ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: sunfish on February 26, 2010, 01:28:34 pm
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Just came home from the long-awaited neurosurgeon appointment. I had already done tons of research, and had concluded I might want to do Cyberknife, if the docs thought it would be a good idea.
I saw Dr. Curtis Worthington in Charleston, SC. From his online stats and what he said, sounds like he's the Cyberknife guy in my area. I'm so relieved to have that appointment behind me and the start of a plan before me. I should be starting treatments this next month.
I joined ANA this week and received my info packet. I can't convey my gratitude for all you ANers and this website. I have no idea how I would have dealt with this problem and made these decisions without being armed with all this info. Who knows how this will all turn out, but I feel I'm on the right track now!
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Sunfish -
congratulations on making your decision; usually a very hard task.
And thanks also for becoming an ANA member.
Jan
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Hi Sunfish....I love that by the way!
Congratulations on having a plan thats half the battle! Good Luck and keep us posted ;D
Sue in Michigan
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Sunfish ~
First, congratulations on reaching a treatment decision as well as selecting a doctor/facility. These are stress-inducing choices and it's always a relief to have them 'behind you', as it were.
Congratulations, too, on your ANA membership - and thanks for the kind words about the site and our members. I agree...you're on the right track, now, and I trust things will turn out just fine for you, as they have for so many other AN radiation patients. :)
Jim
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Congratulations on a decision. You must feel relieved. Good luck with your treatment.
Vivian
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Who knows how this will all turn out, but I feel I'm on the right track now!
... and you went with your gut, after extensive homework :) ... Sunfish, congrats on making your decision. You know we will all be cheering you on. Once you know your treatment dates, please remember to add them to our AN Calendar so we know to cheer you on.
Also, please accept my gratitude for your ANA membership. It's those memberships that help with AN education, peer-to-peer support (ie: this website/discussion forums), etc that helps to keep us going. Please accept my appreciation for your help in supporting the ANA.
Again, congrats!
Phyl
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Thumbs up. ;)
Steve
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Update - Today I had a consultation with Dr. Clay, radiation oncologist at Roper Hospital Cancer Center in Charleston, SC about Cyberknife. I was very impressed with her. She spent the better part of an hour talking with me, explaining everything, and getting cross-examined by me. She explained they use the same protocol here as at Stanford, to the letter. She gave me a copy of an article from Dr. Chang, detailing the protocol. The downside is that they've only treated two ANs with this particular Cyberknife. When she said that, I visibly winced, but she was patient with my reservations. The upside is that the neurosurgeon, Dr. Curtis Worthington, was the director of the Gamma Knife center at Univ. South Carolina for 10 years, and they do have plenty of experience treating brain tumors in general with Cyberknife here, including many in sensitive areas.
I like the docs, they seem very knowledgeable about AN issues (protect nerves/cochlea/brainstem), and the Stanford protocol is specifically designed to preserve hearing . . . so I decided to go for it! I go for my preparation appointment next Tuesday, and will most likely start treatment the week of March 15! I'm excited and less stressed (at least today)!
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ah, the "monkey off your back" :) Well done.... ready to rawk, now? :) Congrats on finalizing things..... now, onward, upward, zap the stinker and let's get this over! :)
Congrats!
Phyl
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The upside is that the neurosurgeon, Dr. Curtis Worthington, was the director of the Gamma Knife center at Univ. South Carolina for 10 years, and they do have plenty of experience treating brain tumors in general with Cyberknife here, including many in sensitive areas.
That's what you need. With one doctor having 10 years of experience treating ANs with radiation, and another with plenty of experience treating brain tumors with Cyberknife, you are in good shape. The doctors on the Cyberknife forum have repeatedly said that you should look at the total experience, not just the experience on the current machine. CK is a refinement of GK, not something completely different.
Congratulations on joining the CK club. :)
Steve
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Congratulations, Sunfish! You're past the hardest part: choosing a treatment plan. And for what it's worth, I think you've made a great decision choosing CK. CK has given me back my life.
Now go kill that freeloader in your head and flourish!
Best wishes,
TW
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Update - Today I had a consultation with Dr. Clay, radiation oncologist at Roper Hospital Cancer Center in Charleston, SC about Cyberknife. I was very impressed with her. She spent the better part of an hour talking with me, explaining everything, and getting cross-examined by me. She explained they use the same protocol here as at Stanford, to the letter. She gave me a copy of an article from Dr. Chang, detailing the protocol. The downside is that they've only treated two ANs with this particular Cyberknife. When she said that, I visibly winced, but she was patient with my reservations. The upside is that the neurosurgeon, Dr. Curtis Worthington, was the director of the Gamma Knife center at Univ. South Carolina for 10 years, and they do have plenty of experience treating brain tumors in general with Cyberknife here, including many in sensitive areas.
I like the docs, they seem very knowledgeable about AN issues (protect nerves/cochlea/brainstem), and the Stanford protocol is specifically designed to preserve hearing . . . so I decided to go for it! I go for my preparation appointment next Tuesday, and will most likely start treatment the week of March 15! I'm excited and less stressed (at least today)!
