Just Found Out

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Comments

  • Ron49
    Ron49 Member Posts: 91
    #42
    josh r. said:

    Awesome!!!
    Hi Charles,
    I agree that my good forture, longevity after treament, is awesome. My ent wanted to do surgery but my onc-hemotologist strongly suggested a relatively, at that time, rad-chemo combination of high intensity. So far so good. Second and third opinions are so important even if you end up back at the original suggestion. At least you feel involved in your future. I am so glad that I ran across csn to possibly give hope and encouragement to brothers and sisters that are going through what I've been through. As trite as it sounds you have got to picture the soldiers that are being pumped into you and "lazer beams" they are shooting into you are kicking butt on the bad guys. I still visualize it and believe it. Never give up and God Bless, josh r.

    Hey Josh,
    Thanks for sharing
    Hey Josh,

    Thanks for sharing and it is so encouraging to hear stories like yours. I just went for a 2nd opinion today (which was a result of all of my friends here) and the Dr I saw today was simply awesome (thanks David S). One of our friends at CSN is the reason I knew of this Dr. and was able to get to see him. I had a 2nd biopsy, scheduled for a PET and will have my tonsils taken out next Monday. All of this happened today! Also if PET indicates any spots a biopsy will be done while I am having my tonsils removed. I have had the lump for about 5 months and only found out it was cancer this month. I am really beginning to feel based on everything I have read here that surgery or neck dissection may not be the best option for me. I am hopeful the radiation and chemo will help me. I don't even know what I am saying as I can't imagine what I am in for. My wife and I are scared to death but just want to get ahold of this asap. God Bless you and I hope you have 20 more!!
    Ron
  • Ron49
    Ron49 Member Posts: 91
    #43
    josh r. said:

    Awesome!!!
    Hi Charles,
    I agree that my good forture, longevity after treament, is awesome. My ent wanted to do surgery but my onc-hemotologist strongly suggested a relatively, at that time, rad-chemo combination of high intensity. So far so good. Second and third opinions are so important even if you end up back at the original suggestion. At least you feel involved in your future. I am so glad that I ran across csn to possibly give hope and encouragement to brothers and sisters that are going through what I've been through. As trite as it sounds you have got to picture the soldiers that are being pumped into you and "lazer beams" they are shooting into you are kicking butt on the bad guys. I still visualize it and believe it. Never give up and God Bless, josh r.

    Hey Josh,Thanks for sharing
    Hey Josh,

    Thanks for sharing and it is so encouraging to hear stories like yours. I just went for a 2nd opinion today (which was a result of all of my friends here) and the Dr I saw today was simply awesome (thanks David S). One of our friends at CSN is the reason I knew of this Dr. and was able to get to see him. I had a 2nd biopsy, scheduled for a PET and will have my tonsils taken out next Monday. All of this happened today! Also if PET indicates any spots a biopsy will be done while I am having my tonsils removed. I have had the lump for about 5 months and only found out it was cancer this month. I am really beginning to feel based on everything I have read here that surgery or neck dissection may not be the best option for me. I am hopeful the radiation and chemo will help me. I don't even know what I am saying as I can't imagine what I am in for. My wife and I are scared to death but just want to get ahold of this asap. God Bless you and I hope you have 20 more!!
    Ron
  • rozaroo
    rozaroo Member Posts: 665
    #44
    Ron49 said:

    Hey Josh,
    Thanks for sharing
    Hey Josh,

    Thanks for sharing and it is so encouraging to hear stories like yours. I just went for a 2nd opinion today (which was a result of all of my friends here) and the Dr I saw today was simply awesome (thanks David S). One of our friends at CSN is the reason I knew of this Dr. and was able to get to see him. I had a 2nd biopsy, scheduled for a PET and will have my tonsils taken out next Monday. All of this happened today! Also if PET indicates any spots a biopsy will be done while I am having my tonsils removed. I have had the lump for about 5 months and only found out it was cancer this month. I am really beginning to feel based on everything I have read here that surgery or neck dissection may not be the best option for me. I am hopeful the radiation and chemo will help me. I don't even know what I am saying as I can't imagine what I am in for. My wife and I are scared to death but just want to get ahold of this asap. God Bless you and I hope you have 20 more!!
    Ron

