Need experienced - SCC of tongue - help plz

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Rspaleta
Rspaleta Member Posts: 6
in Head and Neck Cancer #1

Hello all,

I was diagnosed with a t4 tumour in my tongue in October of 2019.  I was recommended to have a hemi glossectomy to remove a bit more than half of my tongue. this occurred in november of 2019. It was followed with 6 weeks of intensive radiation therapy Which ended at the end of January 2020.

now  unfortunatly, the cancer has spread to my remaining native tongue, despite docs saying they had removed with margin during the surgery.  It also means the cancer survived a fairly intense regimen of radiation.  So further radiation is off the table because 1. The side effects would be devastating this soon After and 2. the Cancer appears to be radio resistant.

i am now being recommended a Full glossectomy.  I hate the idea of removing my entire tongue, so I've asked for additional information from a medical oncologist re: chemo and immunotherapy.  I'm being told that neither of these treatments are curitive, but only extend life for a short period of time.  
Additionally in Canada, immunotherapy is not abailable as a first line treatment, only second line. 

is anyone aware of any new treatments for squamous cell carcinoma of the tongue as it pertains to immunotherapy or stem cell Therapy that could provide curative treatment as well as salvage the balance of my native tongue?  

 

any help/information/leads are appreciated. I'm running out of time, and I'm terrified at the prospect is losing my entire tongue.

 

warmest regards,

Raphael in Canada 

 

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,294 Member
    #2
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    Raphael I Think

    Your situation is probably unusual as with most cases the treatment you received would have eradicated it. I am not aware of any new treatments available I am sorry to say. I did some searching on the net and what I find is always the proven standard they use nowadays of surgery, chemo, and radiation. I have read on here that people that have a more severe problem with cancer or more complicated reach out to teaching hospitals or an advanced cancer center. I don't know if you have anything similar in your country. I will pray for you that you find an answer, a treatment that eradicates your cancer-Take Care-God Bless

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #3
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    Keep Looking Maybe

    What a tough position.  My heart goes out to you.  I totally agree about trying some teaching hospitals and universities.  Cannot hurt at all to call as many as seems reasonable.  Like WBC I thought the treatment you already had most times solves the issues.  So very sorry it did not in your case.  I do know that MD Anderson in Texas does some leading edge things so cannot hurt I can completely understand the fear of loss of one's tongue.  I cannot know  what I would do or how I would react. I do know I would find someone I trusted and talk it over carefully with them.  I hope you will keep in touch with us on here.  If there is anything you wish to share or ask please do.  I will be thinking about you and wishing you well.

    I clearly am not a doctor or even close.  Did you ask about any type of reconstructive tongue surgery or something even close to that?

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #4
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    Where in Canada are you? I

    Where in Canada are you? I was at the cancer center in Victoria and they were very good! All options open. The team I had, nurses, radiation oncologists,  medical oncologists,  chemo nurses, nutritionist,  speech therapist... all were above perfect! Hope you have a team as greart as s I did! 

  • Rspaleta
    Rspaleta Member Posts: 6
    edited April 2020 #5
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    debbiel0 said:

    Where in Canada are you? I

    Where in Canada are you? I was at the cancer center in Victoria and they were very good! All options open. The team I had, nurses, radiation oncologists,  medical oncologists,  chemo nurses, nutritionist,  speech therapist... all were above perfect! Hope you have a team as greart as s I did! 

    I'm near Toronto, but going

    I'm near Toronto, but going to the centre in London.  It's a reasonable team, just A bit disjointed, maybe partly because of the Coronavirus. it is a health sciences centre, so much like the teaching hospitals you're referring to. I think part of the issue is that I don't like the answers I'm getting, bit also, that there are less treatment options here than in US for examole.  Less approved drugs / immunotherapy, and none available for first Line.  I.e I'd have to do chemo first, despite the doctor telling me that it does not cure this type of cancer, let it fail first, and only then be allowed to join a trial / immunotherapy. My fear is by then i May have lost my chance to beat this thing.  

