Anyone here beat stage IV B throat Cancer?

paaatriot101
paaatriot101 Member Posts: 16
edited March 2014 in Head and Neck Cancer #1
Recently was told that the initial diagnosis of stage II was waaaay off.
ENT based it on PET scan results, problem was the techs at the scan unit had a no show patient before me, and used the 45 + minute old glucose/tracer cocktail, and it did not highlight properly.
Most people would have been happy to have their doc say, het the scan is clean its only the one tumor, but I knew better.
With my husbands help, (couldn't speak well) we got things rolling at Emory Winship Cancer ctr in Atlanta.
It took some time and doing, and now aside from being scheduled to begin chemo and radiation I was informed by the chemo guy day before yesterday that the cancer has crossed into fatty tissue,then the radiation oncologist told me today it is into muscle tissue and lymph nodes, as well as some concern regarding carotid involvement. Stage IV B.
Anyone else been here done that and still doing? 19th scheduled to have PEG tube put in.

Comments

  • paaatriot101
    paaatriot101 Member Posts: 16
    #2
    yoo hoo
    hi you guys
    nothing?
    No One?
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    paaatriot101 said:

    yoo hoo
    hi you guys
    nothing?
    No One?

    Start your chemo and rads
    Start the chemo and radiation treatment. It may be that by the end of treatment it has shrank to a manageble size for surgery. Mine had spread from the Lymph node to the surrounding muscle but the radiation almost melted it away. They have to see how you respond to treatment. This stuff is one baby step at a time. Hang in there and you still got several options they haven't even mentioned yet, Brachytherapy and cyber knife and probably surgery after treatment.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    paaatriot101 said:

    yoo hoo
    hi you guys
    nothing?
    No One?

    Sometimes people do not respond when they have not had the specific experience you are asking about, as may be the case here, or perhaps it is the case that they have simply not been given ample time to respond.

    In any event, I am a survivor of stage 3 squamous cell carcinoma (SCC), with cancer in both tongue and lymph nodes (neck). I had a lengthy surgery to replace the right side of my tongue, basically, along with a radical neck dissection. This was in October of '05, and was followed by chemotherapy and radiation. Subsequently, a node was discovered in my lower right lung lobe and I underwent a lobectomy in January of '08 to remove it, followed by additional chemotherapy. It proved also to be SCC, but it could not be determined whether it was metastasis or new. Our hope, strangely enough, is that it was new.

    I am now NED (No Evidence of Disease) and have been since that surgery, so nearly two years now.

    Not exactly where you are at, I know, but at least some proof that we can get through these things in many cases with determination, hope and humor (and it doesn't hurt to have great medical professionals on your side and even better caregivers on the homefront!)

    Best wishes to you and welcome to CSN. It is not the kind of club you want to be a part of, due to the reasons for membership, but I can assure you that the people who habituate these boards and the chat rooms are among the friendliest, kindest, and most helpful you are likely to run into anywhere.

    Take care,

    Joe
  • SmithMama2
    SmithMama2 Member Posts: 48
    #5
    Winship patient too
    Who are your oncology docs? My husband was at Winship too. Dr. Beiter (known as Dr. Wonderful around our house) was his radiation oncologist, and Dr. Saba was his medical oncologist. Both are great doctors. We started off at Dekalb, and boy am I glad we switched. The folks at Winship are really great. Be sure to plan to come to the support group meetings for SPHONC on the last Monday of each month at 6:30. They are very helpful, and you might find someone who has had your diagnosis who you can contact for support locally.
  • paaatriot101
    paaatriot101 Member Posts: 16
    #6
    SmithMama2 said:

    Winship patient too
    Who are your oncology docs? My husband was at Winship too. Dr. Beiter (known as Dr. Wonderful around our house) was his radiation oncologist, and Dr. Saba was his medical oncologist. Both are great doctors. We started off at Dekalb, and boy am I glad we switched. The folks at Winship are really great. Be sure to plan to come to the support group meetings for SPHONC on the last Monday of each month at 6:30. They are very helpful, and you might find someone who has had your diagnosis who you can contact for support locally.

