SNUC (sinunasal unadifferentiated carcinoma)

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  • Kars5969
    Kars5969 Member Posts: 12
    #22
    seifam said:

    SNUC
    Yes, I am a survivor of this type of cancer. It is very rare, but one on which there has been tremendous progress. After all three types of treatment (chemo, radiation, and surgery) at MD Anderson in 2004-05, my doctors have pronounced me "cured." It is a terrible disease, but can be surmounted with persistence and the right doctors. I hope your husband is doing exactly what the doctors tell him to. With you at his side and a positive attitude, he WILL survive it. The best of luck to you both!

    Newly diagnosed

    I'm Neely diagnosed T1 - what stage were you?  How are you now?  My doctor performed surgery on 1/31 and wants to do 6 weeks of photon radiation 5 days a week.  Looking for any advice you can give.  Thanks!

  • Kars5969
    Kars5969 Member Posts: 12
    #23
    BillyOwen said:

    update on original post
    Here it is Oct 28, 2011 and I am cancer free. Wth the love and support from my wife 1sunyday I have made it threw. Positive attitude and help from family and friends have made all the differance in the world. My main advice is EAT if you can , and if you can not. Find a way to injest calories. Chemo WILL break you down. Over two years later, I am still trying to build back up. God Bless all that are afected by this horrible dieses caled SNUC..

    Help

    What stage were you?  Are you still cancer free?  I'm newly diagnosed T1.  My doctor wants to do 6 weeks of photon radiation 5 days a week.  Looking for any advice I can get.

  • Kars5969
    Kars5969 Member Posts: 12
    #24
    dwilliams said:

    snuc cancer
    My mother 63 was just diagnosed last week with SNUC, the doctor at Emory in Atlanta has not given us much hope, he says that she is stage 4 and we could try radiation but its likeley should would go blind in her left eye and he is not sure if the tumor would respond to radiation because there was bone involved. this has taken over her bones in her sinus cavity. So we dont know if radiation would be of any benefit or what it will to to her physically while she is in her last months of life. So im lost and dont know what to do... Any suggestion?

    Help

    I am newly diagnosed and looking for advice.  How is you mother now?  Is she still treating?  

  • Kars5969
    Kars5969 Member Posts: 12
    #25
    mitchdunham said:

    hi everyone.
    i had this
    hi everyone.
    i had this disease. i was diagnosed with it august 1, 2011 after having a tumor removed from my right nostril on june 28 of the same year. i then had radical surgery to take out the cancerous tissue in my nostril. then, i recieved proton radiation therapy 5 days a week and chemo 1 day a week at mass general in boston from november 17th til january 10th. i had a biopsy in may after i thought i felt something similar in my left nostril. the surgeons took out samples from both nostrils and they both came back negative, so as of right now i appear to be in good shape. it's really unfortunate that there is not a ton of info on this disease readily available because it seems like it's becoming more common, but it's certainly far from mainstream.

    good luck to everyone

    Help

    I am newly diagnosed.  What stage were you?  How are you now?  Are you finished with treatments?

  • jamesmurdock
    jamesmurdock Member Posts: 1
    #26
    Kars5969 said:

    Help

    I am newly diagnosed.  What stage were you?  How are you now?  Are you finished with treatments?

    after treatment

    My Girlfriend (41) was diagnosed in July/August 2012 and had surgery at the end of August to remove the tumor that had broken through the cribriform plate and was pushing against her brain. 

     The cancer was very progressed by the time her primary care doctor noticed what was going on and transfered her to OHSU in Portland, Or. 

     The Surgery went very well and they say they got all of the tumor. After recovering from surgery for two months or so (she had a craniotomy and endoscopic nasal resection) she started her 33 days of radiation and 4 rounds of Cisplatin and Etoposide.   

     

      It is now a month and a half after her last Chemo treatment and she is doing extremely well.  There were very hard times for all of us but don't let all the talk about how 'rare' or 'unknown' this type of cancer is get you down too much.  It seems like the stage of your snuc determines if you will get surgery,radiation,chemo and in what order. 

     

     I wish the best to anyone that has come to this forum, There are quite a few really good hospitals in the USA that can and will help you.

