Turned non-RAI avid. Now what?

smbb
smbb Member Posts: 6
edited March 2014 in Thyroid Cancer #1
Hello all -
Thank you, in advance, for your consideration. I have received 5 RAI treatments (putting me very close to my lifetime max exposure according the ocologist) even though there was never clear uptake outside of the expected areas (salivary, urinary, some GI.)

In 2007 my Tg levels started at 236 six weeks after TT and right neck resection (18 of 26 nodes were pos.) Had another resection 9 months later (12 of 18 pos.) Six months ago I had a negative PET and MRI but Tg still at 14. Doc says I must be non-avid. Tg is going to be checked in 2 months.

Questions: #1) should I continue to prep as low iodine until I get a clear Tg reading or try the Thyrogen prep? #2) What now. I feel like a ticking time bomb while my Tg is up but no clear tumor mass.

Thanks again for your responses. - Susan

Comments

  • jcvolt
    jcvolt Member Posts: 69
    #2
    non-avid?
    That is a new one for me.
  • miladyx
    miladyx Member Posts: 85
    #3
    a few questions for you...
    ... did you have 5 RAI treatments from 2007 til now? when was your last one? is your tg of 14 suppressed or not supressed? and how old were you when diagnosed?
  • smbb
    smbb Member Posts: 6
    #4
    miladyx said:

    a few questions for you...
    ... did you have 5 RAI treatments from 2007 til now? when was your last one? is your tg of 14 suppressed or not supressed? and how old were you when diagnosed?

    Clarification
    Hi MiLadyX -
    I was diagnosed on Valentine's Day 2007 at age 47. All of my RAI treatments were from March 2007 through six months ago. My Tg of 14 was measured, unsuppressed, during my hypo stage prior to RAI. My suppressed Tg is <0.5. My onco and endo say that I need to be <0.5 unsuppressed in order to be considered in remission.

    Thanks for your fast response and care.
    - Susan
  • miladyx
    miladyx Member Posts: 85
    #5
    smbb said:

    Clarification
    Hi MiLadyX -
    I was diagnosed on Valentine's Day 2007 at age 47. All of my RAI treatments were from March 2007 through six months ago. My Tg of 14 was measured, unsuppressed, during my hypo stage prior to RAI. My suppressed Tg is <0.5. My onco and endo say that I need to be <0.5 unsuppressed in order to be considered in remission.

    Thanks for your fast response and care.
    - Susan</p>

    are you being treated by an endocrinologist...
    ...who has a lot thyroid cancer experience??? 5 RAIs in 2.5 years sound way too many as RAI takes 6-12 months to work. Currently, most thyroid cancer specialists will NOT give RAI before 12-18 months after the last treatment. They try to follow the patient up closely by scans so that they can remove anything visible as opposed to expose the person to more RAI.

    how were the additional lymph nodes that were taken out in your 2nd surgery found? Ultrasound, MRI??

    While it is true that to be in complete remission your unsuppressed tg should be <0.5, <1, <2, <5 (this number changes depending on which doctor you ask), it is also true that 1/3 of thyroid cancer patients never achieve undetectable tg - that is just the wat it is. While this means you have to be monitored more closely, it does not mean disaster. they are many people who go on 15-20 years with similar or higher tg levels. with tg level, the most imporant thing is the trend. if is increasing, than it is cause for more concern than a detectable tg that stays stable.

    Just stay on top of things and try to get a second opinion if you ask me!
  • smbb
    smbb Member Posts: 6
    #6
    miladyx said:

    are you being treated by an endocrinologist...
    ...who has a lot thyroid cancer experience??? 5 RAIs in 2.5 years sound way too many as RAI takes 6-12 months to work. Currently, most thyroid cancer specialists will NOT give RAI before 12-18 months after the last treatment. They try to follow the patient up closely by scans so that they can remove anything visible as opposed to expose the person to more RAI.

    how were the additional lymph nodes that were taken out in your 2nd surgery found? Ultrasound, MRI??

    While it is true that to be in complete remission your unsuppressed tg should be <0.5, <1, <2, <5 (this number changes depending on which doctor you ask), it is also true that 1/3 of thyroid cancer patients never achieve undetectable tg - that is just the wat it is. While this means you have to be monitored more closely, it does not mean disaster. they are many people who go on 15-20 years with similar or higher tg levels. with tg level, the most imporant thing is the trend. if is increasing, than it is cause for more concern than a detectable tg that stays stable.

