Nasophranx Cancer S2/S3

2»

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    Barbaraek said:

    T2

    Kenny, T2 is great news! I am curious-did you have any symptoms? Most NPC don't present with symptoms until they are a later stage. Good luck with your treatment, you have good reasons to be optimistic, and you'll have a great support network here cheering for you.

    Barbara

    Hi Ken

     

     

    Just be strong and have faith, then fight it with you got in you. Also please let us know how you are doing once your treatment starts.

    Tim

  • Kenny-
    Kenny- Member Posts: 99 Member
    Hondo said:

    Hi Ken

     

     

    Just be strong and have faith, then fight it with you got in you. Also please let us know how you are doing once your treatment starts.

    Tim

    Will keep all posted

    Will keep everyone posted. This forum has been a great help. The only people who know are my family, and 4 work colleagues (strict on a need to know basis), and this FORUM. It can get lonely.

    Barbara - I had frequent ear blockages (which I can pop open), but I started having blood in sputum which I blamed the weather and cough. But after 4 months, the blood didn't go away and I was referred to an ENT. One thing led to another and they found me with this. 

    Just like anyone here, I was really shocked by it since I eat well, and my BMI is 23 (no weight issues). The only thing I had going for me is work stress with very little sleep (I tend to push myself quite hard), and my location from South East Asia (SEA). The ENT was highly suspicious when I said I came from SEA, and became quite nervous when he heard that, and followed up with a series of scans leading to the conclusion. 

    It grows quick. My left ear is almost completely blocked now and I can no longer pop it (4 months ago it wasn't). My parents just happened to be visiting for a vacation, and so happened to be around while I'm diagnosed so they're helping out. I believe God has a plan. 

    I saw you post another topic on cooking - I'll be monitoring that closely! My hobby is cooking, I cook almost on a daily basis for the family. I guess I won't be able to taste food like how I used to for a very long time. But, it's time to roll with the punches and put that aside for now. 

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Kenny- said:

    Will keep all posted

    Will keep everyone posted. This forum has been a great help. The only people who know are my family, and 4 work colleagues (strict on a need to know basis), and this FORUM. It can get lonely.

    Barbara - I had frequent ear blockages (which I can pop open), but I started having blood in sputum which I blamed the weather and cough. But after 4 months, the blood didn't go away and I was referred to an ENT. One thing led to another and they found me with this. 

    Just like anyone here, I was really shocked by it since I eat well, and my BMI is 23 (no weight issues). The only thing I had going for me is work stress with very little sleep (I tend to push myself quite hard), and my location from South East Asia (SEA). The ENT was highly suspicious when I said I came from SEA, and became quite nervous when he heard that, and followed up with a series of scans leading to the conclusion. 

    It grows quick. My left ear is almost completely blocked now and I can no longer pop it (4 months ago it wasn't). My parents just happened to be visiting for a vacation, and so happened to be around while I'm diagnosed so they're helping out. I believe God has a plan. 

    I saw you post another topic on cooking - I'll be monitoring that closely! My hobby is cooking, I cook almost on a daily basis for the family. I guess I won't be able to taste food like how I used to for a very long time. But, it's time to roll with the punches and put that aside for now. 

    SEA

    NPC is also known as "Cantonese C", Kenny, due to an extremely high % of cases that occur in certain provinces along the coast of China. That is why your Dr showed some alarm when you told him about that area of Asia. It is also why NPC is not thought to be casued by smoking, or didn't used to be. FYI:

    Nasopharyngeal carcinoma (NPC) is caused by a combination of factors: viral, environmental influences, and heredity. The viral influence is associated with infection with Epstein-Barr virus(EBV). The Epstein-Barr virus is one of the most common viruses. 95 percent of all people in the U.S. are exposed to this virus by the time they are 30–40 years old. The World Health Organization does not have set preventative measures for this virus because it is so easily spread and is worldwide. Very rarely does Epstein-Barr virus lead to cancer, which suggests a variety of influencing factors. Other likely etiological factors include genetic susceptibility, consumption of food (in particular salted fish)  containing carcinogenic volatile nitrosamines. 