  • pecostiff
    pecostiff Member Posts: 3
    #27
    linnron said:

    Hope
    My husband was diagnosed with SNUC in April 2010. Luckily, he was treated at University of Pennsylvania. He had surgery, chemo and radiation (IMRT).Treatment ended in October 2010. He was never sick in his life, no surgeries prior. He gained weight prior to treatment and has had such a positive attitude throughout the whole ordeal. His tumor extended from the dura of his brain throughout his sinuses, wrapping back to the carotids. Drs. successfully removed the tumor without losing his eye. He went through what most of you have either read or gone through....lost weight, hair, steroid rage (quickly corrected). The biggest loss was his sense of smell and taste which will not return, but he IS HERE! He also had some heart issues which were probably radiation related, but all taken care of.

    April 2010 and now February 2012....we just had a PET scan and he is still CLEAR. Yes, he misses not tasting food, he has everyone fooled. His strength is about 70% back to normal, still tires earlier than pre-cancer diagnosis. I cannot say or give enough praise to all of the people involved at the University of Penn. I drove him 2.5 hrs. one way every day for 7 weeks and it was worth every minute.

    We both ride motorcycle and he is back riding! His motto was always do what we have to do and get it done. He would joke with the staff and all the patients and get them to tell their story. We both were humbled in getting to know fellow patients and the power of the human spirit.

    I wish all of you the best in your journey with this horrible disease. Research and read all you can. It helped me through this. I've been following the thread since 2010 and am finally ready to share the good news! Yes, there is hope.

    My dad

    Hi there. My dad is 54 yrs old and diagnosed with snuc. The plan is to start concurrent chemo and radiation. What type of radiation did your husband have? md Anderson offers proton therapy radiation and I'm wanting to take my dad there for a second opinion. Did your husband have chemo and radiation before or after the surgery?

  • chiquitita
    chiquitita Member Posts: 1
    #28
    seifam said:

    SNUC
    Yes, I am a survivor of this type of cancer. It is very rare, but one on which there has been tremendous progress. After all three types of treatment (chemo, radiation, and surgery) at MD Anderson in 2004-05, my doctors have pronounced me "cured." It is a terrible disease, but can be surmounted with persistence and the right doctors. I hope your husband is doing exactly what the doctors tell him to. With you at his side and a positive attitude, he WILL survive it. The best of luck to you both!

    Hope for a SNUC patient

    Hi Sefaim,it's so hopefully read abotut yor story. My friend has been recently diagnosed with SNUC at 4th stage. May I ask you which stage was yours? We read many news about MD Anderson and we are trying to get him cured there altough we are from Italy. Thanks a lot. All the best!

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #29
    chiquitita said:

    Hope for a SNUC patient

    Hi Sefaim,it's so hopefully read abotut yor story. My friend has been recently diagnosed with SNUC at 4th stage. May I ask you which stage was yours? We read many news about MD Anderson and we are trying to get him cured there altough we are from Italy. Thanks a lot. All the best!

    welcome

    chiquitita,

    Welcome to the H&N forum.

    Seifam made a first time appearance to this forum on May 7, 2010 and a last log on of May 8, 2010.  It is hard to know what happens to many members.

    If you start a new thread you may get more response, it is worth a try.

    I was stage IVa scc, but mine was at the base of tongue.

    You might check out the superthread and see if it fills in some gaps for you.

    Best,

    Matt

  • brucevette
    brucevette Member Posts: 1
    edited April 2021 #30
    SNUC

    Platinum, radiation and surgery are the main SNUC treatments.  Platinum is usually combined with another chemo drug such as etoposide, adriamycin, taxol and others.  Most SNUC is diagnosed at an advanced stage (4A locally advanced, 4B is metastatic).  Curing SNUC is difficult, but maybe less so now.  Your oncologist and ENT drs are not likely to know about two treatment options;  Tazemetostat and Xevinapant.  Would highly recommend you discuss with your drs those two drugs if current treatment is failing.  Consider also Morphoproteomic therapy.  Some readily available over the counter supplements may have benefit;  Circurmin, Melatonin, Metformin, Sulforaphane.

     

    Consultative Proteomics | McGovern Medical School (uth.edu)

    Sinonasal undifferentiated carcinoma (SNUC): Morphoproteomic-guided treatment paradigm with clinical efficacy — Houston Methodist Scholars

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