    Just stay on top of things and try to get a second opinion if you ask me!</p>

    RAI every 6 months
    My endo and onco decided to treat every six months due to the status of the Tg and incidence of pos nodes. I've seen two endos both of whom agreed that agressive treatment was best. One of them was rated a "best" doc in my local area (Seattle).

    The second surgery was because I felt another mass near my parotid salivary gland. FNA revealed CA. The surgery was 'needle guided' where locator needles were placed with US while I was sedated then moved for surgery. Many nodes were removed during surgery including one under my clavicle.
  • Phyllis900
    Phyllis900 Member Posts: 21
    #7
    Thyrogen preparation for RAI
    Hello,
    i think maybe you should try the Thyrogen. I received my RAI in Jan'09, and i was using Thyrogen at that time. I still need to be low iodine diet for a month, but meanwhile i can still take my Synthroid. No significant complications and i have read that others without the Thyrogen suffered a lot. My endo says that too much RAI will kill healthy cells. Is it true? How come u need so much RAI? My endo said that more than 3 RAI is too much. ( By way, how much is the dosage of your RAI? 150 mCi?) Take Care
  • smbb
    smbb Member Posts: 6
    #8
    Phyllis900 said:

    Thyrogen preparation for RAI
    Hello,
    i think maybe you should try the Thyrogen. I received my RAI in Jan'09, and i was using Thyrogen at that time. I still need to be low iodine diet for a month, but meanwhile i can still take my Synthroid. No significant complications and i have read that others without the Thyrogen suffered a lot. My endo says that too much RAI will kill healthy cells. Is it true? How come u need so much RAI? My endo said that more than 3 RAI is too much. ( By way, how much is the dosage of your RAI? 150 mCi?) Take Care

    RAI dosage
    Hi Phyllis -
    I have decided to switch endo and onco docs. There are only two hospitals where the gamma WBS and RAI treatment are given here so I'm changing. My dosages were all between 178 and 202 mCi. It is true that my Tg dropped by half after each treatment but I still wonder if I was over treated or just treated very agressivly to try to stop the spread of the cancer.

    Thanks for your comments and concern. Take care -
    Susan
  • DebPM
    DebPM Member Posts: 1
    #9
    My experience after 5 RAI
    WOW! I could almost have written your post. I received Dx on New Years Eve 2005; it was discovered when bone met broke my upper right arm. No other symptoms, even though I had told my doc for over 10 years that something was wrong with my thyroid, but because my TSH was on the very low end of "normal", no further testing was done. At the time of my Dx, my Tg was around 2500. I have bone mets still in my arm, two ribs, breast bone, left hip, pelvis, and two spots on my left leg. Based on how far the mets had moved through my system, my 3 onc's and my endo determined that I had probably had ThyCa for 10-12 years. I had RAI twice in 2006, twice in 2007, and once in 2008. My Tg was down to 435, but in April it had jumped back to 1348. I've had 985 mci of I131, so nuclear onc and endo have said no more. I'm starting Zometa infusions tomorrow, once every four weeks. I'm also having new CTs,(my arm, which I had already resolved with myself would hurt forever), my chest to check for lung mets, and a WBS with just a minimal amount of I131 to make the mets show up. Based on the results, my medical onc is considering Sunitinib or Sorafinib. He also keeps checking for clinical trials that I might qualify for. Who knows what will happen next?

    Good luck on this journey to each of you. Deb Mabe, Atlanta
  • JAWsSavannah
    JAWsSavannah Member Posts: 57
    #10
    DebPM said:

    My experience after 5 RAI
    WOW! I could almost have written your post. I received Dx on New Years Eve 2005; it was discovered when bone met broke my upper right arm. No other symptoms, even though I had told my doc for over 10 years that something was wrong with my thyroid, but because my TSH was on the very low end of "normal", no further testing was done. At the time of my Dx, my Tg was around 2500. I have bone mets still in my arm, two ribs, breast bone, left hip, pelvis, and two spots on my left leg. Based on how far the mets had moved through my system, my 3 onc's and my endo determined that I had probably had ThyCa for 10-12 years. I had RAI twice in 2006, twice in 2007, and once in 2008. My Tg was down to 435, but in April it had jumped back to 1348. I've had 985 mci of I131, so nuclear onc and endo have said no more. I'm starting Zometa infusions tomorrow, once every four weeks. I'm also having new CTs,(my arm, which I had already resolved with myself would hurt forever), my chest to check for lung mets, and a WBS with just a minimal amount of I131 to make the mets show up. Based on the results, my medical onc is considering Sunitinib or Sorafinib. He also keeps checking for clinical trials that I might qualify for. Who knows what will happen next?

