Author Topic: Another Newbie  (Read 11066 times)

Shorebird

  • New Member
  • *
  • Posts: 9
Another Newbie
« on: November 04, 2010, 05:18:12 pm »
Hi Everyone, I'm so glad to have found this site!  I've been a silent observer up to now.  My name is Cindy.  I'm 40 years old and live in Providence, RI.  I was diagnosed with a 2.5cm AN a month ago and have been furiously doing research ever since.  The information I found here was a huge part of that, so thank you, Posties.  I'm over the initial shock of diagnosis and am slowly coming to terms with what lies ahead of me.

I feel lucky to have caught the AN when I did.  I easily could have let it go for years, as my only symptom is slight hearing loss on the AN side.    I had vertigo a couple of years ago, but my body has adjusted and it's no longer an issue.  Thank God for a thorough ENT who pushed me to have an MRI with contrast. So other than the "invader" in my head, I feel great!  I'm a bit nervous about the after effects of GK, but am remaining positive.

I met with Dr. Georg Noren in Providence to discuss GK and I also met with Dr. Kevin Yao and Dr. Carl Heilman at Tufts in Boston to discuss GK as well as a surgical option.  Because of my age, the Boston docs thought that surgery would be best for me since "we don't know what the side effects of radiation are 40 years after treatment".  When I pressed the surgeon if he thought I'd be making a mistake if I went the GK route, he said, "No, I don't". 

So after lots of research and soul searching, I decided to have GK with Dr. Noren on Nov. 19th.  It's true, I do feel much better after making a decision.  I feel it is the right option for me and am comfortable with Dr. Noren.  Has anyone here been treated by him?

- Cindy





ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7447
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Another Newbie
« Reply #1 on: November 04, 2010, 05:52:16 pm »
Hi Cindy and welcome from another "new englandah!" :)  I had my radio at Beth Israel Boston (Cyberknife) and I know of some that had GK with Dr. Noren. He is certainly on the cutting edge of GK treatments and you are in terrific hands with him.  Please keep us updated here about your treatment date, etc. We're here to cheer you on.  Lots of info in the "post treatment" and "Radiation/Radiosurgery" forums regarding GK and hope you find the info helpful.

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

JLR

  • Sr. Member
  • ****
  • Posts: 322
Re: Another Newbie
« Reply #2 on: November 04, 2010, 06:02:51 pm »
Hi, I, too, am new to this forum. And I searched every which way getting info on this AN which we have.  Mine is 2.3 cm.  After researching and seeing 4 doctors, I choose Cyberknife. (the doctors also concured that this was the best and safest route to take (I'm 61)  I just completed my prep work and will have the radiation in a few weeks.  I would like to know why you choose GK over CK. I do wish you all the best and hopefully we will have zero complications and go on with our lives with no problems,....although we will have to monitor our AN's forever.  Thanks, Chat soon, JLR

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: Another Newbie
« Reply #3 on: November 04, 2010, 06:25:20 pm »
Welcome to the forum, Cindy and JLR! I think you've both made great treatment choices. I had CK a little over 2 years ago and am really happy with the way it's turned out (so far, at least  :) ).

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Shorebird

  • New Member
  • *
  • Posts: 9
Re: Another Newbie
« Reply #4 on: November 04, 2010, 07:06:15 pm »
Thanks for the warm welcome!  Nice to meet another fellow New Englandah, Phyl.  It's great to hear that you've heard good things about Dr. Noren.  I did a search here for his name and found only positive things, so that gives me some peace of mind.

JLR, why I chose GK over CK.  They both seemed like good options, but I felt like having one high dose of very targeted radiation gave me the best shot at killing this thing.  The way Dr. Noren described it, with CK, a robotic arm moves around your head and adjusts to any very slight movements you make every 10 seconds.  What happens if you move ever so slightly during that 10 seconds though?  Then the radiation isn't zapping the exact spot that it should be.  With GK, there is 0% chance you are going to move and it's VERY precise.  I was also told that with CK, the radiation shoots past your head and some residual radiation goes into your chest.  It's probably not enough to do any damage, but still...I didn't like the idea of ANY radiation being directed anywhere but at the AN.

Of course it's a personal choice and I hear that lots of people are very happy with the decision to go with CK.  Can you tell me why you chose CK over GK?  I wish you all the best for your treatment, JLR!

