ANA Discussion Forum
Archive => Archives => Topic started by: teasely on March 22, 2006, 04:49:53 pm
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First, I want to thank the posters on this site. I've learned a lot in the last couple of months since my AN diagnosis. I've decided to do CK at Stanford with Dr. Chang, as my 2 cm AN is not causing any symptoms, and I just can't fathom having such a major surgery for a benign tumor that is causing me no trouble at the moment. Unlike most docs who do surgery or radiosurgery, Dr. Chang practices in both areas. I reallly feel that he has only the patient's best interest in mind when he recommends either CK or surgery. For the record, he said both were an option for me, and he didn't really try to "sell" the CK. I was also lucky that I initially saw another surgeon at Stanford who, while confessing his surgical bias, thought both avenues were fine for me.
One question for those of you who've had CK. I know that they plan to administer Decadron on the days of the treatment. Do they taper you off, or is the dosage so low that you can safely stop after the three days of treatment?
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Teasely,
Hi, I had my CK done at a different center and I wasn't prescribed a steriod. I know some CK patients are - I think it depends on your Dr.'s protocol and individual situation. Hopefully, someone who was treated with a steriod will respond.
You could also ask the doctors at the CK support group - www.cyberknifesupport.org . Good luck with your treatment! I am sure it will go well!
Best Wishes, Suzanne
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Hi teasely and welcome!
I know you are in terrific hands with Dr. Chang at Stanford. There is a member on this board named Mark that had his CK with Dr. Chang approx 5 yrs ago and can share with you his experience with Dr. Chang. VERY respected in the CK community.
I will be having my CK in just over a week at Beth Israel in Boston. I had my treatment planning meeting the other day and they did prescribe decadron for me for during the treatments. It is to help with reduction of any swelling that may occur. They usually prescribe a small dose (if prescribed, not all dr's do) of 4 mg. I was prescribed 4 mg/2x day. You do have to be weaned off the meds and cannot suddenly stop as there are side affects if you do. I asked my pharmacist for a print out describing the medication so I would know what it's use is and potential side affects. I do know that it may interrupt sleep patterns. I also know that it's been used to help with headaches as well as swelling (brain edema). Since it's use is short term, there should not be any affects that you would experience. Low doses for short periods of time should not enhance your appetite too much, causing a lot of weight gain.
I hope this helps... and welcome. We're here to help in any way we can... and with your treatments in Dr. Chang's hands, boy oh boy, you are being treated by one of the best! :)
Phyllis
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I didn't have CK but I did have decadron. You def. want to taper off and I did have the sleep disruptions and weight problems within the first week I was on it. So pad lock the fridge and get the cleaning buckets ready ;D
Good Luck with your treatment! Sounds like you are in good hands.
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Decadron is really fun. Hooray for Decadron! Or not.
I thought I read a post not too long ago from someone (Mark maybe?) that said he was given a small amount of Decadron after each session with the CK. I don't suppose a very low dose for three days would cause too many problems, but when they taper you off 20 mg per day for two weeks, watch out! ;)
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Kilroy, my friend... I have never heard of any CK patient prescribed 20mg/daily for CK treatments, you silly! :)
Some CK dr's do not prescribe it at all (or any steroid)... some do... as shoegirl notes, it is all based on the CK dr's protocols. If prescribed, it is usually 4mg daily for CK treatment (I think Mark was prescribed 4mg??? Mark, correct me if I am wrong), as I have been as well. I know higher doses of decadron may enhance the hungry horrors and weight gain, but for short term use at minimal dosage, no real affects should occur, although individual results may vary.
(fyi, double checked this with my dad... he's a pharmacist and has been for over 40 yrs.... he reconfirmed what I write here).
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Heh, no, I guess it wasn't 20, it was 10 the first day, then 16 for three days, then down to 12 for three days...
Of course, my Decadron was prescribed to alleviate symptoms I was already having; I would imagine that the low dose given during CKing is to prevent symptoms from appearing at all.
