Nasopharengeal cancer information please help

babi
babi Member Posts: 7
edited March 2014 in Head and Neck Cancer #1
My brother at 41 has nasopharengeal cancer at state 4. Can anyone tell me what his prognosis is and if anyone out there has gone through this and/or knows someone who has. Are there survivors out there?

Comments

  • jerrikehoe
    jerrikehoe Member Posts: 27
    Hi babi I mailed you that I could give you information but did not hear back. I was diagnoied with this type of cancer at 33 after been sympomatic for 4 years I have had several surgeries on and off I am now 55 and a retired realtor and a full time student..How can I help??
  • babi
    babi Member Posts: 7

    Hi babi I mailed you that I could give you information but did not hear back. I was diagnoied with this type of cancer at 33 after been sympomatic for 4 years I have had several surgeries on and off I am now 55 and a retired realtor and a full time student..How can I help??

    Hi Jerrikehoe, I would like some information on what you went through and how long it took you to get better. What stage were you diagnosed in originally? My brother is in stage 4 and they can't operate because it is a delicate area. It spread to the back of the head ( leaning onto the brain) and lymph node in the neck. He is in his first week of radiation and his 1st chemo treatment and he is already feeling nauseas with 7 weeks to go. What kind of cure rate did the doctor give you? Did you have radiation and chemo? Did you get sick? I am concerned about my brother and I hope you can give me some insight into this type of cancer. Please try to e-mail me again. I will let you know if I receive it. Hope to hear from you soon. Thanks.

    Babi.
  • _xia_
    _xia_ Member Posts: 13
    Dear Babi,

    I am 34 and recently was diagnosed with Nasopharyngeal cancer (stage IV).

    I haven't started my treatment (radiation, chemotherapy) yet. It should be in about a couple of weeks.

    I am still looking into finding more information about this type of cancer.

    Also, I would love to get in contact with others who have experienced it or knows of anyone who has.

    Please feel free to contact me.

    Best regards,
    Mia.
  • _xia_
    _xia_ Member Posts: 13
    Dear Babi,

    I am 34 and recently was diagnosed with Nasopharyngeal cancer (stage IV).

    I haven't started my treatment (radiation, chemotherapy) yet. It should be in about a couple of weeks.

    I am still looking into finding more information about this type of cancer.

    Also, I would love to get in contact with others who have experienced it or knows of anyone who has.

    Please feel free to contact me.

    Best regards,
    Mia.
  • _xia_
    _xia_ Member Posts: 13
    babi said:

    Hi Jerrikehoe, I would like some information on what you went through and how long it took you to get better. What stage were you diagnosed in originally? My brother is in stage 4 and they can't operate because it is a delicate area. It spread to the back of the head ( leaning onto the brain) and lymph node in the neck. He is in his first week of radiation and his 1st chemo treatment and he is already feeling nauseas with 7 weeks to go. What kind of cure rate did the doctor give you? Did you have radiation and chemo? Did you get sick? I am concerned about my brother and I hope you can give me some insight into this type of cancer. Please try to e-mail me again. I will let you know if I receive it. Hope to hear from you soon. Thanks.

    Babi.

    Hi again,

    I was told they can
  • babi
    babi Member Posts: 7
    _xia_ said:

    Dear Babi,

    I am 34 and recently was diagnosed with Nasopharyngeal cancer (stage IV).

    I haven't started my treatment (radiation, chemotherapy) yet. It should be in about a couple of weeks.

    I am still looking into finding more information about this type of cancer.

    Also, I would love to get in contact with others who have experienced it or knows of anyone who has.

    Please feel free to contact me.

    Best regards,
    Mia.

    Dear Mia:
  • acstrotruyen
    acstrotruyen Member Posts: 5
    _xia_ said:

    Dear Babi,

    I am 34 and recently was diagnosed with Nasopharyngeal cancer (stage IV).

    I haven't started my treatment (radiation, chemotherapy) yet. It should be in about a couple of weeks.

    I am still looking into finding more information about this type of cancer.

    Also, I would love to get in contact with others who have experienced it or knows of anyone who has.

    Please feel free to contact me.

    Best regards,
    Mia.

