nasopharynx carcinoma...anyone else have this???

my husband was diagnosed 8/31/09 with undifferentiated neoplasm of the nasopharynx with squamous cell carcinoma. he is in stage 4.

he has a 3.5mm tumor on the left side of his neck that is wrapped around his jugulor vein. several other tumors on both sides of his neck in his lymph nodes, and in his ear canal (caused deafness in his left ear).

this is said to be a very rare cancer in america, more common in asia.

he has completed 2 of 3 rounds of chemo with a cocktail of cisplatin, 5-fu and docetaxel 5 days a week and takes home a "baby". he will then do 7 weeks radiation/chemo. if this doesnt shrink the tumor enough, they will do a radical neck dissection and remove the jugular vein on the left side.

is there anyone out there that has the same cancer?????

can u provide some info for us.

he is 43 years old, and was in great health. heck, we were vacationing in vegas 3 weeks before his diagnosis, although he did start to feel bad towards the end of that week which prompted the doctor visit.  he got a lump about a month earlier on his neck that wasnt going away and seemed to be getting bigger.

please give any info u can.

thank you and GOD bless u.

my dad was just diagnosis with the same thing .. he is in stage 4 also, he has mix feeling, very scare because the dr said it is a 50/50 % chance of survival .. but trying very hard to stay positive , as they said the best medication for cancer survival is to be optimistic .. think positive .. trying to do the best you can as the dr said that the treatment chemo and radiation will be 8 weeks total .. with a lot of discomfort .. pain ... one things he really worry is the feeding tube ... i don't know how that will work .. if anybody know please let me know .. back to what the dr is saying . .. is 8 weeks of treaments for a long happy life ahead of us .. if you think about it .. its TOTALLY WORTH IT ...

I have a best friend who has this, he is now finished with his treatments, and right now dealing with the radiation aftermaths. Everyone is so different in how the treatments will affect them. He didn't get sick wtih the chemo or radiation. The radiation after 2 weeks really started making him tired and of course the last two weeks of it were very draining. He never lost his voice, but the chemo/radiation did make it difficult to eat anything after a while just due to the food or water feeling horrilbe in his mouth. He never had to get the feeding tube, he still makes himself drink 3 high calorie shakes a day but that is all. He had some weight he could stand to lose. Right now he is in bed with a horrible excess mucus problem that they say will subside within 2 weeks. I just recently saw pictures, he does have burns on his neck. I just try to be there for him and research research research and these forums are the best place to find hints and tips from others who fight this monster. My friend also had stage 4, cancer found in other organs. You have to have a Dr. who is very positive but still upfront with u. He says it is imperative to find a Dr like that. My prayers are with you all!

Dear homershoney,  When I read your post it brought back lots of thoughts about what is ahead for your “honey”.  As I, like many others on this sight, have had very similar cancers; mine was tonsilar cancer and stared much the same way.  The main difference was that mine started in the tosil and my tumor grew to 6cm before it was caught. It looked like I was wearing a dill pickle under my left ear.

  Before I go on I would like to mention something that helped me; believe he and you will make it through this, there will be challenges but none that you booth of you can’t concur.  My chemo was the same type of cocktail and I also had my companion pump filled with 5FU that was put on Monday, refilled it on Wednesday, and wear until Friday, this went on for three sessions two weeks apart.  It was not enough though to get rid of it so another 7 weeks of radiation and more chemo followed, with again negative results.  Then (minus 60 lbs) it was time (May of this year) for the bilateral neck dissection with removal of my left jugular vein and lots of lymph nodes on both sides.  Yesterday I had second PET after surgery and since the first one was clear I’m sure this will be good also.

  I do not want to make this too long but one tidbit of advice is have him drink, drink, then drink more liquid, it will be hard but he can do it.  Plus if he does not have one already a feeding tube is almost a necessity for the majority of people with this beast.  Please feel free to ask any type question on here that you think of and I’m certain you will find someone that has experienced it.

So until later God bless to you both, Dave.

thank u all for your comments and words of support. i will be praying for u all, too.

we are both very positive about him beating this and are lucky to have a huge support system in family and friends.

we live outside of Houston, have great oncologists and ent dr. that are all M.D. Anderson trained doctors which is said to be the best cancer center in America. i believe us to be in the best hands professionally. They are all super-positive saying they will not put a % to his chances, that they cannot find an expiration date on him anywhere!

thanks again everyone!

teresa

My husband was diagnosed with Undifferentiated Stage 4 Squamous Cell Carcinoma of the throat. Andy started 35 daily treatments of radiation and 3 chemo's. He finished on April 10, 2009. I don't wish this on anyone to have to go through it, nor the caregiver. He has had 3 PET scans since ending his treatments. The last Pet scanned showed that there was still activity in the lower part of the throat. He is scheduled for a neck dissection on Nov. 5 with a 4-5 day hospital stay. He has had a PEG tube in for 8 months. However, he has just started to begin to eat again. We are hoping that they will remove it soon. Having radiation to the throat I think is one of the worst place to have the cancer. Months and months of nasty muccus, pain, not being able to swallow or eat, taste is gone. having hearing problems in one ear. Andy was a healthy 59 year old man, he was a runner, never smoked nor drank weighting average 197-205, and he got down to 153 pounds. He weighted 166 when he went to the doctor last week.

Is there any such thing as CANCER FREE? I think you can go into remission for years, but there is always that chance of it coming back or in another area. I pray that after the neck dissection and another Pet scan that Andy will go into remission. And I pray for all of you that have cancer also.

Patty (California)

My husband was diagnosed 9/19/06 at the age of 34 with NPC his tumor was a nasty one as they all are, I can't remember the size of the tumor exactly but it had evaded his sinuses ate threw the bone between his eyes and at the base of his skull, wrapped around his brain stem and was laying on his optic nerve which caused his eye to turn into the nose completely... At diagnosis I was told they didn't know if he would live a month 30-40 % chance of survival and after 11 months of hell... July 7th, 2007 he finally had his PET scan and all signs of cancer where gone he has now been in remission alomst 2 in a half years.... POSITIVE ATTITUDE GOES ALONG WAY NEVER EVER GIVE UP!!!! Gary did his last radiation treatments admitted to the hospital his white counts had bottomed he was neutropenic litterally on his death bed and was sent home after that treatment to die, I fought just as hard as he did and together me telling him he wasn't going anywhere and pushing the food in his feeding tube even when he didn't think he could eat a thing and doing his IV's at home keeping him hydrated we got him threw..... Be strong your in for the fight of a life time but you ARE both srtrong enough to make it threw!!! God Bless you all and much love

P.S The hospital where he did treatment considers him there miracle  of 2007 so this cancer can be beat!!! Keep fighting!!!!