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Hi Teasely
I had my CK at Barrow like shoegirl, and wasn't prescribed steroids. I guess Dr. Kresl doesn't prescribe them unless they're really necessary, I had a bad headache after my first of three treatments, I told Dr. Kresl about it and he just said to take an ibuprofen 3 x day and that worked fine for the remainder. I'm glad because I really love sleeping, and being a bodybuilder I really need it. Good luck. :)
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Hey, thanks all. Apparently the steroid dose is just for the three days, in case of swelling. I guess it's a small dose for a short time, so they don't need to taper. I'm really not going to worry about that. Anyway, this whole thing has been very weird for me, as I went in for an MRI due to headaches, which now appear to be cluster-like migraines. Ironically, they occur on the other side of my head, and no doctor thinks they are related to the AN. Actually, they stopped right after the MRI 6 weeks ago, but they have recurred in the last few days much to my dismay.
If the tumor were smaller, I would definitely be a watchful waiter as my hearing is fine and I have no other symptoms. However, it's coming into contact with the brain stem and I wouldn't want it to get too big that CK was not an option any more. This is why I chose to treat it now.
I wanted to ask one more thing. A surgeon scared me by telling me that I would lose my hearing eventually, no matter which course of treatment I chose, it's just that it takes longer to lose it after the CK. Did I misunderstand of was he not well informed? This seems contrary to all the stuff I'm reading about hearing preservation and CK. Why would you lose hearing many years after the treatment?
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Hi Teasley,
I don't know what kind of dr told you that would you eventually lose your hearing (period) but I would definately question that comment (as you have done here). Regardless of treatment plans (microsurgery, radio-surgery/therapy, etc), the risk remains for potential hearing loss. There are certain claims made by certain treatment programs as to how much useful hearing (overall/averaged) can be saved, but as we've learned here on this site, anything can happen. My hearing test was done 2 weeks ago. I lost more hearing in my AN ear. My CK dr says he hopes (key word) that they will be able to retain approx 85-90% of my useful hearing. I do not go into my CK treatment naive and have come to terms with potential "risks" may occur.. and they may not. My thought... talk to your ENT, talk to your radio-oncologist, radio-oncology nurse, etc as they know your situation, your growth, it's size, location, how much hearing nerve is currently affected. They can tell you best.  Then, it's hope for the best and pray the worst does not occur. Nothing in life is guarenteed but I'm a firm believer in the "glass being 1/2 full" :)
Phyllis
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Boy, if I had a dollar for every time I've seen someone post that "the doctors say [insert symptom] is unrelated to the AN..."
I don't know why your doctor would tell you that hearing loss is a certainty. Unless you choose a microsurgery where hearing is intentionally sacrificed in order to save other functions, there should be at least *some* chance that your hearing will be preserved. Some ANs are more difficult to treat than others due to size, location and shape, but I don't know that there would ever be a case in which perfect hearing is guaranteed to be destroyed by radiosurgery.
The reason that any damage from radiosurgery will not be apparent for several months or years is that radiation works slowly. It's easy to think of a cyber knife, gamma knife, etc. as a cutting torch, and the tumor being burned to a crisp immediately after the procedure, but that's not the case. The AN, and hopefully not too much else, is "infected" with radiation, and it will die over time. Same thing goes with the nerves; they're not burned to a crisp, but they may die over time.
And I agree with Phyllis. Remember that there are risks, but have confidence knowing that you've chosen a highly accurate machine and that the doctors will do their best to make sure you come out healthy.
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Teasely,
It would be my belief that a surgeon making the claim that anyone getting radiosurgery would eventually lose their hearing is either woefully uniformed or deliberately providing misinformation to "not lose the customer". I think it is fair to state that , unlike surgery, the results of radiosurgery such as tumor control, side affects and hearing are not immediately known. Most radiosurgeons will tell you that some of those can occur anytime in the first 12-18 months after treatment. However, beyond that point I can think of no compelling reason why the status would change. I'm 4.5 years out of my treatment and still have my pre-treatment hearing and I haven't seen any long term studies that would support such a claim
Mark
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Woefully uniformed... does that mean he wears polka dot scrubs? :D Sorry Mark, couldn't resist.