Hi, i am not a cancer survivor and even a patient but i would like to congratulate you on this. Dr. Clay is a GREAT doctor. My mom recently had cancer and she was her doctor.
I would however suggest you follow all her instructions. Let me explain this though. My mom was put on steroid's by Dr. Clay. They kept her up day's and nite's and very energized. My mom didn't like it because she was so tired at the same time from chemo treatment's. So my mom stopped taking the steroids and it made the swelling worse around the area of her brain. She didn't bother to tell Dr.Clay and this made her abit loopy, incoherent, and dizzy alot of the time.
Good Luck.
Edit: Sorry if this bugs anyone me posting this. I was doing a search on cyberknife and saw this post about Dr Clay.
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Well, it's been very reassuring to hear from various folks who have had these docs. So I appreciate your post! I made a decision to have my cyberknife treatments near where I live, performed by folks who are experienced in treating brain tumors using cyberknife, and treating ANs using Gamma Knife, but not necessarily treating ANs with cyberknife. So my impressions of the doctors played a significant role in my decision - I really liked Dr. Louise Clay and Dr. Curtis Worthington. Dr. Clay carefully explained how they are using the same protocol as Stanford, and she even gave me a copy.
Good advice about following directions - steroids suck, in my experience, but can be a necessary evil. I'll keep your advice in mind. Thanks!
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First cyberknife treatment today. Tried to post a more detailed account, but can get my typing fingers to work (ativan and decadron). Bottom line: I'm OK, no side effects (except "on drugs") no complications. I go back Wed. Thursd. Thanks for your prayers.
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Plenty of time for details later, Sunfish. Just watch how much you eat while on steroids!
Continued good wishes,
Steve
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Oops! Good advice too late. I've eaten have the fridge already. Now back to bed for me.
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steroids = overeating and insomnia! :) I had the best cleaned fridge at 3am my week of CK! :) sunfish, you are well on the road now to becoming a "toastie postie" :) Hang in there... and btw, did you see the "eye"? ;)
Hang tough!
Phyl
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OK, here is a tip on steroids and insomnia that I figured out by chance. It is best to take them in the morning, as opposed to the evening. That way you are an "energizer bunny" during the day, but can still get some descent sleep. I did this during my most recent round of steroids (only because I got the prescription filled early in the morning) and I avoided that nasty insomnia side effect.
Marianna
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now you tell us, Marianna!!!!!! :o :o Where were you when I needed this knowledge 4 yrs ago! :)
Thanks for the tip! Sounds perfect to help the steroids cause!
Phyl
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Day 2 of CK tx. I stayed awake and watched the eye. Very science fiction!
I'm not sure they're going to prescribe decadron past tomorrow. So far, ativan holds off the insomnia. Treatments have been no problem whatsoever - no headaches, vertigo, hearing is as good as ever. The technicians tell me I'll be tired for a couple weeks.
I'm waiting for the other shoe to drop - side effects, etc. I'll keep this short, or I'll be arrested for typing while intoxicated!!
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Finished last CK treatment today. I got to ring the bell at the cancer center as being a graduate. Not nearly as hard a process as most of those poor souls there. I'm a toastie postie!! No headaches, vertigo, facial problems, hearing loss or anything so far. Just tired from the meds.
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glad to hear that you are doing well. learn to listen to yur body .... and give yourself permission to take a nap or what ever.
i scheduled a half or full day off each week (vacation) for a few weeks after treatment (3). a week after treatment - my wife went with me on a business trip. slept on the plane to and from for a break.
if you stay on the steroids for a few days ... stock up on vegies, fruit, and Weight watcher snacks to fill the void and not to be too bad for you!
glad to hear that you stared the beast in the eye.
take care
carter
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Congratulations on finishing your treatment, Sunfish! You're on the road to recovery!
Best wishes,
TW
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sunfish... CONGRATS you "toastie postie"... sending the wellness wishes pixie dust your way to help make sure that the "brain booger" dies its fugly death! Well done! :)
Congrats to you! :)
Phyl
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Sunfish ~
Let me add my congratulations on your successful Cyberkinfe treatment. I'm glad things went so well. Best wishes for a smooth and rapid recovery!
Jim
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Hi, Sunfish....I, too, add my congratulations on the completion of your CK treatment. My best wishes to you. Glad you're on the forum! It's truly "the place to be".
Barbara
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Hi Sunfish.
Congrats on finishing your CK treatment! :D That is wonderful. Mine is coming up, and I am scared, but reading your posts helps a lot. Please keep posting on how you are doing!
Laleh
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I'm super-pleased to report that I'm back at work for the second day after CK last week. I slept through the night last night for the first time since Friday. I felt 90% of normal yesterday. I'm a government mid-level manager type, and all I had to do was dress nicely and sit in front of the TV for a national teleconference all day. I didn't even have to speak! Great first day back! I'm a weekend warrior triathlete, and ran one mile around the block in my neighborhood last night after work.
