eppstein barr virus

survivor31
survivor31 Member Posts: 72
edited March 2014 in Head and Neck Cancer #1
hi everyone today is one of thoose days that I cant shake the cancer thoughts you know what scares me the most is that my ent said my npc started with eppstein barr virus has anyone had there's start from that and I was told that its something that I will always have it goes dormant and can flare up again my fear is when and if it flares up will the cancer return since it is the cause as they said im so tired of this im tired of thinking of this sometimes I get tierd of fighting this this mentall battle is no joke the recovery process is sooooooooo long I dont mean to complain trust me im happy to God im alive but im not happy about whats going on with me not at all this thing struck like a theif in the night and now im left with this when i was going through treatment i thought i was not gonna make it ,it was a few times I told my cancer team i give up i cant do this anymore but when i made it the mental part is hard i had no clue I was gonna be haunted with theese thoughts and feelings and scared for my life im on antideppresants but it cant change the fact that i had cancer and im scared im tierd of thinking my family says at times I act like an old woman instead of a 31 year old they have no clue what I have just been through yeah they were by my side but were not in my body im tierd of hearing move on God already has taken it away and by you not moving on he will think you are ungratefull and bring it back WHAT!!!!!!!!!!!!! they just dont friggin get it ,it is hard to just say ok I had cancer lets pick up were I left off there is no way espeacially when im living with the damage it has left behind like the feeding tube, lack of taste, lack of smell , pain at times in my fingers and legs to the point where I walk sometimes bent over im just getting tired

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Survivor

    Don’t live in fear, if anyone knows believe me I do as I had this NPC three times now and guess what I am still alive and doing great. What your ENT did not tell you is that about 80% of us all have the Eppstein barr virus but that is not the problem, the problem starts when our immune system gets weak and allows the virus to get us sick. Like I said I had it three times, the first two times I did radiation and chemo, but it kept coming back so on the third time all my doc could do was to offer more chemo. I told them if you could not kill it before what hope is there that you can kill the cancer this time. That is when I started doing things to help my body help its self and let my immune system fight the cancer, that has been five years ago.

    If you are worried about this stuff coming back start helping your immune system to keep your body clear of any virus that can cause any cancer.

    Take care survivor and don’t live in fear as fear tends to weaken the immune system find things that make you happy, smile, laugh, and be joyful these are some of the things that keep your immune system strong.

    Take care and be strong
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #3
    survivor, i'm so sorry you
    survivor, i'm so sorry you are so scared. I lived that way for months. Believe it or not, you will wake up one day and it will not be the only thing on your mind. Hondo is right, try to force yourself to think of things other than the cancer. It will make you feel better.
    I know that as others love us, they DON'T UNDERSTAND what we are going thru. The understand even less that just b/c the trmnts are done, the recovery IS NOT. That definitely takes longer than the trmnts. And the fear even longer than that.
    And, God, would not give you cancer, HE understands our fears. He is the one who altimately healed us, so why would He make us sick, He wouldn't.
    Maybe getting interested in a hobby would help you. Do you like crafts or painting by number or something like that? Think of something you'd enjoy and try that for a while to see if it helps keep your mind off the fear.
    I pray you find something to help you get back to a somewhat normal life. I understand it is hard but if you spend the rest of your life being petrified to the point you can't enjoy it, what difference will it make....
    I wish you the very best and may God bles you and get you thru this fear and all other things related to the cancer.
    hang in there,

    debbie
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    debbiejeanne said:

    survivor, i'm so sorry you
    survivor, i'm so sorry you are so scared. I lived that way for months. Believe it or not, you will wake up one day and it will not be the only thing on your mind. Hondo is right, try to force yourself to think of things other than the cancer. It will make you feel better.
    I know that as others love us, they DON'T UNDERSTAND what we are going thru. The understand even less that just b/c the trmnts are done, the recovery IS NOT. That definitely takes longer than the trmnts. And the fear even longer than that.
    And, God, would not give you cancer, HE understands our fears. He is the one who altimately healed us, so why would He make us sick, He wouldn't.
    Maybe getting interested in a hobby would help you. Do you like crafts or painting by number or something like that? Think of something you'd enjoy and try that for a while to see if it helps keep your mind off the fear.
    I pray you find something to help you get back to a somewhat normal life. I understand it is hard but if you spend the rest of your life being petrified to the point you can't enjoy it, what difference will it make....
    I wish you the very best and may God bles you and get you thru this fear and all other things related to the cancer.
    hang in there,

    debbie

    Are you sure ?
    I've never heard of Epstein Barr causing HNC. It's common for HPV virus to cause it. Are you sure The ENT said Epstein Barr and not HPV? This would be a very interesting twist to things. You might want to clarify that. If he verifies that it was Epstein Barr could you please ask him for source information as I would really be interested in reading and following up on that. Also have you been tested for either virus?
  • survivor31
    survivor31 Member Posts: 72
    #5
    ratface said:

