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Old 10-13-2012, 08:13 PM
 
Location: Los Angeles>Little Rock>Houston>Little Rock
6,488 posts, read 6,961,731 times
Reputation: 17366

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I am just wondering how many have had a recurrence of their cancer and if so, how many times? What is your prognosis and treatment plan and how does the treatment affect your general health?

My husband is on his third round with para-nasal cancer of the SNUC variety, which began in 2003. Each time it comes back the treatment takes an even worse toll on his health. Thanks to the damage from radiation treatment he is no longer to able to eat solid food and we do not see that changing for the rest of his life. His hearing is shot due to the chemo he has been through. He has frequent problems with low blood pressure (as low as 78/44), fainting, infections, and the latest is pneumonia.

In 2008 he had surgery (17 hours) to remove the tumor from under is eye. They removed his right sinus cavity,the lower eye orbital bone, right upper jaw and pallet. They had to harvest tissue from one leg and veins from another to rebuild his face using microsurgery similar to a face transplant. They had to implant a titanium plate to hold up his eyeball and make a new roof of his mouth with thigh tissue.

Now, almost exactly four years later the rebuilt cheek and eye support is sinking. There is a big hollow under is eye because the tissue has been reabsorbed leaving the titanium plate very close to the skin and about to break through. There is not much that can be done about it other than trying to inject fat deposits from his belly into the area. Other options are available but they would mean another long and involved surgery. I don't think he would survive the surgery what with his breathing difficulties.

Does anyone have recurrence experiences to relate?
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Old 10-13-2012, 08:47 PM
 
Location: Duluth, Minnesota, USA
7,653 posts, read 15,353,700 times
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I feel for your husband. He is in my prayers.

I was diagnosed with a brain tumor 3 years ago. Shortly after diagnosis, I was placed on chemotherapy. After 12 cycles (a little under a year), I had reached my treatment goal and was taken off. At the end of last year, the MRI began to show possible progression. At first they thought that this was simply the effects of treatment, but then they changed their mind and put me back on the same chemotherapy as last time. The worst thing is this time I suffered a periodic skin rash following chemotherapy, which I was prescribed steroids for, which in turn caused me to gain weight! On the positive side, my scans have been stable since and my condition has improved (for a while there I had mild dysfluency in my speech), although chemotherapy is a bit more difficult this time around and my platelets never recovered, although they were never really that low to begin with.
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Old 10-14-2012, 07:59 AM
 
Location: NJ
10,768 posts, read 21,390,916 times
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Quote:
Originally Posted by maggie2101 View Post
I am just wondering how many have had a recurrence of their cancer and if so, how many times? What is your prognosis and treatment plan and how does the treatment affect your general health?

My husband is on his third round with para-nasal cancer of the SNUC variety, which began in 2003. Each time it comes back the treatment takes an even worse toll on his health. Thanks to the damage from radiation treatment he is no longer to able to eat solid food and we do not see that changing for the rest of his life. His hearing is shot due to the chemo he has been through. He has frequent problems with low blood pressure (as low as 78/44), fainting, infections, and the latest is pneumonia.

In 2008 he had surgery (17 hours) to remove the tumor from under is eye. They removed his right sinus cavity,the lower eye orbital bone, right upper jaw and pallet. They had to harvest tissue from one leg and veins from another to rebuild his face using microsurgery similar to a face transplant. They had to implant a titanium plate to hold up his eyeball and make a new roof of his mouth with thigh tissue.

Now, almost exactly four years later the rebuilt cheek and eye support is sinking. There is a big hollow under is eye because the tissue has been reabsorbed leaving the titanium plate very close to the skin and about to break through. There is not much that can be done about it other than trying to inject fat deposits from his belly into the area. Other options are available but they would mean another long and involved surgery. I don't think he would survive the surgery what with his breathing difficulties.

Does anyone have recurrence experiences to relate?
I'm so sorry. Where has & is he being treated?
It seems with these types of cancer; you have to have treatment from one of the best.
You would not believe how well my hub is doing (stage 4 tonsil) after being treated in Philly. I may end up eating my words; but it will be 3 years since treatment on 12/25. Compared to others; his saliva is ok; he can swallow fine & most of all; he does not have nerve damage.