- Cindy

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: Another Newbie
« Reply #5 on: November 04, 2010, 08:40:47 pm »
Welcome to you both, Cindy and JLR!  I don't know a darn thing about radiation treatments but just wanted to shout out a welcome to you!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

jaylogs

  • Administrator
  • Hero Member
  • *****
  • Posts: 834
  • It's NOT a too-mah! (Anymore!)
Re: Another Newbie
« Reply #6 on: November 05, 2010, 12:59:24 am »
Cindy and JLR...a warm welcome to you both!! We are a great group of people who'll be there for whatever support you may need. Nobody knows what you are going through better than us, so if it's just to vent, please do! Good luck with your upcoming GK's! :)
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: Another Newbie
« Reply #7 on: November 05, 2010, 06:00:02 am »
Hi, Cindy and welcome to the Forum  ;D

I'm in Illinois and have no personal knowledge of Dr. Noren, but I've seen his name on the Forum - all good things.

I considered GK before deciding to have surgery (personal choice) and I'm confident it will go well for you.

Good luck,

Jan
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

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: Another Newbie
« Reply #8 on: November 05, 2010, 11:21:29 am »
I was also told that with CK, the radiation shoots past your head and some residual radiation goes into your chest. 
- Cindy

This makes no sense to me as a differentiator between CK and GK. A beam of radiation is a beam of radiation is a beam of radiation. Whether it's emitted from a CK or GK collimator, it should travel as far and in the same direction from two sources (CK and GK equipment) located and angled the same way, no? That is, if it's true that "residual radiation goes into your chest" with CK, then it should also do so with GK.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: Another Newbie
« Reply #9 on: November 05, 2010, 02:39:22 pm »
Hi Cindy - and please accept yet another New England (Connecticut) welcome!

On discovery, my AN, at almost 5 cm, was too large for radiation so I went through Retrosigmoid approach surgery to 'debulk' the tumor (to 2.5 cm), then I underwent FSR (90 days post-surgery) to destroy the tumor's DNA.  Both were highly successful and today, some four years out, I'm doing great.  My surgery & radiation were performed in New Haven, Connecticut by a team of brilliant doctors experienced in AN removal/radiation.  Dr. Noren has a fine reputation among the forum members in your area (Rhode Island) and I'm confident you'll do well with your radiation treatment.  Please stay connected and keep us informed as you approach your Big Day.  Thanks.

Jim    
« Last Edit: November 06, 2010, 02:19:56 pm by Jim Scott »
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.

JLR

  • Sr. Member
  • ****
  • Posts: 322
Re: Another Newbie
« Reply #10 on: November 05, 2010, 04:37:47 pm »
Hi Cindy,  I chose CK very carefully with the advice from 4 physicians.  Because my hearing is so good, the CK radiation is fractionated so that low doses will be delivered on 3 days rather than one big blast and hopefully my hearing will be preserved.  As far as the research I have done on the CK..it is extremely precise with zero chance of zapping my chest or any other body part.  The beauty of the CK is that it allows for movement and quickly and precisely targets only the tumor. As with the CK and GK there isnt enough long term data but lets just hope that yours and my treatments will zap our tumors and we can go on with our lives in a pain-free way being free of any regrowth or any complications from CK or GK.  Lets please stay in touch.  Joan ;)

JLR, why I chose GK over CK.  They both seemed like good options, but I felt like having one high dose of very targeted radiation gave me the best shot at killing this thing.  The way Dr. Noren described it, with CK, a robotic arm moves around your head and adjusts to any very slight movements you make every 10 seconds.  What happens if you move ever so slightly during that 10 seconds though?  Then the radiation isn't zapping the exact spot that it should be.  With GK, there is 0% chance you are going to move and it's VERY precise.  I was also told that with CK, the radiation shoots past your head and some residual radiation goes into your chest.  It's probably not enough to do any damage, but still...I didn't like the idea of ANY radiation being directed anywhere but at the AN.

Of course it's a personal choice and I hear that lots of people are very happy with the decision to go with CK.  Can you tell me why you chose CK over GK?  I wish you all the best for your treatment, JLR!

- Cindy
[/quote]

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: Another Newbie
« Reply #11 on: November 06, 2010, 12:39:32 am »
Come to think of it, I think if CK delivered radiation to the chest (or anywhere else besides the brain), the technicians would have covered my body with a lead blanket (which, if I remember correctly, they did not do). On the other hand, they are pretty darn careful to leave the room before turning the CK machine on, so there's got to be some danger (I assume only in the case of malfunction) of irradiating outside the area being treated.

