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Oper8tor
Oper8tor Member Posts: 4
in Head and Neck Cancer #1

Just started treatment for metastatic liver,lung SCC. Diagnosed last year with HPV tonsil cancer, had surgery in January 2019 and 35 rounds of radiation ,no chemo as they said it would not benefit me so I decided not too do it after 2 opions. They took out 70 lymph nodes and 11 of them where dirty, but did not leave the node. Anyway here I am a year later with this disease in my lung and liver. Started imunotherapy last week, a trial of 3 drugs 3 one day a week and 1 drug once a week for they other 3 weeks.. Anybody out there with similar metastatic with some good outcomes. I’m only 51 and pretty healthy except for a bad back and a beat up throat ..would love to hear some good news...Happy Easter!

 

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  • wbcgaruss
    wbcgaruss Member Posts: 2,468 Member
    edited April 2020 #2
    Oper8tor Welcome

    To the Club that nobody really wants to be in and we are forced by our circumstances to be members. I do not share any similar circumstances with you exactly but did have throat cancer would be the closest thing but no metastasis thankfully. I just want to welcome you here and it will be interesting to see how your immunotherapy drug trials work out. I certainly hope it clears your cancer out and you come out NED. Again Welcome and I was wondering do you know the names of the trial drugs you are getting as I think a lot of folks on here would probably be interested in-Take Care-God Bless-OH and nice doggy you got there!

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    edited April 2020 #3
    Improved Treatments

    I am over 7 years out from my last treatment.  Even in that time the improvment in treatments is fanatstic.  Please let us know how you are doing and what treatment you are gertting.  We will be in your corner.

  • Oper8tor
    Oper8tor Member Posts: 4
    edited April 2020 #4
    Well thank you for the

    Well thank you for the welcome, I am new to the forum exeperience and still trying to figure out how to navigate, The trial drugs are Monalizumab, Cetuximab and Duvalumab, I do those drugs all together once a month and the cetuximab weekly , I’m only on week 3 so it’s still pretty new, it’s a second phase trial in NYC at one of the big hospitals , had a second opion  from another rock star oncologist from NYC,and was kinda advised the trial would probably be a better fit for me,and would also keep my options open in case these drugs don’t work, I’m more or less curious to hear from others who have had SCC , liver,lung metastasis , ( although grateful for all responses ). My original cancer was HPV16 and I don’t hear a lot of it making its way to the liver but I’m sure there out there. Is this ever going to go away? Radiation oncologist didn’t really have a lot of good things to say but what do they no,! Haven’t asked my current oncologist out right (kinda don’t want his answer ) looking for another survivor!! Anyway, feel good now and pretty happy even being pumped with all this stuff ,,Enjoying time off from work and taking long hikes with the dog.. and she’s very happy!

  • Pclark21st
    Pclark21st Member Posts: 126
    #5
    Weve had mets to lung and

    Weve had mets to lung and chest...not liver yet.  Been a bumpy ride but were getting through it.  Good luck with the trial

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #6
    Other Sections and Other Boards

    You might try other discussion rooms and other web sites.  There are a lot of good legitimate sites around that have discussion boards that might be a lot closer to your individual case.  I did use a cancer support group at the place i got treatment and it was a big help.  I don't suppose they are meeting in person now with the virus thing, but maybe online or something.  We need all the support we can get.  Sounds like you have a great oncologist, hang onto him/her.  I found most radiation oncologists to be fairly pessimistic, maybe its the job.  Do keep us informed we are pulling for you.

  • ERomanO
    ERomanO Member Posts: 323 Member
    #7
    Welcome to the forum

    Oper8tor, sorry to hear about the metastisis and I wish you great success with the imunotherapy.  Please keep us in the loop as you go.

  • Pclark21st
    Pclark21st Member Posts: 126
    edited April 2020 #8
    Are you on Facebook...they

    Are you on Facebook...they have a couple of pages that are pretty good with people having many kinds of mets and DX.

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited April 2020 #9
    Pclark,

    My time frame for treatments were the same as yours. It's got to be rough to have to "get back in the ring"...

    I'm very sorry to hear about your challenges, and I wish you the best possible outcome, with your treatments!

    mg

  • Pclark21st
    Pclark21st Member Posts: 126
    edited April 2020 #10
    motorcycleguy said:

    Pclark,

    My time frame for treatments were the same as yours. It's got to be rough to have to "get back in the ring"...

    I'm very sorry to hear about your challenges, and I wish you the best possible outcome, with your treatments!

    mg

    My BF actually has the cancer

    My BF actually has the cancer...I'm just an observer.  Sorry to hear you are on the same path.  It is hard for him to keep fighting all the time.  He could sure use a break.  Good luck to you

  • TangoWhiskey
    TangoWhiskey Member Posts: 9
    edited April 2020 #11
    HELL0, I'M A NEWBIE RECOVERING FROM TONGUE CANCER

    I finished 35 radiation treatments and five chemotherapy treatments 6 weeks ago. I was diagnosed with Stage 2 Squamus Cell Carcinoma HPV.

    No taste buds right now. Everything is metallic tasting and I can eat nothing. I have been able to gain nourishment from Boost and Ensure mixed with some strawberry ice cream. Not great but at least I can get it down. From various websites I have found that my taste should be back in 3 weeks to never! 

    I know everyone is different but would appreciate any insights or hints on how to deal with this.

    My strength and energy are slowly returning and my doctors say that I am doing extremely well for someone only six weeks post treatment. I was originally 270 pounds on my 6'3" frame and am now 235 which has allowed me to get off blood pressure meds. I'm normal again. Also my diabetes has leveled off and my AIC is at 5.9. So the benefits have also been notable. Sometimes your have to look at the bright side!

    I certainly don't recommend the radiation and chemo diet to improve your health though.

    Anyone out there with any advice, tips or helpful hints is appreciated.

    Stay healthy all of you!

  • Oper8tor
    Oper8tor Member Posts: 4
    edited May 2020 #12
    Welcome Tango Whiskey

    Best i can tell you is hang in there, I got extremely discouraged more then once in my recovery, but taste and dry mouth will get better eventually I'm kinda like you 6'5" was 250 and withered away to 180, but now I'm up to 210. This is a good wieght for me as 250 was little heavy.. Anyway I didn't do chemo so my path has been a little different, and the rest of my story is not that great so I'll spare you. But hang in there and enjoy the spring and what ever food still gives you a little pleasure.. I do remember calling the rad doctor more then once to complain and there's not much they can do so good luck with that, after our mouths and throats go through that trauma I guess we should be happy with what where left with.. as some pepole have it alot worse.. I hope this was helpful stay strong..

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    edited May 2020 #13
    Taste and Dry

    I had radiation on neck so not exactly the same but taste lost for about 3 months.  At first I had no taste sensation at all.  Then about a month later has the first slight taste.  it slowly came back. After about three months I had about 50%.  At about a 1 year I had about 70% and it stayed there which is enough.  Dry mouth comes an goes.  Hang in there.

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