does anyone have poorly differiented thyroid cancer? Has anyone been told iodine treatment won't he

grateful1
grateful1 Member Posts: 80 Member
edited March 2014 in Thyroid Cancer #1
My tumor is diagnosed as poorly differentiated thyroid cancer and they don't think it would respond to iodine treatment. It is inoperable and considered aggressive. Does anyone else have this type or been told iodine treatment might not help at all? thanks. I am disappointed--as I don't know what is left. They said sutent--a chemo pill. but I don't know anyone who ever took it and it was not designed for the thyroid. thanks

Comments

  • nasher
    nasher Member Posts: 505 Member
    #2
    there is alot of information
    there is alot of information on www.thyca.org about inoperable and radiation resistant cancer

    it probably isnt that it wont help knock out the cancer but that it the radiation will be more harmfull to your healthy cells than the cancer cells.


    hugs good luck
  • grateful1
    grateful1 Member Posts: 80 Member
    #3
    nasher said:

    there is alot of information
    there is alot of information on www.thyca.org about inoperable and radiation resistant cancer

    it probably isnt that it wont help knock out the cancer but that it the radiation will be more harmfull to your healthy cells than the cancer cells.


    hugs good luck

    nasher
    THANK YOU, NASHER, FOR YOUR KINDNESS. I JUST STUDIED THE PAGES. THE ODD PART IS I CAN'T FIND POORLY DIFFERIEATED THYROID CANCER. I AM GATHERING IT IS ANAPLASTIC...BUT MY DRS. CAN'T SEEM TO GET A DIAGNOSIS. THE SURGEON FIRST THOUGHT IT WAS ANAPLASTIC BASED ON THE NEEDLE BIOPSY IN FEB, THEN WHEN HE DID A BIOPSY WHILE TRYING TO REMOVE THE TUMOR IN APRIL, WHICH HE COULDN'T, HE THOUGHT IT WAS PAPILLARY. THE BIOPSY ODDLY CAME BACK BENIGN COMPARED TO THE NEEDLE BIOPSY A COUPLE MONTHS EARLIER WHICH CAME BACK POORLY DIFFERIATED.

    THE RADIOLOGIST SAID IF IT WERE ANAPNAPLASTIC I WOULD HAVE LOST MY VOCAL CORDS BY NOW. I WAS DIAGNOSED ALMOST SIX MONTHS AGO AND THE PAIN STARTED 8 MOS AGO.

    THE ONCOLOGIST THINKS IT'S ANAPLASTIC AND WANTS TO GIVE ME SUTENT.

    THE HEAD OF NUCLEAR MED WHO WAS SUPPOSED TO GIVE ME IODINE TREATMENT WHICH THE ENCRINOLOGIST ORDERED SAID HE DIDN'T THINK IODINE TREATMENT WOULD HELP.
    THYCA SAID YOU SHOULD RUSH AND GET TREATMENT--BUT I AM GETTING NO TREATMENT NOW. EXCEPT I TAKE POLY-MVA FROM SUzANNE SOMERS BOOK KNOCK OUT. I AM A RADIO TALK SHOW HOST AND HAD HER ON MY SHOW A COUPLE TIMES AND THOUGHT SHE WAS A CAREFUL INTERVIEWER.

    MEANWHILE, I AM JUST PRAYING AND TRYING TO STAY POSITIVE AND EAT A GOOD SUGAR FREE DIET. THANK YOU SO MUCH FOR YOUR KINDNESS. HOW ARE YOU DOING--GOOD I HOPE.
  • weberdns
    weberdns Member Posts: 154
    #4
    grateful1 said:

    nasher
    THANK YOU, NASHER, FOR YOUR KINDNESS. I JUST STUDIED THE PAGES. THE ODD PART IS I CAN'T FIND POORLY DIFFERIEATED THYROID CANCER. I AM GATHERING IT IS ANAPLASTIC...BUT MY DRS. CAN'T SEEM TO GET A DIAGNOSIS. THE SURGEON FIRST THOUGHT IT WAS ANAPLASTIC BASED ON THE NEEDLE BIOPSY IN FEB, THEN WHEN HE DID A BIOPSY WHILE TRYING TO REMOVE THE TUMOR IN APRIL, WHICH HE COULDN'T, HE THOUGHT IT WAS PAPILLARY. THE BIOPSY ODDLY CAME BACK BENIGN COMPARED TO THE NEEDLE BIOPSY A COUPLE MONTHS EARLIER WHICH CAME BACK POORLY DIFFERIATED.

