confused

rkiki
rkiki Member Posts: 5
edited March 2014 in Head and Neck Cancer #1
my husband's oncologist just referred us to a clinical trial because he has exhausted all possible chemotherapy for his stage 4 squamous cell neck cancer.I believe there is hope out there.Is there someone out there who can verify this for me?I'm really confused and stressed out.

Comments

  • SmithMama2
    SmithMama2 Member Posts: 48
    #2
    clinical trials
    Dear Rkiki,

    What state do you live in? We are in Atlanta, GA and there are many clinical trials at the Winship Cancer Institute, part of Emory Hospital. My good friend had a devistatingly grim prognosis with breast cancer last year, so they put her on a clinical trial here at Winship, and now she is cancer free. So I think pretty highly of those trials.

    Has your husband had chemo treatments before? Radiation too?

    If you live remotely, I think some hospitals just haven't seen every kind of cancer to know exactly how to treat it. This board is a good place to find out more info to ask questions of your doctors.

    My husband also has stage 4 squamous cell carcinoma, primary located on the base of tongue with neck lymph nodes affected as well. He started with cisplatin given every 3 weeks, but after one chemo treatment, he started to lose his hearing some. They then switched him to carboplatin and taxol chemo every week for 5 more weeks. He simultaneously had 35 rounds of radiation every day (except weekends--cancer doesn't grow on weekends!!!) He is 11 days past treatment now, so we still have rough days ahead, but we are keeping the hope that this too shall pass! The PET and CT scans in early December will tell us if it really has.

    Sending prayers to you and your husband!
    Karen
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    SmithMama2 said:

    clinical trials
    Dear Rkiki,

    What state do you live in? We are in Atlanta, GA and there are many clinical trials at the Winship Cancer Institute, part of Emory Hospital. My good friend had a devistatingly grim prognosis with breast cancer last year, so they put her on a clinical trial here at Winship, and now she is cancer free. So I think pretty highly of those trials.

    Has your husband had chemo treatments before? Radiation too?

    If you live remotely, I think some hospitals just haven't seen every kind of cancer to know exactly how to treat it. This board is a good place to find out more info to ask questions of your doctors.

    My husband also has stage 4 squamous cell carcinoma, primary located on the base of tongue with neck lymph nodes affected as well. He started with cisplatin given every 3 weeks, but after one chemo treatment, he started to lose his hearing some. They then switched him to carboplatin and taxol chemo every week for 5 more weeks. He simultaneously had 35 rounds of radiation every day (except weekends--cancer doesn't grow on weekends!!!) He is 11 days past treatment now, so we still have rough days ahead, but we are keeping the hope that this too shall pass! The PET and CT scans in early December will tell us if it really has.

    Sending prayers to you and your husband!
    Karen

    stage 4 is pretty typical
    I'm a little confused too. It dosen't take much with this cancer to reach stage 4 and its treated all the time with sucess. Is there something else going on, perhaps he is not responing to treatment or is this a recurrence? If all you've tried is chemotherapy I'd run away from that Oncologist. There is radiation, robotic surgery, brachytherapy, surgery, cyberknife radiation, and probably some clinical trials I don;t know about. Tell us more about the primary site and what treatment he has already had and maybe we can offer some other path.
  • rkiki
    rkiki Member Posts: 5
    #4
    SmithMama2 said:

    clinical trials
    Dear Rkiki,

    What state do you live in? We are in Atlanta, GA and there are many clinical trials at the Winship Cancer Institute, part of Emory Hospital. My good friend had a devistatingly grim prognosis with breast cancer last year, so they put her on a clinical trial here at Winship, and now she is cancer free. So I think pretty highly of those trials.

    Has your husband had chemo treatments before? Radiation too?

    If you live remotely, I think some hospitals just haven't seen every kind of cancer to know exactly how to treat it. This board is a good place to find out more info to ask questions of your doctors.

    My husband also has stage 4 squamous cell carcinoma, primary located on the base of tongue with neck lymph nodes affected as well. He started with cisplatin given every 3 weeks, but after one chemo treatment, he started to lose his hearing some. They then switched him to carboplatin and taxol chemo every week for 5 more weeks. He simultaneously had 35 rounds of radiation every day (except weekends--cancer doesn't grow on weekends!!!) He is 11 days past treatment now, so we still have rough days ahead, but we are keeping the hope that this too shall pass! The PET and CT scans in early December will tell us if it really has.

    Sending prayers to you and your husband!
    Karen

    clinical trials
    Thank you so much Karen for your kind words and encouragement.We live in Newark, De at the present time and the oncologist is referring us to a cancer center in Philadelphia.My husband did go through radiation to his neck last summer.Five days a week with the exemption of weekends.I guess I'm not the only one who thought it funny not to get it on the weekends.I guess the cancer stops on Fridays!The last chemotherapy,Navelbine was ineffective and instead the spots in his liver increased spreading to the spleen.He's only 35yrs and just celebrated his birthday.It's not the first time the doctors have thought that there were no more options.We are keeping strong and I'm so glad to hear from someone like me.
    Thank you again.Will keep your husband and your family in my prayers.
    Kki
  • SmithMama2
    SmithMama2 Member Posts: 48
    #5
    rkiki said:

    clinical trials
    Thank you so much Karen for your kind words and encouragement.We live in Newark, De at the present time and the oncologist is referring us to a cancer center in Philadelphia.My husband did go through radiation to his neck last summer.Five days a week with the exemption of weekends.I guess I'm not the only one who thought it funny not to get it on the weekends.I guess the cancer stops on Fridays!The last chemotherapy,Navelbine was ineffective and instead the spots in his liver increased spreading to the spleen.He's only 35yrs and just celebrated his birthday.It's not the first time the doctors have thought that there were no more options.We are keeping strong and I'm so glad to hear from someone like me.
    Thank you again.Will keep your husband and your family in my prayers.
    Kki

    keep us posted
    Dear Kki,
    Keep us posted about your meeting with docs in Philadelphia. Hopefully you won't have to wait too long to get an appointment. Surely they will have options that your current oncologist doesn't have, and that could really make a difference in beating this cancer. I will hold hope that this will be a gift to be with new doctors.

