Author Topic: Useful CyberKnife info  (Read 7204 times)

Tumbleweed

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Useful CyberKnife info
« on: July 14, 2008, 02:59:14 pm »
Hi, everyone:

I have some interesting info to report following my CyberKnife (CK) treatments last week at Stanford. Much of what I'll cover here entails answers to questions many of us had posed in numerous other posts and which I promised I would try to find out during my time at Stanford. To track down each thread would be too time-consuming, so I'll report on everything in one thread here.

First, Steve was right about my CK dose. I erroneously thought my treatment plan was to receive 11.5 Gy in each of three treatments. In reality, I received 6 Gy three times, for a total biologically equivalent dose of 11.5 Gy (this figure is less than 6 + 6 + 6 Gy, as fractionation reduces the total dose in biological terms to be less than the total one would arrive at simply by adding the three doses together).

Dr. Chang told me before treatment setup that the 6 Gy for each treatment would be delivered by between 80 and 140 beams, resulting in healthy tissue along each beam's path receiving roughly 1% (1 divided by roughly 100 beams) of the total radiation or about 0.06 Gy. (Steve was correct that the calculation is just a matter of simple division: total Gy divided by number of beams). When I asked Dr. Chang how this compares to the dose of radiation one is exposed to from, say, a single X-ray, he said you can't really compare CK and X-ray because an X-ray exposes a relatively large area of the body to radiation whereas CK exposes the body to pencil-diameter beams about 6 to 7 mm in diameter.

Dr. Gibbs told me that, with CK treatment, no effort is made to avoid irradiating cranial nerves that the tumor is wrapped around. Since my entire IAC (internal auditory canal) was virtually filled up with the expanding tumor, that meant all the nerves in the IAC would receive the full dose of radiation that the tumor would receive. This points again to one of the benefits of CK over GammaKnife (GK): homeogeneity of radiation dose. Whereas GK delivers roughly double the dose of radiation (100% more) at the tumor's center compared to at the periphery, CK delivers only about 15% higher dose at tumor center than compared to at the periphery. If I remember correctly, the vestibular nerve is the one most centered in the IAC (with the facial nerve at the top of the IAC and the hearing nerve running along the bottom). What I glean from this is that the vestibular nerve probably receives less radiation with CK than with GK, although I didn't think this through enough at the time of my meeting with Dr. Gibbs to ask her if my reasoning is correct.

I told a nurse practitioner who works with Dr. Gibbs (my radiation oncologist) that I would like to take anti-inflammatory herbs and supplements during and after treatment to discourage tumor swelling, if it was safe to do so. Her response was, "That's good." That is, not only was this acceptable, but she thought it was a good idea to do so. As for taking anti-angiogenic supplements during and after treatment, she thought it was okay to do so but didn't indicate that she thought it would be helpful.

Each of my treatments lasted 32 minutes. I asked for and was given 1 mg of Ativan, a fast-acting anti-anxiety medication, before each treatment, to calm my nerves and keep me from fidgeting while receiving the radiation. (Although CK compensates for the patient's movements during treatment -- to keep the radiation focused on the tumor -- it is still important to stay as still as possible.) During my first treatment, I barely, if at all, felt the Ativan and was a bit anxious throughout the treatment. When I came in for the second treatment, the steroids I was given the day before (as a prophylactic treatment to preclude tumor swelling from the first treatment) were making me really hyper and therefore even more anxious. I was a bit panicky during portions of that second treatment. So for the third and final treatment, I took some valerian root extract (an herbal sedative) about one hour before treatment. I also arrived 30 minutes before treatment and asked for an increased dose of Ativan to calm my nerves, hoping it would kick in earlier and before treatment began. After determining that I would not be driving afterwards (my wife would be instead), Dr. Borcher (the meds doctor) gave me 2 mg of Ativan (a double dose). I sailed through the third treatment, calm as a cucumber. Those of you who will undergo CK in the future: don't be afraid to ask for a higher dose of medication if you are anxious. The doctor will accommodate your request; there is no need to suffer through panicky feelings while being treated. Also, although Ativan is supposed to work within minutes, I found taking it 30 minutes prior to treatment worked much better for me. Indeed, for my second treatment, for which I received the Ativan only 10 or 15 minutes prior to commencement of treatment, I didn't feel the drug's effect until after the treatment was over. I suspect my adrenaline largely countered its effect, but my point is arrive early for treatment, don't be afraid to request the dose you need, and take the meds early to give them a head start before treatment begins.

