Hate it but it's back again

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catfish_58
catfish_58 Member Posts: 138 Member
edited October 2018 in Head and Neck Cancer #1

sorry it's been so long, but just yesterday left my ENT office and got my results from my recent ct scans, Was told i have a recurrent from my cancer, this time it's on my base of my tongue, not many options was told to me, First option was open surgery and i was told that,that would consist of loss of tongue, reconstructive surgery for a flap in my mouth in place of that, loss of voice, tracea in place and would be there all my life, no food, will have a feeding tube reinserted, the list goes on. second option maybe can have robotic surgery depends on size of tumor i think and location.(not sure was in a trance after first news), was told they thought i have had all the radiation that i could handle and chemo probably wouldn't be an option,I am still in a little schock over this and last option was giving in and let it take it's course, Not a pretty picture was painted for last option,my first bout was over 5 years ago and my second bout was just at 4 years ago, Doctor thought since i went so long that this was probably scarring from surgery previously, he was wrong there, i never had a ct scan since then only a ultrasound, has anyone else had this done? was wondering about quality of life after this open surgery, why can you only have radiation once? and are there other methods for treatment? any help would be greatly appreciated

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  • corleone
    corleone Member Posts: 312 Member
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    Have you asked about Immunotherapy?

    Before embarking on any of the options provided, ask first if you can have immunotherapy treatment with a FDA approved drug, or (even better) in a clinical trial setting. Nothing to lose if doesn't work (as it's not so toxic) but everything to gain if it does. 

  • catfish_58
    catfish_58 Member Posts: 138 Member
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    corleone said:

    Have you asked about Immunotherapy?

    Before embarking on any of the options provided, ask first if you can have immunotherapy treatment with a FDA approved drug, or (even better) in a clinical trial setting. Nothing to lose if doesn't work (as it's not so toxic) but everything to gain if it does. 

    immunotherapy

    Thanks for answering back Corlene, my sister and i both have discussed this and are going to start calling monday for that and for maybe looking into protontherapy, heard about that too, but the immunotherapy sounded like something that would be exactly what we are looking for and will find out monday as much info as we can and all paperwork needed,Is this something they can do from your local doctor or do you need to travel to a different place to have this and a different doctor?

  • corleone
    corleone Member Posts: 312 Member
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    immunotherapy

    Thanks for answering back Corlene, my sister and i both have discussed this and are going to start calling monday for that and for maybe looking into protontherapy, heard about that too, but the immunotherapy sounded like something that would be exactly what we are looking for and will find out monday as much info as we can and all paperwork needed,Is this something they can do from your local doctor or do you need to travel to a different place to have this and a different doctor?

    This is usually an infusion

    This is usually an infusion done at an oncology center that can deal with some potential side effects (refer to a separate discussion on the forum https://csn.cancer.org/node/318210). If it's a FDA approved medication, I don’t know how things are working in terms of what your insurer covers (I am from Toronto, Canada, where things are different, this is covered at the provincial level). Of course, if it’s a trial, you don’t have to worry about costs, unless you have to travel to a different city where the trial is ongoing.

  • Story1945
    Story1945 Member Posts: 12
    edited October 2018 #5
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    My FIL has been through this

    My FIL has been through this (trach, feeding tube, no voice).  He's 73 and still kicking butt!

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Hey Catfish....

    phrannie here. I’ve been on Keytruda for 16 months after my 3rd recurrence.  I’ve had a bi*ch lymph node in my neck (we call her Griselda....ugly stepsister) who seems to resserect herself after two sets of rads, a neck dissection, and two cyroablations.  The cancer spread to my lungs. Now....16 months later....Griselda and I are still arm wrestling, but all the cancer in my lungs is gone. 

    So yes....Immunology is definitely an option to look into. I haven’t had any side effects at all

    p