    Hi Mia,
    This is the first time I get on this discussion group. I'm still trying to see how this work.
    I am 31 and was diagnosed with Nasopharyngeal Nonkertinizing Carcinoma Cancer in April 18, 2002, but mine is in stage 2 & 3.
    I had been started the combination of rads & chemo since May 2nd for 8 weeks. I had been injected Cisplatin twice and Taxol every week. Now I need only 9 more radiations and 1 Chemo which will be end on July 1.
    My Oncologists said my survival rate is 80%. How about yours?
    Currently, I'm experiencing sore throat with thick muscus; it's really hard to spit out.
    I would like to exchange experience with you and with others.
    Good Luck to you,
    Connie
  • babi
    babi Member Posts: 7
    _xia_ said:

    Dear Babi,

    I am 34 and recently was diagnosed with Nasopharyngeal cancer (stage IV).

    I haven't started my treatment (radiation, chemotherapy) yet. It should be in about a couple of weeks.

    I am still looking into finding more information about this type of cancer.

    Also, I would love to get in contact with others who have experienced it or knows of anyone who has.

    Please feel free to contact me.

    Best regards,
    Mia.

    Dear Mia:

    My brother has just completed 40 radiation treatments. He has three chemo treatments left to go (5 total). He is doing ok. He hasn't lost much hair, but he has lost 40 pounds as it is hard for him to eat. He has the feeding tube and feeds himself cans of osmilite each day. He is hanging in there and feels good. He does not have any headaches any more and the lump on his neck has almost completely disappeared. These are good signs. He won't know if the cancer is all gone until late august. We are hoping for the best and keep praying for him.

    How are you doing? My brother wanted me to ask you what hospital are you going to? Let me know if you want to get in touch with him and I will give you his e-mail address.

    Babi
  • babi
    babi Member Posts: 7

    Hi Mia,
    This is the first time I get on this discussion group. I'm still trying to see how this work.
    I am 31 and was diagnosed with Nasopharyngeal Nonkertinizing Carcinoma Cancer in April 18, 2002, but mine is in stage 2 & 3.
    I had been started the combination of rads & chemo since May 2nd for 8 weeks. I had been injected Cisplatin twice and Taxol every week. Now I need only 9 more radiations and 1 Chemo which will be end on July 1.
    My Oncologists said my survival rate is 80%. How about yours?
    Currently, I'm experiencing sore throat with thick muscus; it's really hard to spit out.
    I would like to exchange experience with you and with others.
    Good Luck to you,
    Connie

    Dear Connie:

    My brother at 41 has the same type of cancer in stage four. He has it in back of his nose, neck and back of his brain. He had 8 weeks of radiation and now has two more chemo treatmens left. He is doing well. He has lost 40 pounds as he was unable to swallow after the radiation treatments for a few weeks and really has no appetite still.

    Where is your cancer? What hospital are you going to? They said my brother has a good chance of survival. He has the feeding tube so that he can feed himself. Do you have a feeding tube in your stomach?

    How did you find out you had this cancer?

    I look forward to hearing from you and wish you all the best of luck with your treatment.

    Babi
  • coke
    coke Member Posts: 3
    Coke,
    My dad had nasophyarngeal cancer. How is your brother doing?
    coke
  • acstrotruyen
    acstrotruyen Member Posts: 5
    babi said:

    Dear Connie:

    My brother at 41 has the same type of cancer in stage four. He has it in back of his nose, neck and back of his brain. He had 8 weeks of radiation and now has two more chemo treatmens left. He is doing well. He has lost 40 pounds as he was unable to swallow after the radiation treatments for a few weeks and really has no appetite still.

    Where is your cancer? What hospital are you going to? They said my brother has a good chance of survival. He has the feeding tube so that he can feed himself. Do you have a feeding tube in your stomach?

    How did you find out you had this cancer?

    I look forward to hearing from you and wish you all the best of luck with your treatment.

    Babi

    Dear Babi
    I had the same number of weeks of rads & Chemo as your brother had. I completed my treatments 4 weeks ago, but my mouth is still so sore. I can drink but not eat. I'd been using oncology mouth wash and the compound of lidocan & nystatan to control the soreness.
    Yes, I do have a PEG tube in stomach which I still have. It cause a lot of pain to me; I really want to remove it but am unable to swallow solid foods yet. I feed myself with NEPRO; it has 475 CAL in a 8 oz can. That's why I can keep my weight as normal.
  • acstrotruyen
    acstrotruyen Member Posts: 5
    babi said:

    Dear Connie:

    My brother at 41 has the same type of cancer in stage four. He has it in back of his nose, neck and back of his brain. He had 8 weeks of radiation and now has two more chemo treatmens left. He is doing well. He has lost 40 pounds as he was unable to swallow after the radiation treatments for a few weeks and really has no appetite still.

