Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by Michele_p_3 on Fri Dec 21, 2012 08:34 PM
I am a SNUC (SinoNasal Undifferentiated Carcinoma) survivor and I am looking for other SNUC survivors! I know of myself, another woman who also lives in middle Tennessee, and a man who lives in Las Vegas, NE.
Are there any more of us out there?
by scootie45 on Fri Dec 28, 2012 03:11 AM
My husband will be 5 year survivor in 2013!
It is a "new normal" but as he says he is still vertical and the top side of the ground.
by Michele_p_3 on Fri Dec 28, 2012 02:15 PM
That is wonderful news! Well... Now there are FOUR of us! Two women in Middle Tennessee, one man in Las Vegas, and now your husband! AMEN! Where are you located?
by scootie45 on Fri Jan 04, 2013 03:47 AM
We are in Rockford Illinois. I know there are a few more survivors out there, but sadly not too many. Such a scary cancer- the more I read about it on line the worse it sounded. This site is really the only place I found anything that sounded remotely hopeful.
by Michele_p_3 on Fri Jan 04, 2013 02:17 PM
I wish we could find enough of us to have a support group where we could all encourage each other and stay in touch!
by magtart on Mon Jan 07, 2013 09:19 PM
My husband has been through three rounds of SNUC starting in 2005. The last recurrence was Nov. 2011. We are located in Houston, TX so he is treated at MD Anderson Cancer Center.
Good luck and good health to everyone!
by Michele_p_3 on Mon Jan 07, 2013 09:45 PM
WOW! How is your husband doing now? I have some minimal residual effects from treatment... Chronic Dry eye, a detatching retina, and some chemo/radiation brain (some concentration/memory issues). I was diagnosed in 2005 when I was 39. I met Becky (then about mid-50's) as I finished treatment in early 2006. She survived with some minimal residual issues as well. I found Billy (Las Vegas) a few months ago. He was diagnosed in 2010 and is now 35. He lost his right eye. Another odd thing... My highschool boyfriend lost his father to SNUC in January 2005 just months before I was diagnosed.
Because there are so few of us, I would love to find a way to stay in touch! Barb Abernathy is a HUGE funraiser for SNUC research, and lost her daughter Ashley to the disease.
by magtart on Tue Jan 08, 2013 02:29 AM
He is doing okay, not great, but definitely okay. He is still on a PEG tube since Feb. of last year. He has not been able to swallow well since the last round of radiation treatment, which ended 2/3/12.
He has a titanium plate holding up his right eyeball, but now all the tissue they implanted in his face (from his thigh) is starting to settle and the plate is very close to breaking through the skin. Now he is going through a series of fat injections from his belly to his eye area to try and rebuild a cushion.
Hearing loss is a big issue as well as low blood pressure, low sodium, and frequent infections. He had a staph infection in the site of his port-a-cath last March, which resulted in a 10 day hospital stay. We have made numerous trips to the MD Anderson ER for low blood pressure and fainting.
It seems like it is one step forward and two steps back, but we keep on moving forward as best we can.
Thanks for asking!
by Michele_p_3 on Tue Jan 08, 2013 02:22 PM
Oh my... what a struggle! May I ask what your first names are? I would like to include you in my daily prayers. They told me that SNUC is typically found in men ages 45-60 who work in areas that might allow them to inhale small particles of various substances... I fell into none of those categories. Becky (the other woman from Middle TN) did not fall into those categories either. Billy (35 yr old in Las Vegas) had been a motorcycle mechanic, but now works in a show in Las Vegas which features scarey/frightening themes... he works without his prostestic eye. I guess we all do the best we can with what we have! I will pray for you and your husband! Please keep in touch. Prayers my friend! Michele
by magtart on Tue Jan 08, 2013 11:49 PM
My husband's name is Guy and my name is Maggie. Hubby is a software engineer, so he does not fit into the inhaling small particals theory.
We saw his PCP today and discussed the low blood sodium issue, low b/p, and fainting. The labs showed his blood sodium level is now down to 123, which is considered dangerously low (panic low is what the report says)--close to the level where seizures could start to happen. He is already experiencing the mental confusion related to low blood sodium. Next up is a visit to the nephrologist to figure this out. We can't get an appointment until 1/25!
Thank you for you prayers...every little bit helps!
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