STAGE 4B BASE OF TONGUE SQUAMOUS CELL CARCINOMA

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DML7
DML7 Member Posts: 3
in Head and Neck Cancer #1
My dad was recently diagnosed with Stage 4b base of tongue squamous cell carcinoma. It has spread to his lymph nodes, and he has an 8cm (and growing) mass in the left side of his neck. We also just found out that the mass is leaking and has spread to the tissue in his neck; it looks like the spread is currently contained in his neck. Last night he started spitting up blood. As he's past the point of surgery, the doctors suggested he begin a trial of an experimental form of chemo before his actual chemo&radiation begins next week. My question is, they've given him a 40% survival rate. From what I've described, does anyone have feedback? I'm concerned about the cancer spreading through the tissue in his neck, and the spitting up blood. I'm confused as to why they doctors would chance a never before used trial of chemo. Is this beneficial to him??? Seems too risky to me. Does anyone have experience with the cancer spreading to this extent? I feel this stage of cancer is normalized for the medical professionals due to their daily exposure, so I'm not getting a good read on whether or not his prognosis is curable or palliative at this point. They've only stated some people survive this stage, and many others do not.....

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  • Fire34
    Fire34 Member Posts: 365
    #2
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    Clinicla Trial Here
    DM
    I wouldn't call my chemo experimental though. I had 8 weeks on induction chemo at U of Chicago, before I started my radiation. My induction consisted of Erbitux, & Taxol. My stage was 4B HPV+ with unknown primary. Meaning they did not have a clue where it started from. U of Chicago gave us(my wife& I) a choice of the trial or not, I am surprised this Hospital is not giving you the same choice. Do you know the name of the experimental chemo?
    Has your dad seen an ENT doctor and had a scope to find out where the blood is coming from? I am sure it is coming from the size of the tumor. The radiation/chemo is it concurrent(at the same time)?
    How old is your dad? I wouldn't let the 40% thing worry you though. It does take a positive attitude on the patients part and a caring loved one like yourself to help them get thru it.
    wishes & prayers in your decision
    Dave
  • DML7
    DML7 Member Posts: 3
    #3
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    Fire34 said:

    Clinicla Trial Here
    DM
    I wouldn't call my chemo experimental though. I had 8 weeks on induction chemo at U of Chicago, before I started my radiation. My induction consisted of Erbitux, & Taxol. My stage was 4B HPV+ with unknown primary. Meaning they did not have a clue where it started from. U of Chicago gave us(my wife& I) a choice of the trial or not, I am surprised this Hospital is not giving you the same choice. Do you know the name of the experimental chemo?
    Has your dad seen an ENT doctor and had a scope to find out where the blood is coming from? I am sure it is coming from the size of the tumor. The radiation/chemo is it concurrent(at the same time)?
    How old is your dad? I wouldn't let the 40% thing worry you though. It does take a positive attitude on the patients part and a caring loved one like yourself to help them get thru it.
    wishes & prayers in your decision
    Dave

    Chemo trial
    The trial chemo is called: CUDC-101. The regular chemo will be Cisplatin. My dad is 58y/o. He's heading in tomorrow for the trial chemo. They told him via phone that the blood is coming from the tumor, and to call 911 if if gets worse. If not, he'll follow-up with them tomorrow. They did give him a choice regarding the trial chemo; however, I'm wondering if there are any negatives to choosing to participate. The radiation and chemo are concurrent. I'm brig really supportive and positive in my dad's presence. He is an old school Italian, and his world revolves around eating&drinking. I'm petrified he's going to give up. He could barely manage the pain from the tongue biopsy they took. What is the greatest predictor of outcome? Is there a way to tell when this cancer is terminal, and when it is not? Thank you so much.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #4
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    DML7 said:

    Chemo trial
    The trial chemo is called: CUDC-101. The regular chemo will be Cisplatin. My dad is 58y/o. He's heading in tomorrow for the trial chemo. They told him via phone that the blood is coming from the tumor, and to call 911 if if gets worse. If not, he'll follow-up with them tomorrow. They did give him a choice regarding the trial chemo; however, I'm wondering if there are any negatives to choosing to participate. The radiation and chemo are concurrent. I'm brig really supportive and positive in my dad's presence. He is an old school Italian, and his world revolves around eating&drinking. I'm petrified he's going to give up. He could barely manage the pain from the tongue biopsy they took. What is the greatest predictor of outcome? Is there a way to tell when this cancer is terminal, and when it is not? Thank you so much.