    Are you sure ?
    I've never heard of Epstein Barr causing HNC. It's common for HPV virus to cause it. Are you sure The ENT said Epstein Barr and not HPV? This would be a very interesting twist to things. You might want to clarify that. If he verifies that it was Epstein Barr could you please ask him for source information as I would really be interested in reading and following up on that. Also have you been tested for either virus?

    hi guys thank so much I
    hi guys thank so much I think I will do a little shopping I USED to enjoy shopping and Yes ratface I have been tested for eppstein barr virus and HPV was positve for Eppstein barr he said it started as mono the mono went untreated he said most peoples immune system like hondo said are strong and can fight it off mine could not so I have that virus without a doubt thanks you guys I think i will get out the house today bless you all
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #6
    survivor31 said:

    hi guys thank so much I
    hi guys thank so much I think I will do a little shopping I USED to enjoy shopping and Yes ratface I have been tested for eppstein barr virus and HPV was positve for Eppstein barr he said it started as mono the mono went untreated he said most peoples immune system like hondo said are strong and can fight it off mine could not so I have that virus without a doubt thanks you guys I think i will get out the house today bless you all

    survivor, GREAT! I think
    survivor, GREAT! I think getting out of the house will help a lot. I rarely go out but when I do, it greatly improves my attitude. So, cudos to you!
    Enjoy,
    Debbie
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #7
    ratface said:

    Are you sure ?
    I've never heard of Epstein Barr causing HNC. It's common for HPV virus to cause it. Are you sure The ENT said Epstein Barr and not HPV? This would be a very interesting twist to things. You might want to clarify that. If he verifies that it was Epstein Barr could you please ask him for source information as I would really be interested in reading and following up on that. Also have you been tested for either virus?

    Epstein Barr
    And yes, Rick, as to a common cause. Might be specific to Nasopharyngeal, but it does show-up as the most "common among adults" for "Nasopharyngeal"- Wikepedia is the source for this info. Back in 12/08 and 1/09, when my biopsy came back positive for NPC, I did a lot of research, and EBV was mentioned several places. And, yes, EBV is Mono.

    kcass
  • ratface
    ratface Member Posts: 1,337 Member
    #8
    Kent Cass said:

    Epstein Barr
    And yes, Rick, as to a common cause. Might be specific to Nasopharyngeal, but it does show-up as the most "common among adults" for "Nasopharyngeal"- Wikepedia is the source for this info. Back in 12/08 and 1/09, when my biopsy came back positive for NPC, I did a lot of research, and EBV was mentioned several places. And, yes, EBV is Mono.

    kcass

    I had Mono
    Thats why nI ask. It may then be another factor to consider for Base of the tongue also.
  • adventurebob
    adventurebob Member Posts: 691
    #9
    Hondo said:

    Hi Survivor

    Don’t live in fear, if anyone knows believe me I do as I had this NPC three times now and guess what I am still alive and doing great. What your ENT did not tell you is that about 80% of us all have the Eppstein barr virus but that is not the problem, the problem starts when our immune system gets weak and allows the virus to get us sick. Like I said I had it three times, the first two times I did radiation and chemo, but it kept coming back so on the third time all my doc could do was to offer more chemo. I told them if you could not kill it before what hope is there that you can kill the cancer this time. That is when I started doing things to help my body help its self and let my immune system fight the cancer, that has been five years ago.

    If you are worried about this stuff coming back start helping your immune system to keep your body clear of any virus that can cause any cancer.

    Take care survivor and don’t live in fear as fear tends to weaken the immune system find things that make you happy, smile, laugh, and be joyful these are some of the things that keep your immune system strong.

    Take care and be strong

    NPC
    Your words fill me with hope. Thank you. I have just been diagnosed with NPC and I'm starting the process with my Dr's to determine what treatment is appropriate while a few more tests/scans/biopsys are completed to determine where it all is. I'm a bit horrified at the idea of a feeding tube as well as the radiation and chemotherapy. I'm 38 and super active and healthy except for this but starting to have some problems with energy and pain. I did test positive for EBV and understand there is a link. I look forward to talking with you and everyone else here more as this moves forward. It's nice to have another support system.

