Author Topic: Cyberknife info needed for newbies.....  (Read 21931 times)

pearchica

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Re: Cyberknife info needed for newbies.....
« Reply #45 on: April 02, 2008, 12:30:04 pm »
Hey Girls:

Stanford told me to expect some hair loss, but very minor.  Also grey started to hit me at about 40.  First silver eyebrow about at 43....however this does run in my family!  CEECEE babe- starting a masters program AYAYAYA- if that doesn't cause hair loss nothing else will!  I am using a semi permanent shampoo- walnut.  It makes my hair more shiny and doesn't over all the grey, especially the sideburns but I like it and I get compliments on my hair so I guess its working.

Oh and thanks for the antibiotic tip.  Good to know.

Okay girls and guys- take care, annie  belated birthday greetings Pearly Girl Phyl!
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

ppearl214

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Re: Cyberknife info needed for newbies.....
« Reply #46 on: April 02, 2008, 12:34:09 pm »
ANNIE!!!!!!!!!!!!!! :) thanks for the wishes... *ahem*... my bday was 2 mos ago... ;)  Huggles and think of the gray hairs this way... we most certainly earned them in this journey... so, let 'em shine! :)

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

ppearl214

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Re: Cyberknife info needed for newbies.....
« Reply #47 on: May 21, 2008, 06:04:56 am »
*bump*

we've had recent inquiries for CK info... and many that need to update their CK experiences here (can you say HELLLLOOOOO STEVE? :) )

Looking forward to others adding to this thread to help others in their treatment options research.

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

sgerrard

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Re: Cyberknife info needed for newbies.....
« Reply #48 on: May 25, 2008, 07:17:45 pm »
I have mentioned doing this a few times, and I thought I had better follow through. This is my CK story, start to finish. It is not typical, because no AN story is typical; it is just one case, and one outcome. And, as with all ANs, the story is never really over; even twenty years later, things can change. Since it is a long post, I added some pictures too.

Pre-diagnosis:

February, 2007: A bad cold that seems to get up into my ear. Ear pressure, a plugged up feeling, and I notice that my hearing really is weak on the left side. A hearing test six months earlier said the same thing, but it didn't really seem noticeable until now. After four weeks of this or so, I go to see the doctor. The nurse practitioner puts me on decongestants.

March, 2007: Still plugged up, and back to the doctor. This time the doctor himself prescribes some antibiotics, a brief round of steroids, and an antihistamine. We are going to get that middle ear to unplug, by gum. When this doesn't work, I start a regimen of steroid nasal spray, plus saline nose washes, plus some more antihistamine/decongestant stuff.

May, 2007: This is still not working, my ear is still plugged, I still can't hear properly. I go back to the doctor, who refers me to an ENT. I spend most of my time at the ENT's office doing a complete audiology exam. Besides the usual hearing test, they put a sound source against the base of my skull, so the sound will bypass the middle ear and go directly to the inner ear. When the ENT sees the write up, she has this to say: 1. My, what an interesting hearing test you have; 2. Start antiviral medication and heavy steroid medication, in case it is a virus; 3. Get an MRI just in case. When I ask about the cost of an MRI, she says it doesn't matter, I have to have one.

Diagnosis:

June 5, 2007: MRI. June 12, 2007: I receive "the call." The ENT says, in order: 1. You can stop the antiviral and steroid medications. 2. It is benign. 3. It is a small tumor on your hearing nerve. I say thanks for getting the word benign in early, and what do I do now? She refers me to another ENT/neurotologist, who can do skull base surgery. I leave thinking it will be a small operation, perhaps as an outpatient in the office, and go to see the ENT.

June 25, 2007: The next ENT suggests that wait and watch may lead to total loss of hearing, explains the surgery options, and also suggests investigating radiation. He also tells me I can get a copy of the MRI on CD from the MRI lab, which I do. We schedule another appointment. The radiologist's report shows the tumor as 8 mm, or 0.8 cm, in size; my hearing loss is about 50-60 db, with 85% word recognition.

July 8, 2007: I make my first post on the ANA forum. Oh my, how glad I am I found this forum! Things would have turned out so differently without it. Soon I am gaining a more realistic picture of surgery, learning about radiation options, and making friends with other AN patients at the same time. I go on several appointments in the weeks that follow, including one to a vestibular lab for ENG and ABR testing. It becomes clear to me that if I watch I wait, I risk losing my hearing, and that acting when the AN is small has some advantages. I am still on the fence about radiation versus surgery. I learn about CK, and in particular about CK at Stanford. I send Dr. Chang an email, and he replies on a Saturday, indicating that I would be a good candidate for CK. I send him a copy of the MRI and hearing test.



