- Re: Re:new member

[Guest guest]

Hello, -

Welcome to the group!

You have certainly been through the ringer!

I'm not a doctor, but I would say that if your thyca came back in 7 months, most

likely it's not a recurrence, but cancer that wasn't killed off the first time.

I'm posting separately a letter

from Dr. Ain (one of the monitoring doctors on this list), listing the most

likely reasons for RAI ablation to fail.

I have some questions for you -

- You say you had a " very high dose " of RAI - do you know what that dose was?

- When was your follow up scan?

- At .425 mcg, you may win the prize for the highest dose of levothyroxine of

anyone on the list!

If it's still not enough to suppress your TSH, the first thing that comes to my

mind is - how are you taking it? Most of us never received proper instructions

for taking it - empty stomach is

the most important instruction; but I will copy a list of considerations

separately, also written by Dr. Ain.

I believe it is possible to have a metabolism such that you simply require a

very high dosage, but my understanding is that that's rather unusual.

- Did you by any chance have a CT scan as part of your diagnostic testing? If

so, the contrast is generally high in iodine, and may well interfere with RAI

absorption.

-

NYC (TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; current TSH ~.06 on .225

levothyroxine)

devtoth@... wrote:

> Hi all, I am new to this e-mail group although I have been on the thyca

> website before. I am a 25 year old mother of a 3 1/2 year old little boy,

> who has had more than an eventful year. After having my gallbladder removed

> in July, a massive benign liver tumor removed in October, I was diagnosed in

> April 2001 with papillary thyroid cancer (found in a round about way), under

> went a total thyroidectomy and a very high dose of radioactive iodine. I was

> considered a stage 3 papillary carcinoma. My cancer had started to spread

> beyond the thyroid capsule but had not yet reached the lymph nodes. I had my

> follow up scan and everything looked good. I thought this whole entire ordeal

> was over. I too went through the wretched no iodine diet, trouble regulating

> my thyroid replacement meds (started on synthroid at 125 mg's and now am at a

> whopping 425 mg's of levoxyl which is still not suppressing my THS to where

> it should be). I have had such a complicated story I will be open to go over

> it in more detail with anyone who would like to share. I was doing fine

> until I had awoken with major pain on my salivary glands in November. (for

> those of you who have had iodine, you may recall this being a problem for the

> first few days after treatment) I could not eat, talk or sit without a

> piercing pain that shot across my jaw and my ear. I went to several doctors

> who told me it was probably just an infection. Well, after weeks of

> antibiotics doing nothing I finally persuaded an ENT doctor to order an MRI.

> My MRI showed enlarged salivary glands, and lymph nodes. Next step was

> another biopsy, this time of the lymph nodes. It came back as papillary

> cancer in the lymph nodes. I was so devested. I knew there was a chance

> that this could come back someday but never this soon, and in this form. I

> just had a radical neck dissection 6 days ago. Almost all 200 lymph nodes in

> my neck were removed. I just had my drains removed and I have staples instead

> of sutures (due to an allergy- told you I have a long story!) I am doing

> O.K. but I am SOOO swollen. My face looks like a frog with the pouch that

> blows out when they ribbit. I am not thin to start with so this is not an

> attractive site. I would be open to talk to anyone who has undergone a neck

> dissection. I will be going for another massive dose of radioactive iodine

> in about 3-4 weeks when I begin to heal. If anyone would like to e-mail me,

> let me know what I can expect in the weeks to come, words of wisdom, or

> encouragement would be greatly appreciated at this most difficult time. God

> bless you all who are truly the only ones who can understand what we really

> have to deal with on a daily basis dealing with this cancer!! Thanks for

> listening-