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Author Topic: The big black hole in my universe...  (Read 4812 times)

MLB57

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The big black hole in my universe...
« on: October 12, 2008, 08:49:45 am »
 ;D Is in the middle of my AN!!! Last Fall had 30 FSR at MassGeneral Hospital--just had my year MRI Oct 8 and Dr Loeffler said everything looks great!!  Black spot in middle of my (approx 1 cm) AN--it's stopped growing!! Next MRI in 1 1/2 years (April 2010)...  Life certainly is good!!! 8)

Mary from MA ::)
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1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

elliemae

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Re: The big black hole in my universe...
« Reply #1 on: October 12, 2008, 09:34:03 am »
Hey, Mary!!

Double YAYs for you!!!  (I just posted in the community forum too...)

Hope you spread your good luck to the rest of us!

Elaine
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MAlegant

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Re: The big black hole in my universe...
« Reply #2 on: October 12, 2008, 10:36:00 am »
Outstanding!  Congrats! ;D
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Jim Scott

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Re: The big black hole in my universe...
« Reply #3 on: October 12, 2008, 03:29:03 pm »
Mary:

Congratulations!.  Thanks for sharing the great news.  :D

Life certainly is good, especially when your MRI shows necrosis.  :)

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Sue

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Re: The big black hole in my universe...
« Reply #4 on: October 12, 2008, 07:48:11 pm »
That's about the only time a black hole is welcome!  Congrats!!   

*happy dance*  (Think Dancing With The Stars and lots of glitter!)

Sue in Vancouver, WA
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

ppearl214

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Re: The big black hole in my universe...
« Reply #5 on: October 13, 2008, 09:28:31 am »
GrammyMary!!!!!!!!! FAB news!!!!!!! A reason to celebrate at the brunch and have congrat huggles on reserve for you when I see you!!!!!!!!

Congrats, congrats!!!!!! :)

Phyl
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MaryBKAriz

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Re: The big black hole in my universe...
« Reply #6 on: October 17, 2008, 04:04:06 pm »
HOOOOOORAY Mary!!!!

I need to schedule my first post CK MRI and I really hope it turns out like yours! I am so happy for you!

Mary 8)
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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: The big black hole in my universe...
« Reply #7 on: October 17, 2008, 06:24:09 pm »
Excellent!!!

Congratulations!!!!

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MLB57

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Re: The big black hole in my universe...
« Reply #8 on: October 19, 2008, 09:55:33 am »
  ;D Dear Elaine, Malegant, Jim, Sue, Phyl. Mary and Jan,

Thanks from the bottom of my heart!!  :-* It is SUCH a relief knowing that the radiation didn't fail and that I don't have to think about what to do next....

Interesting, Jim, regarding "necrosis"--when Dr L said there is a black spot in the AN I offerred the description "necrosis" and he replied, "No", that he had heard that word used often, then he explained to me and the two interms with him that if I had "necrosis" my face would be paralyzed. He actually went into some explanation I didn't understand (and I am fairly educated on all this) so I kinda lost him. The bottom line is he said for all intents and purposes it is NOTgrowing but stopped short of saying it was actually dead (and that's when I mentioned necrosis...)  And having read some of his published articles the control rate is better in the beginning, I mentioned that to him and he basically said that wasn't really the case, and he gave me statistics indicating tumor control comtinued to be good after time..

Well anyway I need not have to think about all of this for a year and a half and if that MRI looks good then 2 years later another MRI...  So I am thankful instead of one day at a time I have 1 1/2 years at a time and hopefully more!!!

Looking forward to seeing everyone Nov 9 at Maxwell's Brunch!!!

Regards, Mary (AKA Grammy B)...  ::)
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1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

elliemae

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Re: The big black hole in my universe...
« Reply #9 on: October 19, 2008, 01:28:42 pm »
Hi, Mary
Being a bit concerned about what Dr L told you about "necrosis" and tumor death, I just googled "necrosis & radiation" and came up with some interesting stuff, like this definition:

radiation necrosis (RAY-dee-AY-shun neh-KROH-sis) - The death of healthy tissue caused by radiation therapy. Radiation necrosis is a side effect of radiation therapy given to kill cancer cells, and can occur after cancer treatment has ended.

From what you say he said to you, do you think this is what he meant?  I.e., not the death of the tumor itself, but a possible side effect (like a new disease affecting different or healthy tissue) that results from the radiation.  There were also several articles on this possible side effect! 

So, he and you were thinking about two different things, hopefully??!!  Because I like his answer if he said no to the necrosis of healthy tissue as a side effect of the radiation!

Amazing the info you find online!
e
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sgerrard

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Re: The big black hole in my universe...
« Reply #10 on: October 19, 2008, 01:55:13 pm »
Here is an unofficial comment on the use of the term necrosis. I believe that it is really meant to refer to a negative situation, but is often used more loosely when talking about radiation to mean shutdown of the tumor cells, i.e. the dark center of a tumor on an MRI.

Necrosis is the death of a cell by trauma, such as radiation, as opposed to the end of  the normal life cycle of a cell (apoptosis, if you must know). Much of the swelling that sometimes follows radiation is probably due to the necrosis of tumor cells, where cells break open and release unusual substances into the surrounding area, causing inflammation and swelling. Sometimes that can irritate surrounding tissue enough to damage healthy tissue as well.

So the doctor is correct to say that technically you don't have necrosis in the negative sense, but the dark center of an AN on an MRI is often referred to as necrosis in a good sense, meaning tumor cells that are shutting down, and are no longer enhancing.

At least that's how I understand what is going on. :)

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ppearl214

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Re: The big black hole in my universe...
« Reply #11 on: October 19, 2008, 02:55:06 pm »
GrammyMary

I noted this in the "Headache" Forum, in a post re: "MRI at 10 mos..."

Dr. Medbery recently did a post on the newer CK Discussion forum... I quote him below:

"Here is a link to what Dr. Medbery (who volunteers his time to answer patient questions) shared on the Cyberknife support board (http://www.cyberknife.com/Forum.aspx?g=posts&t=680).  He is noting this:

"radsrus  Posted: Tuesday, October 14, 2008 9:09 AM   
 
Joined: 10/10/2008
Posts: 17


 No growth means no growth. That is the goal of treatment when radiosurgery is used. It is impossible to define tumor death. We sometimes see something on MRI that looks like necrosis, but that is meaningless since it is not on a cellular level. If a tumor is growing, is treated with radiosurgery, and quits growing, it is reasonable to assume that the growth cessation is due to the treatment. Clinton Medbery, III, M.D. "


Hope this helps. Hang in there and see you at the brunch.

xoxo
Phyl
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MLB57

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Re: The big black hole in my universe...
« Reply #12 on: October 19, 2008, 03:07:24 pm »
 ::) Hi Elaine, Steve and Phyl,

Thank you for your explanations regarding necrosis... Yes I think we equate necrosis with tumor death but yes, I guess the bottom line is that the radiation has stopped the AN tumor cells from dividing and growing and that's the intent of the radiation therapy, to stop the growth....

You guys are all so good to me.  Thanks again...  :-*

Regards, Mary (AKA Grammy B)...    ;D

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1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

elliemae

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Re: The big black hole in my universe...
« Reply #13 on: October 20, 2008, 07:15:13 am »
And, I add my thanks to Steve and Phyl for giving further clarification!

You guys are all GREAT!

Elaine
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krbonner

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Re: The big black hole in my universe...
« Reply #14 on: October 20, 2008, 11:23:06 am »
Fantastic news, Mary!  We'll toast your black hole at the next brunch!

Katie
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diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)
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