    Good luck on this journey to each of you. Deb Mabe, Atlanta

    My follicular Ca was also
    My follicular Ca was also unresponsive to RAI so I recently joined a clinical trial for the experimental drug, Pazopanib. The Mayo Clinic is managing the trial but there may be other hospitals or cancer centers participating. The National Cancer Institute has a section on clinical trials where you can learn more about it.

    I've only been taking the drug for about 7 weeks but blood work done at 4 weeks was encouraging. My Tg level went down from 1225 to 333 and my requirements for Synthroid have been increasing.

    I will be having my first scans done tomorrow and I fully expect a positive report.
  • wayneseattle
    wayneseattle Member Posts: 6
    #11
    Deb or Susan -- still on the board?
    I know this is an old thread but your cases are similar to mine. I have some questions. Let me know if you are still active on the board.

    Briefly, my story:

    May 2010 - dx pap carcinoma
    May 2010 - TT
    June pre-RAI Tg of 221
    June 29 -- RAI dose of 178 mci

    Would love to hear from you two or anyone with such a high post-surgical Tg.

    Thanks

    Wayne
  • butterfly123
    butterfly123 Member Posts: 52
    #12
    smbb said:

    RAI dosage
    Hi Phyllis -
    I have decided to switch endo and onco docs. There are only two hospitals where the gamma WBS and RAI treatment are given here so I'm changing. My dosages were all between 178 and 202 mCi. It is true that my Tg dropped by half after each treatment but I still wonder if I was over treated or just treated very agressivly to try to stop the spread of the cancer.

    Thanks for your comments and concern. Take care -
    Susan

    RAI treatments
    Susan-
    As you probably know, it never hurts to get a second opinion and sounds like you are doing that. You are fortunate to have gotten your stimulated Tg down to 14 and that RAI still works for your thyroid cancer. And also fortunate that the thryoid meds are keeping your tg almost undetectable. As far as the number of RAI treatments, only a few hospitals in the US use RAI by dosimetry meaning that they give you the max amount without hurting you. I've read cases where a person has had 500 mc at one time. I wish that more hospitals would use dosimentry to save us the aggrevation of mutiple RAIs and the low-iodine diets, hypo systems, etc.

    I read on this post that someone had multiple bone mets. Typically bone mets give off higher tg levels. I have one 1CM bone met and my Tg is 150 (5 while on thyroid meds).

    I am glad you are getting another opinion. There are a lot of endos out there have no clue on how to treat advanced thyroid cancer like us. I switched endos about 2 years ago for that exact reason. We need to be educated about our cancer because we can go down the a treatment path that may not be the best.

    Best of health to you! Good luck with everything.
  • butterfly123
    butterfly123 Member Posts: 52
    #13
    wayneseattle said:

    Deb or Susan -- still on the board?
    I know this is an old thread but your cases are similar to mine. I have some questions. Let me know if you are still active on the board.

    Briefly, my story:

    May 2010 - dx pap carcinoma
    May 2010 - TT
    June pre-RAI Tg of 221
    June 29 -- RAI dose of 178 mci

    Would love to hear from you two or anyone with such a high post-surgical Tg.

    Thanks

    Wayne

    high Tg
    Hi Wayne-
    I also wrote on your other post. Just wanted to give you some words of encouragement since you may be reading some of these other posts and in panic mode. I hope you are not but just in case. I am not sure that your high Tg at the moment is a sign of residual thryoid cancer in your body. Hopefully someone else can chime in with his/her experience. It takes awhile for Tg to exit the body post TT or even after a biopsy. The true Tg measurement will be post RAI treatment. And even after RAI treatment, it could take up to 12-months to get a true accurate Tg levels. Hopefully you will see your Tg decrease 3 months post RAI, then 6 months later and so on.

    When will yout next Tg level be measured? What was yout TSH when this last Tg was measured? I'm assuming it was while you were off thyroid meds and going hypo in preparation for RAI.

    If you don't mind, I would like to know how your WBS turns out this week. Since you do have residual Tg, it will be "good news" if areas (preferable in your neck) light up on the scan. That means that any left over Tg in the body is still RAI-avid and will then be treated with the RAI. Having non-avid RAI tumor(s) leads to another "journey" with thyroid cancer. As I wrote on my other post, I have a 1cm, non-avid RAI, cervical spine tumor. I had approx 7 diagnostic tests (Ultrasound, CTs, MRIs, RAI, PET) to find it. I had beam radiation because nothing else would work and since the tumor sits in a life altering place I needed to treat it.

