ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Shorebird on November 04, 2010, 05:18:12 pm
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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I am new to the discussions about radiation and not sure if I really want to go that route just yet... but as far as them leaving the room the technicians do that for all types of X-Rays, CT Scans etc., so I do not thing that is a cause for concern it is just a common practice they deal with it on a daily basis and safety for them also as it is their profession.
Best Wishes,
Pat
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Hi Phyl, Thanks so much for clearing the air! If there was even a chance of being zapped in the chest - Accuray would be out of business. I'm having the CK in a few short weeks and feeling confident of its success. Thanks again Phyl, Joan
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Just another welcome to the newbies~ Shorebird and JLR.
I required surgery because of brainstem involvement >:( but am glad to hear that you two don't have to go the surgery route.
Let us know how things go, and how your symptoms respond to the treatments.
:) Maureen
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Phyl, thanks for the report on your experience with challenging the CK robot! ;D All joking aside, it's really good to know that the irradiation ceases if/when the patient moves.
Joan, congratulations on scheduling your CK treatments. You are on your way toward improved health. Recommended reading: A couple years ago, I posted some useful info about CyberKnife and my experience with the treatments, here: http://anausa.org/forum/index.php?topic=6910.0
Best wishes to all,
TW
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Thanks TW for your experiences with CK. Very interesting. Only 32 min. each session..I can do that...And so glad you are doing so well. So my doctor has me taking Decadron prior to each treatment..if I were to take a valium as well, wouldn't I be like Jeckle & Hyde? Thanks again for all the feedback. JLR
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Hi Phyl, thanks for your note about your "intentional movement" and the CK robot stopping. I'm sorry if I caused some unintentional panic among the future CK patients! I was only passing on the information that I received from Dr. Noren and Dr. Heilman. For those of us who are choosing to go the radiation route, whether fractioned or not, I think it's a great choice and I think we'll come through it just fine.
On another note, would a few people who have had their AN treated by radiation chime in about their immediate (and not so immediate) side effects? I'm very curious about your experiences.
Thank you and Happy Sunday!
Cindy
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On another note, would a few people who have had their AN treated by radiation chime in about their immediate (and not so immediate) side effects? I'm very curious about your experiences.
Cindy
Hi, Cindy:
Someone recently PM'd me the same question, so I'll just paste part of my reply here (while being careful to protect their identity):
Immediately after getting CK, my balance symptoms got about 15 to 20% worse. This lasted for about six months. Then, very quickly, my balance started to improve. It is actually much better now than it was before getting CK, in fact better than it has been in around 10 years, although I still have mild disequilibrium. It's pretty unusual, from what I understand, to actually have balance improve compared to pre-treatment function. You're more likely to have your balance symptoms worsen a bit after treatment, but then have it return to pre-treatment level of symptoms several months after treatment. I've been lucky. My tinnitus also dramatically improved immediately after getting CK, which is an even more unusual outcome.
Unfortunately, I had an episode where I had hyperacusis and lost about 10 dB of midrange hearing on my AN side about 4-1/2 months after treatment. The hyperacusis went away in about a week or so (I think taking large doses of natural vitamin E helped), but the hearing loss didn't reverse. Later on, during months 6-12, I lost another 10 dB of hearing in my midrange frequencies on my AN side, but my hearing rebounded in the bass frequencies by about 10-15 dB.
One other thing: I suffered very severe exhaustion for a couple months after getting CK. This was unusual, as most people have only mild to somewhat pronounced fatigue for a couple weeks, and some people don't feel fatigued at all after treatment. Because I have had very dramatic tumor necrosis followed by shrinking, I believe my intense reaction (fatigue) was due to the tumor reacting very strongly and quickly to the treatment. That was a really good thing in the long run but was difficult to take in the short term.
I am totally, 100% happy that I had CK. Doctors said I would surely have been deaf [on my AN side] following surgical resection; instead, most of my hearing is preserved. My balance is dramatically improved and my tinnitus greatly reduced. CK has been a lifesaver for me.
Best wishes,
TW
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On another note, would a few people who have had their AN treated by radiation chime in about their immediate (and not so immediate) side effects? I'm very curious about your experiences.
Thank you and Happy Sunday!
Cindy
Hi Cindy, I had CK during the week October 11-15 so that's about 3 1/2 weeks ago. The only side effects I've experienced so far have been a slight increase in my pre-treatment symptoms as we expected would happen. These were about a 5-10% increase in both tinnitus and disequilibrium. That's it. I've played handball 3 or 4 times since then (just to illustrate that my balance issue isn't bad enough to make my game worse) and, in all other ways, I have gotten back to what is a normal life for me.
By the way, I was lightly secured to the table with a 12" or so wide belt that I think had lead in it. Actually, I hope it had lead in it.
Ok, and for the record, I'm not the Mark about whom Phyl is referring, but I'm going to take some liberty here (since I am a toastie postie - or is it postie toastie?) and add my name to the dope slap list! :D
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I'm going to take some liberty here (since I am a toastie postie - or is it postie toastie?) :D
I believe the, ahem, correct title is toastie postie. I.e., someone who is post-treatment who has been toasted with radiation. Postie is the noun (us). Toastie is the adjective which conveys the inner suntan we all have. ;D
Best wishes,
TW
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Cooked, post-treatment.
*raises hand*
Definate toastie postie here! :)
Phyl
I'm going to take some liberty here (since I am a toastie postie - or is it postie toastie?) :D
I believe the, ahem, correct title is toastie postie. I.e., someone who is post-treatment who has been toasted with radiation. Postie is the noun (us). Toastie is the adjective which conveys the inner suntan we all have. ;D
Best wishes,
TW
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Hi All, Recently on the forum there was a post about important questions to ask prior to the CK...i.e. who to call if there is a complication, when to take the meds etc etc I was wondering if anyone could pass this thread to me. I'm thinking it was on this forum or perhaps the CK one. I just dont recall... I can't always blame the AN for my forgetfulness..I eat too much tuna and I think the mercury has finally caught up with me :D JLR
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Okay, I don't want to derail this thread and I can make an argument for either toastie postie or the reverse, so I'll go with popular consensus, or open a new thread.
Toastie postie is it.
But seriously, folks,
Hiya, JLR, try this link:
http://anausa.org/forum/index.php?topic=12217.0
Mark
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Thanks Mark! I appreciate the quick response. JLR
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We're here to serve ! :D
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Thanks for the feedback, everyone! Having this forum is such a gift and I'm so thankful to have found you all.
I guess I'm about as mentally prepared as I can be for GK on 11/19. Let the real battle begin!
Best Wishes,
Cindy
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Lock and load . . . :D