NPC with bone mets

LYLHA
LYLHA Member Posts: 25
in Head and Neck Cancer #1
my mom is 62 and was diagnosed with NPC with bone mets. i am seeking for survivors to share their views on this. the doctor explained that they will start chemo first, then radiation. i would deeply appreciate any information you can share. and also i have heard that papaya supplements and tea is a good anti-oxidant, have you tried using these products? thank you.
«1

Comments

  • Hal61
    Hal61 Member Posts: 655
    #2
    Sharing views
    Hi Lylha, welcome to you and your mom to the board. There are many members here who have had and been treated for NPC with mets. My fight was with BaseOfTongue with mets to lymph nodes on the left side. Like your mom will be, I was treated with chemo and radiation, concurrent.

    The experiences and symptoms of treatment for radiation and chemo are common to most survivors. Chemo, depending on type and regimen will result in some weakness, nausea, and other symptoms. Radiation to the head and neck will often involve excessive mucous, loss of taste and salivary function, problems swallowing, and sores or tenderness on the inside and outside of the mouth. I've created a link for you that will lead to the Superthread which can be an invaluable resource of past threads and links to answer many of your questions.

    Anti-oxidants can be a good thing for general health, but even things such as papaya supplements should be checked with your medical oncologist before introducing into your mom's diet. She will have a struggle on her hands for the next few months, but it's something that many on this board have done to become survivors, and your mom can do it It's great that your mom has your help at this time. Check the Superthread, and come here often for help and support.

    best, Hal


    SuperThread
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
    Hi Lylha
    I had Stage 4 SCC unknown primary, modified neck dissection, and 30 radiation treatments. No chemo

    Before starting any supplements, vitamins, or herbs, you must check with your physician. Even antioxidants, are normally not allowed during radiation, because it can be harmful. Eating a good diet rich in fruit, veg and whole grains is fine, but taking extra antioxidants is not recommended.
  • LYLHA
    LYLHA Member Posts: 25
    #4
    Hal61 said:

    Sharing views
    Hi Lylha, welcome to you and your mom to the board. There are many members here who have had and been treated for NPC with mets. My fight was with BaseOfTongue with mets to lymph nodes on the left side. Like your mom will be, I was treated with chemo and radiation, concurrent.

    The experiences and symptoms of treatment for radiation and chemo are common to most survivors. Chemo, depending on type and regimen will result in some weakness, nausea, and other symptoms. Radiation to the head and neck will often involve excessive mucous, loss of taste and salivary function, problems swallowing, and sores or tenderness on the inside and outside of the mouth. I've created a link for you that will lead to the Superthread which can be an invaluable resource of past threads and links to answer many of your questions.

    Anti-oxidants can be a good thing for general health, but even things such as papaya supplements should be checked with your medical oncologist before introducing into your mom's diet. She will have a struggle on her hands for the next few months, but it's something that many on this board have done to become survivors, and your mom can do it It's great that your mom has your help at this time. Check the Superthread, and come here often for help and support.

    best, Hal


    SuperThread

    thank you so much for the
    thank you so much for the quick response. and i will surely check on the super thread. i feel so uplifted reading the success stories of survivors and how you help other people to pass this difficult moment. may you continue to lend your helping hand to others. God bless!
  • robinleigh
    robinleigh Member Posts: 297
    #5
    sweetblood22 said:

    Hi Lylha
    I had Stage 4 SCC unknown primary, modified neck dissection, and 30 radiation treatments. No chemo

    Before starting any supplements, vitamins, or herbs, you must check with your physician. Even antioxidants, are normally not allowed during radiation, because it can be harmful. Eating a good diet rich in fruit, veg and whole grains is fine, but taking extra antioxidants is not recommended.

    Hi lylha
    My husband had stage 4 scc and then developed bone mets to his pelvic region and his liver. If you have any questions, feel free to pm me.
    Best wishes,
    Robin
  • LYLHA
    LYLHA Member Posts: 25
    #6
    sweetblood22 said:

    Hi Lylha
    I had Stage 4 SCC unknown primary, modified neck dissection, and 30 radiation treatments. No chemo

    Before starting any supplements, vitamins, or herbs, you must check with your physician. Even antioxidants, are normally not allowed during radiation, because it can be harmful. Eating a good diet rich in fruit, veg and whole grains is fine, but taking extra antioxidants is not recommended.

    Hi sweetblood22
    Yes you are right, good diet is really important. And I will ask the doctor about the supplements too. Thank you.
  • sumarah8
    sumarah8 Member Posts: 32
    #7
    npc here too
    I'm npc stage 2, my treatment is so aggressive too, radiation and then adjuvant chemo, I'm still on treatment, and I'm done with it, I cant wait...just to let you know its pretty tough doing the treatments but its worth it. God bless..
  • adventurebob
    adventurebob Member Posts: 691
    #8
    Hi Lylha
    I have had NPC with bone mets. Just got a clean PET last month after a year and a half of treatment. I did do chemo first and then chemo and radiation together. Had a met left over even after all that and radiated it and got rid of it too. I have used many supplements and alternative treatments concurrent with conventional treatment. I researched constantly but relied heavily on my Chinese Medicine Man to prescribe the proper supplements with the proper dosage at the proper time. He still handles my supplements and changes them frequently. He specializes in cancer and his clinic is world famous for providing alternative treatment for cancer. I would be happy to provide you with the contact info. I personally believe that there are many alternative treatments out there that are beneficial if administered by a trained professional concurrent with conventional treatment. For me the chemo and rads handled the cancer and the alternative treatments handled the chemo and rads and now keep me cancer free. Feel free to PM me for more info or with any questions. Sorry to hear about your mother. There are many powerful treatments available to help her in her fight. My best to her, to you and your family.