    Good luck and let me/us know how you make out this week.
  • wayneseattle
    wayneseattle Member Posts: 6
    #14
    butterfly123 said:

    high Tg
    Hi Wayne-
    I also wrote on your other post. Just wanted to give you some words of encouragement since you may be reading some of these other posts and in panic mode. I hope you are not but just in case. I am not sure that your high Tg at the moment is a sign of residual thryoid cancer in your body. Hopefully someone else can chime in with his/her experience. It takes awhile for Tg to exit the body post TT or even after a biopsy. The true Tg measurement will be post RAI treatment. And even after RAI treatment, it could take up to 12-months to get a true accurate Tg levels. Hopefully you will see your Tg decrease 3 months post RAI, then 6 months later and so on.

    When will yout next Tg level be measured? What was yout TSH when this last Tg was measured? I'm assuming it was while you were off thyroid meds and going hypo in preparation for RAI.

    If you don't mind, I would like to know how your WBS turns out this week. Since you do have residual Tg, it will be "good news" if areas (preferable in your neck) light up on the scan. That means that any left over Tg in the body is still RAI-avid and will then be treated with the RAI. Having non-avid RAI tumor(s) leads to another "journey" with thyroid cancer. As I wrote on my other post, I have a 1cm, non-avid RAI, cervical spine tumor. I had approx 7 diagnostic tests (Ultrasound, CTs, MRIs, RAI, PET) to find it. I had beam radiation because nothing else would work and since the tumor sits in a life altering place I needed to treat it.

    Good luck and let me/us know how you make out this week.

    High Tg
    Butterfly -- thank you so much for your words of encouragement! I'm working hard at not going into panic mode. I'm focusing on the fact that it's early and there are many variables to be figured out.

    My next blood test is set for about July 19 (I assume we'll include Tg level). My TSH was 94 4 days before my RAI treatment dose. I know my TSH was rising fast because a rheumetologist measured it at 52 4-5 days prior. Yes, I was off meds.

    After TT on 5-17, I had been on 125mcg daily of cytomel. Went off on June 11. Started LID on June 11 and was very strict on it.

    I would be more than happy to connect with you after my WBS (Wednesday).

    I would be interested in hearing more about how you are doing also, including the beam radiation.

    And by the way, are you in Seattle? I am.

    Thanks again, look forward to connecting either on the board and/or off via email. Thanks for writing to me both times.

    Wayne
  • butterfly123
    butterfly123 Member Posts: 52
    #15
    wayneseattle said:

    High Tg
    Butterfly -- thank you so much for your words of encouragement! I'm working hard at not going into panic mode. I'm focusing on the fact that it's early and there are many variables to be figured out.

    My next blood test is set for about July 19 (I assume we'll include Tg level). My TSH was 94 4 days before my RAI treatment dose. I know my TSH was rising fast because a rheumetologist measured it at 52 4-5 days prior. Yes, I was off meds.

    After TT on 5-17, I had been on 125mcg daily of cytomel. Went off on June 11. Started LID on June 11 and was very strict on it.

    I would be more than happy to connect with you after my WBS (Wednesday).

    I would be interested in hearing more about how you are doing also, including the beam radiation.

    And by the way, are you in Seattle? I am.

    Thanks again, look forward to connecting either on the board and/or off via email. Thanks for writing to me both times.

    Wayne

    high tg
    Hi Wayne- good luck tomorrow. When I had my RAI last year, my TSH was 150ish. I actually felt fine until I had the RAI. How are you doing with your TSH being so high?

    It would not hurt to get your Tg tested on 7/19 although the number will not mean a lot. The Tg tests over the next 12 months will be ones to watch...and hopefully your Tg will decrease. If you don't mind, let me know how the WBS goes tomorrow. No I am not in Seattle. From what I have read, the university of Washington Medical Center is a very good research hospital.

    I am doing very well after my beam radiation. I had some minor side effects but I cannot complain considering everything. I have a 1cm cervical spine tumor - it's on my C2 in the dens area. I think it is in the absolute worst place on the spine to have a tumor. I have never had any lymph node involvement. This thyroid cancer bone tumor just decided to show up and luckily it was all detected by the Tg blood test. My tg was always undectable until 4 yrs post TT, my Tg went to 5 while on thyroid meds (Tg was 150 while hypo). I have a wonderful endo who was determined to find the Tg source. I had a bunch of diagnostic tests to find it and it was finally detected on a PET/CT. I get my first Tg test done next month...approx 3 months post beam radiation.

