been a year since diagnosed with npc

CherriBlossom
CherriBlossom Member Posts: 44 Member
Time flies when you have so many doc's appointments. Last year this week, I was told about the bad news - NPC Stage 4 and was told I had roughly 40% survival rate. After the biopsy came back which shows EBV, doc told me my prognosis is better, survival rate increased to 50%. I went through some emotional roller coaster but did manage to complete my treatment and so far all scans and scopes have been clear. some side effects but nothing major. Thyroid is a little low so doc prescribed synthroid and after taking it for 2 months thyroid level is back to normal. skin is dry and peeling in some areas. still not back to my normal weight becuase my appetite still not back. Still drinking lots of ensure but i have to stop becuase my blood test came back with too much sugar. now what do i take that has high calories but less sugar? energy level is not bad, almost back to normal. I am paranoid about losing my teeth so i brush 5 to 6 times a day. Of course there is always fear of the beast coming back.

Anybody tested EBV positve for your cancer? Is your doc monitoring the EBV level in your blood after the treatment? I read this is a marker for predicting NPC reccurrance but my doc doesnt believe in this so they dont monitor my blood for EBV and told scans and scope are the monitoring tools.

Comments

  • meaganb
    meaganb Member Posts: 244 Member
    Congrats on getting to
    Congrats on getting to another year! Definitely cause for celebration!:) I drink Bolthouse and Odwalla smoothies. You can typically find them in your produce section, they are refrigerated. They have lots of flavor combos and several that are high protein. An average bottle is somewhere between 300-400 calories and the sugar is not as high as Ensure/Boost, plus its typically sugar from fruits, etc so it's not as bad as the HFC. Don't have any info for your other questions, but hope someone chimes in to help!:)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Congrats...
    Awesome having you here....

    Don't buy into those percentages, you've been here long enough to know they are all over the place.

    Best,
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    Great!! One year out.....
    I'm not one to listen to stats either, they're scary, impersonal...and like John says....they're all over the place.

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

    Great!! One year out.....
    I'm not one to listen to stats either, they're scary, impersonal...and like John says....they're all over the place.

    p

    EBV
    I've inquired about, and my Drs say pretty much what your's does. One year- YES!

    kcass
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    Kent Cass said:

    EBV
    I've inquired about, and my Drs say pretty much what your's does. One year- YES!

    kcass

    Congrats on your news!!
    Happy for you !!! :)

    Best,

    Tim
  • amr2662
    amr2662 Member Posts: 45 Member
    Glucerna
    Look into Glucerna. It is a shake like Ensure but for diabetics.
    I am not diabetic so I don't know much about it so please investigate whether it is right for you.

    Meredith