Newly dianogsted with NPC stage3
My husband 47 years old Vietnamese was dianogsted with NPC undifferenciated stage 3 on Monday this week. We are still in shock and shaking as I am typing this. We would like to learn all about this rare cancer and seeking support to fight this battle. We have 3 small children and so there is no other option but fight, fight and fight.
Comments
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Welcome
Tuongvi,
Welcome to this site. Sorry to hear of your husband's diagnosis. I know this is a hard time for you two, full of shock, fear and indecision. I'm glad to see it's also full of determination. Most everyone here will tell you the right attitude makes a huge difference. I do not have any experience with your husband's type of cancer, but there are people who come to this site who do, and will probably see your post and reply pretty soon. If you've been reading posts here, you already know this is a wonderful site for information and support. Whenever you have questions, or just want to comment on how things are going for you, let us know. Be strong.0 -
Tuongvi.Pam M said:Welcome
Tuongvi,
Welcome to this site. Sorry to hear of your husband's diagnosis. I know this is a hard time for you two, full of shock, fear and indecision. I'm glad to see it's also full of determination. Most everyone here will tell you the right attitude makes a huge difference. I do not have any experience with your husband's type of cancer, but there are people who come to this site who do, and will probably see your post and reply pretty soon. If you've been reading posts here, you already know this is a wonderful site for information and support. Whenever you have questions, or just want to comment on how things are going for you, let us know. Be strong.
Just wanted to say I am sorry to read of your husband's diagnosis. Although my cancer was different than your husbands, I can tell you that there are other NPC survivors on our that can offer you much info and support.
Blessings,
Sweet0 -
Hi Tuongvi
Welcome to the family, sorry to hear about your husband having this stuff but don’t be afraid. I too have NPC and so do a lot of others here on CSN. I was 47 when I first got NPC and I am now 55 so there is life after having it.
Question: do you live here in the US or will you be doing your treatment someplace else. My advice to you right now it to listen to your doctors on what treatment is available in your area. We will all be here to help you both through this.
Take care and keep posting
Hondo0 -
Welcome
Hello Tuongvi, I'm glad you found the board, and it's good that you posted here to begin your familys' journey. I know just how you feel, in shock. It takes a few days just to get your head working again. Just know your husband can win his fight. Take it step at a time, get opinions if you think you need them, and begin to set up the treatment plan. As you have specific questions, use the "seach" tool here to see the log of previous answers, and post so that people here can offer their experience and their support.
best, Hal0 -
We are in Maryland US andHondo said:Hi Tuongvi
Welcome to the family, sorry to hear about your husband having this stuff but don’t be afraid. I too have NPC and so do a lot of others here on CSN. I was 47 when I first got NPC and I am now 55 so there is life after having it.
Question: do you live here in the US or will you be doing your treatment someplace else. My advice to you right now it to listen to your doctors on what treatment is available in your area. We will all be here to help you both through this.
Take care and keep posting
Hondo
We are in Maryland US and the treatment will be at Johns Hopkins Hospital in Baltimore. We really feel like we are in good hands with these doctors, but I still so scare.
Thanks all of you here for your kind words and support. As a caregive I konw I have so much to learn and this journey wont be easy but I want to be strong for him and our children.0 -
Hi TuongVi
I know how that feel, my wife went through the same when I told her I had NPC stage 4 six years ago and my "General" has patiently fought the battle with me since. You come to the right place with the right attitude and many wonderful people here will be very happy to give you their support.
Be strong and keep on posting,
seenanN0 -
Hi TuongviTuongvi said:We are in Maryland US and
We are in Maryland US and the treatment will be at Johns Hopkins Hospital in Baltimore. We really feel like we are in good hands with these doctors, but I still so scare.
Thanks all of you here for your kind words and support. As a caregive I konw I have so much to learn and this journey wont be easy but I want to be strong for him and our children.
Johns Hopkins you are in the best place to be having NPC. Being scare is all part of having cancer and we all go through it at sometime. We will all be here for you and help you through this just take care and listen to what your doctors are telling you if you don’t understand something do be afraid to ask them to explain it.
All the best to you both
Hondo0 -
You can beat it!