    Bob
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
    adventurebob said:

    NPC
    Your words fill me with hope. Thank you. I have just been diagnosed with NPC and I'm starting the process with my Dr's to determine what treatment is appropriate while a few more tests/scans/biopsys are completed to determine where it all is. I'm a bit horrified at the idea of a feeding tube as well as the radiation and chemotherapy. I'm 38 and super active and healthy except for this but starting to have some problems with energy and pain. I did test positive for EBV and understand there is a link. I look forward to talking with you and everyone else here more as this moves forward. It's nice to have another support system.

    Bob

    Bob, I'm sorry that you are
    Bob, I'm sorry that you are going thru this but want to welcome you here. You will find a lot of answers and support here. The best part is you will find people here who have gone thru or is going thru the same thing so you will be able to talk to people who know first hand what you are going thru and the fear you may have. We will all put you in our prayers. Please keep us posted.
    God Bless and wishing you well
    debbie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    adventurebob said:

    NPC
    Your words fill me with hope. Thank you. I have just been diagnosed with NPC and I'm starting the process with my Dr's to determine what treatment is appropriate while a few more tests/scans/biopsys are completed to determine where it all is. I'm a bit horrified at the idea of a feeding tube as well as the radiation and chemotherapy. I'm 38 and super active and healthy except for this but starting to have some problems with energy and pain. I did test positive for EBV and understand there is a link. I look forward to talking with you and everyone else here more as this moves forward. It's nice to have another support system.

    Bob

    Hi Bob
    First welcome to CSN, you are here with a lot of others who also had NPC. I am about 5 years passed my last treatment Kent is almost 2 years now and quite a few other are just now finishing there treatment. The treatment is hard Bob but it is curable and life after cancer is just as good as before it is just a new normal.

    Take care and keep posting most of us stay here to help others along the way and let them know that there is hope
  • stevenl
    stevenl Member Posts: 587
    #12
    Hondo said:

    Hi Bob
    First welcome to CSN, you are here with a lot of others who also had NPC. I am about 5 years passed my last treatment Kent is almost 2 years now and quite a few other are just now finishing there treatment. The treatment is hard Bob but it is curable and life after cancer is just as good as before it is just a new normal.

    Take care and keep posting most of us stay here to help others along the way and let them know that there is hope

    Welcome
    Hi Bob,

    I am 2 mths. past treatment and doing good. You can beat this. Remember we are here to help when you need it.

    Best,
    Steve
  • adventurebob
    adventurebob Member Posts: 691
    #13
    debbiejeanne said:

    Bob, I'm sorry that you are
    Bob, I'm sorry that you are going thru this but want to welcome you here. You will find a lot of answers and support here. The best part is you will find people here who have gone thru or is going thru the same thing so you will be able to talk to people who know first hand what you are going thru and the fear you may have. We will all put you in our prayers. Please keep us posted.
    God Bless and wishing you well
    debbie

    Thanks Debbiejeanne. I have
    Thanks Debbiejeanne. I have a spinal biopsy tomorrow as the PET scan lit up something there. If it's nothing they're recommending radiation and chemo. If it's something they're saying chemo first. I appreciate the prayers. I can feel them.

    Bob
  • Scambuster
    Scambuster Member Posts: 973
    #14
    ratface said:

    I had Mono
    Thats why nI ask. It may then be another factor to consider for Base of the tongue also.

    EBV HPV Etc
    I think there is too much emphasis put on the viruses as 'causes' rather than them being associated with cancer incidence amoung a miriad of other possible conditions. These viruses leave the body in a weakened state = post viral syndrome etc. When your body is weakened, the chances for other disease to infiltrate increases.

    The important thing now is to repair the damage these viruses along with the cancer and the treatments have caused, and to thus create a healthy immune system so they do not get hold and create more havoc. These viruses generally get a grip on you when you are run down, stressed etc. If you maintain the same condition, you run the risk of infection / reinfection from a whole host of viruses, bacteria and disease.

    I think all of us must have let our guards down in some way or another. Figure out what that was. Some are self inflicted, other just bad luck. My search has lead me to believe the major factor involved is diet (as I harp on here about). There is so much bad information about diet in the market from diet fad books to FDA Approved **** reports, that people are mostly confused.

    The average diet in the US is pathetically lacking in nutrition and over loaded with unhealthy fats, and generally processed into oblivion anything that may have been good to start with. It is quite simple, fresh raw food have all the stuff you need and will improve your chances of recovery and regaining health. there is no question of this. The longer people hang off confronting this fact, the longer the battle will continue.

    Enough of the rant for today.

    Scam

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