Taylor Update--The Bad News

[TaylorsMom]

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

[Jim Scott]

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

[ppearl214]

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

[GM]

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

[Patti]

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

[Brendalu]

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

[sgerrard]

The principal benefit of Cyberknife is that you get to keep a cool looking mesh mask:



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

[wendysig]

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

[ppearl214]

Hey Steve,
My mask was pretty kewl too!



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:



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

[Cheryl R]

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

[lori67]

Off topic for one second - Steve - why do you look like Pinnochio in that mask?   

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

[leapyrtwins]

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

[JulieE]

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

[Palace]

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

[chelsmom]

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