Tuongvi, I was diagnosed with stage 3 NPC last year. It is a very common cancer in South East Asia they nickname this cancer "chinese cancer" because it affects mostly chinese descents of South China although not limited to other races as well. In Singapore and Malaysia where I seek treatment, the doctors are very familiar with this type of cancer. They showed me boxes of files with NPC patients. I am sure you are in good hands with people at John Hopkins. I lived in VA. The prognosis are good. I went through 7 weeks of IMRT radiation and 4 out of 6 scheduled chemo. As you can read on this site, people reaction to the treatments are different. I lost 25 lbs, was hospitalized due to some complication after treatment and lost my voice during treatment. It was all just one year ago. Now I feel good. my energy is 100% back although I cut back on my running (I used to run 8miles 3 times a week)my saliva is almost normal (it will dry up during and after treatment) my appetite is good (although I changed my diet). The only thing is my right ear has suffered from after effect of radiation, it is prone to inflammation and infection. I just want to tell you to be courageous. My wife is the care giver and she is doing an amazing job that has helped me heal faster and better. She used to be so scared of the "C" word because it sounds like death penalty but now after overcoming this, she is not anymore. She knows that we can beat this monster through love, prayers, supports and knowledge which are abundantly available. Take care,
Frank0 -
know just how you feelseenanN said:Hi TuongVi
I know how that feel, my wife went through the same when I told her I had NPC stage 4 six years ago and my "General" has patiently fought the battle with me since. You come to the right place with the right attitude and many wonderful people here will be very happy to give you their support.
Be strong and keep on posting,
seenanN
My husband has cancer of the layrnex. He has had 4 cemo treatments and 15 rad treatments. Now he is in the hospital. He cannot swollow has to be on a feeding tube. The docters have to stop all treatments, just can't take no more right now, maybe later? It is very very hard seeing him like this!! I think that I will have to talk to someone soon. It is way to hard going this alone. I have a sister here, we talk sometimes but I find myself staying to myself It's hard to explain. She ask how we are doing I always say "fine". It's very scary for sure, Guess I will have to get some kind of meds or something.0 -
Tuongvifrank10g said:You can beat it!
Tuongvi, I was diagnosed with stage 3 NPC last year. It is a very common cancer in South East Asia they nickname this cancer "chinese cancer" because it affects mostly chinese descents of South China although not limited to other races as well. In Singapore and Malaysia where I seek treatment, the doctors are very familiar with this type of cancer. They showed me boxes of files with NPC patients. I am sure you are in good hands with people at John Hopkins. I lived in VA. The prognosis are good. I went through 7 weeks of IMRT radiation and 4 out of 6 scheduled chemo. As you can read on this site, people reaction to the treatments are different. I lost 25 lbs, was hospitalized due to some complication after treatment and lost my voice during treatment. It was all just one year ago. Now I feel good. my energy is 100% back although I cut back on my running (I used to run 8miles 3 times a week)my saliva is almost normal (it will dry up during and after treatment) my appetite is good (although I changed my diet). The only thing is my right ear has suffered from after effect of radiation, it is prone to inflammation and infection. I just want to tell you to be courageous. My wife is the care giver and she is doing an amazing job that has helped me heal faster and better. She used to be so scared of the "C" word because it sounds like death penalty but now after overcoming this, she is not anymore. She knows that we can beat this monster through love, prayers, supports and knowledge which are abundantly available. Take care,
Frank
I also was NPC, unknown Primary, and went thru C&R from 2-4/09. I echo the others about Johns Hopkins- major place to be. The survival rate is great, and your husband will be okay. It can get a bit rough during treatment, but there's a number of factors involved, and the Drs. will help to make it all okay- but you have to let them know what's what with how your husband is doing. NUTRITION will be a key to getting thru it the best, as he will lose some weight. And "keep it in the Positive," Tuongvi. There is no reason to focus on anything negative. He's gonna survive, and he'll be okay post-treatment. I returned to work a month after my last rad.
We'll need to know what his treatment specifics will be to advise as best we can. Chemo and Rads at the same time are the standard. The mouth does take a hit, so eating can be a problem. I got both a Port and PEG feeding tube, and had both for well over a year. Having them seems worse than it really is. Trust me.
