ANA Discussion Forum
General Category => AN Issues => Topic started by: TaylorsMom on August 12, 2008, 10:50:07 am
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Hi again,
Taylor had another MRI last week. It had been 1 year since the last one. Unfortunatly, the tiny spot we hoped was scar tissue has grown. It is still very small. We meet with her surgeon to discuss it on Thursday. Looks like she'll be a part of the radiation club, too. It is dissapointing, but not devastating news. We allways knew their was a chance. Will it be GK or CK? I think when she finds out about the halo for GK, she will insist on CK.
I welcome your input as we decide. She will probably have it done over Christmas break.
Best wishes to you all,
Kathy
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Kathy:
I join in your regret over this unwanted development. I have no advice on radiation treatments but others will, I'm sure. I had FSR which was highly successful. I'm sure Taylor will rely on you and her doctors for the best direction to go from this point. I only hope that this apparently re-grown AN can be successfully destroyed, once and for all. Taylor deserves a break. For that matter, so do you.
Jim
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oy. :(
What the heck do I say Kathy? You all have been through enough of this journey (with many of us side by side with you during this road).... and let's get Taylor squared away.
Ok, let's try this... let's try the CKPatient Support forum (http://www.cyberknifesupport.org/forum/).
Now, look for Drs Medbery (noted there as radsrus) and Dr. Spunberg (noted as.... Dr. Spunberg)... now, both of them are well versed, trained and experienced on CK and GK and I would ask away to them both for their honest, professional opinions to any radio-question you may have. That forum is not solely dedicated to CK questions and the kind docs there (they volunteer their time to answer patient questions) will answer any radio-questions. Many of us here can share our CK and GK experiences.... and there, they will answer from a professional standpoint. Both will also read Taylor's films (no charge) so they have a better understanding as well (Dr. Medbery in OK, Dr. Spunberg in FL).
Suggestion.... ask them anything regarding the exact radio protocols for professional opinions. If there are questions related to specifics about either than we can answer from experience... well, heck... you know we are here to help.
Hang in there Kathy! And Taylor too!
Phyl
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I'm so sorry to hear about the re-growth after all she's been through. The GK headframe isn't a big deal...I'd suggest that she visit a GK cenetr and check it out. You are put briefly under while they mount the frame....after that you can't even feel it there.
I wish her all the best.
Gary
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so sorry for you both. regrowth is probably the thing we AN patients fear the most. It can't be as bad as the first though. pray to god for emotional strength. that's what i do to get me through. patti
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I am so sorry. Taylor is so young to have to go through all that she has already. I know that she is a fighter and a very strong young lady. I wish both all of the best and you are in my continuing prayers.
Hugs,
Brenda
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The principal benefit of Cyberknife is that you get to keep a cool looking mesh mask:
(http://stevegerrard.home.comcast.net/TheMask.jpg)
I had a great experience with CK at Stanford with Dr. Chang, who is also on the cyberknife forum, and also gives a free evaluation of MRIs. If I could pick again, I might choose Dr. Medbery because I like the personality he shows on the CK forum (plus his obvious expertise).
You have certainly had your share of bumps in the road, but this one really is going to turn out to be a small bump.
Best wishes,
Steve
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Kathy,
I'm so sorry to hear that Taylor has a regrowth what a truly rotten diagnosis. Cyberknife is, in my opinion anyway, probably the better choice of the two specifically because of the head frame. I also heard some really good things about Cyberknife when I was active in their patient support group. If you want to consult with one of the doctors there the website is cksociety.org. Drs. Medbery and Spunberg and the most active and are wonderful people. They're great about answering questions and will probably look at films or cds if you ask.
Wendy
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Hey Steve,
My mask was pretty kewl too!
(http://image1.frappr.com/pix1/i/20060405/f/5/a/f5aedd300bd19a7ead5bc58fd29e0be80_medium.jpg)
Where's MaryBKAZ with her Piratitude Mask?
