nasopharyngeal cancer,type III

sabado
sabado Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
my wife has just been diagnosed with this cancer and I am wondering if anyone out there has gone through the treatment, radiation or whatever and could provide some feedback, thanks.
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Comments

  • karenleung
    karenleung Member Posts: 13
    Your wife's type of cancer is very common in HK and the survival rate after treatment of radiotherapy is very high here. I have stage IV tonsil cancer and received intensive radio and chemotherapy a year ago. Still surviving and was back to normal work six months after the treatment.
  • rrman
    rrman Member Posts: 12
    Hi, It's a fact that your wife has somewhat of a common cancer. Meaning that it's highly treatable and also curable. I was diagnosed with squamous cell cancer of my right tonsil last Dec 4th,2001. I recieved 39 radiation treatments and six chemo (Cisplatan) treatments. You've got alittle bit of a rough road ahead of you, however, there is a light at the end of the tunnel...after treatment it only gets better everyday. If you have any questions please feel free to contact me. I've been there and it's so important to have support of any kind. I wish you the best of luck...Peter
  • kkklou
    kkklou Member Posts: 1
    rrman said:

    Hi, It's a fact that your wife has somewhat of a common cancer. Meaning that it's highly treatable and also curable. I was diagnosed with squamous cell cancer of my right tonsil last Dec 4th,2001. I recieved 39 radiation treatments and six chemo (Cisplatan) treatments. You've got alittle bit of a rough road ahead of you, however, there is a light at the end of the tunnel...after treatment it only gets better everyday. If you have any questions please feel free to contact me. I've been there and it's so important to have support of any kind. I wish you the best of luck...Peter

    Hi, my husband he also diagnosed with this nasopharyngeal cancer with type IIB just Sep 28 2002. He already received 20 radiation & 2 CHEMO (Cisplantan) treatments. He been told he will receive another 15 radiaion with (IMRT) and one more chemo.

    After these 20 rediations & 2nd CHEMO he looks very weak and sleep a lot. He refused to eat anything due to his sore throat & tast changed. He also sleep a lot. Is that normal? what can I do to make him eat more and drink more? It is very hard to see him like that. Thanks!
  • jerrikehoe
    jerrikehoe Member Posts: 27
    HI my name is Jerri and I have been doing battle with this typw of cancer for 22 years now and I am very happy to be able to say I am still in the battle.
    this is a very difficult cancer but the main thing is there are survivors and I am one of them. I have had numerous surgery and reccurrances however I began my journey with this thing at age 22 I am now 55 and I do hope this offers you some encouragement. My email is jerrikehoe@hotmail.com and if I can be of help or answer any questions please feel free to contact me.
  • karenleung
    karenleung Member Posts: 13
    kkklou said:

    Hi, my husband he also diagnosed with this nasopharyngeal cancer with type IIB just Sep 28 2002. He already received 20 radiation & 2 CHEMO (Cisplantan) treatments. He been told he will receive another 15 radiaion with (IMRT) and one more chemo.

    After these 20 rediations & 2nd CHEMO he looks very weak and sleep a lot. He refused to eat anything due to his sore throat & tast changed. He also sleep a lot. Is that normal? what can I do to make him eat more and drink more? It is very hard to see him like that. Thanks!

    I know how you feel when seeing your husband suffer. Don't worry, it is absolutely normal to feel very weak and tired after the treatment. The sore throat and change of taste will last quite some time even when the treatment has ended. No matter how difficult eating is, you must push your husand to take enough nutritious food to fight the battle. If he resuses to eat, I think the doctor will consider tube feeding and he will suffer even more. You must not lose patience with him. Tell him things will get better when the treatment is over. Trust the doctors.
  • TAURIAN6
    TAURIAN6 Member Posts: 1
    Hello; my name is Nicole. I was diagnoded with this same cancer in dec. 2001. Went through a double dose of chemo and radiation in 2002. treatmets were completed in May of 2002. My oncologist released me to go back to work in February this year. Just know that your wife will be fine.
  • _xia_
    _xia_ Member Posts: 13
    kkklou said:

    Hi, my husband he also diagnosed with this nasopharyngeal cancer with type IIB just Sep 28 2002. He already received 20 radiation & 2 CHEMO (Cisplantan) treatments. He been told he will receive another 15 radiaion with (IMRT) and one more chemo.

    After these 20 rediations & 2nd CHEMO he looks very weak and sleep a lot. He refused to eat anything due to his sore throat & tast changed. He also sleep a lot. Is that normal? what can I do to make him eat more and drink more? It is very hard to see him like that. Thanks!

