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Old 07-11-2012, 05:06 AM   #2041
Christine
Would love to be able to sit on the couch for a few days, get a good book, and do NOTHING!
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Originally Posted by luvmarypoppins View Post
Went for my sono yesterday. I had my usual girl and surprisingly she was so pleasant and nice this time.

She said that everything looks good after she took my pictures to the radiologist.

So since I didnt need any more views I am assuming all is well. But of course we have to look at the blood test numbers etc.

I am so exhausted teaching bible school. We have 15 kids and my helper is such a super lady. She does everything to help me that I cant do physically. She is a blessing for sure. I am getting to know her more. Amazing how you see someone briefly on a sunday and dont get to know them too much etc.

Endo on Monday.
Sounds like a good visit!!!

Hey, when are you going to be in Disney? I'm toying with the idea of going with my DD at the end of July. She's already going but I'm on the fence. Probably won't go but it'd be fun to meet up for a short time if we are there at the same time.
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Old 07-12-2012, 07:35 PM   #2042
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You've got it!
The second surgery went much better than the first. It is now a year later and she was told she will get radioactive iodine treatment in August. We had asked about it shortly after the surgery and they said it wouldn't so any good then. I know there are many types and variations of cancer so I guess we'll go along even if we don't understand why. I've thought of you all and your emotional support of us even when you're going through trouble yourselves. I really appreciate you all so much even though I don't come to these boards much anymore.
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Old 07-13-2012, 06:57 AM   #2043
Christine
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The second surgery went much better than the first. It is now a year later and she was told she will get radioactive iodine treatment in August. We had asked about it shortly after the surgery and they said it wouldn't so any good then. I know there are many types and variations of cancer so I guess we'll go along even if we don't understand why. I've thought of you all and your emotional support of us even when you're going through trouble yourselves. I really appreciate you all so much even though I don't come to these boards much anymore.
Can you let me know what part you all are not understanding? Maybe we can all clear it up a little?
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Old 07-13-2012, 09:57 AM   #2044
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GranFan- it sounds like maybe you don't understand why she couldn't have radioactive iodine right after surgery? Her body will need to be clear of the thyroid hormone her body was producing before the RAI. Also, they told me that it might cause my incision to rupture if it wasn't fully healed, but I don't really trust the doc who said that, so...
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Old 07-14-2012, 03:00 PM   #2045
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I thought that if any cancer cells were left after surgery it would be better to go ahead and treat them before they could multiply or spread. I didn't know about being clear of thyroid hormones first. Now, she is afraid of side effects of the RAI.
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Old 07-14-2012, 03:17 PM   #2046
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Well, it is best to do it shortly after the surgery, but a few weeks will help, not hurt. They want any remaining thyroid tissue to be 'hungry' for the RAI.

Do you know what dose of RAI she will be getting? My first one was not so bad, but the second one was a doozy. The effects are cumulative, so I think I would have been better off all around if they had done my first dose at a higher level, but hindsight is 20/20. It's hard to know, they want it to be the lowest effective dose....Anyway, tell her not to be scared of the RAI, it will be ok. Do you know if she is going to be getting a drug called thyrogen? It allows you to stay on your synthroid while you do RAI, and being off the synthroid was far, far, FAR worse that the RAI was.
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Old 07-14-2012, 08:57 PM   #2047
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Well, it is best to do it shortly after the surgery, but a few weeks will help, not hurt. They want any remaining thyroid tissue to be 'hungry' for the RAI.

Do you know what dose of RAI she will be getting? My first one was not so bad, but the second one was a doozy. The effects are cumulative, so I think I would have been better off all around if they had done my first dose at a higher level, but hindsight is 20/20. It's hard to know, they want it to be the lowest effective dose....Anyway, tell her not to be scared of the RAI, it will be ok. Do you know if she is going to be getting a drug called thyrogen? It allows you to stay on your synthroid while you do RAI, and being off the synthroid was far, far, FAR worse that the RAI was.
Back in my day of thyroid cancer surgery (20 years ago) they didn't have the thyrogen option and being off the synthroid was worse than the actual surgery. I opted not to have the RAI because scan came back just over 2% and I literally could not put myself through a week of isolation at the state I was in without the synthroid, plus I had questions on the effects it might have on ovaries etc (having not had children yet).
Today things are so different and I probably would have had the RAI treatment with no issues at all.
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Old 07-15-2012, 06:07 AM   #2048
Christine
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I thought that if any cancer cells were left after surgery it would be better to go ahead and treat them before they could multiply or spread. I didn't know about being clear of thyroid hormones first. Now, she is afraid of side effects of the RAI.
Granfan,

Most people don't have the treatment immediately after surgery. I had my surgery in August and didn't have RAI to right before Thanksgiving. My surgeon wanted me to wait long enough to recover from the surgery, get my bearings, and have my neck heal a bit. I was much younger the first time when I went off my medication for the scan (no Thyrogen back then) and I worked right up until the treatment, went to the hospital on my lunch hour, had the RAI dose (it was a "walking" dose") and drove myself home. I did start to feel kind of bad after that but nothing more than a mild flu. The larger doses (which I had later) did cause me more issues, heck, probably more issues than most. But, tell her not to be too afraid. The "worst" of it is going to feel like she's got a good case of the flu without the fever.