At this time, Tuongvi, you are in what was the most difficult stage for me- the unknown elements, and anxiety. It's gonna be all right. This is 2011, and great advances have been made in H&N. The Drs. will help with the difficult times with medicine, so the suffering will not be the issue you might think it will be. AND HE WILL SURVIVE- KNOW THIS IS FACT.
And there will come a time when he looks back on this now, and think to himself, "I don't know why I was so worried."
Believe
kcass
we are all here for you and your husband. all you gotta do is let us help, so please keep us informed/updated.0 -
Thank youKent Cass said:Tuongvi
I also was NPC, unknown Primary, and went thru C&R from 2-4/09. I echo the others about Johns Hopkins- major place to be. The survival rate is great, and your husband will be okay. It can get a bit rough during treatment, but there's a number of factors involved, and the Drs. will help to make it all okay- but you have to let them know what's what with how your husband is doing. NUTRITION will be a key to getting thru it the best, as he will lose some weight. And "keep it in the Positive," Tuongvi. There is no reason to focus on anything negative. He's gonna survive, and he'll be okay post-treatment. I returned to work a month after my last rad.
We'll need to know what his treatment specifics will be to advise as best we can. Chemo and Rads at the same time are the standard. The mouth does take a hit, so eating can be a problem. I got both a Port and PEG feeding tube, and had both for well over a year. Having them seems worse than it really is. Trust me.
At this time, Tuongvi, you are in what was the most difficult stage for me- the unknown elements, and anxiety. It's gonna be all right. This is 2011, and great advances have been made in H&N. The Drs. will help with the difficult times with medicine, so the suffering will not be the issue you might think it will be. AND HE WILL SURVIVE- KNOW THIS IS FACT.
And there will come a time when he looks back on this now, and think to himself, "I don't know why I was so worried."
Believe
kcass
we are all here for you and your husband. all you gotta do is let us help, so please keep us informed/updated.
Thanks Kcass and all of you here. I am so glad I find this place during this difficult time.
Kcass what is unknown primary? Do I need to ask the doctor if my husband's NPC is known or unknown primary. They did not mention this at the last meeting. We are going to meet with them again on Friday to talk about the treatment plan but I am so overwhilm with information and don't konw what questions to ask. Advise please!!! Are they usually give you all the options aivalable and you will pick one or go with what they recommended?0 -
I am very sorrysue5749 said:know just how you feel
My husband has cancer of the layrnex. He has had 4 cemo treatments and 15 rad treatments. Now he is in the hospital. He cannot swollow has to be on a feeding tube. The docters have to stop all treatments, just can't take no more right now, maybe later? It is very very hard seeing him like this!! I think that I will have to talk to someone soon. It is way to hard going this alone. I have a sister here, we talk sometimes but I find myself staying to myself It's hard to explain. She ask how we are doing I always say "fine". It's very scary for sure, Guess I will have to get some kind of meds or something.
I am so sorry. Please stay strong Sue. How is he doing today? I am here if you want to talk0 -
TuongviTuongvi said:Thank you
Thanks Kcass and all of you here. I am so glad I find this place during this difficult time.
Kcass what is unknown primary? Do I need to ask the doctor if my husband's NPC is known or unknown primary. They did not mention this at the last meeting. We are going to meet with them again on Friday to talk about the treatment plan but I am so overwhilm with information and don't konw what questions to ask. Advise please!!! Are they usually give you all the options aivalable and you will pick one or go with what they recommended?
An unknown Primary is when they can't find the tumor source of the Cancer, which they would likely remove by surgery. With the PetScan/CT and biopsy, they will know if they've found it. If they haven't told you, then your husband is probably like me, and a number of others.
As for the questions to ask, a lot will depend on the course of treatment the Drs./Onco and Rad recommend. If they don't advise both Chemo and Radiation- that's kinduva red flag, as getting both is the standard for H&N.