Kathy, regardless of what you and Taylor decide on what to do... as you know.. and can see, we're all here to help you all get through this.... Please hang tough. Taylor comes from terrific "stock" from you and I know you all will get through this. You all have demonstrated such terrific strength through this all... I know this is the last thing you need right now, but we're gonna help get you through it. Please hang tough.
xo
Phyl
The principal benefit of Cyberknife is that you get to keep a cool looking mesh mask:
(http://stevegerrard.home.comcast.net/TheMask.jpg)
I had a great experience with CK at Stanford with Dr. Chang, who is also on the cyberknife forum, and also gives a free evaluation of MRIs. If I could pick again, I might choose Dr. Medbery because I like the personality he shows on the CK forum (plus his obvious expertise).
You have certainly had your share of bumps in the road, but this one really is going to turn out to be a small bump.
Best wishes,
Steve
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I am really sorry to hear about more problems for Taylor. Give her a big hug for me. I can't believe it has been over a year now since the Philly symposium and I was very glad to get to sit by you both at the banquet even if the music was so loud that talking was not an easy event. Hopefully you will get to come to Chicago next year and will be a much closer trip.
I wish her well with going to college and bet you both are excited and maybe a little nervous.
Good luck to her with going to college and having to face more treatment!
Cheryl R
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Off topic for one second - Steve - why do you look like Pinnochio in that mask? :D
Now back on topic... I think I already responded under the "good news" portion, but once again... good luck to Taylor. That poor girl has been through enough already! And tell her good luck in college!
Lori
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Kathy -
sorry to hear about Taylor's regrowth, but glad to hear (as you note) that it's disappointing rather than devastating.
Please keep us updated.
Jan
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First, let me say my heart goes out to her, and to you as a mother. Gamma Knife and Cyber Knife and Proton Beam all have somewhat different technologies and pros and cons. It's confusing! With so many years ahead of her I would consider talking to someone about the less used, Proton Beam technique, which spreads the treatments over 6 weeks, instead of the usual "one shot" or so deal with GK. It excels with odd shaped tumors, and is supposedly more precise then GK and CK by a factor of 10. I had surgery, but if there is regrowth...here's who I would call:
(some of this info may be redundant with the ANA list, although not many have/ address Proton Beam).
Massachusetts General Hospital
Proton Beam Therapy Center
Dr. Chakaravti
617 726 8650
http://neurosurgery.mgh.harvard.edu/ProtonBeam/
**top rated facilities or doctors for stereotactic procedures (Cyber or Gamma or LINAC or Proton Beam, etc):
UPMC (University Of Pittsburgh Med Center)
Charlene Web
412 802 3100
412 647 7744
Dr. Dade Lundsford (sp?)
Dr. Ladislau Steiner---University of Virginia Health System
434 982-0096
Tammy Cuda--Stereotactic coordinator
Sidney Kimmel Cancer Center
Baltimore, MD
410-614-2886
Loma Linda---supposed to be one of the best:
http://www.protons.com/index.html
Bill Friedman
University of Gainesville, Florida
Memorial Hermann Hospital
Houston
713 704 3365
Virginian G. Piper Cancer Center
Scottsdale, AZ 85258
480-323-1000
Peace,
Jules
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Hi Kathy and Taylor,
Let us know the measurements of the area.
I'm so sorry to hear about the spot being more growth. I was sitting here thinking that I wish it was so small it would be just a "wait and watch" situation. (if that isn't the case then it's great to get it all behind you once again)
We have become you extended family here and "cheer you on and up."
I chose Cyberknife at Stanford and I'm still pleased with the staff and care.
Thank you for posting and keeping us updated.
Take good care,
Palace
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Hi Kathy and Taylor,
I'm so sorry about the regrowth. This is so sad. Taylor, you have had such a tough time with this AN and pray that you will do well with radiation treatments. Chelsea had treatments which began 3 weeks after her 3 month hospital stay. Her residule tumor is still in the 2 cm range and they felt that it was best to zap it before it started growing again. She just had her 18 month radiation MRI and follow-up last Thursday. They said so far no change in size and that the center of the tumor is darkening, which is a good thing. Have you had a chance to discuss treatment yet? Chelsea's doctors felt that the Novalis (BrainLab) was the best route for her. 28 treatments in a six week period of time. If you would like any information on Novalis, someone, I think it was Kate, posted some information on this forum under 'Brainlab'. I don't know how to cut and paste it here for you. I think of you all often and am praying all goes well.
