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tink2002's Recent CancerCompass Activity

  • tink2002 has replied to a post on the message board

    Back in the olden days (2008), I had RAI 6 weeks after the surgery, with no meds at all during that time.  I felt pretty awful both physically, mentally and emotionally.  I started levo 10 days after the ablation and felt MUCH better by the end of that week.  Since then I have had thyrogen for a couple of scans and the difference is absolutely amazing.  Follow the doc's guidelines: drink as much w...

    October 22, 2015 view post
    • tink2002 has created a new message board discussion

      hello, everyone.  I am preparing for my follow up rai scan.  It is my first in 5 years.  So much has changed!!  I was pleased to hear that it is more common to get the thyrogen shots now and that most insurance covers at least a part of it...  What surprised me the most was the relaxed rules for LID.  When I had my first follow up scan 7 years ago, I followed the thyca LID guidelines.......

      May 29, 2015 view discussion
      • tink2002 has replied to a post on the message board

        hi.  I'm no expert by I know a couple of people that had lobectomy and they are all on meds.  Wondering what kind of doctor you are seeing????  Did you make a strong case to the doc about just how awful you are feeling??  Who will be handling your care?  Primary?  Endo?  still using surgeon?

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        • tink2002 has replied to a post on the message board

          Hello.  Just throwing in my 2 cents... My doctor stepped me down an even smaller amount and I called to tell him how awful I felt.  I insisted that he had changed me to the wrong dose.  He put me back up to the original dose and then lowered the amount much more gradually.  He cut me by 1/2 pill 1x per week and then 2x/week and then recalculated and gave me a lower dose.  I barely noticed the...

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          • tink2002 has replied to a post on the message board

            HI.  Several of us have had similar sounding issues after RAI.  I myself had it after the 6 month scan.  I also noticed that when I ate (or drank) anything sour  or tart(lemonade, grapes, citrus) that there was some pain involved.  It may be a small swelling/blockage of a saliva duct.  Here is what worked for me: warm compresses (wash cloth with warm water) on the area  2x/day. &nbs...

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            • tink2002 has replied to a post on the message board

              LOL

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              • tink2002 has replied to a post on the message board

                I am very happy ( and very jealous!) that it worked out for you.  I have no idea if they lie or not, I just know that I was hugely disappointed that they told me there was nothing I could do if the shots weren't covered.... my endo tells me that none of his patients use thyrogen because the cost is so steep.  I guess we could all be lying, but to what end?

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                • tink2002 has replied to a post on the message board

                  butterfly, I admit that you know a quite a bit, but I guess you don't know this.  I am covered by Humana (whom I consider to be large) and they would not cover the thyrogen.  When I called genzyme they had no desire to assist me.  Nor did walgreens, my hospital, my doctor or anyone else I contacted.

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                  • tink2002 has replied to a post on the message board

                    While I have to agree with butterfly, I have gone 6 weeks without thyroid hormone.  The surgeon was withholding meds so that I could have RAI 6 weeks after surgery.  Now, this was 6 years ago and since then most docs use thyrogen instead of making us go hypo.  That being said, thyrogen is quite expensive and depending on your insurance....well, if I ever need a scan again, I'll be going hypo again; I c...

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                    • tink2002 has replied to a post on the message board

                      hi.  I am not sure if all biopsies are the same, but I was up and back to normal as soon as the needle was out.  I had no residual effects and drove myself home safely and comfortably.  Wishing you the same ;)

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