Decision:

I also manage to calm down enough to do other things, including a short family vacation, and a business trip in August to Colorado. During one of the fascinating meetings in Colorado, I am doodling on my note pad, and start making a list. Left side, middle fossa surgery. Right side, CK radiation. I make entries for things like: Recovery time. Likelihood of preserving hearing. Likelihood of facial nerve or chronic headache issues. How long before it is over.

Oddly enough, though it was not my intent, that was the day I decided. Radiation would take longer to finish up; the post treatment effects can drag on for 6 to 18 months. But the initial recovery time would be shorter, the chance of preserving hearing would be better, and the risk of chronic side effects would be lower. When I was flying home from Colorado, I realized that I had decided on CK radiation treatment.

I called Stanford in August. Scarlett White, their appointment manager, called my insurance company. After I had faxed both parties copies of all the reports, they worked out the details. About a week later, I got a call that the procedure was approved, and I was set for September 10.

Others will tell you what a relief it is to make the decision and be on your way. I was impressed with Dr. Chang, I felt I had done good research on radiation treatment and Cyberknife, and I felt that I had done all I could and made the best choice for me. The actual outcome was now out of my hands.

Treatment:

September 9, 2007: Flew to San Francisco, where fortunately I could stay with a friend the whole week. Monday, I drove down to Palo Alto, and met Dr. Chang and Dr. Gibbs, plus a platoon of interns, residents, and technicians. We all had a good chat, and discussed everything about the treatment. Dr. Gibbs looked me in the eye and said she would be happy to offer me CK radiation treatment for my AN. I said yes, I didn't fly down here just to talk about it. I guess that is part of the protocol. I drove home in the afternoon.

Tuesday I drove down early. This was the hardest day, because they asked me not to have morning coffee before all the scans. I was a little grumpy about that. It seemed like I went all over the hospital that day, but did get a CAT scan and an MRI before the day was through. Chang and Gibbs put the scan data into their computers, and by that afternoon, had a treatment plan worked out. Dr. Gibbs showed me on one of the images the separation between the "hot zone" of radiation and my cochlea (hearing organ). Looked good to me. I also met Larry, who fitted me up with a mesh mask. The stage was set.

Wednesday, I drove down again, this time about noon. Larry and Eileen fussed over me on the table, making sure my legs were comfortable, and the mask was positioned just so, and that my CD was in the machine. Then they went outside and closed the door. Over the speaker, they said they were doing a few more checks. Then Eileen said "we are ready to begin." I said "Okay" - what else could I say at that point? I lay still for 45 minutes, listening to the hum of the machine as it moved around over my head. Peeking out does not harm your eyes, but if you catch it staring right back at you, it can startle you. I preferred eyes closed. Afterwards, a doctor presented me with a small blue pill, Decadron, and a paper cup of water. Then I drove back to San Francisco.

Thursday and Friday were nearly identical to Wednesday. On Thursday, Eileen claimed that I moved, and stopped the machine for a bit. I swear I didn't move, but I didn't protest. On Friday, after the last one, I shook hands with Dr. Gibbs, said good bye, and that was it. On Saturday, my friend and I did an easy hike on Mt. Tamalpai, and on Sunday I flew back to Portland.

 

Outcome:

December 2007 was not a good month for me. Around Christmas, a bad cold got worse, and I experienced swelling pressure in my AN ear. I was quite miserable, and stayed home and mostly in bed right through Christmas. (I did manage to write a nice Christmas poem, though). I almost called my ENT several times, to ask for steroids to try to reduce the swelling. My experience with Prednisone back before diagnosis probably kept me from doing so, because I really didn't like it. If it had gotten bad enough, I would have called. I later learned from a member of Dr. Chang's team that swelling usually doesn't cause permanent damage, and that steroids are mainly to provide relief to the patient.

I have had occasional brief episodes since then, but not lasting longer than a day. Taking an Ibuprofen was all I needed. In March 2008, I had a follow up MRI and hearing test. I lost a little more low frequency response, and another 6% word recognition, but otherwise my hearing is basically stable. The radiologist's report on the MRI indicated that the AN had shrunk a little bit, down to 6 mm. In April, I started wearing a Unitron Moxi hearing aid, which does a good job of giving me useful hearing in my left ear again. It is particularly good for conversations, and I have stopped saying "what" so often.

