Nasopharyngeal Cancer

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

npcsurvivor said:

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

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

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

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

Barbaraek said:

It makes my heart sing

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

Barbara

Me too!

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

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

 

 

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.

caregiver99 said:

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.

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.

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.