    AB
  • LYLHA
    LYLHA Member Posts: 25
    #9
    sumarah8 said:

    npc here too
    I'm npc stage 2, my treatment is so aggressive too, radiation and then adjuvant chemo, I'm still on treatment, and I'm done with it, I cant wait...just to let you know its pretty tough doing the treatments but its worth it. God bless..

    You can do it
    My mom is a tough woman too so I am preparing her for the treatment. I am praying that you will finish your treatments soon. I wish you all the best. God bless.
  • LYLHA
    LYLHA Member Posts: 25
    #10
    adventurebob said:

    Hi Lylha
    I have had NPC with bone mets. Just got a clean PET last month after a year and a half of treatment. I did do chemo first and then chemo and radiation together. Had a met left over even after all that and radiated it and got rid of it too. I have used many supplements and alternative treatments concurrent with conventional treatment. I researched constantly but relied heavily on my Chinese Medicine Man to prescribe the proper supplements with the proper dosage at the proper time. He still handles my supplements and changes them frequently. He specializes in cancer and his clinic is world famous for providing alternative treatment for cancer. I would be happy to provide you with the contact info. I personally believe that there are many alternative treatments out there that are beneficial if administered by a trained professional concurrent with conventional treatment. For me the chemo and rads handled the cancer and the alternative treatments handled the chemo and rads and now keep me cancer free. Feel free to PM me for more info or with any questions. Sorry to hear about your mother. There are many powerful treatments available to help her in her fight. My best to her, to you and your family.

    AB

    Miracle
    It is so encouraging to read your story. I am praying that my mom will get through all her treatments just like you. Thank you for sharing, and yes, I would be very interested to know about the alternative treatments too. I have heard that papaya tea was a good cancer fighting herbal and it is proven based on research. Have you used it before? I wish you the best of health! God bless..
  • Kyle Gilmore
    Kyle Gilmore Member Posts: 55
    #11
    LYLHA said:

    Miracle
    It is so encouraging to read your story. I am praying that my mom will get through all her treatments just like you. Thank you for sharing, and yes, I would be very interested to know about the alternative treatments too. I have heard that papaya tea was a good cancer fighting herbal and it is proven based on research. Have you used it before? I wish you the best of health! God bless..

    Its amazing how many NPCs we
    Its amazing how many NPCs we have here.

    I am through with treatment for NPC also,knock on wood....I had 35 rads with concurrant cisplatin which finished 11-11-11 and just got my first ned.

    I would say that the most important proactive thing I could do was to stay well hydrated and get as much nutrition I could. I am grateful I had and still have the G tube to fall back on. My onc orginally thought i didnt need it because i was in good strong shape but i ended up in the hospital after chemo started because i did not eat for 5 days due to the Mucositis and mouth sores and had to have the tube put in on emergency.

    Good luck!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    Hi Lylha

    I believe that there are right at 39 of us here who all had NPC, some of them had moved on with life and don’t post anymore. Still other stay behind to help people just like you know that there is hope. Click on my name Hondo and it will bring you to my profile and you can read my story of fighting this thing many times. I would suggest after you are finish with rad and chemo treatment getting into a good Alternative treatments plan to prevent any possibility of it coming back..

    There is hope and many of us are all survivors of this NPC cancer and your mom will be a survivor too, so don’t fear. I would suggest that you do your treatment at one of the major cancer institutions and not some local city cancer place. There is a major difference as a lot of local cancer doctors don’t know the proper way to treat NPC cancer that was my problem.

    God bless and be with you and your Mom
    Tim Hondo
  • LYLHA
    LYLHA Member Posts: 25
    #13
    Hondo said:

    Hi Lylha

    I believe that there are right at 39 of us here who all had NPC, some of them had moved on with life and don’t post anymore. Still other stay behind to help people just like you know that there is hope. Click on my name Hondo and it will bring you to my profile and you can read my story of fighting this thing many times. I would suggest after you are finish with rad and chemo treatment getting into a good Alternative treatments plan to prevent any possibility of it coming back..

    There is hope and many of us are all survivors of this NPC cancer and your mom will be a survivor too, so don’t fear. I would suggest that you do your treatment at one of the major cancer institutions and not some local city cancer place. There is a major difference as a lot of local cancer doctors don’t know the proper way to treat NPC cancer that was my problem.

