Nasopharyngeal Cancer

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Comments

  • ongsoonan
    ongsoonan Member Posts: 10 Member

    hi ongsoonan, welcome to our

    hi ongsoonan, welcome to our club.  i dont' think i've seen you post before so i'm guessing you are new.  you should start a new post and introduce yourself.  just copy and paste what you have typed in this post then start the new post.  you should hear from folks who have experience with your type of cancer and can tell you what they went thru and see how that compares to what you are going thru.  welcome to the group.

    dj

    Thank you dj and I will creat

    Thank you dj and I will creat a new post about my case. TQ

  • npcsurvivor
    npcsurvivor Member Posts: 27
    Still kicking

    Hello folks,

    I haven't been to the forum in a while. I was treated for Stage II NPC in June 2009. No recurrence so far but living with some of the side effects of treatment - chronic sinus infection, facial thinning, SIBO and tinnitis.

    Regards

  • Hondo
    Hondo Member Posts: 6,636 Member

    Still kicking

    Hello folks,

    I haven't been to the forum in a while. I was treated for Stage II NPC in June 2009. No recurrence so far but living with some of the side effects of treatment - chronic sinus infection, facial thinning, SIBO and tinnitis.

    Regards

    Hi npcsurvivor

    I am glad to see you back and that you are still there and doing well, keep up the good work

     

    Tim

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

    Still kicking

    Hello folks,

    I haven't been to the forum in a while. I was treated for Stage II NPC in June 2009. No recurrence so far but living with some of the side effects of treatment - chronic sinus infection, facial thinning, SIBO and tinnitis.

    Regards

    2009

    npcsurvivor

    I, too, was an 09er- last rad on the first week in April. Found your post interesting- came down with a Cold about a month ago, and feel okay, now (got Cold medicine w/codeine), but find the nasal congestion is still very much with me. No blood, it's transparent as glass, but it's not diminishing. It's like the Cold is gone, but the excessive nasal congestion continues.

    No tinnitis or SIBO, but have a heckuva time with neck spasms- Neurologist has me on two meds to help. Your teeth take a hit? 

    kcass

     

  • Barbaraek
    Barbaraek Member Posts: 626

    Still kicking

    Hello folks,

    I haven't been to the forum in a while. I was treated for Stage II NPC in June 2009. No recurrence so far but living with some of the side effects of treatment - chronic sinus infection, facial thinning, SIBO and tinnitis.

    Regards

    It makes my heart sing

    to see those NPC survivors on the board here! Thanks for the update.

    Barbara

  • npcsurvivor
    npcsurvivor Member Posts: 27
    Hondo said:

    Hi npcsurvivor

    I am glad to see you back and that you are still there and doing well, keep up the good work

     

    Tim

    hey

    I was glad to see you as well Hondo. Keep preaching!

  • npcsurvivor
    npcsurvivor Member Posts: 27
    Kent Cass said:

    2009

    npcsurvivor

    I, too, was an 09er- last rad on the first week in April. Found your post interesting- came down with a Cold about a month ago, and feel okay, now (got Cold medicine w/codeine), but find the nasal congestion is still very much with me. No blood, it's transparent as glass, but it's not diminishing. It's like the Cold is gone, but the excessive nasal congestion continues.

    No tinnitis or SIBO, but have a heckuva time with neck spasms- Neurologist has me on two meds to help. Your teeth take a hit? 

    kcass

     

    Hello

    Hello kent,

     

    I am still trying to figure out how to keep my nasal and ear passages from clogging. Some things that help are as follows. Avoiding foods that your body can't tolerate as much as possible. In my case, it's dairy, high sugar, high fructose, high starch and high fat. Worst food for me to eat is a piece of cake ;). Using broad spectrum digestive enzymes definitely helps me eat more of the offending stuff. I use a particular product daily with meals. Also something that helps is anti-histamines. Taking Benadril Allergy at night makes things quite well in the morning but that's not something you can do regularly. Another thing that I found out recently but haven't tried yet is Quercetin (with Bromelain). Apparently, it reduces your histamine levels which has some other good effects on the body, such as anti-inflammation. Will let you know how that goes.

    I used to get neck spasms sporadically, especially when I am out in the cold. I have been working out somewhat regularly and can tell you that strengthening of muscles around the neck and shoulders helps reduce this problem. I haven't had a spasm in a long time. I learnt the hard way that when exercising it is very important to start slowly and not overdo it otherwise it may cause more problems.

    My teeth are in very good shape. Have good genes and I floss religously! Also a dentist friend told me about Mi Paste that mineralises your teeth. I used it regularly in the first few years after treatment when I had little saliva. Now I don't use it.

     

    Good luck!

  • npcsurvivor
    npcsurvivor Member Posts: 27
    Barbaraek said:

    It makes my heart sing

    to see those NPC survivors on the board here! Thanks for the update.

    Barbara

    THANK YOU

    Me too!

