Author Topic: Age related radiation question from newbie  (Read 12343 times)

ppearl214

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Re: Age related radiation question from newbie
« Reply #30 on: March 27, 2008, 08:03:49 am »
Hi Phyl,  Thank God for you and the others on this board who take the time to make others feel sooooo much better with your experiences.  Could you direct me to the topic where you discussed your struggle while deciding on your treatment?

Anna

Hi Anna,

I had to dig deep for this one (I post a wee too much around here) but I found it.... it's 14 page thread!  You can follow my process and see the compassion and love and support and inputs from others. This thread was my public way to share my journey (at the time) and so many here truly helped the cause. You will see the humor run amock in the thread, but, it was truly needed at the time to help keep my wits about me.  Grab a fave snack and beverage... sit back... happy reading. 

http://anausa.org/forum/index.php?topic=847.0

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Anna7

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Re: Age related radiation question from newbie
« Reply #31 on: March 28, 2008, 05:01:54 pm »
Okay Phyl, I owe you one for digging through the archives.  Thank goodness the whole decision process is in the past!  ;D  Where your five treatments on consecutive days or broken up?  If so what was the schedule like?  Sorry to keep pestering you.

Have a great weekend, Anna

ppearl214

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Re: Age related radiation question from newbie
« Reply #32 on: March 28, 2008, 05:19:55 pm »
You owe me nothing, anna... glad to help.  For me, my treatments were consective days.... Monday to Friday (funny, Friday, last day of treatment, was "Good Friday" before Easter that year.  I brought in a BIG basket filled with all kinds of Easter goodies for the radio-team.... but had to remind Shelley and Tom NOT to eat anything before they zapped me... I didn't want them, on a sugar high, getting carried away with pressing buttons, ya know? :)  For me, as Friday was my last day of treatment, it truly was a "Good Friday".

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Anna7

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Re: Age related radiation question from newbie
« Reply #33 on: March 28, 2008, 06:09:22 pm »
Wow, so yours was consecutive.  Interesting, it appears that there is a multitude of "acceptable" protocols.  As I posted previously, the CK center I consulted with will do the five on Tuesdays and Thursdays only.  Of course, for me, this begs the question of why the delay since there will be two periods during my treatment with four days between.  I e-mailed Dr. Chang asked his opinion regarding the time gaps.  He responded but didn't give his opinion one way or the other as to whether it was a good or bad idea to space out the treatments.  He just said that there are various options and it is a personal choice each patients has to make.  I suppose he would not want to give his opinion or say anything that may be construed as negative about another CK center's procedures.  Perhaps I'm being too nit-picky but I'd like to feel some level of confidence as to which protocol is most effective.

Thanks for listening, Anna

ppearl214

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Re: Age related radiation question from newbie
« Reply #34 on: March 29, 2008, 08:31:10 am »
Hi Anna,

I have to respect what Dr. Chang shared with you.... he would know better than me and I can understand what he notes.  I know of some that had their radio-treatments broken out with non-consectutive days... the general consensus being...... giving the normal structures that may take low dose radiation per treatment a chance to "recupe" in between...... we know that in the case of GK and CK.... the brainstem and surrounding normal structures will take a small amt of radio during treatment... thus, so to say, it gives a "breather" in between.... it's not an uncommon practice. 

Hang in there... regardless of what you decide, no matter what.... cheering you on! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Anna7

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Re: Age related radiation question from newbie
« Reply #35 on: March 29, 2008, 12:34:12 pm »
Hi Phyl,

I found what Dr. Medbury posted regarding Gy dosages on the Cyberknife support website interesting, didn't you?  I suppose the medical community is always trying to strike the "perfect" balance and we, as patients, just have to take a leap of faith at some point.  Your successful treatment at 5x6Gy is testament to that!

Anna 

sgerrard

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Re: Age related radiation question from newbie
« Reply #36 on: March 29, 2008, 12:36:27 pm »
While Dr. Chang would be polite, and not criticize another facility when it wasn't needed, he would not hold back if he thought there was a problem. If he didn't say it was a bad idea, then it is okay. I had my treatment with Dr. Chang, and it was three days in a row, but that may just be the way they like to schedule them at Stanford, as much as anything else. There is nothing magic about 24 hours, it probably doesn't make any difference to the treatment.