    Dear kkklou.

    I ended my treatment for Nasopharyngeal Cancer WHO II B (type II B) Stage IV in November 2002.

    I am interested to speak to other patients or family members with this type of cancer.

    I have received 9000 Gy - 31 treatments of Radiation (including a boost in the Nasopharynx and in the neck) and the Chemotherapy Cisplatin and 5 FU.

    I am a 35 year old woman with Baltic/Finnish and Balkan/Mediterranean genes.

    As my Radiation Oncologist mentioned, Nasopharyngeal Cancer is most common in Southeast Asia:

    http://www.asiaweek.com/asiaweek/magazine/2000/0602/as.health.html

    One thing this article didn't mention is the frequency of this type of cancer in Greenland and Alaska with its Inuit and Eskimo population.

    The article did mention this type of cancer also being more common in North Africa; For instance in Algeria, Tunisia and Marocco.

    Most Nasopharyngeal Cancer patients in France are of Berber descent.

    Please feel free to write me. I'd like to be of assistance as much as I can.

    Mia

    yksi@hotmail.com
  • tonynedna
    tonynedna Member Posts: 2
    Sabado,
    My wife was diagnosed with NPC 18 months ago but after the standard treatment she had metatastasis to the bone. She's now off the standard treatment and taking Chemo at Johns Hopkins. Next month were going to Houston to participate in genetic Clinical trials at Baylor University. You and your wife have a very long road ahead. My wife's cancer was also stage 3 (i think) when diagnosed, it had spread to lynph node of her neck. Is your wife asian...mine is filipino. I would like to correspond if you feel up to it.

    Take Care
    Tony
  • _xia_
    _xia_ Member Posts: 13
    Dear Sabado,

    I ended my treatment for Nasopharyngeal Cancer WHO II B (type II B) Stage IV in November 2002.

    Nasopharyngeal WHO II B (poorly differentiated) is a subgroup of, and similar to WHO III (undifferentiated) and different from WHO I (well differentiated) in information I was given from a Radiation Therapist at Stanford Hospital, California where I was being treated.

    I am interested to speak to other patients or family members with this type of cancer.

    I have received 9000 Gy - 31 treatments of Radiation (including a boost in the Nasopharynx and in the neck) and the Chemotherapy Cisplatin and 5 FU.

    As my Radiation Oncologist mentioned, Nasopharyngeal Cancer is most common in Southeast Asia:

    http://www.asiaweek.com/asiaweek/magazine/2000/0602/as.health.html

    One thing this article didn't mention is the frequency of this type of cancer in Greenland and Alaska with its Inuit and Eskimo population.

    The article did mention this type of cancer also being more common in North Africa; For instance in Algeria, Tunisia and Marocco.

    Please feel free to write me. I'd like to be of assistance as much as I can.

    From my heart I wish your wife well and keeping strong.

    Mia

    yksi@hotmail.com
  • _xia_
    _xia_ Member Posts: 13
    _xia_ said:

    Dear kkklou.

    I ended my treatment for Nasopharyngeal Cancer WHO II B (type II B) Stage IV in November 2002.

    I am interested to speak to other patients or family members with this type of cancer.

    I have received 9000 Gy - 31 treatments of Radiation (including a boost in the Nasopharynx and in the neck) and the Chemotherapy Cisplatin and 5 FU.

    I am a 35 year old woman with Baltic/Finnish and Balkan/Mediterranean genes.

    As my Radiation Oncologist mentioned, Nasopharyngeal Cancer is most common in Southeast Asia:

    http://www.asiaweek.com/asiaweek/magazine/2000/0602/as.health.html

    One thing this article didn't mention is the frequency of this type of cancer in Greenland and Alaska with its Inuit and Eskimo population.

    The article did mention this type of cancer also being more common in North Africa; For instance in Algeria, Tunisia and Marocco.

    Most Nasopharyngeal Cancer patients in France are of Berber descent.

    Please feel free to write me. I'd like to be of assistance as much as I can.

    Mia

    yksi@hotmail.com

    I wrote an error: Originally I was to have been given 33 treatments of radiation, but in the end it was 41 total - including a boost in the Nasopharynx and the neck.

    I have several side effects and would be happy to discuss them with others - patients or family members.