    Hi DML7...
    First of all...sorry you had to find this group ...2nd...you found a GREAT group. I am sure others will respond soon.

    I don't have answers for what you seek...but I will tell you I am 49 was stage III base of tongue with 1 lymph node cancerous (obviously I konw I am not as advanced as your father is). I only had radiatoin and Erbitux for my treatments (Erbitux is not a platninum based chemo drug). No surgery and I got a good PET / CT scan 3 months after my last radiation. My SCC was HPV +. Do you know if your dad's cancer is HPV+?

    One site you can go to with a wealth of information (other than here of course) is the oral cancer foundation .org www.oralcancerfoundation.org They deal specifically with head and neck cancers.

    Prayers for you and your father and please keep us posted. This group cares!!

    Best,

    Tim
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
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    DML7 said:

    Chemo trial
    The trial chemo is called: CUDC-101. The regular chemo will be Cisplatin. My dad is 58y/o. He's heading in tomorrow for the trial chemo. They told him via phone that the blood is coming from the tumor, and to call 911 if if gets worse. If not, he'll follow-up with them tomorrow. They did give him a choice regarding the trial chemo; however, I'm wondering if there are any negatives to choosing to participate. The radiation and chemo are concurrent. I'm brig really supportive and positive in my dad's presence. He is an old school Italian, and his world revolves around eating&drinking. I'm petrified he's going to give up. He could barely manage the pain from the tongue biopsy they took. What is the greatest predictor of outcome? Is there a way to tell when this cancer is terminal, and when it is not? Thank you so much.

    here is a link
    to the NIH study protocal on CUDC101. Cisplatin is one of the gold standards for this disease. The addition of CUDC 101 is, in theory, likely to be beneficial. Other drugs in the same general class have been shown to be. The treatment of this disease is a process. There isnt a single predictor of outcome. This is obviously a bad situation for him, and the treatments are going to be pretty rough. There is no getting around this. He needs to get his mind firmly around this and jump in. As you participate more in this board you will see that many, if not all of us have come from tough situations. We are all still here talking about it. My best to you and your father.

    http://clinicaltrials.gov/ct2/show/NCT01384799


    Pat
  • DML7
    DML7 Member Posts: 3
    #6
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    Tim6003 said:

    Hi DML7...
    First of all...sorry you had to find this group ...2nd...you found a GREAT group. I am sure others will respond soon.

    I don't have answers for what you seek...but I will tell you I am 49 was stage III base of tongue with 1 lymph node cancerous (obviously I konw I am not as advanced as your father is). I only had radiatoin and Erbitux for my treatments (Erbitux is not a platninum based chemo drug). No surgery and I got a good PET / CT scan 3 months after my last radiation. My SCC was HPV +. Do you know if your dad's cancer is HPV+?

    One site you can go to with a wealth of information (other than here of course) is the oral cancer foundation .org www.oralcancerfoundation.org They deal specifically with head and neck cancers.

    Prayers for you and your father and please keep us posted. This group cares!!

    Best,

    Tim

    Yes, he is HPV+ (which would
    Yes, he is HPV+ (which would typically be a good thing); however, he unfortunately smoked 2-3 packs of cigarettes for over 30years, which his doctors say bring his prognosis back down to 40% survival rate, versus the 80-90% a typical HPV+ cancer patient would have. Thank you SO much for the information and support thus far!

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