Steve
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.

Anna7

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Re: Age related radiation question from newbie
« Reply #37 on: March 29, 2008, 08:31:30 pm »
Yes, I've started to get that sense about it too.  I suppose the issue can be put to rest now.  Thanks for the feedback.

Anna 

claire1

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Re: Age related radiation question from newbie
« Reply #38 on: March 30, 2008, 08:54:55 pm »
amazing forum not to mention invaluable information.  I must say that I haven't really heard much about people opting for the GK before I came here.  My strength has been restored. My questions and concerns have been unified with others here making more sense in my own decision.
Thanks
ClaireA

okiesandy

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Re: Age related radiation question from newbie
« Reply #39 on: April 02, 2008, 12:25:00 pm »
Phyl,

I still lurk on here sometimes. I read the link you provided. I laughed my fool head off.  Doesn't that seem like a long time ago? I am an old fart so the age related question does not apply to me. Fear factor did. The women in my family are long lived usally into the late 90's and more. I look back on all of this experience and think I went through 9 months of tears, indecision, prayer and pure terror. Now after more than 2 years after CK I can say if I had of known then what I know now I could have skipped those months and got down to the nitty gritty and would have been 3 years post CK instead of 2. I just had my neurosurgeon check up and she said I made her day. To think 2 years and 4 months ago I was crying in her office and this visit we were laughing and joking around. "We've come a long way baby"
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

ppearl214

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Re: Age related radiation question from newbie
« Reply #40 on: April 02, 2008, 12:31:59 pm »
Phyl,

I still lurk on here sometimes. I read the link you provided. I laughed my fool head off.  Doesn't that seem like a long time ago? I am an old fart so the age related question does not apply to me. Fear factor did. The women in my family are long lived usally into the late 90's and more. I look back on all of this experience and think I went through 9 months of tears, indecision, prayer and pure terror. Now after more than 2 years after CK I can say if I had of known then what I know now I could have skipped those months and got down to the nitty gritty and would have been 3 years post CK instead of 2. I just had my neurosurgeon check up and she said I made her day. To think 2 years and 4 months ago I was crying in her office and this visit we were laughing and joking around. "We've come a long way baby"

Ya know, Sandy.... this is now my 2nd anniversary of CK (this week...) and boy oh boy, you have hit the nail on the head.  I had to re-read my link a couple of times and as you note.... I sit back now, remember the terror in my own personal decision making process... and for YOU and Mark and Shoegirl and SOOOOOO many others that reached out to me and supported me during that decision process time... and to have the CK done... and now.... for those that have met me and spent time with me that have witnessed how well I do..... darlink, YOU and I (and so many) have come a long way, beby!.... and wishes to those that are in them shoes now... looking forward to their long, healthy way as well!

*shoves gray hairs back in head that originally sprouted during decision making process* :D

xoxo
Phyl

(btw, love you added "Ivan's" name to your sig line! :) )
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

GRACE1

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Re: Age related radiation question from newbie
« Reply #41 on: April 03, 2008, 08:49:35 am »
I was diagnosed with a small AN in Jul 06.  I was 56 years old at that time.  My only symptom was 40% loss of hearing in my right ear.  I had Gamma Knife at Wake Forest Univeristy Baptist Medical Center in Winston-Salem NC in Dec 06.  My follow-up MRI in May 07 showed necrosis; the tumor had changed significantly.  My radiation oncologist was so pleased that I don't go back for another MRI until May 09.  I do now have 80% hearing loss in the right ear; the other 20% is distorted, so I essentially have no hearing in that ear.  If that is all I ever have to face, I can deal easily with that.  So much for me.  In all my research, age was never mentioned as a deciding factor for GK.  I would definitely recommend GK, and I definitely recommend treatment at Wake Forest.  They do so many of these procedures, they can be trusted.   
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16