    BTW, I have follicular variant of papillary thyroid cancer. Do you have classic papillary or a variant?

    Do you have an e-mail address you can share?????
  • butterfly123
    butterfly123 Member Posts: 52
    #16
    wayneseattle said:

    High Tg
    Butterfly -- thank you so much for your words of encouragement! I'm working hard at not going into panic mode. I'm focusing on the fact that it's early and there are many variables to be figured out.

    My next blood test is set for about July 19 (I assume we'll include Tg level). My TSH was 94 4 days before my RAI treatment dose. I know my TSH was rising fast because a rheumetologist measured it at 52 4-5 days prior. Yes, I was off meds.

    After TT on 5-17, I had been on 125mcg daily of cytomel. Went off on June 11. Started LID on June 11 and was very strict on it.

    I would be more than happy to connect with you after my WBS (Wednesday).

    I would be interested in hearing more about how you are doing also, including the beam radiation.

    And by the way, are you in Seattle? I am.

    Thanks again, look forward to connecting either on the board and/or off via email. Thanks for writing to me both times.

    Wayne

    Wayne-
    Forgot to ask
    Wayne-
    Forgot to ask you....do you have Tg antibodies? Tg Antibodies can make the Tg result falsly higher or lower. From what I have read, there are only a few labs in the US that can get an accurate Tg result even if you have Tg antibodies.
  • wayneseattle
    wayneseattle Member Posts: 6
    #17
    butterfly123 said:

    Wayne-
    Forgot to ask
    Wayne-
    Forgot to ask you....do you have Tg antibodies? Tg Antibodies can make the Tg result falsly higher or lower. From what I have read, there are only a few labs in the US that can get an accurate Tg result even if you have Tg antibodies.

    Butterfly / update
    Thanks again for another nice email. And your update -- I'm so glad your Endo was aggressive and determined to find the reason for the elevated Tg. And sounds like the radiation treatments went well and hold promise. I'm hoping for the best for you.

    My WBS was uneventful. The tech said "same as the scan dose" pictures -- just brighter. She said she "might" have seen a little activity in the intestinal area and normally would have called the doc in to see if she even needed to take the pics but he wasn't around, so she took them anyway. I didn't talk to the doc.

    I don't have Tg anti-autobodies -- came out zero on test.

    However, I have asked my Endo if it's possible that a pre-surgery thyroiditis could be responsible for inflammation of the remnant tissue. She said "it's possible." That was over the phone and we don't meet til July 26.

    I asked b/c when I got diagnosed, I was having non-routine symptoms. Quickly enlarged thyroid and tender to the touch. Those don't usually go with classic papillary (which I have as far as we know thus far from path reports).

    I have read that when you have inflammation of tissue, the Tg goes up. So ... if I had cancer and a thyroiditis going on, then perhaps it helps explain the high (221) Tg post-surgery.

    I'm staying relaxed for now, thinking that it's early. The number might have an explanation and also might drop quickly.

    Feel free to email me at wurzer@comcast.net.

    thanks!
  • fefa5
    fefa5 Member Posts: 3
    #18
    butterfly123 said:

    RAI treatments
    Susan-
    As you probably know, it never hurts to get a second opinion and sounds like you are doing that. You are fortunate to have gotten your stimulated Tg down to 14 and that RAI still works for your thyroid cancer. And also fortunate that the thryoid meds are keeping your tg almost undetectable. As far as the number of RAI treatments, only a few hospitals in the US use RAI by dosimetry meaning that they give you the max amount without hurting you. I've read cases where a person has had 500 mc at one time. I wish that more hospitals would use dosimentry to save us the aggrevation of mutiple RAIs and the low-iodine diets, hypo systems, etc.

    I read on this post that someone had multiple bone mets. Typically bone mets give off higher tg levels. I have one 1CM bone met and my Tg is 150 (5 while on thyroid meds).

    I am glad you are getting another opinion. There are a lot of endos out there have no clue on how to treat advanced thyroid cancer like us. I switched endos about 2 years ago for that exact reason. We need to be educated about our cancer because we can go down the a treatment path that may not be the best.

    Best of health to you! Good luck with everything.

    Do you happen to know which hospitals?
    use the dosimetry? It's a term I've only heard one doctor (Kenneth Ain) refer to. He believes in a more aggressive approach and uses dosimetry but unfortunately he doesn't take any new patients at the moment.

    I have poorly differentiated thyca with innumerable lung mets. I just found out about the poorly differentiated part so I'm not quite sure what this does to the effectiveness of RAI but I do still show uptake after my last (2nd) treatment.

Discussion Boards