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Kilroy,
yes, actually I was referring to the poor clothing choices that some neurosurgeons tend to make which affects the quality of their advice to AN patients. Really that's what I meant, honest ::). OK,it's not, but you have to admit it's not a bad come back ;D
Oh well, I never claimed typing and spelling as a core competency :o
Mark
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Hi Teasely:
I had CK back in September 04 at Stanford. I took one Decadron after each of the 3 sessions. I slept like a baby each night with no effect what so ever.
Also, regarding the hearing, I just had my 18-moth checkup last week. Hearing remains at the same level as pre-treatment.
John
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Ok, dr prescribed me Decadron to start 2 days before treatment, to use during whole time and 1 month to wean off... spoke to the oncology nurse the other day and questioned this based on everyone else. Shared with her that I found that to be unusual and understand his protocol he wants, but have posed to him that I'm a little uncomfortable with the protocol. Waiting to hear back from him so I can get to the bottom of this... seems a bit much to me.. will keep you all posted.
Phyl
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Um... the protocol seems a little extreme to me. Did they say what kind of dose you'll be on? I'm pretty sure you're not supposed to take large doses for more than two weeks.
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So, I'll be going in tomorrow through Thursday for CK. I'll be sure to report on the experience. The mask fitting procedure and CT scan took only a few minutes. Most of the time was waiting for the docs to look at the images. I hope the CK is as dull as that! They tell me the whole thing should only take 1 hour per day.
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Teasely,
Good Luck this week! I am sure you will do just fine. Pick out some relaxing music - listen & relax - it will be over before you know it. Where are you having your CK?
Please do keep us posted!
Best Wishes, Suzanne
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Sorry - forgot you were going to Stanford!
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teasley,
we are cheering you on big time and I will be VERY curious what your thoughts are on your treatments. I go in Monday for 5-day dose (next week), I'm on your heels! and don't forget the Atavan!!!!!!! :) And the good music! I'm bringing Yanni and U2! :)
Best wishes this week!
Phyl
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I'm bringing Yanni and U2! :)
I thought you said "good" music, lol. ;)
They didn't really give me a choice, they played some terrible easy listening music, guess they didn't want me to bring in any Korn or Slipknot....
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Hmmm,
They didn't seem to mind Lenny Kravitz and The The. Well, they didn't tell me if they did.lol :D
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Letting me bring any form of music my little ole' zapped brain wants... so, figured I'd mix up the selection to accommodate the young and old in the treatment area. A little yANni, U2, Elton, some country, some soul, blah blah blah.
Teasely, hoping this week is going ok... looking forward to the updates!
BTW, spoke to my primary care physician last night about the Decadron protocol BI gave me... she also felt it's a bit much but further explained about keeping me on it (and weaning it down to my first post-treatment MRI at one month) would give BI a better indication of lack of swelling post-treatment, especially since the dosage is low (4mg/2x day). Still waiting for a call back from BI about it as well... saga continues.
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Letting me bring any form of music my little ole' zapped brain wants... so, figured I'd mix up the selection to accommodate the young and old in the treatment area.  A little yANni, U2, Elton, some country, some soul, blah blah blah.
Don't forget to bring some Skynard, oh yeah and Slayer too! ;D
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Heck ya!!!!!!!!!!!!! If it's going to help me get through this, yep, bringing it with me... after 5 days of treatment, I think I'll be ready for a live concert! :)
Letting me bring any form of music my little ole' zapped brain wants... so, figured I'd mix up the selection to accommodate the young and old in the treatment area.  A little yANni, U2, Elton, some country, some soul, blah blah blah.
Don't forget to bring some Skynard, oh yeah and Slayer too! ;D
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Well, it was all pretty much a non-event. Started at 9:00 and was out before 10:00. Music was a bit lame, sort of Spa/New Age, but I guess they want to relax you. Really, I've had dentist appointments that were far less pleasant. Got an Atavan because I asked for it, and they gave me a Decadron pill at the end. Went shopping for some baby gifts at the Stanford Mall after, and have roast duck wanton soup back home in SF. I feel a bit tired, but it's probably mostly from the Atavan (or "Ata-girl") as my friend calls them.
