NPC met to bone

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kwana3
kwana3 Member Posts: 10
in Long-Term Survivors #1
When I first get NPC, I was staged 4b. It was treated with 3 rounds of chemo of cisplatin and 5FU and than 33times imrt with 3 rounds of cisplatin. After the treatment was done, I had a blood test after eight weeks and the ebv dna reading is 337. The doctor say that it may drop a bit more in a month so I did the blood test a month later and got a reading of 4300. Did a MRI for the head and body PET/CT and found that the npc had met to 3 parts of my bone. The tumors is not too bad as it just start to grow again, the biggest one is 1x.6.1.6cm. But as I read the prognosis of bone met for npc is pretty bad!! This time I am treating the npc with cisplatin and gemcitabine. Six rounds of it. The doctor say the will do a blood test and see if it reacts to the chemo. If not they will have to change the chemo again.. also if I feel pain to my bone, they would use radiation on it.

Would really like to learn more about it or heard if anyone had heard about stories of bone met NPC patients so I can learn a bit more from them. Thank you so much

Is there any long term survivors with NPC met to bone?

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  • Hondo
    Hondo CSN Member Posts: 6,636 Member
    #2
    Hi Kwana

    Don’t give up I had my NPC come back 3 times, the last time was in 2006, and I am still alive. No problems from the NPC but a lot of problems from all the radiation. Click on my name Hondo and it will let you see my all about me page. Alco go to the Head & Neck page here on CSN you will find a lot more help from many who are survivors of NPC   God bless

    Tim Hondo

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