Second RA131 treatment 6 months apart

denyse
denyse Member Posts: 17 Member
edited March 2014 in Thyroid Cancer #1
My 20 yr old daugther who has early stage papillary Thryoid cancer with slight lymph node pathology on two of 4 nodes, had RA 131 on 12/18. The uptake way mysterious and they decided it was either thyroid stunning which RARELY (only one docummented case ever)occurred from her RA123 next day R131 (150 mc) OR it was a fast transit and may not have done the job. They are not sure so they are doing TSH, thyroglobolin, T3, T4, calcium, today (6 wks post RA131)to see how high the numbers are. AND the are doing a baseline ultrasound this week. The nuclear med doc presented her case to a tumor board mtg at his university today and they agreed very unusual fast transit appeared. SO, he said we could do another RA131 without a prescan in June (6 months) or in a year. IF the TSH is between 30-50 and Thyrogloboin is over 5 in June 6 wks off meds and hypo. IF those numbers are still high, he will do another treatment.
Does anyone know if it's safe to do another RA131 in 6 months? And if it's recommended based on these findings? She didnt have any other areas of her body that showed any uptake issues. Just neck and an area that was questionable.
IF her pre scan/treatment hypo (off meds 6 wks and LID 2 wks)TSH or thyroglobin number was 29, what should it be 6 wks post RA131 to tell us the RA131 is at work and would mean we may not need another treatment.
This is a nuclear med doc so I'm wondering if my endocrine would agree or have a different opinion. Also, how prevalent is it for a second RA131 to take place in 6 months? I'm just not sure the nuclear med doc is the guy to determine this treatment... confusing.?? Any feedback appreciated.

Comments

  • tonnabeth
    tonnabeth Member Posts: 2
    #2
    Denyse,
    I would definitely check with your endocrynologist before I would go through another round of RA 131. I had a total removal due to papillary thyroid cancer. I had 2 doses and my parotid and salivary glands fused together. I have gone through 2 more surgeries and the doctor has put 2 different stents in my gland to try and "unfuse" it. I still have the second stent in so we still don't know if it will work. Be careful and God Bless you and your daughter.
  • redbonegirl
    redbonegirl Member Posts: 2
    #3
    Hi Denyse,

    I'm probably too late to make any comment worth anything to you, but I did want to share with you that the Radiation Oncologist that I see also sets up 6 months between rounds of RAI. They gave me the warning in advance that if for some reason this did not go right, they would not be able to repeat it until 6 months.

    now all of my repeat scans are schedule so that if i need additional RAI it's right at 6 mos.

    i wish you the best of luck. If you have a chance i would really love to know how your daughter is doing?

    Have the best Tuesday ever!
    Kitt
  • denyse
    denyse Member Posts: 17 Member
    #4
    redbonegirl said:

    Hi Denyse,

    I'm probably too late to make any comment worth anything to you, but I did want to share with you that the Radiation Oncologist that I see also sets up 6 months between rounds of RAI. They gave me the warning in advance that if for some reason this did not go right, they would not be able to repeat it until 6 months.

    now all of my repeat scans are schedule so that if i need additional RAI it's right at 6 mos.

    i wish you the best of luck. If you have a chance i would really love to know how your daughter is doing?

    Have the best Tuesday ever!
    Kitt

    Hi Kitt,
    Thank you for your email. Since my post i have learned that her tg is down to .4 since her treatment so it does imply it probably worked.However, to be on safe side, they are going to do a full hypo prep bloodtest to be sure tg is undectible then if it is NO TREATMENT. YES!! .4 is real good 6 wks post ra131. I hope she can get on without another full hypo prep for a good long time. two in 6 months is a lot of feeling crappy. Thanks for your kind email. We are ready in the event she needs the treatment though. As long as she can close the thyca chapter of her book of life, then if another treatment is required, we can live with it.
    Thanks again and all my best to you! DP
  • denyse
    denyse Member Posts: 17 Member
    #5
    https://csn.cancer.org/discussion/comment/595281#Comment_595281

    not sure if you’re still on here, but fast forward 17 years and my daughter made out well until last week and has a recurrence found in ultrasound inn cervical neck. Biopsy tomorrow. Oddly her TG was perfect under .1 and her antibodies are negative. Not sure but thought the TG was the indication of recurrent disease. How did that happen! Very odd thanks for your kind email

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