    THE RADIOLOGIST SAID IF IT WERE ANAPNAPLASTIC I WOULD HAVE LOST MY VOCAL CORDS BY NOW. I WAS DIAGNOSED ALMOST SIX MONTHS AGO AND THE PAIN STARTED 8 MOS AGO.

    THE ONCOLOGIST THINKS IT'S ANAPLASTIC AND WANTS TO GIVE ME SUTENT.

    THE HEAD OF NUCLEAR MED WHO WAS SUPPOSED TO GIVE ME IODINE TREATMENT WHICH THE ENCRINOLOGIST ORDERED SAID HE DIDN'T THINK IODINE TREATMENT WOULD HELP.
    THYCA SAID YOU SHOULD RUSH AND GET TREATMENT--BUT I AM GETTING NO TREATMENT NOW. EXCEPT I TAKE POLY-MVA FROM SUzANNE SOMERS BOOK KNOCK OUT. I AM A RADIO TALK SHOW HOST AND HAD HER ON MY SHOW A COUPLE TIMES AND THOUGHT SHE WAS A CAREFUL INTERVIEWER.

    MEANWHILE, I AM JUST PRAYING AND TRYING TO STAY POSITIVE AND EAT A GOOD SUGAR FREE DIET. THANK YOU SO MUCH FOR YOUR KINDNESS. HOW ARE YOU DOING--GOOD I HOPE.

    Get a second opinion on the biopsy
    Send your pathology slides to another hospital for a second opinion since there is so much controversy about your diagnosis.
  • grateful1
    grateful1 Member Posts: 80 Member
    #5
    weberdns said:

    Get a second opinion on the biopsy
    Send your pathology slides to another hospital for a second opinion since there is so much controversy about your diagnosis.

    THANK YOU WEBERDNS
    I did have severl opionins--which is why I feel so confused. My needle biopsy in feb was seen my beth israel, memorial, and hew york hospital--all said poorly differienated thyroid cancer-maybe anaplastic. In April when they couldn;t remove tumor they took a biopsy--and it came back benign, even though the surgeeons thoraic and thyroid said it looked like stage 4 cancer and were scratching their heads. They had both biopsies examined by three or four top hospitals in nyc. It seems no one knows what to do with me. The pet scan showed cancer two weeks ago--but it had not spread to the lungs. I got all set for iodine treatment--but then they said it probably wouldn't work. They talk about sutent--and possiblly radiation and chemo--tho the radiologist said my vocal cords should have gone by now, so he is reluctant. they have talked about a core biopsy--but then nixed that.. they said they are scratching their heads. The endincrinolgist said I have aggressive cancer. But nobody can agree what to do about it. I just take polymva and supplements.I was irradiated as an infant for an enlarged thymus which makes me a high risk for cancer.thanks for your concern.
  • BeeBee300
    BeeBee300 Member Posts: 5
    #6
    grateful1 said:

    nasher
    THANK YOU, NASHER, FOR YOUR KINDNESS. I JUST STUDIED THE PAGES. THE ODD PART IS I CAN'T FIND POORLY DIFFERIEATED THYROID CANCER. I AM GATHERING IT IS ANAPLASTIC...BUT MY DRS. CAN'T SEEM TO GET A DIAGNOSIS. THE SURGEON FIRST THOUGHT IT WAS ANAPLASTIC BASED ON THE NEEDLE BIOPSY IN FEB, THEN WHEN HE DID A BIOPSY WHILE TRYING TO REMOVE THE TUMOR IN APRIL, WHICH HE COULDN'T, HE THOUGHT IT WAS PAPILLARY. THE BIOPSY ODDLY CAME BACK BENIGN COMPARED TO THE NEEDLE BIOPSY A COUPLE MONTHS EARLIER WHICH CAME BACK POORLY DIFFERIATED.

    THE RADIOLOGIST SAID IF IT WERE ANAPNAPLASTIC I WOULD HAVE LOST MY VOCAL CORDS BY NOW. I WAS DIAGNOSED ALMOST SIX MONTHS AGO AND THE PAIN STARTED 8 MOS AGO.

    THE ONCOLOGIST THINKS IT'S ANAPLASTIC AND WANTS TO GIVE ME SUTENT.