    I would give you a hug if you were near. This stuff is so hard, isn't it?!?
    Karen
  • rkiki
    rkiki Member Posts: 5
    #6
    ratface said:

    stage 4 is pretty typical
    I'm a little confused too. It dosen't take much with this cancer to reach stage 4 and its treated all the time with sucess. Is there something else going on, perhaps he is not responing to treatment or is this a recurrence? If all you've tried is chemotherapy I'd run away from that Oncologist. There is radiation, robotic surgery, brachytherapy, surgery, cyberknife radiation, and probably some clinical trials I don;t know about. Tell us more about the primary site and what treatment he has already had and maybe we can offer some other path.

    more details
    The cancer started in his neck and took the doctors 3 months before figuring out it was cancer.By then, he had lost so much weight and that is when they staged it at stage 4 with mets to his bones, lungs, kidneys and liver.He has undergone chemotherapy for 2yrs now and just last summer is when his oncologist decided to go with radiation to his neck for about three months.According to the last scans the cancer was present in his liver, the spots there increasing and spread to his spleen.I researched on my own and found out there is target radiation that can be done, and yet the oncologist pushed the idea away when I suggested it.He has had several chemo therapy, some that just sounded like foreign language to my ears.Now that I'm a nurse i understand them more.The last being Arbotex (unsure about spelling) and Navelbine.Now the oncologist is referring us to a clinical trial.I'm actually planning on getting a second opinion from a different cancer center.I live close to Philadelphia.Any ideas?
  • rkiki
    rkiki Member Posts: 5
    #7
    SmithMama2 said:

    keep us posted
    Dear Kki,
    Keep us posted about your meeting with docs in Philadelphia. Hopefully you won't have to wait too long to get an appointment. Surely they will have options that your current oncologist doesn't have, and that could really make a difference in beating this cancer. I will hold hope that this will be a gift to be with new doctors.

    I would give you a hug if you were near. This stuff is so hard, isn't it?!?
    Karen

    the truth
    Yes Karen!But God has granted us the strength and courage.Sometimes I feel like no one understands.It's such a blessing to meet you.I'm sending you a hug since we are so far apart.
    Thank you again.
    Kiki
  • ratface
    ratface Member Posts: 1,337 Member
    #8
    rkiki said:

    the truth
    Yes Karen!But God has granted us the strength and courage.Sometimes I feel like no one understands.It's such a blessing to meet you.I'm sending you a hug since we are so far apart.
    Thank you again.
    Kiki

    Have you been to the OCF website?
    Don't know if you've ben here
    http://oralcancersupport.org/forums/ubbthreads.php?ubb=cfrm,

    but these folks have seen it all. There are probably several members there with the same diagnosis and may even be able to point you to clinical trials. Thats the oral cancer foundation website, much more active than this one and full of information.

    Post on their forumn and someone there has been or is going through it. good luck!
  • delnative
    delnative Member Posts: 450 Member
    #9
    rkiki said:

    clinical trials
    Thank you so much Karen for your kind words and encouragement.We live in Newark, De at the present time and the oncologist is referring us to a cancer center in Philadelphia.My husband did go through radiation to his neck last summer.Five days a week with the exemption of weekends.I guess I'm not the only one who thought it funny not to get it on the weekends.I guess the cancer stops on Fridays!The last chemotherapy,Navelbine was ineffective and instead the spots in his liver increased spreading to the spleen.He's only 35yrs and just celebrated his birthday.It's not the first time the doctors have thought that there were no more options.We are keeping strong and I'm so glad to hear from someone like me.
    Thank you again.Will keep your husband and your family in my prayers.
    Kki

    Hey, Kiki
    I see you're in Newark, Del. (where I went to school). I live west of Dover, where I was born and raised -- so not all your friends here are so far away.
    I'm sure you're exploring all the options available, but I can vouch for the people at Johns Hopkins. That's where I was treated for my Stage III tonsil cancer, and it's a phenomenal place that does a lot of research into head and neck cancers. I know they participate in clinical trials, and it's not all that far from Newark (though the trip and the toll down I-95 are a pain in the butt. Me, I go over the Bay Bridge instead, but I'm a lot farther south than you.)
    You and your husband will be in my prayers.

    --Jim in Delaware
  • rkiki
    rkiki Member Posts: 5
    #10
    delnative said:

    Hey, Kiki
    I see you're in Newark, Del. (where I went to school). I live west of Dover, where I was born and raised -- so not all your friends here are so far away.
    I'm sure you're exploring all the options available, but I can vouch for the people at Johns Hopkins. That's where I was treated for my Stage III tonsil cancer, and it's a phenomenal place that does a lot of research into head and neck cancers. I know they participate in clinical trials, and it's not all that far from Newark (though the trip and the toll down I-95 are a pain in the butt. Me, I go over the Bay Bridge instead, but I'm a lot farther south than you.)
    You and your husband will be in my prayers.

    --Jim in Delaware

    update
    We have an appointment 11/03/09 at Penn State in Philadelphia.Traffic on I-95 can be quit a pain.We are also thinking on looking into John Hopkins.
    Thank you for the support.
    you and you r family are in my prayers.

Discussion Boards