Eileen, my CK technician, gave me a few updates as to our progress during treatment, so I could anticipate how soon we would be finished. Unfortunately, during my first treatment, I had them play music so loudly that I couldn't understand anything she was saying. When she said, "We're about 1/4 of the way through, and you're doing great," all I heard was "blah blah blah blah, blah blah blah blah."  For all I knew, she was telling me the building was burning down and we had to evacuate, or that there was a major malfunction with the CK machine and I had only five more minutes to live.  ;D My advice: have them play music softly so you can hear what they're saying over the intercom. And choose soothing music; uptempo party music did nothing to calm my nerves!  ;D

If I think of anything else useful to report, I'll add to this thread. My brain is a little foggy right now, so this is all I can think of at the moment.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

mindyandy

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Re: Useful CyberKnife info
« Reply #1 on: July 14, 2008, 03:06:15 pm »
CONGRATS TUMBLEWEED! I'm glad everything went smothly.  ;D
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Sheryl

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Re: Useful CyberKnife info
« Reply #2 on: July 14, 2008, 04:42:56 pm »
Tumbleweed - Thanks for the update and glad all went well.  When you have a chance, would you let me know what anti-inflammatory herbs and supplements you took? 
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

fbarbera

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Re: Useful CyberKnife info
« Reply #3 on: July 14, 2008, 04:50:55 pm »
Congrats Tumbleweed -- rest of the treatment should be a breeze.  Francesco

Kaybo

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Re: Useful CyberKnife info
« Reply #4 on: July 14, 2008, 06:56:58 pm »
Tumbleweed~
I didn't have CK, but I am glad that it went well for you!   :D  Continued healing...
Thanks for taking the time to address all these issues to help others!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Tumbleweed

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Re: Useful CyberKnife info
« Reply #5 on: July 14, 2008, 07:13:32 pm »
Tumbleweed - Thanks for the update and glad all went well.  When you have a chance, would you let me know what anti-inflammatory herbs and supplements you took? 
Sheryl

Sheryl, I continue to take the following and might do so for as much as the next few years as a precautionary measure:

1. NSI brand FlavenZym. This is a blend of systemic enzymes, including papain and bromelain. I've found it to be helpful in the past (before my tumor was diagnosed) for painful joints. Bromelain is also cited in medical research studies to be anti-angiogenic (angiogenesis is necessary for a tumor to grow), so I consider it to be a potential prophylactic measure against tumor recurrence. It won't upset your stomach and is all natural. I've been taking it twice daily for the past 8 months and feel it also has helped by general health. Take it on an empty stomach or it'll just digest your food for you. On an empty stomach, the enzymes digest proteins that are the byproduct of inflammatory processes, thereby reducing inflammation. I figure that taking a mild, natural anti-inflammatory such as FlavenZym might help nip any tumor swelling in the bud, before it gets out of hand and requires strong medication. Wobenzym is another product (from another manufacturer) that has the exact same blend (in the same proportions) as FlavenZym, but the latter is considerably less expensive.

2. I put together my own herbal formula of dry, powdered herbs (in equal proportion by weight), a level teaspoon of which I take 2 or 3 times a day:
Licorice root
Turmeric powder
Burdock root
Ginkgo biloba (the latter is not directly anti-inflammatory to my knowledge, but it increases circulation to the brain so I thought it could help carry away any inflammation)

If you're not used to taking herbs, start out with only 1/3 teaspoon and build up to 1 teaspoon. That said, the herbs in this formula are all mild.

BTW, licorice root contains naturally occurring adrenocorticotropic hormones, which boost the adrenal glands' function in vaguely similar fashion to what a steroid would do. It's my natural substitute for Decadron. But be aware that it also has estrogenic properties. If your health condition requires you avoid estrogen, I'd eliminate licorice root from the formula.

I hope that helps.