My left side hearing may go eventually, but I have certainly bought some more time with it. If it does go, the prospect of a BAHA sounds pretty good. I will be having 6 month or annual MRIs for a while, but I feel confident that my AN story is basically over now.

Conclusions:

"How shall I treat you, let me count the ways," we might say about acoustic neuromas. Every patient has to grapple with the same basic questions: get treatment or watch and wait; surgery or radiation; which doctors to go to; what kind of surgery, or what kind of radiation. I can only offer my own views.

I would watch and wait if nothing much was happening with symptoms, or if say hearing was already gone, and nothing else looked to be in jeopardy. I was inclined to act sooner in my case, and would be in others, if hearing or something else appeared to be in jeopardy, and waiting might mean missing the chance to save it. In general, ANs are easier to treat when they are small, with fewer complications.

If I had done surgery, I might well have chosen translab, and sacrificed the hearing. Hearing preservation seems to work best when the hearing level is high. Translab seems to be the safest surgery, at least for smaller tumors, with low rates of facial nerve damage, headaches, and other side effects.

I would probably not choose radiation for a larger tumor. 3 cm is the standard cut-off, but I would be nervous about it above 2.5 cm. Pressure on the brainstem is a serious thing, and not to be taken lightly. Besides size, the location of the tumor is important to consider. For the big tumors, retro-sigmoid surgery plus radiation seems to be a sensible and effective combination.

For many people, the choice between radiation and surgery comes from the gut. For some, surgery sounds clean and decisive, while radiation sounds spooky and troubling. Surgeons are often heroic in the movies; radiation oncologists rarely are. For others, surgery sounds invasive and aggressive, while radiation sounds high-tech. Surgeons are often egotistical, while radiation oncologists are likely to be friendly nerd-geeks.

If you fall into one of those camps, and I think most people secretly do, then you will end up deciding accordingly. I think that happened to me, and to others I have talked to, and I think it is just fine. It is essential that you believe in your treatment plan, and your doctors. Don't beat yourself up over it; just go with your instincts. The members of this forum always support every patient in whatever decision they make about their own treatment.

If you do decide on radiation, then there is the fun debate about which kind to have. I could have had Gammaknife treatment in Portland, where I live. In fact, I could have had Cyberknife at a newly opened CK center in Vancouver, WA, just across the Columbia river. So why did I go to Stanford for CK?

GK and CK are very similar for treating ANs. I chose CK because it has a slightly better chance of preserving hearing, and because it doesn't involve a metal head frame. The third kind of radiation, FSR, seems too drawn out to me, and has a slightly lower chance of preserving hearing. I went to Stanford because they have done over 700 ANs, and Dr. Chang was responsive to emails, and I have a friend who lives nearby. None of these are important enough reasons to be requirements, and I would have accepted doing treatment locally, and doing GK or FSR if necessary. I am glad I had the opportunity to do CK at Stanford, though.

Epilogue:

And now I have become a moderator of the ANA forum. Although it is the sort of honor where they say congratulations and hand you a broom at the same time, it is an honor nonetheless, and I am more than happy to do it. This forum means too much to me not to be a part of it in every way I can. To all my new friends here, I say thank you.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: Cyberknife info needed for newbies.....
« Reply #49 on: May 25, 2008, 09:26:17 pm »
Steve -

this is a great story.  I officially nominate it for the next issue of ANA Notes.  It's very informative and your conclusions are summed up very nicely.

If you ever do get a BAHA, I'll buy your first bottle of Dawn  ;D

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

Anomar11

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Re: Cyberknife info needed for newbies.....
« Reply #50 on: May 25, 2008, 10:03:26 pm »
Thanks Steve.  Very well done, informative and helpful.

Mona
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

Mark

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Re: Cyberknife info needed for newbies.....
« Reply #51 on: May 25, 2008, 11:31:30 pm »
Steve,

What a wonderfully written story of your CK experience. I would really encourage you to contact Valorie who moderates the CPSG board and have your story added to the group over there as well

Well done

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

claire1

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Re: Cyberknife info needed for newbies.....
« Reply #52 on: May 26, 2008, 09:53:22 am »
Steve,

From a newbies stand point, your story was very informative,helpful/hopefull and showed that though we are all different in experience, we are all the same.  I'm very fortunate that you are one out of many moderators that guide us with your experience.  I've been blessed to have found this site. Thank You
Claire

MaryBKAriz

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Re: Cyberknife info needed for newbies.....
« Reply #53 on: May 26, 2008, 01:47:39 pm »
Steve,

You are AWESOME! I lived through your CK experience and thought processes with you. As a pre CK treatment patient, it affirmed my decision.