For anyone out there doing this or considering it, it's a cake walk, really. All the decision making was far more stressful. Now you just have to let yourselves be in the hands of the docs and their wacky machine!
Does anyone know anything about vitamins, supplements, etc. that might help with the tumor killing process? I'd be curious to know if I should be doing anything else.
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On ya teasely,
They are the good stories to tell especially for Phyl who is about to go through it.
See Phyl, nothin to worry about. The only concern you have is how much flak you are goin to cop on the Good morning thread!
Maybe take some good old led Zep and Cream to listen to, might be a concern if you start your head banging dancing with the machine on you - maybe not advisable.
Laz
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teasely,
thank you, merci beaucoup, domo arigato gozaimasu! Wishing you continued good treatment days (and days thereafter) and told my best friend what you wrote. I think she's counting on us going to lunch on Monday after my first treatment.
Laz, you devil.... you rawk! Have I told you that lately? ;)
Geeze, all these music choices... who will have time to even think about having my head zapped? :)
(thanks teasely! Hang tough and REALLY looking forward to the continued updates!)
Phyl
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Teasely,
Glad to hear your first CK treatment went so well. It is important now that you cap off your third and final treatment in the tradition of those of us who have had CK at Stanford in the past. Drive down the street from Blake Wilbur to the California Cafe for lunch or dinner and have a toast with a glass of wine. It's the only way to finish the experience :D
Mark
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ok, jealous that you both get to enjoy this... will have to see about N.E. Clam chowda' and shopping post treatment Monday.... :)
Teasely, hope you are doing well! :)
Teasely,
Glad to hear your first CK treatment went so well. It is important now that you cap off your third and final treatment in the tradition of those of us who have had CK at Stanford in the past. Drive down the street from Blake Wilbur to the California Cafe for lunch or dinner and have a toast with a glass of wine. It's the only way to finish the experience :D
Mark
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Phyl we'll have to celebrate with a glass of wine on our phone call.... ;D
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Well, day 2 went much the same. Interestingly, the time doesn't pass as slow as you might imagine on the table. I was surprised when it was over. Feeling well overall. In spite of the warning that Decadron might interfere with sleep, I slept rather well. The only thing that's going on is a very low grade fever. I asked the doc today (some new guy) and he kind of shrugged. Has anyone experienced this after CK? I know I shouldn't worry, but a little more reassurance would have been nice! Who knows, maybe I'm just getting a bug.
Last day tomorrow, and I will celebrate. Perhaps a margarita would be in order.
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The fever is something to ask your "real" doctor about. Decadron can hit your immune system.
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bp, you are on! :)
teasely, have been emailing the radio-oncology nurse this morning re: my treatments next week. Did ask her about low-grade fever. She did note that sometimes, folks do get one. Thrilled to hear your treatments are going great and time to celebrate your last zap! :) Next Friday, hoping to be celebrating mine as well! :)
Phyl
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Teasely,
Glad to hear day 2 went well for you. I am sure today will to, I would ask the nurse or your Radiation Oncologist about the fever. I didn't have one but I didn't take the decadron either.
Yes, you need to celebrate tonight when you are all done - Cheers!
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Thanks for asking about the fever, Phyl. My radiation oncologist didn't think it was normal, but assured me not to worry (so I won't!). But you're follow up makes me feel even better. Anyway, my final treatment was today. I still feel fine and just want to get on with life. I'll go in 6 months for followup MRI and audiogram. I just can't believe how fortunate we are to have this option available. If I had surgery, I'd still be in the hospital. Yay for the Cyberknife!
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Teasley did you celebrate the last treatment?
I'm thinking we need to have a big post treatment celebration with you and Phyl and anyone else who's done/doing treatments right now!
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YAY Teasely!!!!!! It's done, it's overwith and life goes on hun! You did it!!!!!!! :) I'm with the batty-one... time to party! :)
6 months for MRI and audiogram? That's awesome! I'm so glad for you! Teasely, you helped bring me more peace of mind.. thank you. Keep us posted as the days go on to how you are doing. Will be watching and reading... I'm on your heels! :)
Phyl