NPC with bone met

I found out that I got NPC and started treatment last Sept. Three months after the treatments, I did a PET scan and found that the cancer had went to my bones!!!! I had search on the internet and saw that when it gets to your bone, it is pretty bad and the chance of cure is low!! I am going back into treatment in 3 days! I just want to know anyone here has experience with NPC bone MET and would like to share their experience. As I am extremly worry and really wants to hear about more information!!! Thanks


  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Do know about the likelihood of NPC's spread, but am no help with the bone issue, other than to ask if they've said anything about a marrow transplant. Know the tricky part is finding a good match donor for such, though don't know if that'd be in play for this.

    If possible, could you provide some details about your chemo and rad treatment, and about your NPC- such as Primary or unknown Primary? And were you treated at a large facility? I, too, am/was NPC, as are a number of others here.

    Hopes and Prayers for you, Kwana

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Kwana

    I too had NPC 3 times but it never went to the bone, I have heard of others who did have this same problem and they beat it so you can too. Keep us up on what you are doing and hope we can be of help to you through your treatment.

    God bless and keep you in his care.
  • kwana3
    kwana3 Member Posts: 10
    History of my NPC
    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