nasopharyngeal cancer stage 4

talia

my husband was diagnosed in sept 2004 with nasopharyngeal cancer stage 4. he has finished his first treatment of radiation/chemo. he still needs to have more chemo which we are told is going to be like a life insurance policy. however as my husbands weight has dropped drematically they will only consider this if he gains some weight. he is been fed through a peg tube as the affects of treatment have left him unable to eat orally. he is having 5 tins of jevity hi cal per day but finds it hard to keep them down, has anybody got any suggestions?

LostinVA

My heart and prayers go out to your husband. I was diagnosed with Nasopharyngeal Stage 3 in Feb/04 and went through 39 rad and 2 rounds of chemo. I completed my treatment at the end of June/04. During treatment and after I was also on the peg tube. I could not tolerate any formula no matter how slow or fast it went into my system. I must have tried 6 or 7 brands. I just couldn't keep them down. My throat completely closed up due to swelling, so I wasn't able to eat or drink for months and the direct result was that I lost 60 lbs. Thank God..I had the weight to spare. I found out when my treatment was almost finished and I felt like I was starving to death, that a peg tube can easily be converted to a "J" tube. The J tube bypasses the stomache and puts the food into the intestines. Once I bypassed my stomache, I was able to keep as many can down a day as I wanted with no nausea or throwing up. I managed to stabilize my weight after treatment and started feeling stronger. I only wish that I knew about te J tube sooner. I hope this information is helpful to you. By the way..it does get better. Recovery is a struggle, but things will improve. Please keep us posted.
A fellow survivor, Linda

RJMiller

My husband was diagnosed with stage IV (no metastes) Nasopharyngeal carcinoma in October 2003. He had chemo and radiation, then the follow-up chemo. He drank Boost and Ensure, but disliked it a lot. We finally switched him to Instant Breakfast. He found he could tolerate drinking it slightly warmed up. I gave it to him for breakfast, lunch and dinner. His weight at diagnosis was 190 (slightly overweight), down to 144 at the lowest. He's in remission now, back up to a healthy 163 lbs. He also liked cream of wheat - I would add in butter and maple syrup to get the calories up. There is also a drink put out by health clubs - Gainer Matrix. I mixed it up in the blender w/milk and he started to finally gain back weight. It has tons of calories. I also warmed it for him - he couldn't tolerate anything cold. Hope this helps.

mar1949

RJMiller said:

My husband was diagnosed with stage IV (no metastes) Nasopharyngeal carcinoma in October 2003. He had chemo and radiation, then the follow-up chemo. He drank Boost and Ensure, but disliked it a lot. We finally switched him to Instant Breakfast. He found he could tolerate drinking it slightly warmed up. I gave it to him for breakfast, lunch and dinner. His weight at diagnosis was 190 (slightly overweight), down to 144 at the lowest. He's in remission now, back up to a healthy 163 lbs. He also liked cream of wheat - I would add in butter and maple syrup to get the calories up. There is also a drink put out by health clubs - Gainer Matrix. I mixed it up in the blender w/milk and he started to finally gain back weight. It has tons of calories. I also warmed it for him - he couldn't tolerate anything cold. Hope this helps.

My son refused Boost, Ensure, etc., but does drink Novasource from Novartis in either the orange or vanilla flavors. We had to special order it from Walgreen's. He also liked the vanilla flavored drink mix from Watkin's which can be ordered on-line. It is fairly high in protein, although he certainly could have used more calories. MM

talia

LostinVA said:

My heart and prayers go out to your husband. I was diagnosed with Nasopharyngeal Stage 3 in Feb/04 and went through 39 rad and 2 rounds of chemo. I completed my treatment at the end of June/04. During treatment and after I was also on the peg tube. I could not tolerate any formula no matter how slow or fast it went into my system. I must have tried 6 or 7 brands. I just couldn't keep them down. My throat completely closed up due to swelling, so I wasn't able to eat or drink for months and the direct result was that I lost 60 lbs. Thank God..I had the weight to spare. I found out when my treatment was almost finished and I felt like I was starving to death, that a peg tube can easily be converted to a "J" tube. The J tube bypasses the stomache and puts the food into the intestines. Once I bypassed my stomache, I was able to keep as many can down a day as I wanted with no nausea or throwing up. I managed to stabilize my weight after treatment and started feeling stronger. I only wish that I knew about te J tube sooner. I hope this information is helpful to you. By the way..it does get better. Recovery is a struggle, but things will improve. Please keep us posted.
A fellow survivor, Linda

hi linda thankyou for your reply, a few questions how long did you have the peg in? did you have the adjuvent chemo and if so how did you cope? My husbands doctor wants to do this as he says it increases his long term survival rate, however at the moment due to weightloss and an infection in his jaw they won't do it. they have already waited 3 months and can't wait any longer. i hope you keep well. talk soon. one more question any advice on dry throat.

LostinVA

talia said:

hi linda thankyou for your reply, a few questions how long did you have the peg in? did you have the adjuvent chemo and if so how did you cope? My husbands doctor wants to do this as he says it increases his long term survival rate, however at the moment due to weightloss and an infection in his jaw they won't do it. they have already waited 3 months and can't wait any longer. i hope you keep well. talk soon. one more question any advice on dry throat.

Hi Talia...I had the peg tube put in 2 weeks before my treatment started and I had it taken out 2 months after treatment ended. It was converted surgically to a J tube right after I had my 39th and last rad treatment. I was Stage 3, so I did not require more than 2 rounds of chemo and that was given in conjunction with the rad. Stage 4 seems to require that extra. I think that the total time the feeding tube was in my body was about 5 months. As far as dry mouth goes..I had that bad, so my ENT recommended taking Salagen which I resisted. I ended up taking 3 pills a day and I am glad I did. I now have a passable amount of saliva in my mouth and am up to 4 pills a day. When I first started taking the pill, I was nauseated and queasy, but I fought through the side effects and now there are none. The first month was rough, but the break in period was worth it. Some people say it doesn't work..but it works for me. I hope you can get your husband on the right track to finish his treatment. I know it is a challenge every day, but you can find a way with determination and faith. You both are in my prayers. Linda

JohnG

If it helps you sleep better, I had nasopharyngeal cancer stage 4 in 2002, and I completed treatment in 2003, and I feel pretty good now. I lost 60 pounds (I never got a peg), and I have put back on 40 of those 60 pounds. For a two month period, all I could eat was vanilla milkshakes melted to room temperature. The end of the radiation was pretty much the low point so it's probably all easier riding from where you are now. Good luck.

talia

JohnG said:

If it helps you sleep better, I had nasopharyngeal cancer stage 4 in 2002, and I completed treatment in 2003, and I feel pretty good now. I lost 60 pounds (I never got a peg), and I have put back on 40 of those 60 pounds. For a two month period, all I could eat was vanilla milkshakes melted to room temperature. The end of the radiation was pretty much the low point so it's probably all easier riding from where you are now. Good luck.

Hi john you say that you also had stage 4 nasopharyngeal cancer. what treatment did you have? my husband was supossed to have adjuvent chemo after initial chemo/radiation, but he wasn't physically strong enough to have it. However when they done the PET scan it showed that the tumor was gone, but they don't sound real positive about it not coming back. I am so terrified. how have you being or has anyone else had it come back? Any feedback would be helpful. thankyou