snuc

My husband was dx with SNUC 11/06. Caught it at Stage 2. He's had chemo, radiation, surgery, then more chemo and radiation. Had to eat via G-tube. Now nutrition is delivered intravenously via TPN (bag of liquid nutrition) through veins. Very weak and sick. He is now aged 49.

Most doctors have never heard of SNUC. There is no real protocol of treatment. It's all a guessing game.

Wow- not real encouraging.  My husband was diagnosed 1/08.  Has had 3 rounds of chemo, 38 radiation treatments, g tube, nausea, sore mouth and tongue.  He is 51.

Now waiting for repeat PET scan to see about surgery.  The initial post treatment PET was encouraging , but the surgeon said it was too soon to tell what is still affects from treatment and what is cancer.

I feel at the point of one day at a time and don't look too far ahead.

My prayers to you and your husband.

He has a PET scan scheduled for June 25. Right now he mostly lays in bed. He says the TPN makes him sick.

On 6/3/2008 lovelane wrote:

My husband was dx with SNUC 11/06. Caught it at Stage 2. He's had chemo, radiation, surgery, then more chemo and radiation. Had to eat via G-tube. Now nutrition is delivered intravenously via TPN (bag of liquid nutrition) through veins. Very weak and sick. He is now aged 49.

Most doctors have never heard of SNUC. There is no real protocol of treatment. It's all a guessing game.

 

 

Our docs at Kaiser seem pretty familiar with SNUC, but you are so right....no real absolutes!

It's been about 5 weeks since surgery. Radiation/chemo scheduled to start in one week but now elevated blood enzymes have sent him back for a bone scan and a more indepth CT. We're not sure what this means, and are waiting to hear what the oncologist has to say.

 Why did your husband switch from the feeding tube?

Best wishes, and thanks!

He had trouble swallowing food or liquids. He was aspirating them and it could have led to pneumonia. The g-tube went in but infected soon thereafter. He tried Jevity and Nutren. He was in the hospital (in-patient) 3 times in a month after tube insertion. He was sick from the canned milks. He can't swallow well because his vocal cords and mouth are damaged.

Now he uses TPN via PICC line. The chest port also infected soon after TPN started so it was removed and he has a PICC in an arm. I also give him a bag of vancomycin every morning. I do the TPN at night. No insurance covers a nurse to do this. The nurse trains you how to administer yourself. Funny thing is that an LPN in a clinical setting can't do the tasks.

My 70 year old dad has just been diagnosed w/SNUC.  Tumor is relatively small, so they've caught it early.  No other cancer found inthe PET.  My dad has hardly ever been sick and only had a few surgeries in his life.  Can't stand to sit still and still works 6 days a week in his construction business.

Here's the question: given what you've seen your loved ones go thru, is it worth it for my dad to take on the treatment?  Is the cure worse than the disease?

On 10/12/2008 Susan43 wrote:

My 70 year old dad has just been diagnosed w/SNUC.  Tumor is relatively small, so they've caught it early.  No other cancer found inthe PET.  My dad has hardly ever been sick and only had a few surgeries in his life.  Can't stand to sit still and still works 6 days a week in his construction business.

Here's the question: given what you've seen your loved ones go thru, is it worth it for my dad to take on the treatment?  Is the cure worse than the disease?

My husband was diagnosed with SNUC in January.  Had 3 rounds of Cisplatin and 5FU along with 38 radiation treatments.  While everyone responds differently to treatment it will definitely kick your butt, however I have not read a lot of good things about this cancer if not treated.

Since it is early that's good.  The main thing I would say is to be sure to consider a feeding tube early in treatment because the mouth sores from the radiation along with the nausea from the chemo will definitely interfere with nutrition.

My husband is now going on 7 months since treatemnt ended.  He has trouble with dry mouth-carry a bottle of water all the time, decreased taste and appetite, peripheral neuropathy and some trouble with his eye, but he is still here and has had 2 clean PET scans now.  Is also back to work part time

My best to your father.

Kathy