    Ron
    I wish you my best on your upcoming treatment. It will be my one year mark on January 15th.
    So far so good! Remember to eat a ton now & drink or sip water constantly. I had a feeding
    tube put in before treatment started & had to use it at the end of radiation for about six month's. I actually gained weight while on it. We are all different, but we all can offer our support & suggestion's.Take from it what work's best for you.
    God Bless
    Roz
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #45
    Ron49 said:

    Hey Josh,
    Thanks for sharing
    Hey Josh,

    Thanks for sharing and it is so encouraging to hear stories like yours. I just went for a 2nd opinion today (which was a result of all of my friends here) and the Dr I saw today was simply awesome (thanks David S). One of our friends at CSN is the reason I knew of this Dr. and was able to get to see him. I had a 2nd biopsy, scheduled for a PET and will have my tonsils taken out next Monday. All of this happened today! Also if PET indicates any spots a biopsy will be done while I am having my tonsils removed. I have had the lump for about 5 months and only found out it was cancer this month. I am really beginning to feel based on everything I have read here that surgery or neck dissection may not be the best option for me. I am hopeful the radiation and chemo will help me. I don't even know what I am saying as I can't imagine what I am in for. My wife and I are scared to death but just want to get ahold of this asap. God Bless you and I hope you have 20 more!!
    Ron

    Very Similar Still
    Hi Ron,

    You are still very similar to my treatment and now even the time line.

    I had my tonsils out on the first Monday of 2009....

    I also had the lump, although not as long, mine popped up about a month before I saw the ENT, but I had seen my GP, whom didn't have a clue...he kept giving me antibiotics....best thing he ever did for me was to schedule me and get me in contact with my ENT.

    My ENT is awesome, I basically had a team all within the same organization. My ENT was and still is the main MD in charge. He was/is very proactive, HPV was the first thing he suspected given the conditions, symptoms and family history of no smoking. He also opted not to have the dissection unless as a last result of the chemo or radiation not having his expected result. His call on that was spot on also. It was completely gone by my third round of chemo, and confirmed with a CT between the chemo an concurrnt chemo/rads.

    Glad you are on the ball, comfortable with your new MD and getting started.

    If there s anything I can do or questions, whatever shoot me a PM, or ask anyone here, there are many awesome people on here...we've all pretty much went through, or are going through most anything you'll encounter.

    Best,
    John
  • DrMary
    DrMary Member Posts: 531 Member
    #46
    Skiffin16 said:

    Very Similar Still
    Hi Ron,

    You are still very similar to my treatment and now even the time line.

    I had my tonsils out on the first Monday of 2009....

    I also had the lump, although not as long, mine popped up about a month before I saw the ENT, but I had seen my GP, whom didn't have a clue...he kept giving me antibiotics....best thing he ever did for me was to schedule me and get me in contact with my ENT.

    My ENT is awesome, I basically had a team all within the same organization. My ENT was and still is the main MD in charge. He was/is very proactive, HPV was the first thing he suspected given the conditions, symptoms and family history of no smoking. He also opted not to have the dissection unless as a last result of the chemo or radiation not having his expected result. His call on that was spot on also. It was completely gone by my third round of chemo, and confirmed with a CT between the chemo an concurrnt chemo/rads.

    Glad you are on the ball, comfortable with your new MD and getting started.

    If there s anything I can do or questions, whatever shoot me a PM, or ask anyone here, there are many awesome people on here...we've all pretty much went through, or are going through most anything you'll encounter.

    Best,
    John

    No neck dissection ever?
    John, Doug is at the point in between finishing radiation/chemo and getting the CT to check. Like you, he had HPV-caused cancer in his tonsil and it had spread to a lymph node in his neck. The ENT waited on the neck dissection after getting the tonsil with a clean margin and the lymph node shrank 75-90% with treatment. The rad and chemo guys are fairly sure the remainder is dead tissue and are expecting it to be confirmed with the CT.

    HOWEVER, the team seem to be expecting that the ENT will still want to pop that node and surrounding nodes out to check anyway, based on their experience with him. Doug will be seeing the ENT in a few weeks, but I'm wondering if yours had discussed this option.