If she's concerned about long-term effects, there is a report increase of other cancers way down the road but that is for successive doses that are large (yep, like I had) and the causation is still sort of "loose" there. I've not personally heard of/met anyone with thyroid cancer that had that happen.
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Old 07-15-2012, 12:29 PM   #2049
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I also read once that they aren't sure if cancer patients get more cancers, or if we are just monitored much more closely than average, so our other small tumors tend to get found.
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Old 07-15-2012, 04:56 PM   #2050
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Thanks for all the info. I will pass it along to my daughter. I don't know if thyrogen will be used or not. I hope she will get more information on how they intend to treat before she decides to let them do it or not. She is a second grade teacher so she may have to be out for a few days. Also her last surgery was March 2011 and that seems like a long to wait to me.
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Old 07-16-2012, 07:54 PM   #2051
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Granfan - wishing your dd all the best. I am one for thyrogen instead of going hypo. I guess you dd will have to ask her care team what method they will be using. I guess if her ins. covers thyrogen and they can get it for her it would cut down on alot of tiredeness, withdrawl etc. Do you live near her that you could help her out?

Update on me: went to the endo today. She said my thyroglobulin is undetectable, my tsh is .63, is that .63 or .063??

Anywho, she said that the tsh was my lowest number yet, so she is really happy and she is keeping my synthroid at 150 and probably will not lower it any more. I told her how tired I was. etc. No comment from her other than that is always a problem for you etc. She did not like that I gained 11 lbs. or maybe 8, I cant remember. I dont know, I think its because I dont exercise because of all my back pain and hip trouble etc. I cant remember what it was at the onc. in May but I cant believe I gained that much weight in such a short time etc. Very strange.

So next month she wants me to get a bone scan to see if the reclast worked. If it did, then I have to have another reclast infusion and if the bone scan is not good then she might try a different med to slow down the osteoporosis etc.

So other than the infusion in Nov. and the bone scan next month, I am good to go until Jan. so far.
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Old 07-16-2012, 08:50 PM   #2052
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Has your potassium been checked at all? Mine was low, and it can be caused by high doses of thyroid hormone. Taking a supplement for that has really helped with tiredness, specifically tiredness in my muscles when I move.
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Old 07-17-2012, 04:50 AM   #2053
Christine
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Quote:
Originally Posted by luvmarypoppins View Post
Update on me: went to the endo today. She said my thyroglobulin is undetectable, my tsh is .63, is that .63 or .063??

Anywho, she said that the tsh was my lowest number yet, so she is really happy and she is keeping my synthroid at 150 and probably will not lower it any more. I told her how tired I was. etc. No comment from her other than that is always a problem for you etc. She did not like that I gained 11 lbs. or maybe 8, I cant remember. I dont know, I think its because I dont exercise because of all my back pain and hip trouble etc. I cant remember what it was at the onc. in May but I cant believe I gained that much weight in such a short time etc. Very strange.
It's .63. You can have a TSH of .063 but it would say that. A .63 is a good number to have. Mine is around .3 to .5 on any given test.

LMP--I can tell you--at age 48, I am to the point that I do feel pretty awful when I don't exercise. I have NEVER been an exerciser or athletic or even interested in doing much in my life. I was always very naturally thin and felt good so I never concerned myself with it. I have felt that starting at around age 43, it is the first time in my life that I have noticed myself going "downhill". Each year it gets worse. I have had to REALLY force myself to exercise. As much as I hate to admit it, it works. Now, it doesn't work right away but after about 4 weeks of gentle walking and building up to it, I notice that I have more spring in my step. Now, of course, everything hurts more, but it's kind of a good hurt.

I also gain weight very easily now. I went back on to sparkpeople.com and started logging everything I ate. I was shocked to see that I was eating around 2500 calories a day. I didn't *think* was eating that much but it's easy to do. So I managed to really tweak my food intake since I was now aware of it and that really help me too. I won't say I *dieted* but I definitely cut down some things.

You have to be really motivated to start both of those things so if you get to the point that you are feeling so poorly, you might want to give that a try.
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Old 07-17-2012, 08:17 AM   #2054
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Quote:
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Has your potassium been checked at all? Mine was low, and it can be caused by high doses of thyroid hormone. Taking a supplement for that has really helped with tiredness, specifically tiredness in my muscles when I move.
I agree about the potassium stuff. I always have problems with that and leg cramps at times.

She did a basic metabolic panel, so I dont know if that is included in there for testing etc.
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Old 07-17-2012, 08:23 AM   #2055
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Well the endo knows I really cant exercise due to all my back surgeries and I am sure my hip is barely holding on right now with all the pain I am having.

I think the only thing I could possibly attempt is a treadmill at home. I dont even want to walk in the street for fear of falling etc. I dont even have a good balance anyway.

Oh she also said I have to have another bone scan (dexa) in August. She said hopefully my number will be up and then I will get another reclast infusion in Nov. If the number is not up, then she will have to switch me to some other med or infusion to keep the osteoporosis from getting any worse too.

I really hope the number is up because after the horrible reaction I had to that first infusion I cant even imagine what another med would be like. She did say if I have this reclast infusion again I should not get the horrible reaction like I got before, yeah right. We will see about that for sure.
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