The bit about the X-rays being taken at 10-second intervals is interesting. Thanks for sharing that. I'll ask Dr. Chang if that's true the next time I see him. Even though I was told the CK robot tracks the patient's movements, I was extremely careful not to move when I was treated. I even waited to swallow until the robot was in motion, repositioning itself (which is when it's not outputting any radiation). That meant watching "The Eye" the whole time instead of just closing my eyes and trying to relax. I think that added to my paranoia and made the treatments emotionally much more stressful for me. Dunno if I recommend that tack to other people. But now that I hear about the 10-second intervals (if true), I'm glad I was extra-careful not to move.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

JLR

  • Sr. Member
  • ****
  • Posts: 322
Re: Another Newbie
« Reply #12 on: November 06, 2010, 05:55:26 am »
Come to think of it, I think if CK delivered radiation to the chest (or anywhere else besides the brain), the technicians would have covered my body with a lead blanket (which, if I remember correctly, they did not do). On the other hand, they are pretty darn careful to leave the room before turning the CK machine on, so there's got to be some danger (I assume only in the case of malfunction) of irradiating outside the area being treated.

The bit about the X-rays being taken at 10-second intervals is interesting. Thanks for sharing that. I'll ask Dr. Chang if that's true the next time I see him. Even though I was told the CK robot tracks the patient's movements, I was extremely careful not to move when I was treated. I even waited to swallow until the robot was in motion, repositioning itself (which is when it's not outputting any radiation). That meant watching "The Eye" the whole time instead of just closing my eyes and trying to relax. I think that added to my paranoia and made the treatments emotionally much more stressful for me. Dunno if I recommend that tack to other people. But now that I hear about the 10-second intervals (if true), I'm glad I was extra-careful not to move.

Best wishes,



TW

Thanks TW for your info on the CK. In my research, and boy did I research there was no mention of any 10 second intervals! The CK tracks the movement to avoid any unneccesary zapping of other body parts and yes they would have put a lead blanket over you.  But all in all I will mention this to the CK team. I do know that my doctor does both..CK and GK and he recommended (strongly) the CK. Thanks again for any and all imput. JLR

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7447
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Another Newbie
« Reply #13 on: November 06, 2010, 06:11:37 am »
Thanks for the warm welcome!  Nice to meet another fellow New Englandah, Phyl.  It's great to hear that you've heard good things about Dr. Noren.  I did a search here for his name and found only positive things, so that gives me some peace of mind.

 The way Dr. Noren described it, with CK, a robotic arm moves around your head and adjusts to any very slight movements you make every 10 seconds.  What happens if you move ever so slightly during that 10 seconds though? 

Hi Cindy

I'm going to note a nasty I did during treatment, after hearing about slight movement during treatment (and longtime user on this forum, Mark, had made me aware of this).

I had heard that the robot of CK stops if there is slightest movement. Well, on behalf of all AN'ers here, in the name of science ........ I intentionally did a slight movement to see if it was true... and it was.  It stopped dead in its track, realigned itself based on the "image guidance" and then, began its process again. Mark has done a "virtual dope slap" to me for trying it but..... I can confirm that it is true.  Thus, based on its image guidance, it will not "zap" areas not within the "blueprint" of the treatment plan .... only follows what its told to do.

I know... I know... you all can also dope slap me later!
Phyl

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

pjb

  • Hero Member
  • *****
  • Posts: 682
  • Sad to say now a W & W
Re: Another Newbie
« Reply #14 on: November 06, 2010, 07:56:38 am »
Thanks for the warm welcome!  Nice to meet another fellow New Englandah, Phyl.  It's great to hear that you've heard good things about Dr. Noren.  I did a search here for his name and found only positive things, so that gives me some peace of mind.

 The way Dr. Noren described it, with CK, a robotic arm moves around your head and adjusts to any very slight movements you make every 10 seconds.  What happens if you move ever so slightly during that 10 seconds though? 

Hi Cindy

I'm going to note a nasty I did during treatment, after hearing about slight movement during treatment (and longtime user on this forum, Mark, had made me aware of this).

I had heard that the robot of CK stops if there is slightest movement. Well, on behalf of all AN'ers here, in the name of science ........ I intentionally did a slight movement to see if it was true... and it was.  It stopped dead in its track, realigned itself based on the "image guidance" and then, began its process again. Mark has done a "virtual dope slap" to me for trying it but..... I can confirm that it is true.  Thus, based on its image guidance, it will not "zap" areas not within the "blueprint" of the treatment plan .... only follows what its told to do.

I know... I know... you all can also dope slap me later!
Phyl



Thanks for that I am leaning towards CK with the residual that was left behind and if I have to have something done you have just put that fear to rest for me. But I am so glad it did stop for you looks like you are a chance taker I would be thinking it but too afraid to actually do it..

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

 


anything
anything