    On the one hand, it would be nice to know the cancer's really gone. On the other hand, I hate to get lymph nodes stripped out of Doug's neck. In the end, you still need to trust your doctor, but I'd like to hear others' experiences.
  • UWSNYC
    UWSNYC Member Posts: 11
    #47
    DrMary said:

    No neck dissection ever?
    John, Doug is at the point in between finishing radiation/chemo and getting the CT to check. Like you, he had HPV-caused cancer in his tonsil and it had spread to a lymph node in his neck. The ENT waited on the neck dissection after getting the tonsil with a clean margin and the lymph node shrank 75-90% with treatment. The rad and chemo guys are fairly sure the remainder is dead tissue and are expecting it to be confirmed with the CT.

    HOWEVER, the team seem to be expecting that the ENT will still want to pop that node and surrounding nodes out to check anyway, based on their experience with him. Doug will be seeing the ENT in a few weeks, but I'm wondering if yours had discussed this option.

    On the one hand, it would be nice to know the cancer's really gone. On the other hand, I hate to get lymph nodes stripped out of Doug's neck. In the end, you still need to trust your doctor, but I'd like to hear others' experiences.

    Neck Dissection
    I had base of tongue cancer that spread to my right lymph node. My ENT did not want to do surgery. His recommendation was to do it at the back end, if needed. My treatment consisted of 3 rounds of docetaxel and carboplatin over 9 weeks, followed by 35 rads with weekly cisplatin. I ended treatment early May, 2010. My first CAT and PET scans in August were clear. My second scans done last week were also clear.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #48
    DrMary said:

    No neck dissection ever?
    John, Doug is at the point in between finishing radiation/chemo and getting the CT to check. Like you, he had HPV-caused cancer in his tonsil and it had spread to a lymph node in his neck. The ENT waited on the neck dissection after getting the tonsil with a clean margin and the lymph node shrank 75-90% with treatment. The rad and chemo guys are fairly sure the remainder is dead tissue and are expecting it to be confirmed with the CT.

    HOWEVER, the team seem to be expecting that the ENT will still want to pop that node and surrounding nodes out to check anyway, based on their experience with him. Doug will be seeing the ENT in a few weeks, but I'm wondering if yours had discussed this option.

    On the one hand, it would be nice to know the cancer's really gone. On the other hand, I hate to get lymph nodes stripped out of Doug's neck. In the end, you still need to trust your doctor, but I'd like to hear others' experiences.

    DM Nothing Planned
    DM, any neck dissection or surgery had always been dependant upon the tumor either not going away, or other depris remianing or suspect after the nine weeks or Cisplatin, Taxotere, and 5FU, followed with the seven weeks of concurrent Carboplatin/daily radiation....

    The initial feelings were because of the location and size of the tumor. Any surgery that close to the carotid artery would be pretty invasive. With the scheduled chemo and concurrent, the hopes would be either the tumor would shrink, being less complicated and invasive or be gone all together, which is what happened.

    Similar to UWSNYC, they scheduled me for a CT between the end of the nine weeks and beginning of the seven weeks (because the tumor was noticeably smaller between the 2 - 3rd round of chemo, and undetectable by touch after the 3rd round). The CT images confirmed the tumor was completely gone, with nothing remaining.

    I've had two post PET scans since then and at least two or three post CT scans. I'm now 18+ post treatment, and continue to have clean scans and NED.

    Best,
    John
  • josh r.
    josh r. Member Posts: 264 Member
    #49
    Ron49 said:

    Hey Josh,
    Thanks for sharing
    Hey Josh,

    Thanks for sharing and it is so encouraging to hear stories like yours. I just went for a 2nd opinion today (which was a result of all of my friends here) and the Dr I saw today was simply awesome (thanks David S). One of our friends at CSN is the reason I knew of this Dr. and was able to get to see him. I had a 2nd biopsy, scheduled for a PET and will have my tonsils taken out next Monday. All of this happened today! Also if PET indicates any spots a biopsy will be done while I am having my tonsils removed. I have had the lump for about 5 months and only found out it was cancer this month. I am really beginning to feel based on everything I have read here that surgery or neck dissection may not be the best option for me. I am hopeful the radiation and chemo will help me. I don't even know what I am saying as I can't imagine what I am in for. My wife and I are scared to death but just want to get ahold of this asap. God Bless you and I hope you have 20 more!!
    Ron

