Sinunasal unadifferential carcinoma

bigbruv
bigbruv Member Posts: 1
in Head and Neck Cancer #1
hi

My younger sister has been diagnosed with SNUC.
Begins chemo tomorrow, followed by radiography.
Anyone offer any insight into what we can expect or hope for please

thanks
bigbruv

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Welcome BigBruv....
    I can't give you any specifics for that particular cancer as I had STGIII Tonsil Cancer.

    I can offer you tons of hope, thoughts and prayers though.

    Also, a link to the SuperThread we've compiled, and put together with music by Dawn (SweetBlood22 and her faithful Chinese Crested..Nizzy Noodle.

    SUPERTHREAD

    OK, no music, but tons of very useful information that I'm sure will be of use for you.

    Just be there for your sister, that is huge in itself. Also realize that today's cancer's are very treatable due to modern technology, drugs and understanding.

    Best,
    John
  • Michele Smithson
    Michele Smithson Member Posts: 2
    #3
    SNUC Survivor
    I am a SNUC survivor. Diagnosed at age 39 in July 2005. I will attach a link to Dr. Barbara A Murphy's paper (she was my oncologist at Vanderbilt). I am the 39 year old mentioned in the paper, and my friend Becky is the 54 year old. We met just as she was diagnosed in FEB 2006. We both survived! Depending on the areas affected by the SNUC tumor/growth, I've read various things. My tumor involved my right eye orbit, my sinuses, and was touching my caratid artery. I tolerated my chemo well for the first 12 weeks. Radiation was introduced during week 4 and I had 35 treatments over a 7 week periood. Chemo was re-introduced in November 2005 just three weeks after completion of radiation, and I did not tolerate it as well. Dr. Murphy said that my body had just had ENOUGH. She allowed me time to recover and to enjoy the holidays with my family. No surgery was required, other than my initial biopsy which was done by Dr. Duncavage ENT at Vanderbilt.
    My Team of Doctors: Barbara A Murphy (oncologist), Louise A Mawn (ocular plastic surgeon), Dr. Duncavage ENT, Anthony Cmelak (radiation oncologist), etc...

    Michele

    http://lib.bioinfo.pl/pmid:2009049.Primary ocular presentation of sinonasal undifferentiated carcinoma.
    Keshini C Parbhu, Korianne E Galler, Barbara A Murphy, Clovis W Pitchford, Louise A Mawn
    *Department of Ophthalmology, University of Alabama, Birmingham, Alabama; daggerDepartment of Ophthalmology, University of Iowa, Iowa City, Iowa; double daggerDepartment of Medical Oncology, Vanderbilt University Medical Center, Nashville, Tennessee; section signDepartment of Pathology, University of New Mexico Health Sciences Center, Albuquerque, New Mexico; and parallelVanderbilt Eye Institute, Vanderbilt University Medical Center, Nashville, Tennessee, U.S.A.
    The authors describe 2 consecutive patients who presented to Vanderbilt University Medical Center with primary orbital presentation of sinonasal undifferentiated carcinoma and were treated from July 2005 to April 2009. The patients were a 39-year-old woman and 54-year-old woman who both presented to the ophthalmology service due to complaints of diplopia. Imaging studies demonstrated large soft tissue masses originating in the sinuses with extension in the orbit in both cases. Both patients were treated with carboplatin, paclitaxel, and dexamethasone as induction chemotherapy followed by concurrent chemoradiation with intensity-modulated radiation therapy. This treatment regimen resulted in significant tumor shrinkage, resolution of symptoms, and no evidence of recurrence while avoiding surgical intervention and allowing orbital preservation
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #4
    Michele Smithson said:

    SNUC Survivor
    I am a SNUC survivor. Diagnosed at age 39 in July 2005. I will attach a link to Dr. Barbara A Murphy's paper (she was my oncologist at Vanderbilt). I am the 39 year old mentioned in the paper, and my friend Becky is the 54 year old. We met just as she was diagnosed in FEB 2006. We both survived! Depending on the areas affected by the SNUC tumor/growth, I've read various things. My tumor involved my right eye orbit, my sinuses, and was touching my caratid artery. I tolerated my chemo well for the first 12 weeks. Radiation was introduced during week 4 and I had 35 treatments over a 7 week periood. Chemo was re-introduced in November 2005 just three weeks after completion of radiation, and I did not tolerate it as well. Dr. Murphy said that my body had just had ENOUGH. She allowed me time to recover and to enjoy the holidays with my family. No surgery was required, other than my initial biopsy which was done by Dr. Duncavage ENT at Vanderbilt.
    My Team of Doctors: Barbara A Murphy (oncologist), Louise A Mawn (ocular plastic surgeon), Dr. Duncavage ENT, Anthony Cmelak (radiation oncologist), etc...