With all my best,
Michelle
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Kathy,
Sorry for coming in late.
As I'm in the regrowth category, i can empathise with taylor. She has been through too much at her age and now this. She will no doubt be bitter and angry but the best thing is to assure her that you are there for her (as I know you are). Medically, there isn't much that you can do but it's the love and affection and friendship that taylor will appreciate the most.
On the technical side, unless the re-growth is causing an issue or is dangerously positioned, you may be able to wait and watch. I'm in that camp. My regrowth is 19mm and i'm not touching it. They are very slow growing as a rule.
Don't be too hasty for further treatment if taylor can handle the emotion of the re-growth in her head. If she just wants to get rid of the growth then by all means, zap it.
It will be a tough ride for a little while longer yet and remember that we are here for cyber support.
Actually, it may help taylor to write about it to us and she can be as angry as she likes. Venting might help her.
Give Taylor our best wishes.
Laz
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HI,
I am sorry to be coming in here late. I am sorry to hear about this. The good news is that because they are keeping an eye on it and it can be done without surgery. I am not going to lie. This scares me more than you know. Eric's last MRI showed possible scar tissue too. I think he is going to have another MRI soon because he has been having face pain. You know my prayers are with you guys. This sucks for everyone but especially these young kids. Eric is still having coughing issues. He was so excited about a new job but worries about his coughing. So far they have been really good about it.
Hi to Michelle too. Haven't seen you for a while. Hope Chelsea is doing well too. The only thing I think of is Why ask why? There is no way to know.
I am so proud of these kids they are amazing and yours too will get through this.
Love,
Robyn
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Hi again,
It is still very small. We meet with her surgeon to discuss it on Thursday. Kathy
How did it go with the doctor visit?
Thinking of you.
Kate
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Hi all,
Her regrowth is about 3mm x 5mm. When she found out about the halo used with GK she said she really didn't care if she got GK or CK. I guess after all she's been through the halo sounded like a minor thing. She'll probably still have it done over Christmas break. Right now I think she's trying to concentrate on college and pretend there's nothing wrong. We'll see how she feels about it as the treatment gets closer. I feel a little guilty saying I'm happy to be an empty-nester. I need a break as I am her favorite dumpee for all her frustrations.
Thanks to all,
Kathy
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Kathy,
I hope you can have some quality "me" time. I also hope that Taylor has a successful semester in school. You deserve a break. I wish Taylor only the best.
Brenda
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Taylor sounds like such an amazing girl! I'm glad she's able to focus on school and being a normal college student.
You shouldn't feel guilty at all - this has got to be hardest on you! I can't imagine having to watch my child have to go through these things. I'd gladly have it be me anyday. Besides, if your daughter is anything like my oldest, just because she can't dump her frustrations on me in person, doesn't mean she can't do it by phone or e-mail! Enjoy the break for a little while!
Lori
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Kathy,
It's not often I agree with .... lori! :-*.... but Taylor just absolutely keeps me in awe! As for you...... you do what you need to do to regain some mental/physical strength. No guilts about her being at school. My thoughts... go book a medi/pedi and pamper yourself! You have certainly earned it!
hang tough and thank you for this update.
xo
Phyl
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how old is taylor?
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Aw, Phyl... it's not often ANYONE agrees with me! :-\
Lori
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Kathy & Taylor: I also feel awful about the news - Best wishes though on the (probable) CK. You guys are in my prayers.
Always good thoughts, Nancy
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Anne,
Taylor is 20. Her birthday is in March. She was diagnosed in January, 06 with a 4.8cm, right-side. After 5 weeks in the hospital, she came home with a walker. It was the day before her 18th birthday.