    Happy if I helped
    Hi Ron,

    You are doing all the right moves with your medical staff and wife. Together you will choose the right treatment for you. As to what you're saying it is very much how many of us felt before the whistle was blown and the game actually started. My wife of one year
    at that time in 1991,(20 years this April God willing) and I cried out for asap like you and your wife are. Then boom! It happened like it will for you when your "team" has your game plan all set and in place for your successful treatment. We too wish you and yours another 20 plus years. Keep believing and trust in your Higher Power. Josh r.
  • caspercamp
    caspercamp Member Posts: 7
    #50
    Club "Membership"
    Ron,
    Sorry to say it but, "Welcome to the Club." You've found this site early. What a blessing. I sure could've used this a few months ago. My diagnosis was very similar to yours. SCC found in my right tonsil after a swollen lymph node was biopsied. Dignosed on May 26th, last year. Stage IV. Lost a tonsil and a tooth(extracted) before I started radiation and chemo in mid-July. Finished on Sept 15. PET Scan in Dec showed "dramatic response" to treatment but, the largest lymph node still showed "slight" uptake. I'm scheduled for a modified neck dissection on Jan 10,2011.
    In response to Mary's inquiry: I believe the standard of care dictates that if there is any questionable tissue still present or any uptake at your 3-month post-treatment PET Scan, they will proceed with the neck dissection as a precaution. That's what they're doing with me and the exact same procedure was followed with a high school friend of mine that preceeded me through the dignosis/treatments by 2 months, even though we live in different parts of the country(me in TX and him in NC).
    Doug's post is spot on. Wish I'd had that before/during/and after my treatments. My Caring Bridge site is http://www.caringbridge.org/visit/tedcamp. If I can be of any help, please ask.


    Best of Luck. You are not alone!!

    Ted Camp
  • Hondo
    Hondo Member Posts: 6,636 Member
    #51
    caspercamp said:

    Club "Membership"
    Ron,
    Sorry to say it but, "Welcome to the Club." You've found this site early. What a blessing. I sure could've used this a few months ago. My diagnosis was very similar to yours. SCC found in my right tonsil after a swollen lymph node was biopsied. Dignosed on May 26th, last year. Stage IV. Lost a tonsil and a tooth(extracted) before I started radiation and chemo in mid-July. Finished on Sept 15. PET Scan in Dec showed "dramatic response" to treatment but, the largest lymph node still showed "slight" uptake. I'm scheduled for a modified neck dissection on Jan 10,2011.
    In response to Mary's inquiry: I believe the standard of care dictates that if there is any questionable tissue still present or any uptake at your 3-month post-treatment PET Scan, they will proceed with the neck dissection as a precaution. That's what they're doing with me and the exact same procedure was followed with a high school friend of mine that preceeded me through the dignosis/treatments by 2 months, even though we live in different parts of the country(me in TX and him in NC).
    Doug's post is spot on. Wish I'd had that before/during/and after my treatments. My Caring Bridge site is http://www.caringbridge.org/visit/tedcamp. If I can be of any help, please ask.


    Best of Luck. You are not alone!!

    Ted Camp

    Hi Ted / Josh

    Just to say and welcome to you both to CSN, I too wish I knew of this site when I did my treatment. All the best to you both as you continue and hope all will go well.

    Hondo
  • josh r.
    josh r. Member Posts: 264 Member
    #52
    Hondo said:

    Hi Ted / Josh

    Just to say and welcome to you both to CSN, I too wish I knew of this site when I did my treatment. All the best to you both as you continue and hope all will go well.

    Hondo

    Thanks and all the best
    Hondo,
    Thanks for your welcomeing note. This sight is priceless. I've read a number of your post and your positive attitude for the troubles of your brothers and sisters is remarkable. Be sure that we too are pulling for you as you are going through a very rocky time. I hope today was better than yesterday and tomorrow is even brighter. Josh r.

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