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Old 03-03-2005, 01:40 PM   #1
jojo
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Hi all,

I had mentioned in an earlier post that I was supposed to have a brain brachytherapy this week. Actually, I was to have my brain met to be taken out & REMOVED, then if surgery lab analysis indicated a live tumor, not dead tissue, then the brachytherapy would be performed. Sorry about the confusing info!

Here's the latest scoop:

I literally met with neurosurgeon & radiology oncologist the day before, just in preps for the upcoming surgery. I ended the day with a head MRI follow-up. Luckily for me, I had asked if I could pick up the MRI results right afterwards. The same radonc, from the earlier pre-op meeting, told me to come back to his office, so he was nice enough to hang out with me, as we then went over the films.

At the suggestion of the surgery postponement / cancellation, they are saying that the dot could be radiation damage, not a tumor. I have to wait an extra month, before taking another MRI follow-up.

Also, the MRI just indicated that the edema is completely gone. So, I asked to taper off Decadron totally. Haven't got that approval yet.

I'll keep you guys posted.
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Old 03-03-2005, 03:46 PM   #2
Mickey
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Sounds like good news to me. I originally had been told 3 tumors. 2 turned out to be vessels. The other was zapped. And no longer exists. A new spot showed up but did not grow and they think that is nothing too.
Mickey
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Old 03-03-2005, 05:10 PM   #3
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:) HOORAY FOR JOJO~!
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Old 03-03-2005, 09:23 PM   #4
Lolly
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I second that emotion, HOORAY!!!
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Old 03-04-2005, 06:27 AM   #5
Cindi
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IT ALL SOUNDS GREAT TO ME!!! You're moving in the right direction with everything. Sounds like you have a wonderful medical team working with you.

God Bless,

Cindi.
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Old 03-04-2005, 08:03 AM   #6
*_celina_*
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This sounds encouraging, Jojo! You must be relieved.
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Old 03-04-2005, 08:52 AM   #7
al from canada
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Dear Jojo,
That sounds like GREAT news to me. Congratulations!!!
Al
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Old 03-04-2005, 11:18 AM   #8
StephN
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JoJo -
I sure hope the next MRI shows that spot continuing stable. I still don't quite get the "radiation damage" part. Have not heard of that in any of the research I did prior to my GK. (That it would mimick the tumor growing back.) But, I know that I got some "radiation flare" in my right chest area long after finishing my 36 rads, so maybe this is something like that.

The best part is getting off the Decadron - nasty old pills!
You will start to feel better about a week into the taper and it will go uphill from there. Takes a while to get the stuff out of our systems. My face and neck are almost back to normal after 3 weeks off the pills - no more "chipmonk cheeks" and jowels.
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Old 03-04-2005, 05:03 PM   #9
Isabelle
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Excellent! Thank you for sharing your news. Sounds like you have a good set of doctors who are on your team.

I am just two weeks into having brain mets and want as much info. as I can get about how people are doing.

I am in whole brain radition right, finished 5 of 20 days.

I did hear about the possiblility of damage from radiation. Since I had two smallish mets that were asymptomatic, we chose to do a radiation of smaller doses over 20 days instead of 10 or 12 big hits of radiation as I was originally told to do. The radonc at Dana Farber thought that would be less damaging.

I hope your next MRI is good news.
Isabelle
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Old 03-05-2005, 08:14 AM   #10
jojo
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Quick update: I just got approval to taper off the decadron completely in 3 weeks, yea!!! :-) Then another head MRI follow-up in 1st week of April.

Your prayers & positive vibes much appreciated! Thanks :-)
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Old 03-06-2005, 04:11 AM   #11
Sheila
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JoJo
Great news! That gives us all a boost!

Hugs


Sheila
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