  • MW
    MW Member Posts: 3
    ongsoonan said:

    New NPC

    I was diagnosed with npc stage 3 in Dec 2013. I just completed radio/chemo about 2.5 months ago. I would very appreciate if you all could give me your opinions/suggestions on following matters.

    - I lost about 9 kg of my weight and feel very hard to gain my weight again. I only take vege, bean, fish, egg and milk (ensure). What is the appropiate diet for npc patient?

    - In Malaysia, normally we only go for CT or MRI scan. Is it enough? or PET scan is better?

    - I feel quite weak compare to the past and just can do some simple exercises daily (about 45-60 min). 

    - I canot sleep well at night due to dry month. I use biotene/oral 7 but no improvement.

    Thank you   

    sleeping

    Hi, I too have dry mouth from my treatment for NPC in June-2011.  Finished treatment in Nov. 2011. 

    Someone on this blog suggested using "XyliMelts" for your dry mouth. It works good for me, I put

    one on each side of my cheek (on the inside) and it last about 21/2 to 3 hours while you sleep. Before I was

    getting up every hour to drink water for my dry throat. It is not a cure but it helps.

    good luck

  • mhamecher
    mhamecher Member Posts: 1
    NPC - Tooth Extraction without hyperbaric treatment?

    Hello Everyone - I completed NPC treatment on Dec. 31, 2015 almost one year.  I still have problems with constant congestion and mucus.  I had a feeding tube from 10/1/15 - 11/1/16.  My esophagus closed because of scar tissue and I was unable to eat anyting for months.  I had to have 4 dialtions to stretch my esophagus, which was very successful. I recommend the procedure to anyone who has this problem.  My hearing diminished a great deal, now I have constant white noise.  I can hear but compared to the way I used to hear, I feel like I am deaf.  The radiation destroyed the nerves in some of my teeth and they need to be extracted.  However, the Dr. says I cannot do it unless I go through hyperbaric treatment.  I've read that if my jaw bone is OK, I do not need to go through that procedure.  Has anyone had extractions without the hyperbaric treatment? 

    Please feel free to contact me.  Thanks, Marilyn

     

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited December 2016 #52
    mhamecher said:

    NPC - Tooth Extraction without hyperbaric treatment?

    Hello Everyone - I completed NPC treatment on Dec. 31, 2015 almost one year.  I still have problems with constant congestion and mucus.  I had a feeding tube from 10/1/15 - 11/1/16.  My esophagus closed because of scar tissue and I was unable to eat anyting for months.  I had to have 4 dialtions to stretch my esophagus, which was very successful. I recommend the procedure to anyone who has this problem.  My hearing diminished a great deal, now I have constant white noise.  I can hear but compared to the way I used to hear, I feel like I am deaf.  The radiation destroyed the nerves in some of my teeth and they need to be extracted.  However, the Dr. says I cannot do it unless I go through hyperbaric treatment.  I've read that if my jaw bone is OK, I do not need to go through that procedure.  Has anyone had extractions without the hyperbaric treatment? 

    Please feel free to contact me.  Thanks, Marilyn

     

     

    Marilyn....

    I think you'll get way more answers by starting a new thread of your own.  Go here:

    http://csn.cancer.org/forum/164

    and on the left side, right under HEAD AND NECK CANCER you'll see "Add new Forum Topic".  This is an old thread, and sometimes people just skip over it.

    p

     

  • NasoLash
    NasoLash Member Posts: 3
    mhamecher said:

    NPC - Tooth Extraction without hyperbaric treatment?

    Hello Everyone - I completed NPC treatment on Dec. 31, 2015 almost one year.  I still have problems with constant congestion and mucus.  I had a feeding tube from 10/1/15 - 11/1/16.  My esophagus closed because of scar tissue and I was unable to eat anyting for months.  I had to have 4 dialtions to stretch my esophagus, which was very successful. I recommend the procedure to anyone who has this problem.  My hearing diminished a great deal, now I have constant white noise.  I can hear but compared to the way I used to hear, I feel like I am deaf.  The radiation destroyed the nerves in some of my teeth and they need to be extracted.  However, the Dr. says I cannot do it unless I go through hyperbaric treatment.  I've read that if my jaw bone is OK, I do not need to go through that procedure.  Has anyone had extractions without the hyperbaric treatment? 

    Please feel free to contact me.  Thanks, Marilyn

     

     

    Left Mandibular Sarcoma Removal and Recontruction

    Hello, I was treated for Nasopharyngeal Cancer about 13 years ago. I lost most of my Salivary Gland usage and taste was ruin for 2 years only. Taste came back. I relied with constant water and Biotene's Moisterizing Gel. My nasal cavity was also very dry creating blockages. I also used Neil Med to rinse in the mornings and combined saline solution with Ponaris which help sooth the canal and keep it moist.