I have wished many times I was the one with the AN and not her. She is stubborn as a mule and doesn't always do the right thing but she has not given up on the rest of her life. I know if it had been me at the same age as her, I wouldn't have handled it as well as she has. Probably not even close.
Kathy
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Hi Kathy,
I am the mother of a teenage, college, 4.5+ CM AN survivor also. I am sorry this happened. Eric was also told on his last MRI that there may be some scar tissue. I am right there with you. I just know that she is going to be fine. I am thinking of you both. You are right these kids are amazing. I too wish I was the one with the AN. And give yourself some credit. Your couragous daughter handled this amazingly and part of that was because she had the support of her mother who has been right there with her. I know Eric understands that sometimes and he vents with me too. It is almost harder being the one who watches. No offense to you guys but it is hard at times. And it would have been hard for her to watch you go through it too.
I still don't know how I made it through that 13 hour surgery and the aftermath.
Peace and Love,
Robyn
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Hi Kathy and Robyn,
I agree with you both that it is as difficult watching your child go through this as it is to have an AN yourself. Kathy, I think you'll be amazed how well Taylor will do being amoungst all her peers away at school. Her frustrations will probably change and be more about her classmates, professors, and roommates than herself. When Chelsea went to live in the dorms last spring she was thrilled. She learned her limits really fast and at times came home to get some TLC and rest. It is great being an empty nester. I don't feel quilty at all. There is always going to be a need for a shoulder to cry on and this is true with any child with or without an AN. Our kids just get extra sympathy, as they should, because of all the additional trials they have gone through and will go through for the rest of their lives. We know that this is never going to go away.
She now has moved into a large house with 5 other girls, 2 undergrads and 3 in grad school, and she loves it. Today was her first day of school (second year), she works part time and coaches a girls 12 year old AYSO soccer team. I encourage her to do everything and anything she can physically and emotionally handle. To live each day to the fullest and appreciate every minute of it.
I know Taylor is going be great. These kids are fighters.
Robyn, I'm sorry to hear Eric is still having coughing fits. Chle's gets those too although not as often as she once did. She is going to see her surgeon that did her vocal cord surgery in a few weeks for a follow-up. If I learn anything new about this problem I'll let you know. Has Eric seen anyone else for a second opinion?
You Mom's stay strong. We have to be there to bolster them when needed.
Take care,
Michelle
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Taylor and Mom,
I am humbled by both of your stories, Taylor's for her enduring the AN and all that comes with it and Mom for yours as watching your child deal with serious troubles such as an AN makes it doubly difficult. We don't want any hurt to come their way, we try to prepare them for "the worst case scenarios", but then the "curve ball" comes their way.
Mom, ti sounds as though you have done an awsome job teaching her "life lessons" as her attitude toward deciding GK or CK sounds positive. And the fact she "dumps" on you says you've done a great job as she feels that comfortable with you! Yes, Taylor could've given up, but she heard your words somewhere down the road and put them into practice.
Taylor, I am awed by you as you are young to be dealing with this, in college forging ahead with your future says you look ahead to a bright future for yourself. May you have death to your tumor! May you have good health, may you have peace, may you have love, and may you have a long, long successful life!
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Robyn,
You don't have to worry about offending "the rest of us". I think we can all agree that we'd rather be the one dealing with this than the one having to watch your child go through it. You guys have the hardest job. Hopefully everyone going though this has someone by their side to be as supportive as you Moms have been to your kids.
Lori
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Lori -
I will agree with you on this subject too. I can't imagine how I would feel if this happened to one of my kids instead of me. I would rather have ten ANs like mine or worse myself than see it happen to one of my kids. This thing is so much easier when it happens to you instead of a loved one.
Wendy
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Kathy,
It breaks my heart to hear such news. I'm sure anyone can truly understand who is on this forum. Please give Taylor my condolences. I'm sure it will be nothing like the first time around. How god-awful that was...
All my hopes.
Chris