For the most part, 5 days after my last CK treatment, the only significant symptoms I have left are at night - I think when I slow down/lay down/take off my hearing aid I notice stuff like increased tinnitus and pressure in my head/minor headache more. I know that, with CK, symptoms can crop up for months due to swelling. As near as I can tell, my hearing remains at pre-treatment levels, although I haven't had a new test since late September 2009.
I felt bad enough that I called the neurosurgeon's office on Monday morning, to ask for clarification of the post-treatment recommendations. I talked with the nurse again on Tuesday morning. She said they could have definitely tapered the decadron a teeny bit (they didn't) and that could have made me a little more comfortable (maybe yes, maybe no IMO). But by Tuesday morning, I gave them the good news that I was pretty much on the upswing.
I could have done this without ativan (or other tranquilizer), but would recommend taking a little bit of something to help with the stress if you're at all nervous, and it was nice to basically "nap" through the process. To me, the actual treatment was far less stressful than going to the dentist. NOTE: I strongly recommend NOT driving, etc. after taking ativan/tranquilizers until you know how they affect you. My treatment center absolutely required me to have a driver to take me home. One thing I would change is that I would definitely have someone stay with me for several hours afterward, rather than just having someone drive me home and drop me off. I don't drink alcohol at all, and haven't for many years, and felt my judgement and decisionmaking abilities were somewhat impaired afterwards. That is obviously just a personal preference, based on my own individual circumstances.
Everyone asks me, "So when will we know if it worked?" My goal was to stop this bugger/knock it back a few steps for at least a decade, so I'm practically 100% certain my goal has been met, and that's not an issue for me. Just waiting to see if/when any side effects develop. I'll update every so often over the next few weeks/months. I'm not scheduled to see the doctors again for about 3 weeks.
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Hi, Sunfish ~
Thanks for the comprehensive update and the positive news within. As you know, stopping the growth of the tumor is the goal of the CK procedure. Shrinkage is a bonus. You probably won't receive a definitive assessment of whether the radiation 'worked' for a year or more because swelling often skews the immediate follow-up MRI scan results. At least it did for me (I had FSR).
I trust you'll continue to do well and even if a few 'bumps in the road' occur, I'm sure you'll emerge in great shape - and with a 'dead' AN.
Jim
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Sunfish, congrats on your smoothly sailing through treatment and your return to work.
I concur with Jim that you likely won't be able to gauge the success of your CK treatment for a year or more. But even if you develop side effects and your followup MRI shows swelling, don't worry! Pronounced side effects can indicate the tumor is reacting to the radiation faster than normal and dying more rapidly. My tumor swelled 33% in volume by the 5-month mark post-treatment. But in the following six-month period, it shrunk dramatically (a 59% reduction in volume)! Any side effects or swelling are not indications of treatment outcome and how you'll feel later in time. I feel much better now than I did before getting treated.
So rest assured you're on your way to recovery. Any bumps in the road are temporary.
Best wishes,
TW
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Hi sunfish.... first... WELL DONE! :)
Jim is right.... as you have learned here and on the CK forums...... it takes time. My AN did have minimal shrinkage but it's not "common" but can happen for some. Time, in radio case, is the key..... as you have learned in your research. Hang tough, take it easy....... you are doing fab! :)
Phyl
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Hmmm . . . I last updated Wed. morning, but backslid for a couple days after that :(
Got home Wed. evening. We had taken my blood pressure Tues. evening, and it had been a teeny bit high. When I got home Wed. I took bp again, and it was +150/90. Decided to rest and not go to eve activities. A couple hours later, had a really scary episode in which my dinner simply refused to go down my esophagus, and I assumed I was having a heart attack. Long story short - eventually wound up in after hours clinic, placed on meds to lower bp, which had climbed to 165/101.
On Thursday, called my neurosurgeon's office and sent case manager an email. But the doc doesn't do business in that office until Fri. I went to see my GP, who's the greatest. Case manager said she was sure symptoms weren't from abrupt discontinuation of decadron with no taper, but my GP said she's convinced that's the problem. She thinks I was just extra sensitive to decadron. GP made me stay home today thru weekend, because she said I'm "too healthy" for the bp meds, and is scared that when my body catches up and drops bp on its own, my bp will be way too low. BP is gradually coming down to normal.
I'm more than a bit unhappy with neurosurgeon's office. Coincidentally, I got email on CK website from someone who had AN treatment the same days/place I did, and his meds were tapered ???
On a very, very positive note: I basically feel normal today. I slept normally last night for first time since treatment. No balance problems, less tinnitus today, good energy level. The last ten days have been hell for me, but not nearly the hell of traditional surgery, and I'm very glad I tried the CK route.
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OK, I stand corrected . . . neurosurgeon's office just called back to make sure I was feeling better and would be OK over weekend. I'm normally very active, and make a really bad patient when I'm stuck in the house!