    Michele

    http://lib.bioinfo.pl/pmid:2009049.Primary ocular presentation of sinonasal undifferentiated carcinoma.
    Keshini C Parbhu, Korianne E Galler, Barbara A Murphy, Clovis W Pitchford, Louise A Mawn
    *Department of Ophthalmology, University of Alabama, Birmingham, Alabama; daggerDepartment of Ophthalmology, University of Iowa, Iowa City, Iowa; double daggerDepartment of Medical Oncology, Vanderbilt University Medical Center, Nashville, Tennessee; section signDepartment of Pathology, University of New Mexico Health Sciences Center, Albuquerque, New Mexico; and parallelVanderbilt Eye Institute, Vanderbilt University Medical Center, Nashville, Tennessee, U.S.A.
    The authors describe 2 consecutive patients who presented to Vanderbilt University Medical Center with primary orbital presentation of sinonasal undifferentiated carcinoma and were treated from July 2005 to April 2009. The patients were a 39-year-old woman and 54-year-old woman who both presented to the ophthalmology service due to complaints of diplopia. Imaging studies demonstrated large soft tissue masses originating in the sinuses with extension in the orbit in both cases. Both patients were treated with carboplatin, paclitaxel, and dexamethasone as induction chemotherapy followed by concurrent chemoradiation with intensity-modulated radiation therapy. This treatment regimen resulted in significant tumor shrinkage, resolution of symptoms, and no evidence of recurrence while avoiding surgical intervention and allowing orbital preservation

    Hello bigbruv ...
    You are in a great place here ...the superthread John posted is "wonderful" ...also, don't forget to checkout the oralcancerfoundation.org site and message boards as well.

    Sorry you have to be here ..sounds like you are a good brother to your sister ..

    Tim
  • HIAngel22
    HIAngel22 Member Posts: 1
    #5
    SNUC
    I hope that this reply finds your sister doing well. I have found that every SNUC case is different. My daughter was diagnosed with SNUC March of 2011. Feel free to read our story at www.snucsucks.com

    My advice to you is to do as much research on the web, read articles about SNUC. It is rare but it seems to be occuring more often. There is research being done on SNUC at http://www.cabrimed.org/snuc.jsp

    God Bless.
  • mfjorge
    mfjorge Member Posts: 2
    #6
    HIAngel22 said:

    SNUC
    I hope that this reply finds your sister doing well. I have found that every SNUC case is different. My daughter was diagnosed with SNUC March of 2011. Feel free to read our story at www.snucsucks.com

    My advice to you is to do as much research on the web, read articles about SNUC. It is rare but it seems to be occuring more often. There is research being done on SNUC at http://www.cabrimed.org/snuc.jsp

    God Bless.

    I am not yest a conplete
    I am not yest a conplete snuc survivor but i am on my way to be so.. I'm a 25 year old male who had just finished med school 2 weeks before diagnosing myself. In medical literature you will find that snuc has a very poor prognosis, however i believe this is due to the lack of information of new cases and treatments being done nowadayas. I was diagnosed in july 2012 and so far i have undergone 2 debulking surgerires, 4 rounds of intraarterial cisplatin chemotherapy, 3 rounds of intravenous cisplatin and 33 rounds of radiation therapy with imrt. I am just finished all this and i am awaiting the next mri to see what finally happened with the tumor. I am a bit uneasy but i hope everything will be ok. To all those other patients suffering from this terrible disease, have hope. Know that snuc can be beat even though it is in an advanced stage (kadish C).! I would appreciate if anyone else could tell me more about the treatment they recieved. And to all those with new diagnosis, the road to recovery is no sugary path, it is hard but definately possible.. Please feel free to contact me with any wuestions whatsoever at jasgmd@gmail.com. Have a great day and hope above all!!!
  • arak_83
    arak_83 Member Posts: 5
    #7
    mfjorge said:

    I am not yest a conplete
    I am not yest a conplete snuc survivor but i am on my way to be so.. I'm a 25 year old male who had just finished med school 2 weeks before diagnosing myself. In medical literature you will find that snuc has a very poor prognosis, however i believe this is due to the lack of information of new cases and treatments being done nowadayas. I was diagnosed in july 2012 and so far i have undergone 2 debulking surgerires, 4 rounds of intraarterial cisplatin chemotherapy, 3 rounds of intravenous cisplatin and 33 rounds of radiation therapy with imrt. I am just finished all this and i am awaiting the next mri to see what finally happened with the tumor. I am a bit uneasy but i hope everything will be ok. To all those other patients suffering from this terrible disease, have hope. Know that snuc can be beat even though it is in an advanced stage (kadish C).! I would appreciate if anyone else could tell me more about the treatment they recieved. And to all those with new diagnosis, the road to recovery is no sugary path, it is hard but definately possible.. Please feel free to contact me with any wuestions whatsoever at jasgmd@gmail.com. Have a great day and hope above all!!!

    Newly diagnose snuc

    Hi my mum has just been diagnosed with a snuc. At first they thought it was a aquamous cell carcinoma. After surgery to reove the cancer it turns out thats it not. No treatment has been set yet we are waiting to see the radiologist/oncologist hopefully next week. Mums tumour invaded the nasal cavity, epthiod sinus, and into the cribiform plate which she had to have removed. They also had to graft a piece of skin under the eye which they did so with a free flap from the forehead.  At present it has been said that she will recieve chemo and radio in aggressive doses.  Ill keep you updated on her treatment plan.

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #8
    arak_83 said:

    Newly diagnose snuc

    Hi my mum has just been diagnosed with a snuc. At first they thought it was a aquamous cell carcinoma. After surgery to reove the cancer it turns out thats it not. No treatment has been set yet we are waiting to see the radiologist/oncologist hopefully next week. Mums tumour invaded the nasal cavity, epthiod sinus, and into the cribiform plate which she had to have removed. They also had to graft a piece of skin under the eye which they did so with a free flap from the forehead.  At present it has been said that she will recieve chemo and radio in aggressive doses.  Ill keep you updated on her treatment plan.

    Arak....

     

    You posted on a thread that was 1 year old...you may want to post a new thread .....however I pray your mother does well and though I am sorry you have to join our club...you have come to  a great place for support.

    Best,

    Tim

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