    Where is your cancer? What hospital are you going to? They said my brother has a good chance of survival. He has the feeding tube so that he can feed himself. Do you have a feeding tube in your stomach?

    How did you find out you had this cancer?

    I look forward to hearing from you and wish you all the best of luck with your treatment.

    Babi

    Dear Babi
    I had the same number of weeks of rads & Chemo as your brother had. I completed my treatments 4 weeks ago, but my mouth is still so sore. I can drink but not eat. I'd been using oncology mouth wash and the compound of lidocan & nystatan to control the soreness.
    Yes, I do have a PEG tube in stomach which I still have. It cause a lot of pain to me; I really want to remove it but am unable to swallow solid foods yet. I feed myself with NEPRO; it has 475 CAL in a 8 oz can. That's why I can keep my weight as normal.
  • acstrotruyen
    acstrotruyen Member Posts: 5
    babi said:

    Dear Connie:

    My brother at 41 has the same type of cancer in stage four. He has it in back of his nose, neck and back of his brain. He had 8 weeks of radiation and now has two more chemo treatmens left. He is doing well. He has lost 40 pounds as he was unable to swallow after the radiation treatments for a few weeks and really has no appetite still.

    Where is your cancer? What hospital are you going to? They said my brother has a good chance of survival. He has the feeding tube so that he can feed himself. Do you have a feeding tube in your stomach?

    How did you find out you had this cancer?

    I look forward to hearing from you and wish you all the best of luck with your treatment.

    Babi

    Hi Babi,
    Sorry, I haven't complete my previous writing, but I accidentally hitted the return key twice. So here is the continue.
    My cancer is in the same position as you described your brother's cancer. My doctor said, I have 80% survival rate for doing the combination of rads & chemo treatments.
    I will start my second Chemo treatment next week for three months. This is the protocol as my doctor said. I'll start with Cysplatin and 5flu for this second chemo.
    I have my treatments at Cornerstone Cancer Center in Palm harbor, FLorida, not in the hospital.
    I found out the cancer from the buzzing in my right ear, no pain, nothing.
    So how is your brother handle the PEG tube?
    It's tough but tell him hang in there, don't give up. This type of cancer has a high chance of survival.
    Best wish to your brother.
    Connie
  • babi
    babi Member Posts: 7
    coke said:

    Coke,
    My dad had nasophyarngeal cancer. How is your brother doing?
    coke

    Dear Coke: sorry to hear about your dad. What an awful thing to happen to him. I hope your doing ok. My brother is doing well. Thank God. He has 1 more chemo to go and he'll be done(40 radiation & 5 chemo) The doctors think things are going well and they won't know for sure until an MRI in October, but they are feeling positive. My brother looks ok for all he has been through and he is trying to gain some weight and he is working a few hours each day. We are hoping and praying for the best.

    What happened to your dad? Was he going to a hospital in the east coast? How do you think people get this type of cancer? How did he first know he had it?

    I would love to hear from you Coke.

    Take care.

    Best Regards, Babi
  • Virginia67
    Virginia67 Member Posts: 2
    edited June 2019 #16
    Hi Babi,

    Hi Babi,

    My husband has been diagnosed with stage 3 nasopharengeal  cancer April 22 .The problem on him is ;he has Multiple sclerosis .He will have 3 cycles of chemo only  1st  and then chemo and radiation for 7 weeks .He is on his 2nd cycle of chemo but its tough because the chemo is 96 hours .He went home with a pump ..On his 1st cycle ;he got admitted in the hospital for 4 days because he a got a fever of 103.8 and WBC of only 1 .He got severe oral thrush ;cant eat or swallow .He is on his 2nd cycle now and the doctor will give Neulasta to increase his WBC.Is there anybody experiencing these .He lost a lot of weight .Still looking for more information .The doctor  is ordering scan on him after 2nd cycle and will decide for 3rd cycle or not .Im hoping my husband will finish these cycles .