal for a week before they can start the chemo.  I am tired of WAITING!!!  He had the port in yesterday and is meeting with the oncologist today.  They better be doing something.  Thanks again for responding!

 

On 12/21/2007 CaBRI wrote:

Hello.  My name is April, I am a member of a non profit organization called CaBRI in Ann Arbor, MI.  We are studying SNUC and attempting to learn as much as possible to ultimately determine an effective course of treatment.  Considering there are less than 100 people who have been diagnosed with SNUC at any given time, it is difficult to compile the data and to expect any major breakthroughs as quickly as more commonly known cancers is hopeful but not likely moreso because the larger well financed companies focus their efforts on more widespread types of cancers.  However, finding effective treatment for SNUC could very well have a positive effect on other types of cancers also.  CaBRI's parent company Cayman Chemical was devastated personally from the loss of an employee in 2006 from SNUC and the President of the company has made this a charity project of his in memory of Andrei.  Our goal is, as the case with all cancer, is to learn what course of treatment and the order in which it has been given to patients and to study biopsies and tissue samples.  If you'd like to learn more about us, please visit www.snuc.net.  I hope you are doing well and amidst what you and your family must be enduring, I am simply informing you that CaBRI has an open door to welcome you with utmost compassion and empathy if at any time your family feels they would like to collaborate with CaBRI to get educated.  Take Care.

Is this still active ? do you have any current info??

 

I do understand your frustration-it is a fast growing cancer.  We were at Swedishamerican Hospital in Rockford IL.  His treatment was started about 3 weeks after he was diagnosed-his medical oncologist had never treated one of these and it took time to fit the mask for his radiation.  He first noticed the symptoms around Thanksgiving of 2007 and was treated for "sinus infections"  A final diagnosis was not made until January 17th of 2008-it was grade 4 with bone deterioration  Being that the sinuses are so close to the brain- it can go there, but my understanding is that it usually does not spread to other parts of the body.

Alan started with a PICC line for the chemo, but after one round of chemo developed blood clots in it that went to his lungs, so it was removed and a port inserted.  they did wait about a week before the used it for chemo, but his blood counts were so low they had to wait.

Being that you are from lower Michigan, UW Madison might be a good place to look into.  We saw an ENT surgeon there-Dr. Gregory Hartig-for a second opinion if surgery would be needed.  We were lucky in that the chemo/radiation seems to have done the trick, but we were very impressed with Dr. Hartig if surgery would have been needed.

I will keep you and your father in my prayers.

Kathy

Thank you so much!!  I pray we have the same results!!!!  I may ask more questions as we go along, thank you!

SHelly