Too much chemo for NPCA Non keratinizing Stage 2

mitch16
mitch16 Member Posts: 16
in Head and Neck Cancer #1

I would like to inquire about chemotheraphy protocol. My husband was diagnosed of NPCA stage 2

he went to 3 cycles of cisplatin (1 day admission every cycle) and 3 cycles of cisplatin & 5fu (5 days of admission per cycle).

His onco wants him to undergo last cycle of cisplatin & 5fu but before she told us that it will only be for 3 cycles.

I am really confused if he will continue to the 4th cycle of 5fu & cisplatin. my husband refuses to undergo the 4th cycle because the onco originally told him only 3 cycles of 5fu/cisplatin.

We confirmed his onco before starting the 1st cycle of cisplatin/5fu on to how many cycles he will undergo. She told us only 3 cycles. Also, his rad onco told us radiation alone is enough for his stage but the med onco wants him to undergo the adjuvant chemo which is the 3 cycles of cisplatin/5fu just to be aggressive. We went to his ENT for nasal endoscopy, thank God the result was good no mass was seen in the nasopharyngeal area. He also told us that the nasopharyngeal area is clean as if he didnt have npca before. His MRI will be on Feb 19 2013.

His sister also refuses to continue the 4th cycle because he is suffering too much (due to pneumonia he had this last week of january) and she believes that God healed him and went to a complte treatment of chemotheraphy.

I also believe that 3 cycles of cisplatin/5fu is the complete protocol because that was the first protocol the onco gave us maybe she is just confused (when she told us about the 4th one) and that is the protocol given in US.

Thanks,

Mitch16

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I can't think of anyone here who has had

    4 adjuvant chemo's...not saying I couldn't be wrong....just that I can't think of anyone.  I only had three Cisplatin/5FU's after rads were done and I had Stage III....and was told by my Onc. that this  protocol was deemed best by a board of HNC specialists from all over the country.  Chemo is damned hard on the body.....so a 4th seems a little like over-kill to me.....Maybe ask her straight up, Why??  What is she thinking? Why did she change her mind?

    p 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Trust Your MD's

    My thoughts are your MD is the expert......, Chemo Expert in their field, Rads in their field.

    Though I only had three cycles (three weeks each) of Cisplatin, Taxotere and a week of  5FU (each cycle), I did also have an additional seven weekly doses of Carboplatin along with 35 rads sessions concurrent.

    So if your loooking at chemo count, I had sixteen doses of four different types of chemo..., two of which were platinum based. Oh, and did I mention that was four years ago with clean scans since...

    If his body can handle it, I would let that be the determing factor for reasoning, not just becuase you were originally told only three sessions.

    There could be many reasons for the change, including new results, better chances of killing the cancer, etc...ask.

    But I wouldn't refuse treatment, just because you were told something upfront.

    I want the best possible chances of killing it once and for all. Hit me with what is needed up front, hopes for not doing it again down the road.

    I too had clean scans between the first nine weeks of chemo, before starting the additional seven weeks of concurrent. My ENT highly suggested that I do the additional seven weeks... His concerns and recommendation were enough for me to continue.

    My thoughts,

    John

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #4
    trust

    i trusted everything my doctor's wanted me to do. it's hard when your stuggling and certainly not feeling well. 

    BTW... they told me before i started i would do 33 rad treatments, then on the 32 treatment day they told me they were adding 5 more. i was not happy at all, i went with the additional and certainly was nothing i would wish on anyone. that was 17 years ago....

    i had cisplatin and 5FU that were in patient 24 hours per day for 5 days and then sent home for two weeks, this was done three times along with the concurant 38 gifts of radiation. 

    there was no stages for cancer status back then for me

    good luck with the choice

    john 

  • corleone
    corleone Member Posts: 312 Member
    #5
    Oncologist needs to clarify the reason

    While there are different protocols, the oncologist should clearly share with you the reason for the 4th cycle, as this was not part of the initial protocol. He can’t just “experiment” with you.

    In my case, this is the protocol that has been used:

    Acceptable chemotherapy regimen for advanced nasopharyngeal cancers (stages II-IVB):

      • Cisplatin 100 mg/m2 IV on days 1, 22, and 43 with radiation, then cisplatin 80 mg/m2 IV on day 1 plus fluorouracil (5-FU) 1000 mg/m2/day by continuous IV infusion on days 1-4 every 4wk for 3 cycles.

      • Radiation doses during concurrent chemoradiation are 70 Gy (2.0 Gy/fraction)

  • mitch16
    mitch16 Member Posts: 16
    #6
    corleone said:

    Oncologist needs to clarify the reason

    While there are different protocols, the oncologist should clearly share with you the reason for the 4th cycle, as this was not part of the initial protocol. He can’t just “experiment” with you.

    In my case, this is the protocol that has been used:

    Acceptable chemotherapy regimen for advanced nasopharyngeal cancers (stages II-IVB):

      • Cisplatin 100 mg/m2 IV on days 1, 22, and 43 with radiation, then cisplatin 80 mg/m2 IV on day 1 plus fluorouracil (5-FU) 1000 mg/m2/day by continuous IV infusion on days 1-4 every 4wk for 3 cycles.

      • Radiation doses during concurrent chemoradiation are 70 Gy (2.0 Gy/fraction)

    That is also the exact

    That is also the exact protocol given to him.

    We are going to meet his onco on feb 19 to clarify it.

    I hope she is just confused. I will update you guys after his check up on feb 19.

    Thanks for the reply.,

    Michelle

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #7
    mitch16 said:

    That is also the exact

    That is also the exact protocol given to him.

    We are going to meet his onco on feb 19 to clarify it.

    I hope she is just confused. I will update you guys after his check up on feb 19.

    Thanks for the reply.,

    Michelle

    There are many reasons

    Many reasons to modify, or extend a treatment protocol mid-stream.  I suspect that "confusion" is not one of the reasons.  Please discuss this with your doctor.

    Deb

  • mitch16
    mitch16 Member Posts: 16
    #8
    D Lewis said:

    There are many reasons

    Many reasons to modify, or extend a treatment protocol mid-stream.  I suspect that "confusion" is not one of the reasons.  Please discuss this with your doctor.

    Deb

    Hi,
    Whe went to his med onco

    Hi,

    Whe went to his med onco yesterday and confirmed to us that he already completed his chemotheraphy. It was only 3 cisplatin + 3 cisplatin and 5fu. She was just confused when she said he still needed the 4th cycle. We also went to his rad onco and told us that the result of his nasal endoscopy was a great sign of healing. They didnt found any scar and mass on his nasopharynx. He is noe schedule for MRI this week. Hoping for NED after the MRI.

    Thanks & God Bless,

    Mitch16

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