I am writing in real time about my experience on a different thread. I probably should have posted it here, huh? Anyway, here is the name of the thread and the url. 
 

Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona

http://anausa.org/forum/index.php?topic=6523.0


I want to also thank everyone else for their postings on CK. I actually am looking forward to getting mine done next week. I have my CD's made and I am very comfortable with my decision. For me -  after extensive research and consults, it was a no-brainer. Everyone has to do what is best in their own case.

I appreciate this site so much and I know I have said it before, but words don't suffice for the help I have received here.

Mary 8)



Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

cindyj

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Re: Cyberknife info needed for newbies.....
« Reply #54 on: May 26, 2008, 03:20:32 pm »
Great job, Steve, and thanks!  Very, very well written and informative (and fair and balanced, just like Fox News, right).  Will be very helpful to all the newbies here, myself included...still being an undecided newbie.

Mary, best of luck next week.  Will be watching for your updates on the thread you started. 

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

MaryBKAriz

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Re: Cyberknife info needed for newbies.....
« Reply #55 on: May 26, 2008, 06:27:15 pm »
Cindy,

Thank you for the message. I feel very optimistic. I will be watching to see what you decide. Our AN's are about the same size. Such a wild ride, huh? I see Dr. Daspit Wednesday for our pre-treatment appointment and I will post what happens then.

Take care, :)

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

fbarbera

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Re: Cyberknife info needed for newbies.....
« Reply #56 on: July 10, 2008, 11:59:29 pm »
Hello All,

I had Cyberknife in August 2007 for my 2.6 cm AN.  Because of the size of my tumor, I had to think carefully about surgery v. radiation and also spent a lot of time thinking about GK v. CK.  I have tried to recount my whole decision-making process, and also my progress since treatment, in a website, which you can find below (in my signature).  I put the site together hoping new patients might find it helpful in their own process of evaluating treatment alternatives. 

Sincerely,
Francesco


DebbieL

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Re: Cyberknife info needed for newbies.....
« Reply #57 on: July 24, 2008, 11:47:43 pm »
Well here goes, this is my first post and I'm not quite sure how to post or where to post to get started.  I have been reading the posts by everyone for the past year but decided it would be a good time to start so others out there reading would know where I'm at in my AN adventure and how much help I've gotten from all the posts I have read.  You have definitely given my alot of needed information to help with my decision to have cyberknife.  You all are amazing!.  I found out 2 years ago about my AN and thought I was all alone until my doctor at Kaiser suggested I look up this website.  I went for the mask making at Stanford today and have my 3 treatments on Monday,Tues and Wed. of next week.  I'm treating it as a vacatioan and hoping for the best.  I have to admit that I have been very worried about the outcome.  I already have some balance issues along with problems swallowing which I have no idea if that is a symptom of the AN or not.  Please let me know if I have justed posted in the wrong place.  Hopefully I'll learn as I go along.  Thanks again to all of you out there who have helped me through this process.  I appreciate you more than you know.

sgerrard

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Re: Cyberknife info needed for newbies.....
« Reply #58 on: July 25, 2008, 12:04:04 am »
Hi Debbie L,

Best wishes for your Cyberknife treatment next week! The Stanford team is very good, you are getting the best. There may be some bumpy patches ahead, but I'm sure you will do fine.

Posting here is fine, but you might want to start a new topic, more people will notice it. When in doubt, it is always safe to start a new topic under AN Issues. If you go to    that section, the new topic button is on the right side, near the top. Don't be shy!

I'm glad you posted, you are welcome here, and we will soon want to know how your CK treatment turned out, and what size was your AN, and how is your hearing, and what state do you live in, and all that kind of stuff.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ppearl214

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Re: Cyberknife info needed for newbies.....
« Reply #59 on: July 25, 2008, 05:42:18 am »
Hi Debbie and welcome!  Also want to send along wellness wishes for your CK treatment.... we'll be cheering you on and glad to see you participating here.  Come peruse the rest of the forums and say hi.... so many here to cheer you on and give support.

Again, welcome... and good luck with your CK... Stanford is fab for CK treatments..... You're in great hands there!

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