    @--}}--}}--------
  • Kimmy37
    Kimmy37 Member Posts: 1
    I was wondering how things were going with your wife....my boyfriend just found out that he has nasopharyngeal cancer (undifferentiated) that has spread to his lymph nodes...they dont want to do surgery. They said radical radiation and chemo for eight weeks instead. He is in stage 4. I am so scared for him. But i am going to stay positive. I have to...he is a very strong man and I know he can fight this. Do you know if this is a curable cancer? It is so rare in the U. S. that it is hard to find much info. If ANYONE has info on this, please reply.....thank you
  • rogerbfi
    rogerbfi Member Posts: 16
    Kimmy37 said:

    I was wondering how things were going with your wife....my boyfriend just found out that he has nasopharyngeal cancer (undifferentiated) that has spread to his lymph nodes...they dont want to do surgery. They said radical radiation and chemo for eight weeks instead. He is in stage 4. I am so scared for him. But i am going to stay positive. I have to...he is a very strong man and I know he can fight this. Do you know if this is a curable cancer? It is so rare in the U. S. that it is hard to find much info. If ANYONE has info on this, please reply.....thank you

    My husband was diagnosed last fall with this. You are right, hard to find info.He was stge.4 also. Roger had extreme treatment,rad.&chemo. So far ok. I kept a whole accnt. of the exper. PLEASE feel free to reply w/questions.Or mail direct to rbjbfi@yahoo.com
  • RJMiller
    RJMiller Member Posts: 4
    rogerbfi said:

    My husband was diagnosed last fall with this. You are right, hard to find info.He was stge.4 also. Roger had extreme treatment,rad.&chemo. So far ok. I kept a whole accnt. of the exper. PLEASE feel free to reply w/questions.Or mail direct to rbjbfi@yahoo.com

    My husband was diagnosed in October of this year. It was discovered after he developed double vision. He is currently undergoing radiation (IMRT)M-F, Chemo every 3 weeks (Cisplatinum), w/5fu to follow in January. He had the 2nd chemo 12/10 and it was much worse than the 1st one. The final chemo is scheduled for 12/31 (great timing). He is stage IV, however no involvement in lymph nodes. I would be extremely interested in your experience with this.
  • lorinjoe
    lorinjoe Member Posts: 1
    RJMiller said:

    My husband was diagnosed in October of this year. It was discovered after he developed double vision. He is currently undergoing radiation (IMRT)M-F, Chemo every 3 weeks (Cisplatinum), w/5fu to follow in January. He had the 2nd chemo 12/10 and it was much worse than the 1st one. The final chemo is scheduled for 12/31 (great timing). He is stage IV, however no involvement in lymph nodes. I would be extremely interested in your experience with this.

    My husband too was diagnosed with this in Dec,2003 He has had 2 doses of Cisplatin and followed both with 5fu, He is having some terrible side effects or reactions to the 5fu, his hands and feet are very red and swollen, burning, and he has ulcers in his mouth and throat to the extent that he can't swallow even water. Any suggestions would be greatly appreciated. He is using magic mouthwash and on Morphine and he is receiving IV fluids at home to prevent dehydration. Thanks and God Bless!
  • robin58
    robin58 Member Posts: 2
    lorinjoe said:

    My husband too was diagnosed with this in Dec,2003 He has had 2 doses of Cisplatin and followed both with 5fu, He is having some terrible side effects or reactions to the 5fu, his hands and feet are very red and swollen, burning, and he has ulcers in his mouth and throat to the extent that he can't swallow even water. Any suggestions would be greatly appreciated. He is using magic mouthwash and on Morphine and he is receiving IV fluids at home to prevent dehydration. Thanks and God Bless!

    my husband has this too
  • victoria68
    victoria68 Member Posts: 5

    HI my name is Jerri and I have been doing battle with this typw of cancer for 22 years now and I am very happy to be able to say I am still in the battle.
    this is a very difficult cancer but the main thing is there are survivors and I am one of them. I have had numerous surgery and reccurrances however I began my journey with this thing at age 22 I am now 55 and I do hope this offers you some encouragement. My email is jerrikehoe@hotmail.com and if I can be of help or answer any questions please feel free to contact me.

