Jitters again over staying here or

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  • jtl
    jtl Member Posts: 456
    #22
    Kent Cass said:

    John's treatment-
    Might not be right for NPC, Phrannie. "Concurrent" chemo and rads is the standard for NPC, and that is what I had back in early-09. My first rad session was about a half-hour after they hooked the two pumps up into my Port, and I got those pumps removed about a half-hour before my fifth rad session on day-5. If you watch those You Tubes- yes, they had been studying John's regiment, but "concurrent" was still the standard for NPC. You might wanna advise your team that you are aware of this, compliments of Dr Lori Wirth (private message time).

    kcass

    I had concurrent for 8 weeks
    I had concurrent, 8 weeks of Erbitux including the "loading" dose and 35 fractions of TomoTherapy which is just a newer version of IMRT.
  • jtl
    jtl Member Posts: 456
    #23
    Skiffin16 said:

    Not Mine ~ JTL
    That wasn't exactly how mine was performed...

    A lot on here like me, didn't have the dot tattoo. Most if not all that have had rads did get the mask...the dreaded mask. I worried and the anxiety built for nearly three months while going through my initial nine weeks of chemo (cisplatin, taxotere and 5FU) and associated for the time to wear the mask.

    When I finally got to that point, seven additional weeks of weekly carboplatin and the 35 daily amifostine injections in the tummy, and the mask for 15 - 20 minutes each day (closer to 30 on Mondays. Monday was the only day the did addtional x-rays or scans to verify the mask fit.

    Now they did each day while fitting the mask, went through a strict regime of measurements and checking. That was consistant down to the mm, if it was too lose, a new mask would have to be made.

    They actually did make a new mask for me, as the first was made before I started any treatment. After 9 - 10 weeks, the tumor had dissolved and I had lost a little weight.

    BTW, a little xanax worked wonders for the first few days of anxiety. After that first week, I no longer needed the meds, I was used to the routine.

    Best,
    John

    I didn't have a tat either
    I didn't have a tat either that part of the response was from another site that seemed to explain the pre-rad simulation which was the point I was trying to make. The chemo is so standard that it can be given almost anywhere without much concern but the simulation is another issue.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #24
    Kent - Both
    Kent,

    Remember I had both actually...

    I had nine weeks (three week cycles of cisplatin, taxotere and the 5FU pump (worn for four days)).

    But then I had seven weeks of concurrent carboplatin and the 35 daily rads. Each of the seven weeks, Monday was chemo and rads day, and T - F was just rads.

    JG
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #25
    Skiffin16 said:

    Kent - Both
    Kent,

    Remember I had both actually...

    I had nine weeks (three week cycles of cisplatin, taxotere and the 5FU pump (worn for four days)).

    But then I had seven weeks of concurrent carboplatin and the 35 daily rads. Each of the seven weeks, Monday was chemo and rads day, and T - F was just rads.

    JG

    Yep
    I do remember, John. Reason I noted the concurrent is that it seems for NPC that is the standard right from the get-go, especially with an ID'd Primary tumor that likely needs the rads to be applied ASAP. My Cousin got the same regiment as you, and many others, but his was also not NPC.

    kcass
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #26
    Kent Cass said:

    Yep
    I do remember, John. Reason I noted the concurrent is that it seems for NPC that is the standard right from the get-go, especially with an ID'd Primary tumor that likely needs the rads to be applied ASAP. My Cousin got the same regiment as you, and many others, but his was also not NPC.

    kcass

    Can't Say for NPC
    I'm not sure of what works best for which scenario, especially NPC....

    My ENT basically said for my Tonsil schedule it could go either way, they were pretty close on results (chemo first, then concurrent, or concurrent first, then chemo)... At the time I went through, I guess they figured the chemo first was showing a little better results.

    I do believe the rads are more specific for killing a targeted area of cancer, whereas the chemo is more for distant or free floating cells.

    But I can say the chemo alone killed the tumor as it had came on fairly quickly and within the second big round of chemo, you could tell definite shrinkage. At the end of round three it was completely gone confirmed by CT.

    JG

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