New CK patient

[teasely]

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? 

[shoegirl]

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

[ppearl214]

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

[Battyp]

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 
Good Luck with your treatment!  Sounds like you are in good hands.

[Kilroy1976]

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! 

[ppearl214]

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).

[Kilroy1976]

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.

[jamie]

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. 

[teasely]

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? 

[ppearl214]

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

[Kilroy1976]

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.

[Mark]

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

[Kilroy1976]

Woefully uniformed... does that mean he wears polka dot scrubs? Sorry Mark, couldn't resist.

[Mark]

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 

Oh well, I never claimed typing and spelling as a core competency 

Mark

[jsung]

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