    THE HEAD OF NUCLEAR MED WHO WAS SUPPOSED TO GIVE ME IODINE TREATMENT WHICH THE ENCRINOLOGIST ORDERED SAID HE DIDN'T THINK IODINE TREATMENT WOULD HELP.
    THYCA SAID YOU SHOULD RUSH AND GET TREATMENT--BUT I AM GETTING NO TREATMENT NOW. EXCEPT I TAKE POLY-MVA FROM SUzANNE SOMERS BOOK KNOCK OUT. I AM A RADIO TALK SHOW HOST AND HAD HER ON MY SHOW A COUPLE TIMES AND THOUGHT SHE WAS A CAREFUL INTERVIEWER.

    MEANWHILE, I AM JUST PRAYING AND TRYING TO STAY POSITIVE AND EAT A GOOD SUGAR FREE DIET. THANK YOU SO MUCH FOR YOUR KINDNESS. HOW ARE YOU DOING--GOOD I HOPE.

    Help
    Hi Grateful1. I'm sorry you are going through this. I found Dr Lupo on Medhelp web page extremely helpful. HE can point you in the right direction and suggest what you should be doing next. www.medhelp.org

    Well worth going on that website on the thyroid cancer forum. Dr Lupo is one of the experts and has been a huge help to me. The website is also a super support forum.

    Good luck!!

    PS - have you searched the web on ketogenic diet for cancer. This is one of the only diets I know of that has medical research proving that it works for some cancers.
  • alapah
    alapah Member Posts: 287
    #7
    BeeBee300 said:

    Help
    Hi Grateful1. I'm sorry you are going through this. I found Dr Lupo on Medhelp web page extremely helpful. HE can point you in the right direction and suggest what you should be doing next. www.medhelp.org

    Well worth going on that website on the thyroid cancer forum. Dr Lupo is one of the experts and has been a huge help to me. The website is also a super support forum.

    Good luck!!

    PS - have you searched the web on ketogenic diet for cancer. This is one of the only diets I know of that has medical research proving that it works for some cancers.

    chemo drugs to treat thyroid cancer
    I have an aggressive form of papillary cancer. In a recent PET scan they found nodules in my lungs. RAI is not an option as it did not uptake in the recent testing they conducted. As a result, I am likely headed towards doctors or programs using chemo drugs for treatment. There are a fair number of thyroid patients taking chemo drugs such as nexavar, sutent and others. I would encourage you to join the Yahoo Group for Adv-Thyca (sponsored by thyca.org). There is a network of people there who are dealing with situations similar to yours and they have a lot of collective knowledge to draw from.

    There are clinical trials too for thyroid cancer. One place you can search for trials in OncoLink.org. I think the thyca.org page also has a link to search for trials. Knowledge is power.
  • miladyx
    miladyx Member Posts: 85
    #8
    alapah said:

    chemo drugs to treat thyroid cancer
    I have an aggressive form of papillary cancer. In a recent PET scan they found nodules in my lungs. RAI is not an option as it did not uptake in the recent testing they conducted. As a result, I am likely headed towards doctors or programs using chemo drugs for treatment. There are a fair number of thyroid patients taking chemo drugs such as nexavar, sutent and others. I would encourage you to join the Yahoo Group for Adv-Thyca (sponsored by thyca.org). There is a network of people there who are dealing with situations similar to yours and they have a lot of collective knowledge to draw from.

    There are clinical trials too for thyroid cancer. One place you can search for trials in OncoLink.org. I think the thyca.org page also has a link to search for trials. Knowledge is power.

    alapah
    Sorry you are going through this. How high are your tg/tgab levels?
    I think they are supposed to be pretty high with lung mets, no?
  • alapah
    alapah Member Posts: 287
    #9
    miladyx said:

    alapah
    Sorry you are going through this. How high are your tg/tgab levels?
    I think they are supposed to be pretty high with lung mets, no?

    levels
    My supressed Tg is 1.0 but my TgAB is something like 25. Because I have antibodies the Tg marker is pretty useless, unfortunately.
  • miladyx
    miladyx Member Posts: 85
    #10
    alapah said:

    levels
    My supressed Tg is 1.0 but my TgAB is something like 25. Because I have antibodies the Tg marker is pretty useless, unfortunately.

