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Help!! 14 year old son Nasopharyngeal Carcinoma

AgentJester
Posts: 14
Joined: Apr 2014

Help!  My 14 year old son wa diagnosed 3/19 with Nasopharyngeal Carcinoma.   He has had his first round of chemo ( Cisplatin and 5fu).  His treatment plan consists of a total of 5 chemos and 7 weeks radiation.   THere will be 3 rounds of chemo every 3 weeks.  The last two rounds of chemo will be combined with the radiation.

I have so many questions so please let me know anything you may feel is important, even if I do not specifically mention it.  What kind of side effects can we expect and in your experience did anything help?

Radiation or Proton therapy?  I have read that proton therapy should have less side effects,  however,  I am worried about his state of mind if we end up doing proton therapy because we would have to leave home during that time.  He had a difficult time being away from home during the first round of chemotherapy (5 days in the hospital).

I am also totally confused about all of the scans.  The 1st CT Scan (full body) findings stated the issue had not mestatasized.  Then a PET Scan showed a lesion in his pelvic area.  X-Ray no findings.  MRI large area of edema which means possible metastasis!  Really I don't understand how each scan seems to say something different.

Just please help me understand what is going on.  What questions to ask the doctors etc?  I am having a difficult time being strong but now add confusion and now I feel like I am crumbling!

 

AgentJester
Posts: 14
Joined: Apr 2014

Well, my 14 year old son has completed 5 rounds of chemo and 39 radiation treatments.  

Starting today we will begin his scans.  I can't wait for them to be over because I know they are going to be clear, they just have to!

His original diagnosis was Nasopharyngeal Carcinoma.  He is recovering pretty good from the radiation.  He began school on time and is doing great, tired and needs a nap most days.  Experiencing some stomach issues and appetite hasn't fully returned.  Seems like a lot is wrong but thinking of other side effects I read about he is doing well.

The only additional symptom that he is experiencing is leg pain.  A MRI will be done on that this weekend.

Please send prayers and positive thoughts his way.  

shamiemills
Posts: 1
Joined: Sep 2014

It was 10 years ago.  I am sooo thankful for her life (stage 4), but if you want to know the side effects she lives with, so maybe you can discuss early on, please contact me.

Begining next week, she will undergo 40 HPO treatments for ostenecrosis of the mandible.  she is 26 and will lose all her teeth.  She has lost most all her hearing.  Has had gall bladder removed and will have a heart valve transplant (pig) within the next 3 years.  She has undergone reconstructive surgery twice on the neck and shoulder.

Her children (that they said she would never have due to Cisplatnum) were born 3 months premature . . . 2 lbs, and 4 lbs.  Her youngest is being tested now for Cerebral Palsy.

 

She is the youngest person ever to lobby Congress on behalf of the American Cancer Society.  Her daughter has an ACS webpage.  If you search Nasopharyngeal Survivors on bing, she comes up at number 5!  There are so many things to be greatful for, but I ache for her everyday. 

 

Please feel free to call me.  BTW, amofostine(sp?) was key to minimalizing radiation damage.  Since NPC is so rare, not much has changed in 10 years.  Here in New Mexico, we were fortunate to have a radiologist from Hong Kong with experience in NPC.   My daughter was the first case treated in New Mexico!

 

Please let me help you any way I can.  shamiemills@yahoo.com

 

 

 

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