Thanks to everyone for the well wishes. I'm already rebounding strongly on my third day after treatment, though still quite fatigued. Starting to see a glimmer of my old self as of today.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

leapyrtwins

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Re: Useful CyberKnife info
« Reply #6 on: July 14, 2008, 09:16:29 pm »
Tumbleweed -

as K said, I'm glad you posted this information for others who will be having CK after you.

Glad you're doing well,

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

swiftie55

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Re: Useful CyberKnife info
« Reply #7 on: July 15, 2008, 05:04:10 pm »
Hi tumbleweed--well done--and thank you for the good information--i am currently considering my options. Here in the uk--we do not yet have CK--so i have to decide -USA--or Munich.  I hope your post op recovery is quick and trouble free--kind regards--chris--uk.

Sheryl

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Re: Useful CyberKnife info
« Reply #8 on: July 15, 2008, 06:25:25 pm »
Tumbleweed - Thank you so much for taking the time to send the info above.  One quick question, when you mix together your dry herbal formula do you mix it with any liquid in order to ingest it?  I will have to stay away from the licorice root as I am on Armidex after a bout with breast cancer 4-1/2 years ago.  The tumor was highly estrogen positive.  My husband, on the other hand, who had CK for his meningioma regrowth may benefit.  We both have benign brain tumors - I'm a wait and watcher for a 9th cranial nerve schwannoma.  Sort of like an AN but not on the 8th cranial nerve.

Continue rebounding and returning to your old self!!  Keep us updated. 
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Jackie

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Re: Useful CyberKnife info
« Reply #9 on: July 15, 2008, 06:42:17 pm »
Tumbleweed,

I can't thank you enough for taking the time to share your experience with Ck at Standford. I found the information invaluable. I am on W and W, and due for my next MRI soon. I truly hope that your procedure is totally successful for you and that your recovery is quick. Thanks again for your thoughtfulness in sharing!
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

MaryBKAriz

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Re: Useful CyberKnife info
« Reply #10 on: July 15, 2008, 06:46:55 pm »
Welcome to postie status!!!!! Great coverage!

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

Kate B

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Re: Useful CyberKnife info
« Reply #11 on: July 15, 2008, 09:01:58 pm »
Tumbleweed,

As your subject line states, you have posted useful cyberknife info! Thorough too, I might add.

Glad it went well....

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Tumbleweed

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Re: Useful CyberKnife info
« Reply #12 on: July 15, 2008, 10:10:07 pm »
One quick question, when you mix together your dry herbal formula do you mix it with any liquid in order to ingest it? Sheryl

Hi, Sheryl:

You can put the powder in gelatin capsules and then swallow them with water. I usually just put the powder on a spoon and dump the powder in my mouth, then chase it down with an 8 to 12 oz glass of water. But I'm used to taking herbs that way. If you find the taste of the dry herbs disagreeable, by all means put them in gelatin capsules first. You can buy empty gelatin capsules at any well-stocked health food store, or at a store that sells herbs. As you guessed, though, it is important to drink water with the dry herbs to reconsitutue them and help them absorb.

Thanks to everyone for your well wishes. I'm feeling a little bit better with every passing day!

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Useful CyberKnife info
« Reply #13 on: July 15, 2008, 10:14:38 pm »
Sheyl:

P.S. You can also take the herbs with juice or tea, too. It needn't be with water. Really, any clear liquid will do. You just don't want to take it with, say, milk -- that would coat your stomach and inhibit absorption.

Best,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

AJ

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Re: Useful CyberKnife info
« Reply #14 on: July 16, 2008, 06:59:11 pm »
Wow Tumbleweed, I wish I'd have known about the herbal remedies prior to my CK in late May.   I took 800mg of Ibuprofen to try to nip any possible swelling.  I'm going to knock on wood as I say that helped me.  I'm about 6 weeks post CK and really feeling great and I am VERY thankful for that!!

Take Care and wishing that you continue to heal and to feel well.

Annette
2.5cm AN diagnosed 3/25/08 Barrow Neurological Institute, Phoenix, AZ
Some hearling loss in right AN ear.
Slight Tinnitus and slight imbalance.
CK scheduled for May 28th! Woohoo!