There is actually a new procedure & I'm almost positive they're doing it on your hubs type where they do robotic surgery through the nose. University of Penn is doing robotic; the one I'm thinking of that goes through the nose is in Pittsburgh I believe.

UPMC minimally invasive Endoscopic Endonasal Approach

Do you go to Cancer compass or the oral cancer board?
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Old 10-14-2012, 08:46 AM
 
Location: NJ
10,768 posts, read 21,390,916 times
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Forgot to mention; that for some people; treatment just isn't successful due to bad prognostic factors that may not have been known back when he 1st started. They know so much more now then back then.

I know a guy online who was treated at Hopkins for my hubs cancer; but he was 2 years ahead. He went for his 5 year scan; they found a new cancer in his lungs that did not respond to treatment the way it should have. It was so sad; he just retired; was looking forward to relaxing & hunting/fishing but it was not meant to be.

Similar happened to my dad. He was forced to retire due to diabetes & enlarged prostate; less then 2 years later; built a house 7 blocks from me. Went for a prostate biopsy April 2005 & never recovered. He finally listened to us & went to his Dr who ran blood work; sent him straight to the hospital; had a bone biopsy & was diagnosed terminal AML Leukemia. He did a radical chemo trial that put him in "remission" but it was short lived. I've wondered if it was really remission or if we just didn't have the technology to read the micro-blasts in his blood. He was then going to do a stem cell trial but the cancer moved too fast. They now know so much more about his type of AML
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Old 10-14-2012, 11:55 AM
 
Location: Los Angeles>Little Rock>Houston>Little Rock
6,488 posts, read 6,961,731 times
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He is being treated at MD Anderson Cancer Center here in Houston. They are pretty good at what they do.
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Old 10-14-2012, 12:05 PM
 
Location: NJ
10,768 posts, read 21,390,916 times
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Quote:
Originally Posted by maggie2101 View Post
He is being treated at MD Anderson Cancer Center here in Houston. They are pretty good at what they do.
They're actually better then pretty good lol
Having said that; I do not know how they are rated for this type of cancer. I know they are top 3 with a lot of others.

He very well could be one of the ones who's more complicated. Have they treated him for all of the cancers?
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Old 10-14-2012, 12:09 PM
 
Location: Los Angeles>Little Rock>Houston>Little Rock
6,488 posts, read 6,961,731 times
Reputation: 17366
Quote:
Originally Posted by Roselvr View Post
They're actually better then pretty good lol
Having said that; I do not know how they are rated for this type of cancer. I know they are top 3 with a lot of others.

He very well could be one of the ones who's more complicated. Have they treated him for all of the cancers?
Yes, from the very beginning. Actually, SNUC is very aggressive and has low survival rate. He does indeed have a very complicated case/
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Old 10-14-2012, 04:03 PM
 
Location: NJ
10,768 posts, read 21,390,916 times
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He's been blessed so to speak. I'm so sorry he's had to go through that. If my hubs comes back; I know he will not go as far as your hub did.
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Old 10-16-2012, 01:11 PM
 
Location: Great Plains
25,583 posts, read 31,874,735 times
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After the first surgery, the first appointment with the oncologist, there was no other indication of cancer, which didn't set right with him or me. We elected to check again in 2 months. two months later a CT scan showed there was concern. I had a second major surgery, after which we chose observation. At that time the blood tests showed a huge increase in my tumor markers and a chest x-ray showed 4 lesions on my lungs, which launched me into 9 weeks of chemo.
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Old 10-16-2012, 01:18 PM
 
915 posts, read 1,842,891 times
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I made a decision that if my cancer comes back, I'm not going to do any more surgury or chemotherapy. Just raw vegan and exercise about five hours a day (mostly lazy swimming, but aerobic exercise, too). Luckily for me, I'm in a position where I can do that. I would not recommend it to anyone, but for myself, that's what I'm going to do, should it recur.

There have been instances where a raw vegan diet and lots of physical movement have cured the cancer, and 20 years later, the person is still well. I'd opt for that, but only in my particular circumstances.
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