What to expect: 35 radiation sessions, along with Chemo, a surgical installment of a Port are typical. Also possible he will be advised to get a feeding tube. Most get 3 Chemos, which will taked several hours on three different days over the 5 weeks of treatment, and the Port is for the FU5 pump he'll likely get, and which he'll have for 96-hour stints.
Mostly, you are on "hold" with waiting for your Dr. meet this Friday. Hope you have a regular Pharmacy you're on good terms with, as that will be needed. Will be looking for an update after your Friday meet. You might wanna take a pad and pen to write things down, as sometimes they give you a lot to remember all at once. Also, I hope you have a good relationship with your regular Dr., as that can help a lot, escpecially if he is having anxiety issues (I did). Again, Tuongvi, this might be the roughest of times for you two, as there's still a lot new happening. I would advise you to have him trying to "bulk up" a little in preparation of the weight loss. The Nutritional drinks of Boost or Ensure will become major players in the future for his diet, so no time like the present to give them a try, along with a daily multi-vitamin.
Best of luck on Friday, Tuongvi, and I'm hoping and Praying for you two.
Believe
kcass0 -
TuongviKent Cass said:Tuongvi
An unknown Primary is when they can't find the tumor source of the Cancer, which they would likely remove by surgery. With the PetScan/CT and biopsy, they will know if they've found it. If they haven't told you, then your husband is probably like me, and a number of others.
As for the questions to ask, a lot will depend on the course of treatment the Drs./Onco and Rad recommend. If they don't advise both Chemo and Radiation- that's kinduva red flag, as getting both is the standard for H&N.
What to expect: 35 radiation sessions, along with Chemo, a surgical installment of a Port are typical. Also possible he will be advised to get a feeding tube. Most get 3 Chemos, which will taked several hours on three different days over the 5 weeks of treatment, and the Port is for the FU5 pump he'll likely get, and which he'll have for 96-hour stints.
Mostly, you are on "hold" with waiting for your Dr. meet this Friday. Hope you have a regular Pharmacy you're on good terms with, as that will be needed. Will be looking for an update after your Friday meet. You might wanna take a pad and pen to write things down, as sometimes they give you a lot to remember all at once. Also, I hope you have a good relationship with your regular Dr., as that can help a lot, escpecially if he is having anxiety issues (I did). Again, Tuongvi, this might be the roughest of times for you two, as there's still a lot new happening. I would advise you to have him trying to "bulk up" a little in preparation of the weight loss. The Nutritional drinks of Boost or Ensure will become major players in the future for his diet, so no time like the present to give them a try, along with a daily multi-vitamin.
Best of luck on Friday, Tuongvi, and I'm hoping and Praying for you two.
Believe
kcass
Hi Tuongvi welcome to the boards and I just wanted to say I was treated for NPC last march I had a good stage four as the doctor said. It only spread to one side of my lymph node which is the right side of my neck. I had surgery on removing that cancer lymph node and had about 3 rounds with 5FU and 4 arounds of cisplatinum and 7 weeks 5 days 20mins a day for radiation. As of last November I am cancer free but the chemo doctor said that he wants to do PET scans every 6-8months for next 3 years to keep eye on it and I also have to visit my ENT doctor every 2 months for the first year to keep eye on it. I will also find out how much I have to go to radiation doctor for this first year in april. I just wanted to say you will get through this and make sure you come back to this board if you have any questions. I am sure me and some other members like hondo will point you in the right direction and how we dealt with the NPC cancer.
By the way I am only 25 and married so.