    Hi SMithMama
    Dr. Bietler is my radiology oncologist:) and Dr. Saba is for my Chemo, and Dr. Wadsworth
    is the ENT otolaryngology/oncologist spec. They are all really great and so nice:)Definitely worth the ride:)I know as bad as it looks now, it would have been worse if we didn't go for the expert opinion. Staying positive, and hey if there is no one yet on our board that has gone from start to NED at stage IV B yet then follow me cause I will be the encouragement for others. I have a few support groups, I will try to make it back here to this one more often, sometimes login does not want to work here for some reason.
    So Glad your hubby is doing great:) That is the best kind of news.
  • paaatriot101
    paaatriot101 Member Posts: 16
    #7
    soccerfreaks said:

    Sometimes people do not respond when they have not had the specific experience you are asking about, as may be the case here, or perhaps it is the case that they have simply not been given ample time to respond.

    In any event, I am a survivor of stage 3 squamous cell carcinoma (SCC), with cancer in both tongue and lymph nodes (neck). I had a lengthy surgery to replace the right side of my tongue, basically, along with a radical neck dissection. This was in October of '05, and was followed by chemotherapy and radiation. Subsequently, a node was discovered in my lower right lung lobe and I underwent a lobectomy in January of '08 to remove it, followed by additional chemotherapy. It proved also to be SCC, but it could not be determined whether it was metastasis or new. Our hope, strangely enough, is that it was new.

    I am now NED (No Evidence of Disease) and have been since that surgery, so nearly two years now.

    Not exactly where you are at, I know, but at least some proof that we can get through these things in many cases with determination, hope and humor (and it doesn't hurt to have great medical professionals on your side and even better caregivers on the homefront!)

    Best wishes to you and welcome to CSN. It is not the kind of club you want to be a part of, due to the reasons for membership, but I can assure you that the people who habituate these boards and the chat rooms are among the friendliest, kindest, and most helpful you are likely to run into anywhere.

    Take care,

    Joe

    hi Joe
    Yes I wish still III, sigh, somehow in a matter of a 2 weeks the news changed from easy to beat I, to easy to beat II, then it was III because it had moved into fatty tissue , and wed we were told it is in fatty, and muscle tissue, as well as a few lymph nodes, and the plan is to look all the way down into my belly(Possible primary else where) and put in a PEG tube at that time:) SO Very Glad to hear of another person with NED status after a good length of time:)
    As I mentioned to SMithMama Yes I am in a couple other support forums, they really are great for advice, encouragement, and understanding :)
    I will be popping in every so often as I can
    Thanks
  • paaatriot101
    paaatriot101 Member Posts: 16
    #8
    ratface said:

    Start your chemo and rads
    Start the chemo and radiation treatment. It may be that by the end of treatment it has shrank to a manageble size for surgery. Mine had spread from the Lymph node to the surrounding muscle but the radiation almost melted it away. They have to see how you respond to treatment. This stuff is one baby step at a time. Hang in there and you still got several options they haven't even mentioned yet, Brachytherapy and cyber knife and probably surgery after treatment.

    hi Ratface
    lol story behind that name? Yes I am hoping that once we get the treatments started I will learn more. At this point no one has said we are going for cure, or that there is a time frame I should be concerned with, so like the commercial says... no experation date stamped on me anywhere:)
  • SmithMama2
    SmithMama2 Member Posts: 48
    #9
    paaatriot101 said:

    Hi SMithMama
    Dr. Bietler is my radiology oncologist:) and Dr. Saba is for my Chemo, and Dr. Wadsworth
    is the ENT otolaryngology/oncologist spec. They are all really great and so nice:)Definitely worth the ride:)I know as bad as it looks now, it would have been worse if we didn't go for the expert opinion. Staying positive, and hey if there is no one yet on our board that has gone from start to NED at stage IV B yet then follow me cause I will be the encouragement for others. I have a few support groups, I will try to make it back here to this one more often, sometimes login does not want to work here for some reason.
    So Glad your hubby is doing great:) That is the best kind of news.

