Long Term Survivors of Snuc

Hi Kathy,

My name is Joe. I was diagnosed with snuc in early April of 2008. I went through nearly identical treatmennt as your husband and my recovery from that treatment is long, hard, and painfull. In fact on Friday Feb 27 2009, a week and a half from now I will have my left eye surgically removed. The radiation is killing that eye so they want me to have it removed. Anyway, how is your husband doing? How are you doing?

My last treatment was on July 3rd so I had my first followup MRI a month ago. So far, no sign of that nasty tumor or any cancer. I pray daily that it stays that way but most of the medical opinions I've gotten are not hopefull. I do try to stay in the day, practice acceptance and live as well as I can. I'm only now starting to really accomplish things around the house. Well, please let me know how it's going.

Gratefully,

Joe

Hi Joe,

  First of all let me say how sorry I am to hear about the rough time you have had and are still having with this awful cancer and it's treatment.  Sometimes it's hard to say if the treatment is worse than the cancer, though like you what I have read is not always promising, but you and Alan are examples that it can be beat.

  It was one year ago this week that Alan started his treatment.  The last PET scan he had in September was clean-one small lymph node lit up in his jaw, but the doctors think it wass probably due to a sinus infection, not the SNUC.  He will be having another PET scan March 18th- it will be just less than a year after his treatment ended, so the results will be pretty significant, though Alan says he will feel better when he has been clean for 5 years.

  He is also still having trouble with his right eye since the radiation.  We were told best case scenario would be a cataract, worse case he could lose the eye.  Neither has happened, but he has had a lot of trouble with irritation from the eyelashes growing in all directions and constantly scratching and irritating it.  He recently had all the lower lashes "frozen off" so they won't keep irritating the eye.

  It has taken a long time to recover from the treatment-he still has days he gets very fatigued, but is out snowblowing right now-we live in Rockford IL and just got 3-4" of snow overnight.  He is also back to work 4 hours a day.

  I am curious- have the doctors given any indication of what may have caused this cancer for you?  It is so rare- only the surgeon we saw in Madison has ever delt with this and he only sees 1 or 2 cases a year.  Alan worked in a factory- was in tool and die and was exposed to a lot of carbide and grinding dust, but hadn't worked there for nearly 6 years when he was diagnosed.  He has had a lot of sinus problems and infections over the years.  He has also run into quite a few former co-workers who have been diagnosed with some unusuals cancers as well.  Makes you wonder sometimes.

   Best of luck to you Joe on this upcoming surgery and your continued recovery.  We will be praying for you and please keep us posted on how you are doing.  I have found this message board to be very helpful and Alan has too.  Especially when you are dealing with something this rare.

Kathy

On 2/21/2009 scootie45 wrote:

Hi Joe,

  First of all let me say how sorry I am to hear about the rough time you have had and are still having with this awful cancer and it's treatment.  Sometimes it's hard to say if the treatment is worse than the cancer, though like you what I have read is not always promising, but you and Alan are examples that it can be beat.

  It was one year ago this week that Alan started his treatment.  The last PET scan he had in September was clean-one small lymph node lit up in his jaw, but the doctors think it wass probably due to a sinus infection, not the SNUC.  He will be having another PET scan March 18th- it will be just less than a year after his treatment ended, so the results will be pretty significant, though Alan says he will feel better when he has been clean for 5 years.

  He is also still having trouble with his right eye since the radiation.  We were told best case scenario would be a cataract, worse case he could lose the eye.  Neither has happened, but he has had a lot of trouble with irritation from the eyelashes growing in all directions and constantly scratching and irritating it.  He recently had all the lower lashes "frozen off" so they won't keep irritating the eye.

  It has taken a long time to recover from the treatment-he still has days he gets very fatigued, but is out snowblowing right now-we live in Rockford IL and just got 3-4" of snow overnight.  He is also back to work 4 hours a day.

  I am curious- have the doctors given any indication of what may have caused this cancer for you?  It is so rare- only the surgeon we saw in Madison has ever delt with this and he only sees 1 or 2 cases a year.  Alan worked in a factory- was in tool and die and was exposed to a lot of carbide and grinding dust, but hadn't worked there for nearly 6 years when he was diagnosed.  He has had a lot of sinus problems and infections over the years.  He has also run into quite a few former co-workers who have been diagnosed with some unusuals cancers as well.  Makes you wonder sometimes.

   Best of luck to you Joe on this upcoming surgery and your continued recovery.  We will be praying for you and please keep us posted on how you are doing.  I have found this message board to be very helpful and Alan has too.  Especially when you are dealing with something this rare.

Kathy

Hi Kathy and first of all thank you for responding to my post. I'm interested why you would say that Alan andI have beat it. True there is no visible cancer in the MRI which I think I only get every three months. Not enough if you ask me. But anyway, at the end of treatment my oncologist said something to the effect that only 50 to 60% survive - congratulations. Later after my first follow up MRI he told me the scan was good. I asked him if I could consider myself "in remission" and he said yes. Then he said it (the cancer) was under control.

I pressed him a little harder and asked him 'if the cancer comes back would it be the same cancer in exactly the same place' and he said yes. He went on to tell me that if it comes back it will be within the 2 years after treatment. He  also said that if it comes back there will be nothing they can do for me. This scares me. I have an appointment this Wednesday with my other oncologist (radiology) andI'm going to press her with even harder questions. Let her confirm my other doctor's predictions but I also want thm to tell me if they are truly saying "if it comes back" or are they actually saying it will come back. I will be fighting to have surgery if it comes back. My head oncologist has already said no because of the proximity to the brain. Well my outlook is this: if it comes down to living a few more years with brain damage I will still take that over dying at this early age. They're going to get to see how persistant I can be.

It sound like Alan and I have at least similar stories and I am sorry for the both of you. My wife (my hero) and I have been through hell but we try to remain hopefull. We adopt an attitude that says I will live for another 10 years or so. To answer your question even though he was 6 years out from his job when he was diagnosed that is really not to uncommon. As for me, nobody can explain how I got this particular cancer (SNUC). I've never even been around metal workers or wood workers. I had a desk job for 18 years and before that I was a short-order cook for quite a few years.

So, no one knows. I am a Vet and so I am applying for what they call service connection. The areas I was stationed at at the end of the Viet Nam war were saturated with agen orange. Now I have cancer, Diabetes, Bipolar disorder and PTSD all of which can be caused by agent orange. The service connection will help my wife and I financially even after I pass.

Insist on more treatment if it comes back and try to get my wife fianciallly better off. These are the only to things I can do at this point.

Thank you for your post, your words and especially your prayers. Kris and I will be doing the same for you. And yes  Iwill keep you up to date on what goes on. This Friday the 27th is a big one as you know but it's something I've needed for the past 7 months. I know the pain will be there afterward but I've gotten used to pain as I'm sure Alan has had to.

Best to you and Alan from me and Kris. Our thoughts and prayers go out to you both. Lets do try to keep in touch.

Gratefully

Joe