Dont be scared to ask questions on the board to the members who had NPC.0 -
NPC
Hi Tuongvi,
Sorry to read about your husband and sorry for how it must have already affected your lives. I too was diagnosed with NPC back in May 2010. Mine was stage 4 and had spread to the lymph nodes on both sides of my neck and had also metastasized to a couple spots on my spine and my chest. I had been experiencing constant migraine-like headaches for about 6 months as the tumor on my left neck lymph node was squeezing my carotid artery and preventing blood from getting to my brain. As I am caucasian it took quite awhile for diagnosis since it is quite rare. I received 3 introductory rounds of chemo using the drug Cisplatin once every 3 weeks with the drug Gemzar once a week during that introductory period. After the first round of Cisplatin the pain I was in completely went away. After the second round I had a PET/CT and was NED. 2 rounds of chemo had completely cleared everything up. Still, I did one more round and then started the standard 35 rads to the head and neck concurrent with another 3 rounds of Cisplatin of which I only did 2 because of low blood counts, significant hearing loss and tinitus. I also received 15 rads to my chest, 5 to my lumbar and 4 to my sacrum concurrent with the other rads. I am now 5 weeks post treatment. I chose to go with an all organic diet during the entire course of treatment that was mainly vegan and entirely free of any processed sugar. I did have a feeding tube installed and needed it at about the 3 week mark of radiation until just 5 days ago, a little more than 2 months total. I made my own food to pour down it with a Vitamix blender using almond milk as a base and adding organic veggies and hemp protein powder as well as an organic whole food powdered supplement. I exercised every day as much as I could, mainly walking and yoga and received accupuncture 2-3 times weekly. I used medical marijuana to help with the nausea from chemo and vomitted only twice the entire treatment. My main side effects were fatigue, sore throat and tongue and burned skin from the radiation. I have also worked with a Chinese medicine clinic since diagnosis and have been using the supplements that they prescribed consistently. I also have done 1-2 coffee enemas daily since diagnosis and have never had any problems with constipation. By far the worst part of treatment has been the 4 weeks after treatment. Fatigue seemed to only get worse until about 2 weeks ago and I experienced anxiety and depression that were overwhelming at times. I still exercised daily and maintained my organic vegan diet. That is how I did my treatment. I feel fairly good today. I tell you this because most likely your doctors will tell you to eat whatever you want and not to take supplements. Most cancer survivors will also tell you the same thing. As far as I can tell; I experienced fewer side effects than most people and recovered faster though my disease had progressed further. I believe this was due to the diet and exercise regimen that I adhered to. Also, major, major prayer. Without the help of God and my friends and family I would most likely be dead. The book "Anti-cancer" was helpful as was "The China Study" and "Foods to Fight Cancer" and "Beating Cancer with Nutrition". Now is not the time to abandon good nutrition, on the contrary, now is the time to eat healthier than ever as nutrition is our body's first line of defense and healing. One of the other survivors on here, Scambuster,has many good links to incredible information that will help you. Putting some weight on now would be helpful but not at the expense of good nutrition. Getting second and third opinions are also advisable. This treatment is rough but need not be more so due to poor diet and nutrition. It is totally doable and can be the last treatment ever needed if done correctly. As you will only spend about an hour daily at your doctors, the other 23 are yours to treat yourself. I suggest you have a game plan going in and that you stick with it all the way through. Again, I am so sorry that you and your husband have to go through this. My prayers for you are that your treatment will be successful, your side effects minimal and your recovery speedy. I am here to assist however I can as are all the other wonderful brothers and sisters on this board. Call on us anytime.
Bob0 -
HANG IN THERE
Welcome to the site. I know you both are scared and have lots of questions. It will be a long hard fought battle but this can be done. I read you are seeing docs. at Hopkins. EXCELLENT FACILITY.
I am praying for you both
Best
Mike0 -
Fight, fight, fight
Hi, Tuongvi:
I think that you summed it up correctly with your last sentence. Yes, it's a fight. I'm an NPC survivor with my last treatment in March 2004. (Like childbirth, you forget the pain and hardship, and only remember the reward/joy of life.)
You need to trust your doctors who will probably prescribe the standard radiation in conjunction with chemotherapy. It is not an easy treatment, but definitely do-able. It's six months -- so always look to the end of the battle and expect to come out the victor.
Feel free to post your questions and concerns as your husband goes through his treatment. Everyone reacts to the treatment differently, so don't read/worry too much ahead of time.
Christmas0 -
NPC
Hi T,
Sorry to hear about your husband's NPC. I was a Stage 4 of 4 in 2002 with my diangose report given to me on Valentine's day to bring home to my wife. But here I am 9 years later. A bit of side effects from my strong and aggressive treatment but all is well.