    small world!
    Dr. Wadsworth is Kevin's ENT too. I imagine we will meet sometime. Give us some more info about you. How did you find out you had cancer to begin with? My husband Kevin, age 49, was diagnosed in June after his lymph node was swollen in his neck for 3 months. I should have noticed that something was wrong, but I never did, and he didn't tell me that he had anything going on. He had the lymph nodes removed from his neck (not standard treatment according to the Emory docs) and when they found them to be cancerous the snowball began to roll.

    He had (I am praying that I can write HAD in past tense rather than has...) stage 4a squamous cell carcinoma with the primary located at the base of his tongue. Chemo and radiation started in August. Prior to that he had oral surgery to remove damaged teeth and a PEG tube installed.

    He finished treatment on Oct. 7. He had 35 rounds of radiation and 6 chemo treatments (1 of cisplatin but it started to cause hearing loss, so they switched to carboplatin and taxol, 5 weekly rounds of that.) He goes back for his next PET/CT scans on Nov. 30 to see if the cancer is gone.

    We live in Decatur, so the commute to Emory is a breeze.

    I am happy you found this group. The folks are very nice and so supportive! I wish I had found it at the start of this process, as it would have been so helpful.
  • paaatriot101
    paaatriot101 Member Posts: 16
    #10
    SmithMama2 said:

    small world!
    Dr. Wadsworth is Kevin's ENT too. I imagine we will meet sometime. Give us some more info about you. How did you find out you had cancer to begin with? My husband Kevin, age 49, was diagnosed in June after his lymph node was swollen in his neck for 3 months. I should have noticed that something was wrong, but I never did, and he didn't tell me that he had anything going on. He had the lymph nodes removed from his neck (not standard treatment according to the Emory docs) and when they found them to be cancerous the snowball began to roll.

    He had (I am praying that I can write HAD in past tense rather than has...) stage 4a squamous cell carcinoma with the primary located at the base of his tongue. Chemo and radiation started in August. Prior to that he had oral surgery to remove damaged teeth and a PEG tube installed.

    He finished treatment on Oct. 7. He had 35 rounds of radiation and 6 chemo treatments (1 of cisplatin but it started to cause hearing loss, so they switched to carboplatin and taxol, 5 weekly rounds of that.) He goes back for his next PET/CT scans on Nov. 30 to see if the cancer is gone.

    We live in Decatur, so the commute to Emory is a breeze.

    I am happy you found this group. The folks are very nice and so supportive! I wish I had found it at the start of this process, as it would have been so helpful.

    Talk About Small World
    My Husband's Name is Kevin too LOL. Well I hope on the 30th your husband has a clean scan, that is the day I will begin Cisplatin and radiation:) I was sick off and on for long time, odd blood work etc.. nothing definitive, it wasn't till I lost my voice and was sent to ENT that tumor was seen, and then biopsies, etc...So good to hear from you and stay in touch it is awesome he is doing well
  • gmorris44
    gmorris44 Member Posts: 1
    #11
    My Dad is a survivor
    My father is in his 3rd year w/out any sign of new cancer after being diagnosed w/ stage IV neck/throat cancer. He was treated with Chemo and Radiation and had some fairly intense surgery to remove the cancer from his neck/throat. My apologies for not knowing the technical terms or the depth of his treatment. He is able to speak just fine. Thats the good news. The not-so-good news is that the treatment was pretty tough on his 60+ year old body. Hi salivary glands and taste buds haven't rebounded very well and he is still experiencing some intense neuropathy. We're thrilled of course to have him in our lives still, and we're constantly in the process of looking for solutions to the ongoing post-treatment issues.

    It can be beat! You can beat it! My best thoughts/prayers to you.

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