    The association between Epstein-Barr virus and nasopharyngeal carcinoma is unequivocal in World Health Organization (WHO) types II and III tumors but less well-established for WHO type I (WHO-I) NPC, where preliminary evaluation has suggested that human papillomavirus HPV may be associated.  EBV DNA was detectable in the blood plasma samples of 96% of patients with non-keratinizing NPC, compared with only 7% in controls. The detection of nuclear antigen associated with Epstein-Barr virus (EBNA) and viral DNA in NPC type 2 and 3, has revealed that EBV can infect epithelial cells and is associated with their transformation. The etiology of NPC (particularly the endemic form) seems to follow a multi-step process, in which EBV, ethnic background, and environmental carcinogens all seem to play an important role. More importantly, EBV DNA levels appear to correlate with treatment response and may predict disease recurrence, suggesting that they may be an independent indicator of prognosis. The mechanism by which EBV alters nasopharyngeal cells is being elucidated to provide a rational therapeutic target. 

    Epstein-Barr is known to us as "Mononucleosis," which back in my teenage years had to do with kissing gals too much, and maybe too many gals! The "salted fish" in the above is why they call it Cantonese C- that is part of the traditional diet in Cantonese China area where so many cases of NPC happen.

    kcass

  • Kenny-
    Kenny- Member Posts: 99 Member
    Kent Cass said:

    SEA

    NPC is also known as "Cantonese C", Kenny, due to an extremely high % of cases that occur in certain provinces along the coast of China. That is why your Dr showed some alarm when you told him about that area of Asia. It is also why NPC is not thought to be casued by smoking, or didn't used to be. FYI:

    Nasopharyngeal carcinoma (NPC) is caused by a combination of factors: viral, environmental influences, and heredity. The viral influence is associated with infection with Epstein-Barr virus(EBV). The Epstein-Barr virus is one of the most common viruses. 95 percent of all people in the U.S. are exposed to this virus by the time they are 30–40 years old. The World Health Organization does not have set preventative measures for this virus because it is so easily spread and is worldwide. Very rarely does Epstein-Barr virus lead to cancer, which suggests a variety of influencing factors. Other likely etiological factors include genetic susceptibility, consumption of food (in particular salted fish)  containing carcinogenic volatile nitrosamines. 

    The association between Epstein-Barr virus and nasopharyngeal carcinoma is unequivocal in World Health Organization (WHO) types II and III tumors but less well-established for WHO type I (WHO-I) NPC, where preliminary evaluation has suggested that human papillomavirus HPV may be associated.  EBV DNA was detectable in the blood plasma samples of 96% of patients with non-keratinizing NPC, compared with only 7% in controls. The detection of nuclear antigen associated with Epstein-Barr virus (EBNA) and viral DNA in NPC type 2 and 3, has revealed that EBV can infect epithelial cells and is associated with their transformation. The etiology of NPC (particularly the endemic form) seems to follow a multi-step process, in which EBV, ethnic background, and environmental carcinogens all seem to play an important role. More importantly, EBV DNA levels appear to correlate with treatment response and may predict disease recurrence, suggesting that they may be an independent indicator of prognosis. The mechanism by which EBV alters nasopharyngeal cells is being elucidated to provide a rational therapeutic target. 

    Epstein-Barr is known to us as "Mononucleosis," which back in my teenage years had to do with kissing gals too much, and maybe too many gals! The "salted fish" in the above is why they call it Cantonese C- that is part of the traditional diet in Cantonese China area where so many cases of NPC happen.

    kcass

    First Treatment

    thanks Kent! Unfortunate that it had something to do with location! Oh well... I'll be avoiding salted fish (and my kids) for now. My test results for EPV isn't out yet, but it's highly likely since it was the "Poorly differentiated SCC" which is highly correlatble to EPV. 

     

    I just had my first treatment radiation and chemo. At a last minute change I opted for a weekly chemo of 40mg/m2. I don't feel anything, no nausea or anything. But I also do know it's just the start. I've been eating (similarly to jakesaround) excessively just to get some calories in while I can. 

     

    I've been watching my blood work - I heard it's more critical in the subsequent weeks so let's see how that goes. 

     

    Thanks everyone for the support! 

  • Kenny-
    Kenny- Member Posts: 99 Member
    Spoke too soon

    Wow, chemo, a strange sensation of 'tiredness' that only kicked late yesterday. I took a couple of hours of extra sleep to recuperate and took promethazane to help sleep.

