Adjuvant Chemo for Nasopharyngeal Cancer

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SteffFelle
SteffFelle Member Posts: 1
in Head and Neck Cancer #1

Hi.  New to this site.  I am 4 weeks out of concurrent radiation and chemo.  I’ll be starting adjuvant chemo (Cisplatin combined with 5fu) and I’m wondering how it compares to the cisplatin I got during radiation.  I’m doing ok starting eating soft foods but having a hard time keeping food down.  I’ve got the feeding tube but ild really like to have it removed.  Drs said wait till after final rounds of chemo.  Can someone please share their experience of what I can expect in the weeks months to come?  Thanks in advance ❤️Steff

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  • corleone
    corleone Member Posts: 312 Member
    #2
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    NPC survivor

    One month recovery after concurrent chemo and radiation, and then I had adjuvant carboplatin on day 1 plus fluorouracil (5-FU) 1000 mg/m2/day by continuous IV infusion on days 1-4 every 4wk for 3 cycles. Cisplatin was ototoxic (hearing loss) hence switched to carbo. The 5FU was given by continuous infusion (96 hours) using a portable pump. It was really annoying during those 5 infusion days, on one hand having the G tube, on the other the midline for continuous infusion, I was not able to get a proper sleep (had to sleep on my back only)

    Because I had carboplatin, the side effect were much lower than cisplatin. Fortunately I didn’t have much reactions caused by 5FU either. The MDs were afraid that I may have experienced mucositis (bad reactions at the mouth epithelium level) but that was not the case for me. So all in all, it was much better tolerated, and I was also starting seeing some improvements after the radiation.

  • aprilshower55
    aprilshower55 Member Posts: 31
    #3
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    Hi Steff,

    Hi Steff,

    I was first diagnose with NPC stage 3 in 2011. I had 35 rounds of rad.I had about 5 months of chemo can't recall the name. The side effects was awaful.

    I had mouth sores with so much pain and was on pain meds all day.  I had to have a G tube otherwise I would not have survived. After all the pain the cancer of gone.

    But I was not able to eat solid foof too much had to cut food in small sizes. I made mostly smoothies and drank ensure. 

    Had very dry mouth due to the rad. damage salivary glands. I could not sleep through out the night cause of my dry mouth. Thanks to this form

    A member suggested trying Xylimets and it has been so helpful. Can't sleep without it, but I still wake up to put tablets in my mouth. Before using

    xylimets I would only sleep an hour at a time.  Since using xylimets I can sleep at least 2 to 3 hours. (you can special oder xylimets at Coscto RX) 

    The stores do not carry over the counter.

    My cancer came back to both my lungs end of 2013. I have stage 4 NPC and getting chemo twice a month for the rest of life. Then end of 2016 I found

    I could not chew any of my solid foods cause I was not able to move my tongue. Went to see my oncologist, and refer me to a specialist for mouth

    and ran some test. Found my throat was not closing all the way like normal people when we eat or drink. So any food or liquid will go down the wind pipe

    and I would be choking til I end up throwing up. The doctor says this was a delay side effects from rad treament.  Which has damage the nerve in my

    throat area. They said I had to put a G tube in cause I can't risk choking on anything. They prscribe Javity shakes to feed with a syringe. I also am not able 

    to talk because I can't move my toungue.

    I was able to sip some liquid to wet my mouth and enjoy my wine. As of couple weeks ago I am not able to sip any liquid without choking.

    I also have hearing loss and both my ear drums have hole must use ear plugs to shower.  Plus you will experience dental issues cause of

    the dry mouth. I see my dentist every 3 month due to my dry mouth.

    There are surprise down the road I have discovered.  NPC is a rare cancer and I wish you luck.

    I hope I have helped. God Bless

     

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
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    I tried to get my Oncologist to take my tube

    out between the conncurent rads/Cisplatin and The adjuvant treatment.....he said no. I am really glad he did. I got the tube before treatment ever started and never used it once during radiation. Ah....but take those 3 Cisplatin treatments and add a 4 day fanny pack of 5FU, and I tube fed exclusively from July till September. My mouth is what couldn’t handle 5FU....even water was excruciating....keep your tube till you’re done with all treatments. 

    p

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