    God bless and be with you and your Mom
    Tim Hondo

    Hope
    Thank you for sharing your story. I am so blessed to read your post and it is true that God works in mysterious ways. All we need to do is believe on Him for He is in control at all times. There was a period that I am so down, which is just normal, then just found hope the next day as I woke up and realizing that life is good after all. I am trying to be strong for my mom as much as I could and I always remind my mom that we can get through this battle with God's help.
    May you continue to be a blessing to everyone who seeks help in difficult times. I do admire all of you who shares your experiences and help other Cancer patients to be a Survivor like you.
    God bless!

    Lylha
  • LYLHA
    LYLHA Member Posts: 25
    #14
    LYLHA said:

    Hope
    Thank you for sharing your story. I am so blessed to read your post and it is true that God works in mysterious ways. All we need to do is believe on Him for He is in control at all times. There was a period that I am so down, which is just normal, then just found hope the next day as I woke up and realizing that life is good after all. I am trying to be strong for my mom as much as I could and I always remind my mom that we can get through this battle with God's help.
    May you continue to be a blessing to everyone who seeks help in difficult times. I do admire all of you who shares your experiences and help other Cancer patients to be a Survivor like you.
    God bless!

    Lylha

    Waiting
    We are waiting for my mom's schedule for her first day of chemo. Will do 2 cycles of chemo then will do another scan. Just praying while waiting...
  • kwana3
    kwana3 Member Posts: 10
    #15
    LYLHA said:

    Waiting
    We are waiting for my mom's schedule for her first day of chemo. Will do 2 cycles of chemo then will do another scan. Just praying while waiting...

    NPC with Bone Met
    I just found out that I have NPC with bone met too!! how is your mom doing?
  • kwana3
    kwana3 Member Posts: 10
    #16
    adventurebob said:

    Hi Lylha
    I have had NPC with bone mets. Just got a clean PET last month after a year and a half of treatment. I did do chemo first and then chemo and radiation together. Had a met left over even after all that and radiated it and got rid of it too. I have used many supplements and alternative treatments concurrent with conventional treatment. I researched constantly but relied heavily on my Chinese Medicine Man to prescribe the proper supplements with the proper dosage at the proper time. He still handles my supplements and changes them frequently. He specializes in cancer and his clinic is world famous for providing alternative treatment for cancer. I would be happy to provide you with the contact info. I personally believe that there are many alternative treatments out there that are beneficial if administered by a trained professional concurrent with conventional treatment. For me the chemo and rads handled the cancer and the alternative treatments handled the chemo and rads and now keep me cancer free. Feel free to PM me for more info or with any questions. Sorry to hear about your mother. There are many powerful treatments available to help her in her fight. My best to her, to you and your family.

    AB

    Bone met
    I just found out I got NPC with bone met.
    What part of your bone did the cell met to?
    What is the largest tumor on the bone?
    Did it hurt?

    Thx
  • LYLHA
    LYLHA Member Posts: 25
    #17
    kwana3 said:

    NPC with Bone Met
    I just found out that I have NPC with bone met too!! how is your mom doing?

    doing great!
    hi Kwana. my mom is doing great aside from the fact that she wants her hair back so bad. the plan was to have chemo for 4 cycles. she had a repeat PET scan after 2 rounds of chemo and it was just amazing to see that it responded well with the tx. then the doctor decided to add 2 more tx then repeat PET scan will be done. prayers and support from family and friends was a big help for my mom. and always stay positive as this will help you to stay on and win this battle. my prayers are with you...
  • aprilshower55
    aprilshower55 Member Posts: 31
    #18
    you are not alone
    you are in the right place here. i finished my last chemo 11-19-11. my scans last month was clean. my doc said no herbs or any supplements during treatments. be strong and as you read on this board you have useful information to pass on to your mom. be prepare for the side effects during and after treatments. good luck with your mom's treatments and god is your strength. god bless.
  • NeoTheron91
    NeoTheron91 Member Posts: 75
    #19
    Right place
    Hi

    You're in the right place. I am a NPC stage IV and finished treatment at last December. Recent PET scan result showed NED. So hang in there and be prepare for the treatment that all of us suggested.
    I am sure you will see the light at the end of the tunnel.

    cheers,
    Neo
  • LYLHA
    LYLHA Member Posts: 25
    #20
    NeoTheron91 said:

    Right place
    Hi

    You're in the right place. I am a NPC stage IV and finished treatment at last December. Recent PET scan result showed NED. So hang in there and be prepare for the treatment that all of us suggested.
    I am sure you will see the light at the end of the tunnel.

    cheers,
    Neo

    Mom's last scan was NED!

    Mom's scan was NED, actually twice now, Oct 2013 and January 2014. Thanks everyone for all your encouragement and support and prayers! May God bless you more.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #21
    LYLHA said:

    Mom's last scan was NED!

    Mom's scan was NED, actually twice now, Oct 2013 and January 2014. Thanks everyone for all your encouragement and support and prayers! May God bless you more.

    lylha, that is fantastic

    lylha, that is fantastic news!!  please copy and paste this into a new topic so others can celebrate with you.  i'm afraid they won't see this since its so old.

    dj

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