    About a year ago I started having soreness in my left lower jaw(Mandible). Eventually it got to a point where I was having trouble opening my mouth.Cheek biteing and soreness in the jaw was making it very difficult to eat. Relied on drinks and ground foods. At this point I was beginng to think Cancer. I went to Fox Chase Cancer Center and had them check me out. After 2 scans they still needed to do a biopsy to know for sure. At that point I got the all clear. I was told to take 30 HBOT treatments for the surgery I had just had. Couldn't do the HBOT before because if it was cancer the HBOT could increase the growth.

    After the HBOT treatments I went to see a oral maxillofacial surgeon. They diagnosed me with Osteoradionecrosis. The Jaw bone was dying from the previous radiation damage 12 years ago. It took 2 additional surgeries and 30 more HBOT and now ended up with an Mandibular Sarcoma. I am scheduled to have my Left Mandible removed and reconstructed using my Fibula(least used leg bone). I am scheduled on 12/14/2016 ARE THERE ANY PEOPLE OUT THERE THAT HAVE HAD A MANDIBULAR JAW REMOVAL AND RECONSTRUCTION? i'D LIKE TO HEAR SOME SUCCESS STORIES.

     

  • SPK2016
    SPK2016 Member Posts: 1
    edited December 2016 #54
    NPC Survivors

    I was diagnosed with NPC in April of 2016 and started treatment on June 6, 2016.  I completed treatment (33 radiation, 6 weekly rounds of cisplatin, break for one month then 3 rounds of Taxol/Carboplatin every 21 days) in October of 2016.  I am not sure what Stage I was as the doctor never said specifically, but it metastasized to the lymph nodes in right side of my neck.  I got my first clean scans in November 2016.  I am doing really well with no side effects except some dry mouth.  My doctors gave me a very good prognosis but I was just wondering how long some of the survivors in this forum have been in remission without any type of recurrance?  Thanks. 

  • mimi1107
    mimi1107 Member Posts: 1

    npc
    I have seen many posts here from npc survivors. My girlfriend was diagnosed with stage 4 npc last july at age 31. She is doing good now and continue to recover.

    npc

    Hi @caregiver99, how is she now? Did she have any recurrence? 

    My dad just got diagnosed with NPC stage 4 as well, just 3 weeks ago. He is 57y/o now and is a bit weak. We decided to postpone his chemo and radiation for 2-3 weeks and had him drink some supplement just so he can get a bit stronger before he undergo all his treatment. 

    Thanks in advance for your reply.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    mimi1107 said:

    npc

    Hi @caregiver99, how is she now? Did she have any recurrence? 

    My dad just got diagnosed with NPC stage 4 as well, just 3 weeks ago. He is 57y/o now and is a bit weak. We decided to postpone his chemo and radiation for 2-3 weeks and had him drink some supplement just so he can get a bit stronger before he undergo all his treatment. 

    Thanks in advance for your reply.

    Welcome

    mimi1107,

    Welcome to the H&N forum, I am sorry to hear about your Dad.

    Caregiver99 has not been on the forum since December 2014, so your chances of a reply are slim.  You may wish to start a new thread and see what interest you get from the members.  NPC has been a topic of late for a few and you might be lucky.

    Matt

  • bunty21
    bunty21 Member Posts: 3
    radiiotherapy effects Nasal congestion

    hello every body

    this is my first post, had NPC diagnosis recently.  I had tonsil cancer SCC 7 years ago and went through the chemoradiation followed by neck dissection,  this time no symptoms except tired and weight loss but GPs didnt listen and messed around instead of getting scans done straight away,  seems a tumour has been growing in the parapharyngeal space (side of nose quite far back into head and up to skull base) and this grew and invaded the space, with suspected mucosal spread behind my nose.   the tumour is tested positive for HPV virus, and my tonsil cancer was also an HPV carcinoma.     I have begun radiotherapy, but regret it now as the effects are far worse as some areas - one side of my mouth especially have already received radiation from the past treatments in 2010, and are reacting much sooner than my experience with severe ulceration on my tongue edge and back of soft palate with bleeding at only 2nd week of RT - have 4 more to go to complete the 6 weeeks of rads.  I fear that such effects of tissues that have already been radiated the first time around, will prevent the completion of the RT program.   I wiish I had looked into Proton beam therapy which is not avaialble in the UK, but I could have gone elsewhere in Europe for it.  now other centres will not be able to accept me for PBT as I have already started radiotherapy here (day 12 of 30 rads today), and so it would mean interupting the RT and doctors dont like you to do that, as it give the tumour a chance to come back very quickly.   when i was treated in 2010 for tonsil cancer the main effects were oral mucositis and saliva problems.  this time I will also have to deal with the mucus problems in the my nose, and I am asking for your suggestions and advice with what works and helps, so I can get started straight away.   I have started using a saline spray, but need to know if you can recomend other methods to offset this side effect - how do I go about nasal irrigation ?  any products that help etc.  I am exhausted and late here but will post again .  thank you.  I am being treated in the UK.