My baby sister also got the same diangose Stage 3 NPC 2 weeks ago and I think she is as nervous as your husband is now. But please let him know Stage 3 a GREAT NEWS considering that most NPC patient do not know they have cancer until late stage 4 like me and I am interested to finding out from you how it got discovered? The reason is nobody really scan for it since it is not a common form of cancer here. Most of us who has NPC are from Southern region of Asia so he must be from Vietnam originally.
I am not sure if your Oncologist or Radiation doctors has given you any treatment schedules yet but Stage 3 most likely is Chemo treatment of one time evry three weeks for about 3 times and then they test again for any further need in treatment. radiation will most likely be 15 minutes or so per day for a few weeks and the he is DONE :-) My treatment was Chemo 5 days a week along with 1 hour of radiation per day also for about 7 weeks straight. It was very tough on the body but I made it though.
So let your husband know to thank god if he believes in one that he has this a few years later than me and that medicine and technology is REALLY working on his side. He has no worry and all will be well. he just need to eat, eat and eat even if he does not feel like it - He has to to stay strong to allow his body and mind to take the treatment.
let him know he is not doing it along. My sister will most like start in a couple of weeks when they finalized with some CAT Scan and we'll will update each other with their progress since they are both at the same stages.0 -
Hi Cartierleecartierlee said:NPC
Hi T,
Sorry to hear about your husband's NPC. I was a Stage 4 of 4 in 2002 with my diangose report given to me on Valentine's day to bring home to my wife. But here I am 9 years later. A bit of side effects from my strong and aggressive treatment but all is well.
My baby sister also got the same diangose Stage 3 NPC 2 weeks ago and I think she is as nervous as your husband is now. But please let him know Stage 3 a GREAT NEWS considering that most NPC patient do not know they have cancer until late stage 4 like me and I am interested to finding out from you how it got discovered? The reason is nobody really scan for it since it is not a common form of cancer here. Most of us who has NPC are from Southern region of Asia so he must be from Vietnam originally.
I am not sure if your Oncologist or Radiation doctors has given you any treatment schedules yet but Stage 3 most likely is Chemo treatment of one time evry three weeks for about 3 times and then they test again for any further need in treatment. radiation will most likely be 15 minutes or so per day for a few weeks and the he is DONE :-) My treatment was Chemo 5 days a week along with 1 hour of radiation per day also for about 7 weeks straight. It was very tough on the body but I made it though.
So let your husband know to thank god if he believes in one that he has this a few years later than me and that medicine and technology is REALLY working on his side. He has no worry and all will be well. he just need to eat, eat and eat even if he does not feel like it - He has to to stay strong to allow his body and mind to take the treatment.
let him know he is not doing it along. My sister will most like start in a couple of weeks when they finalized with some CAT Scan and we'll will update each other with their progress since they are both at the same stages.
Welcome to the family and glad to have you with us, you have a very interesting story with NPC of both you and your sister having this crap. I too am NPC, got mine back in the last part Nov 2002 just in time for Christmas. I finish treatment in Feb of 2003 and NPC came back again in 2004 had to do radiation a 2nd times with Chemo, almost kill me then it came back again in March 2006 but the last time I did not do any treatment. I am interested on how you are doing after 9 years and what side affects you are having.
Hope you plan to stay
Hondo0 -
HiHondo said:Hi Cartierlee
Welcome to the family and glad to have you with us, you have a very interesting story with NPC of both you and your sister having this crap. I too am NPC, got mine back in the last part Nov 2002 just in time for Christmas. I finish treatment in Feb of 2003 and NPC came back again in 2004 had to do radiation a 2nd times with Chemo, almost kill me then it came back again in March 2006 but the last time I did not do any treatment. I am interested on how you are doing after 9 years and what side affects you are having.
Hope you plan to stay
Hondo
I will tell you this. It's not going to be easy and you yourself will need lots of patients. I had NPC stage III as well. I am 39 and have been cancer free for about 5 months now. I go in for a follow up PET scan in a couple of months. Though still dreaded, i have hope. I tell you these things, because hope is the one thing you need to hold on too. It will be a hard road for both of you, but you can get through it. Several of us here have and life is different, but it's still life. I wish you and your family the best and i hope to hear from your husband as well. Take care friend.
James0
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