Can nasopharyngeal carcinoma be treated without radiation?

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tktktk
tktktk Member Posts: 6
edited November 2019 in Head and Neck Cancer #1

Hi,

I was diagnosed stage 4c NPC with mets in September. Was told 5-10% chance of survival with no chance of curing the disease.

Have finished 3 rounds of neoadjuvant chemo (Cisplatin,Taxotere, 5FU). I also have worked the last month with a healer.

A month ago, after the 2nd round of chemo, I decided not to do radiation, b/c I was feeling so great and really felt like the cancer was healing.

This week's PET-CT shows all clear / complete response in primary and bone mets.

Doctors are telling me that chemotherapy alone cannot cure this cancer and if I don't radiate, the cancer will 100% come back.

Is this true? Or is it just the doctors' experience b/c everyone opts for radiation / standard of care? Seeking anectdotal evidence of the opposite.

For now, I'm considering another round of chemo and then possibly immunotherapy as maintenance.

Thank you for your input!

Comments

  • Logan51
    Logan51 Member Posts: 464 Member
    #2
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    tk

    I saw a H&N seminar on You Tube several years ago w/top Dr.s from all over the world. The US was represented by a lady from Dana Farber. One of the few definites they agreed on, and she was the one who stated it, is that the only proven cure for NPC is concurrent Chemo and Rads. Asia is way ahead of us, because 90% of NPC happens there. And yes, there was a top man Dr. from that general area at the seminar. Sorry.

    And by the way: I'm a 10 year/7 month Survivor of NPC and got the concurrent Chemo and Rads. Check my profile page.

  • SuzJ
    SuzJ Member Posts: 427 Member
    #3
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    Chemo is key

    I was told, as many others also, that the chemo is just to boost the radiation, that you NEED rads to kill it.

    I didn't take any chances, I took whatever was going and asked for more, as I so wanted this thing, GONE

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #4
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    Treatment

    I'm going to recommend following your Oncologist's advice - unless you have some other significant factors. They successfully treat people who live for decades - every day!

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #5
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    Treatment

    Please enjoy your Thanksgiving as much as possible!!

  • corleone
    corleone Member Posts: 312 Member
    #6
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    should follow the doctor team’s advice, BUT...

    Ultimately, you should follow the doctor team’s advice. However, it has to be experienced team (large Cancer Center), who had treated many cases (of note NPC is rare in Caucasians, whereas in some parts in Southern China, or Southeast Asia, is endemic). I would suggest checking with medical (vs. radiotherapy) specialists. But here’s what I think:

    While concurrent chemo and radiotherapy is considered the most effective treatment, especially when the cancer spread is loco regional, in your case this may not be (necessarily) the case. There are a couple reasons I am saying that: 1) it has metastasized to begin with (pulmonary?), since you mentioned stage 4c. 2) not sure what “all clear” means, but I assume it’s complete remission, with no lesions that can be seen on the PET-CT scan. 

    Therefore, since a) there is no target left to irradiate; b) because cancer cells are already all over your body (so local H&N radiation would not treat these – although there is a caveat here, called abscopal effect, you can google to see what it is) and c) because the response to chemo was remarkable, probably continuing chemotherapy AND immunotherapy (the latter long term) would make sense. You should also ask about Cetuximab. Radiotherapy should definitely be considered if there is a recurrence in the H&N area.

  • aprilshower55
    aprilshower55 Member Posts: 31
    #7
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    Is a tough call, I have NPC

    Is a tough call, I have NPC in 2011, had the 35 rounds of rad, and chemo. I was clean for about year and half and 2013 it met to both of my lungs now I have stage 4 NPC.  Doc. say can not do Rad just chemo. I did it up until this Mar. I could not deal with the fatique and lost of engery anymore.  I since have turned on more herbal and natural therapy.  So far I had 2 CT scans and my tumors has been stable.  MCG is right about NPC is usally affects the cantonese people in China. You might want to do more research and see if there is any other options that works best for you. Just remeber every therapy in Western Meds has it's side effects.  We get meds to cure the problem but than you need more meds to take care of the side effects.  I have been taking herbs and supplements and now I feel more engery and able to walk more without being so tired. 

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #8
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    aprilshower55 said:

    Is a tough call, I have NPC

    Is a tough call, I have NPC in 2011, had the 35 rounds of rad, and chemo. I was clean for about year and half and 2013 it met to both of my lungs now I have stage 4 NPC.  Doc. say can not do Rad just chemo. I did it up until this Mar. I could not deal with the fatique and lost of engery anymore.  I since have turned on more herbal and natural therapy.  So far I had 2 CT scans and my tumors has been stable.  MCG is right about NPC is usally affects the cantonese people in China. You might want to do more research and see if there is any other options that works best for you. Just remeber every therapy in Western Meds has it's side effects.  We get meds to cure the problem but than you need more meds to take care of the side effects.  I have been taking herbs and supplements and now I feel more engery and able to walk more without being so tired. 

     

    It seems like

    You have found something that works for you in the herbal and natural therapy. You have more energy and who can argue with stable tumors. It would certainly be better if they were shrinking but the fact they are not growing is certainly a plus. Take care-God Bless

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