  • Rspaleta
    Rspaleta Member Posts: 6
    edited April 2020 #6
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    HobbsDoggy said:

    Keep Looking Maybe

    What a tough position.  My heart goes out to you.  I totally agree about trying some teaching hospitals and universities.  Cannot hurt at all to call as many as seems reasonable.  Like WBC I thought the treatment you already had most times solves the issues.  So very sorry it did not in your case.  I do know that MD Anderson in Texas does some leading edge things so cannot hurt I can completely understand the fear of loss of one's tongue.  I cannot know  what I would do or how I would react. I do know I would find someone I trusted and talk it over carefully with them.  I hope you will keep in touch with us on here.  If there is anything you wish to share or ask please do.  I will be thinking about you and wishing you well.

    I clearly am not a doctor or even close.  Did you ask about any type of reconstructive tongue surgery or something even close to that?

    As part of the glossectomy

    As part of the glossectomy they reconstruct a mass to replace your tongue. I'm trying to figure out also if I need to have the surgery, what the best type of reconstructive practices are out there for the best post operative outcomes for eating / swallowing / speaking.  

  • Rspaleta
    Rspaleta Member Posts: 6
    edited April 2020 #7
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    By the way

    All of your kind words warm my heart.  Thanks for the compassion.  It means a lot. 

  • catfish_58
    catfish_58 Member Posts: 138 Member
    #8
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    Clinical Trial

    I am at MD Anderson Houston,Texas, Taking a new Clinical Trial for my cancer, best thing is to get a second opinion as they wanted to remove my whole tongue and install a trach for life, decided to get a second opinion and am here now. I dont know the name of the clinical trial may want to look here https://medlineplus.gov/radiationtherapy.html under clinical trials and see if theree is anything. went through immunotherapy for over a year now and and it worked for a while but now i am here, Hope for all the best.

  • corleone
    corleone Member Posts: 312 Member
    #9
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    Rspaleta said:

    I'm near Toronto, but going

    I'm near Toronto, but going to the centre in London.  It's a reasonable team, just A bit disjointed, maybe partly because of the Coronavirus. it is a health sciences centre, so much like the teaching hospitals you're referring to. I think part of the issue is that I don't like the answers I'm getting, bit also, that there are less treatment options here than in US for examole.  Less approved drugs / immunotherapy, and none available for first Line.  I.e I'd have to do chemo first, despite the doctor telling me that it does not cure this type of cancer, let it fail first, and only then be allowed to join a trial / immunotherapy. My fear is by then i May have lost my chance to beat this thing.  

    Any chance you could get

    Any chance you could get referral for PMH in Toronto? I think this would be a better center, with more clinical trials, key opinion leaders, etc. I was treated there. I’m not saying it’s perfect, but I think they are more experienced.

  • Rspaleta
    Rspaleta Member Posts: 6
    edited April 2020 #10
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    corleone said:

    Any chance you could get

    Any chance you could get referral for PMH in Toronto? I think this would be a better center, with more clinical trials, key opinion leaders, etc. I was treated there. I’m not saying it’s perfect, but I think they are more experienced.

    Yes

    Actually my family physician did so over 2 weeks ago. I've followed up once already and have not heard back. Time is not on my side, but I figured its probably a better more progres centre and a good second opinion.  Good reminder to follow up again tomorrow !

  • Rspaleta
    Rspaleta Member Posts: 6
    edited April 2020 #11
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    catfish_58 said:

    Clinical Trial

    I am at MD Anderson Houston,Texas, Taking a new Clinical Trial for my cancer, best thing is to get a second opinion as they wanted to remove my whole tongue and install a trach for life, decided to get a second opinion and am here now. I dont know the name of the clinical trial may want to look here https://medlineplus.gov/radiationtherapy.html under clinical trials and see if theree is anything. went through immunotherapy for over a year now and and it worked for a while but now i am here, Hope for all the best.

    Hey!

    Thanks for the link.  I'll look at general trials.  I can't do radiation because I only just finished it 7 weeks ago, and this cancer appears to be radio resistant. 

  • catfish_58
    catfish_58 Member Posts: 138 Member
    #12
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    Rspaleta said:

    Hey!

    Thanks for the link.  I'll look at general trials.  I can't do radiation because I only just finished it 7 weeks ago, and this cancer appears to be radio resistant. 

    I'm not sure in your case, sorry to hear about that,may still ask for second opinion especially if not sure of current doctors advise. opened mind and positive thoughts,hope all goes well

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