One patient with glioblastoma still alive nine years later
by bikerbabe7796 on Tue Nov 13, 2012 06:11 PM
New to this site looking for support and friends that know and understand what i am going thru.
Diagnosed papillary in 2011 with cancer in 5 out of 9 nodes. Had radiation after going thru hypo hell for almost 2 months. declared cancer free in june 2011 and about to have my 1 year re-check with thyrogen shots (had nu in july and they found suspious nodes, moved to florida so had to wait to follow up) needless to say i am scared poopless.
I start the LID tomorrow and have to stop my levothyroxine on the 24th. thyrogen shot on the 26th and 27th, radiation on the 28th (my b-day, great present NOT) and WBS on the 30th. Nervous about the shots (side effects) and since i had a bad experience with the radiation the first time im nervous about that and unfortunatly have a major problem with the WBS (had a panic attack last time).
So yes i am a mess emotionally and hoping to find people that can relate to what i am going thru on this next step in this journey.
by tink2002 on Tue Nov 13, 2012 09:45 PM
Hi. Sorry you are dealing with this, but glad you found this site.
I have had thyrogen 3 times and never had a side effect from them. there are others that have, but it is by no means the usual. no matter what, it HAS to be better than going hypo, right????
the RAI used for the scan is much less than what is used for the therapeutic dose. The scan is usually about 4 or 5 mCi and carries far fewer precautions. The therapeutic dose can be from 50 mci and up (mine was about 150).
I too panic during the scan. These things have helped me...
someone there keeps their hand on my upper arm until the scanning plate is past my nose. One group turned on a small fan so that I could feel cool air at all times and they insisted that I keep my eyes closed. that was very difficult. Sometimes, someone will just sit and talk with me until my head is free of the device. I pray. alot. I don't know why, but just knowing someone is there really helps me. Because I know that it isn't going to collapse and smother me, but I sure feel like it is. Best of luck to you!! I'll be thinking about you. Please let us know how it goes.
by bikerbabe7796 on Wed Nov 14, 2012 03:40 PM
Thank you for the reply Tink and for the helpful info. I am hoping my husband will be able to be here for the scan but its unlikely (hes a truck driver and gone ALOT) but hoping one of my family members can go with me. Time will tell!
So the lower dose for the radiation does that mean i wont have the same thing happen as the first time? Like feeling like fur is growing on my tongue. That was about the worst thing that happened.
Having a bad day here today so i will leave it at that before i just start rambling on.
Thanks again for the reply!!
by mickchic on Thu Nov 15, 2012 08:46 PM
Sorry this is so scary for you.
I had my thyroid removed in 1985 and then had a reocurrence in 2009. I had 21 nodes removed followed by radiation. I have done a recheck every three months up until August of this year when they finally had a zero reading and decided we can switch to yearly rechecks. With all of those initial test and rechecks I did thyrogen shots and never had a problem.
My understanding is that side effects are very rare because of the low dosage. As for being scared; when I had my last MRI they gave me headphones and put the radio on a station I liked. That made the time go much quicker which was nice.
I hope everything goes well for you and that despite the test you have a very happy birthday!
by tink2002 on Fri Nov 16, 2012 12:50 PM
hi, again. If you are just having a follow up scan you will most likely receive a MUCH smaller dose of RAI. I was never able to bring anyone in with me for any scan (?), but when I made my claustrophobic fears known, someone on the staff was always willing to stay and reassure me. don't feel bad telling them. Most of the people there are doing that job because they want to help people. I'm sure that you aren't the first one they've seen to be uncomfortable with the situation. Also, I did notice that the more scans I had, the anxiety dropped a bit. Knowing exactly what to expect helps me a bit .... at least after the scanning plate passes my face!! best to you. ;)
by bluefiregreen on Sat Nov 17, 2012 02:04 AM
I wish I had some advice for you from my own experiences but this is all new to me. I can tell you that you are not allone. I share your fears, but I believe that sharing those feelings makes them easier to conquer. I had my TT last week and when this phase of recovery is over I will start my radiation and WBS. I too am an emotional wreck and relate totally to how you feel. Good luck to you. Don't fret about your Birthday, consider your gift to yourself to be one more kick at your cancer. Remember radiation is worse for your cancer than it is for you ;)
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