     

    3 / 35; and the long countdown begins.

  • Hondo
    Hondo Member Posts: 6,636 Member
    Kenny- said:

    Spoke too soon

    Wow, chemo, a strange sensation of 'tiredness' that only kicked late yesterday. I took a couple of hours of extra sleep to recuperate and took promethazane to help sleep.

     

    3 / 35; and the long countdown begins.

    Tiredness

     

    Yep that will be the chemo working, it is normal so don’t let it worry you any. You will start to feel different little things little by little as the treatment continues. Just keep your focus on getting through this and in a little more than a month you will be at the finish line.

     

    God Bless

    Tim

  • Barbaraek
    Barbaraek Member Posts: 626
    Kenny- said:

    Spoke too soon

    Wow, chemo, a strange sensation of 'tiredness' that only kicked late yesterday. I took a couple of hours of extra sleep to recuperate and took promethazane to help sleep.

     

    3 / 35; and the long countdown begins.

    Those days will go by

    My husband's chemo side effects always kicked in about two days afterwards, once the IV anti-nausea drugs and steroids were done.  Those radiation days will click by...just keep putting one foot in front of the other and you'll get there. We are all rooting for you Kenny!

    Barbara

  • jakesaround
    jakesaround Member Posts: 34
    Kenny- said:

    Spoke too soon

    Wow, chemo, a strange sensation of 'tiredness' that only kicked late yesterday. I took a couple of hours of extra sleep to recuperate and took promethazane to help sleep.

     

    3 / 35; and the long countdown begins.

    Hey Kenny, I am glad you are

    Hey Kenny, I am glad you are doing well through your first week of treatment. Get plenty of rest and take those anti nausea meds sooner than later if you start to feel queezy at all.

    Also i meant to ask did you decide to get the feeding tube? Just curious as I did not.

    ttyl.

    jake...

  • Kenny-
    Kenny- Member Posts: 99 Member
    Not Yet PEG

    Feeling a lot better today (4th day after the first weekly chemo). Coincidentally, my daughter had a stomach bug, so it could have been that (or the chemo). Apetitite came back full swing today with a crawing only for certain foods. Still downing as much water as possible. 

    I have not got a PEG tube yet. I'm hoping I don't have to and doctor says I may be able to "survive without one", but reading the realities of the experience here, I wouldn't avoid it if it's going feed me go through the treatment successfully. I guess the decision point for that will be about 3-4 weeks from now! 

    My left ear middle ear is blocked, and I should be considering an ear tube placement. 

  • lifeisDHA
    lifeisDHA Member Posts: 64
    Kenny

    I just want to say that stage 2 has very good outcome. The treatemnt is tough but it will be over.

  • wmc
    wmc Member Posts: 1,804
    Kenny- said:

    Not Yet PEG

    Feeling a lot better today (4th day after the first weekly chemo). Coincidentally, my daughter had a stomach bug, so it could have been that (or the chemo). Apetitite came back full swing today with a crawing only for certain foods. Still downing as much water as possible. 

    I have not got a PEG tube yet. I'm hoping I don't have to and doctor says I may be able to "survive without one", but reading the realities of the experience here, I wouldn't avoid it if it's going feed me go through the treatment successfully. I guess the decision point for that will be about 3-4 weeks from now! 

    My left ear middle ear is blocked, and I should be considering an ear tube placement. 

    You seem to be doing better than most..........

    You're doing better than most at this time frame so you just might be the "Lucky one" and not have much major problems. Just take it one day at a time and keep drink or sipping that water, it does help.

    Thought's and prayers

    Bill

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
     

     

  • Kenny-
    Kenny- Member Posts: 99 Member
    edited May 2016 #34
    NED!

    Got my first NED! Happy to join the NED club! I'm cautiously optimistic that it's just the first scan and still a long way to go, but small celebrations of victory. I couldn't even remember how tough it was, it's amazing how the body wants to forget what happened. 

    I seem to have a sinus retention cyst, still reseraching on what that means. The doctor has decided not to intervene. I'll do some read-up on it though.

    thanks everyone for the support! 

  • MrsBD
    MrsBD Member Posts: 617 Member
    NED

    Great news! It's a day to celebrate and thank God for good results!