    biopsy?
    are the doctors going to do a biopsy to confirm that lung nodules are indeed thyca? did you have a pet or ct before and they were not there and now they (the nodules) are?
  • alapah
    alapah Member Posts: 287
    #11
    miladyx said:

    biopsy?
    are the doctors going to do a biopsy to confirm that lung nodules are indeed thyca? did you have a pet or ct before and they were not there and now they (the nodules) are?

    awaiting consult for next step
    I only found out Thurs that the nodules lit up on the recent PET/CT. I had a CT in June 2009 as part of my original diagnosis and two very small nodules were in that lung at the time. Those two did not light up in a PET/CT done in October 09 but the PET/CT this month showed three (one unchanged in size) - so that means one new one and then one of the existing ones grew larger - and those are the two that lit up. I don't know yet how large they have to be to biopsy. That's likely the next step however. I have a lot of good baseline labs and films (CT, MRI, PET, xray) to compare. The day I was diagnosed I went for blood tests and my endo always sends them to USC for the analysis and they bank your samples there so they have them to compare and run later. Always the same assay used so it's consistent.
  • miladyx
    miladyx Member Posts: 85
    #12
    alapah said:

    awaiting consult for next step
    I only found out Thurs that the nodules lit up on the recent PET/CT. I had a CT in June 2009 as part of my original diagnosis and two very small nodules were in that lung at the time. Those two did not light up in a PET/CT done in October 09 but the PET/CT this month showed three (one unchanged in size) - so that means one new one and then one of the existing ones grew larger - and those are the two that lit up. I don't know yet how large they have to be to biopsy. That's likely the next step however. I have a lot of good baseline labs and films (CT, MRI, PET, xray) to compare. The day I was diagnosed I went for blood tests and my endo always sends them to USC for the analysis and they bank your samples there so they have them to compare and run later. Always the same assay used so it's consistent.

    that was my next question
    Where your blood goes? Because even if u have tgab, tg of 1 still
    Seems pretty low especially since usc is supposed to give more accurate results.
    Are those number stimulated or suppressed? Or did your numbers saise significantly when hypo or on thyrogen?

    I hope you develop a good plan. Keep us posted...
  • alapah
    alapah Member Posts: 287
    #13
    miladyx said:

    that was my next question
    Where your blood goes? Because even if u have tgab, tg of 1 still
    Seems pretty low especially since usc is supposed to give more accurate results.
    Are those number stimulated or suppressed? Or did your numbers saise significantly when hypo or on thyrogen?

    I hope you develop a good plan. Keep us posted...

    labs
    I am getting a copy of my latest labs monday. I don't have the TgAB numbers onhand but it was interesting that on Synthroid my Tg in May was 1.4 and on thyrogen in June it was 1.0 (Tg AB was also lower on that thyrogen draw than it was on my draw under Synthroid). That seemed odd to me - I had assumed the numbers influenced by thyrogen would be higher.

    My TgAB was up in May from previously, but not by much. 1.4 is the highest I believe since my RAI and EBR. But the TgAB screws up everything. My endo thinks it makes it pretty useless in my case. She's very supportive of helping me find expert care to make the best decision regarding the next steps (she's extremely good herself, but my case is fairly unusual). I am grateful that she has been so thorough from the very start. I have a good series of blood draws banked at USC for all of the various stages thus far (pre TT, pre RAI, post RAI, post EBR etc).
  • miladyx
    miladyx Member Posts: 85
    #14
    alapah said:

    labs
    I am getting a copy of my latest labs monday. I don't have the TgAB numbers onhand but it was interesting that on Synthroid my Tg in May was 1.4 and on thyrogen in June it was 1.0 (Tg AB was also lower on that thyrogen draw than it was on my draw under Synthroid). That seemed odd to me - I had assumed the numbers influenced by thyrogen would be higher.

    My TgAB was up in May from previously, but not by much. 1.4 is the highest I believe since my RAI and EBR. But the TgAB screws up everything. My endo thinks it makes it pretty useless in my case. She's very supportive of helping me find expert care to make the best decision regarding the next steps (she's extremely good herself, but my case is fairly unusual). I am grateful that she has been so thorough from the very start. I have a good series of blood draws banked at USC for all of the various stages thus far (pre TT, pre RAI, post RAI, post EBR etc).

    Hi Alapah -
    How are you doing this week? Did you get any information on what your next steps are? or what your doctors think?

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