    Hello,
    I diagnosed with NCP

    Hello,
    I diagnosed with NCP TYPE 3/4 on April 20 and received my 1st cycle of chemo on 5/13. I just returned from the Radiation Oncologist who explained the daily radiation for 7 weeks and all the side effects. To say I am beyond depressed is an understatement. They mentioned a feeding tube and the need to try and eat some food. Any ideas/suggestions. Thank you. Like you, I have two beautiful girls and the thought of 8-12 weeks of treatment and not be able to see is is the worse feeling in the world.
  • Scambuster
    Scambuster Member Posts: 973

    Hello,
    I diagnosed with NCP

    Hello,
    I diagnosed with NCP TYPE 3/4 on April 20 and received my 1st cycle of chemo on 5/13. I just returned from the Radiation Oncologist who explained the daily radiation for 7 weeks and all the side effects. To say I am beyond depressed is an understatement. They mentioned a feeding tube and the need to try and eat some food. Any ideas/suggestions. Thank you. Like you, I have two beautiful girls and the thought of 8-12 weeks of treatment and not be able to see is is the worse feeling in the world.

    New post please
    HI VICTORIA,

    Can I suggest you post a new thread as this is stuck down in the midst of a very old one. PM If you need help.

    There are many folks here who have been through the same thing you are about to go through. The feeding tube (PEG) is generally a very good idea as you will most likely have severe pain and other issues that prevent you from eating. It is a rough road and you will most likely need some support. Some people go through and continue to work while some of us (me) end up admitted to hospital for some period of the treatment.

    Can post a new thread as above and mention more about your situation, where you are, nearest treatment centre etc. You will get some good support here.

    Regds
    Scambuster.
  • victoria68
    victoria68 Member Posts: 5

    New post please
    HI VICTORIA,

    Can I suggest you post a new thread as this is stuck down in the midst of a very old one. PM If you need help.

    There are many folks here who have been through the same thing you are about to go through. The feeding tube (PEG) is generally a very good idea as you will most likely have severe pain and other issues that prevent you from eating. It is a rough road and you will most likely need some support. Some people go through and continue to work while some of us (me) end up admitted to hospital for some period of the treatment.

    Can post a new thread as above and mention more about your situation, where you are, nearest treatment centre etc. You will get some good support here.

    Regds
    Scambuster.

    thanks, my radiologist at
    thanks, my radiologist at Memorial Sloan Kettering ( MKS) did suggest a feeding tub and I'm slowly grasping the reality. I'm trying to research how to feed myself through this PEG tube so that I don't become malnurished. I'm currently scheduled to received daily radiation for 7 weeks w/concurrent chemo (cisplatin) every 3 weeks for a total of 3 cycles. All my wishes, Victoria
  • Scambuster
    Scambuster Member Posts: 973

    thanks, my radiologist at
    thanks, my radiologist at Memorial Sloan Kettering ( MKS) did suggest a feeding tub and I'm slowly grasping the reality. I'm trying to research how to feed myself through this PEG tube so that I don't become malnurished. I'm currently scheduled to received daily radiation for 7 weeks w/concurrent chemo (cisplatin) every 3 weeks for a total of 3 cycles. All my wishes, Victoria

    PEG FEEDING
    Hi Victoria,
    The PEG is not such a big deal and temporary thing. I just had a gravity cup one so you will have 6-8" of small tube coming out from just above your navel. It has a simple valve/clip (like the valve on a beach ball) and a crimp between the valve and your tummy. You simply put your food mix inoto the cup, hang it up higher than the tube, plug it into the tube and release the crimp and then let gravity do its thing which is usually 5-10 minutes. I got one of those suction hooks that sticks to glass and I hung my feed cup the hook which I stuck on a window next to my desk - and read the news on my computer while the feed went in.

    As for what you use for feeding, the hospital will have stuff for you. I couldn't tolerate it and I found a product called Vitashake made by Sunrider, and I mixed each satchel with 200ml or Rice milk. This a good alterntaive to Ensure, as it is all plant based nutrition and the rice milk also. you get about 400 calories per serve (200 fm vitashake +200 from Rice milk). You should try to get 2000 calories a day to maintain your weight.

    You can PM if you need further tips.

    Scam
  • Kmaui
    Kmaui Member Posts: 1
    _xia_ said:

    I wrote an error: Originally I was to have been given 33 treatments of radiation, but in the end it was 41 total - including a boost in the Nasopharynx and the neck.

    I have several side effects and would be happy to discuss them with others - patients or family members.

    @--}}--}}--------

    side effects
    Hi, I'm brand new to cancer and to discussion boards.......I have Nasopharynx in the nasal cavity type 111. I start radiation June 1, 2010 for 7 weeks and 2 treatments of Chemo (Cisplatin) 3 weeks apart, with 5FU pills twice a day on radiation days.
    How did you cope with the mouth sores and sore throat? Do I need to email you directly? It seems the comments are all asking for advice but not much is given.....forgive me, I'm not sure of how this works.
    Thank you for any suggestions for handling what is coming
    Kmaui