Cybr Knife - 1 vs 3 treatments

[karenhendrickson]

I posted earlier asking about Dr. Wara in So. SF and as I have been reading postings of others in the radiation section I have no noticed anyone who had to undergo more than one treatment.  I have been told I will have 3 consecutive treatments.  Has anyone had multiple treatments and if so, what was the experience and post experience?  Thanks much.  Karen

[Jim Scott]

Hi, Karen ~

It depends on the doctor and the size/location of the tumor.  I can't speak to CK issues because I had FSR which, in my case, consisted of 26 separate 'low dose' sessions of targeted radiation over a 5 week period.  My radiation treatment was successful (the AN died).  I'm sure others with direct CK experience will be able to better respond to your query.

Jim

[mojwri54]

I first had surgery but the tumor was large and wraped around things they could not get a small part out.  The doctor said he cut off the blood supply but it could pickup another one and start growing again. So we would watch,. Will in about 1.5 years it did start growing so I had CK which was 5 sessions 5 days in a row.

[ppearl214]

Hi Karen and welcome

In all of my years here on the forums, I have noticed many, many folks that either had 1 day, 3 day or 5 day (I had 5 day). Jim is absolutely correct depending on each individual situation (ie: size, location, etc).  I know of many that had CK in 1 day due to most serviceable hearing was substantially diminished pre-treatment.  Many have "fractionated" (broken up over multiple days) for other reasons, primarily for deliverance of lower dose for possible hearing preservation, location of growth (ie: if most of the growth is within the IAC, to help minimize swelling inside the IAC), lower dose radiation to surrounding normal tissues/structures, etc.

Back in 2006 when I had mine done, most I knew had 18-21 GY CK delivered over 3 days. When my team recommended to me to have 5 days with approx 25-30GY, I questioned them at the time.  They told me since my goal was hearing preservation, they wanted to deliver lower doses over multiple days.

Just my 2 cents. I hope it helps.
Phyl

[Grateful_1]

Karen,

I had the CK treatment and it was for three consecutive treatments.  Each procedure was long (~ 1 hour) and somewhat uncomfortable because of the length of time, but painless.  I felt no discomfort after each treatment and was actually able to go to work following each procedure. I must add that for me, this did not work because I ended up having to have surgery anyway but on the plus side, it did delay that for two years. I would definitely have the CK treatments again if I had to.

[PaulW]

Its an interesting argument. CK versus GK, Single Session versus 3 or 5 sessions.
I had single session Cyberknife and had good hearing.
Despite common use of fractionation in the US, its not as commonly used overseas and is rarely used with GK
I know I am part of an ongoing study of CK single session, to compare with Stanfords 3 session regime.

The latest numbers are 75% for single session CK at 5 Years versus 77% for 3 session CK, versus 78% for GK using Gamma Knife Perfexion. 

So what does it all mean.... The differences are so small, they can be attributed to differences in age, location of the tumour and size of the tumour, which are all factors.

Some of the latest thinking is that hearing preservation is largely linked to the radiation dose to the cochlear.

Improvements in imaging accuracy, and radiation delivery, and avoidance of the cochlear may have more to do with improving hearing preservation than any other factor.

Here is a paper showing 91% hearing preservation  for single dose GK when the cochlear dose is kept below 4 Gy

http://www.ncbi.nlm.nih.gov/pubmed/19057423

[karenhendrickson]

Thank you all for your responses.  It feels good to know there are others who empathize and have had experience and are willing to share.  Much appreciation to all of you who have responded.  Karen  (waiting with some trepidation the CK experience - but with more hope now)

[Gone to the Farm]

Karen,
I had 5 cyber knife treatments over 5 consecutive days.  I chose the CK based on the statictics my doctor gave me and plus I wanted to avoid the surgery.  Each treatment lasted about 45 to 50 minutes.  During the treatments I had a custom formed mask to help keep my head still.  They had a television in the ceiling over head with the movies of my choice going.  This really helped keep me distracted from the radiation robot as it maneuvered.

 From a side effects standpoint, the only thing I noticed was an occasional localized headache on the side were the treatments were focused.  These were minor to the extent that I wondered if they were a side effect or not.  My hearing continued to go down hill after the treatments, but I honestly can not say if that was due to the CK radiation causing some swelling or just from the AN damaging the nerve. 

Both the radio surgery specialist and my AN ENT doctor advised me going in that my hearing would not improve and could continue to degrade.

[ChipsFL]

5 CK treatments every other day, with 2 skipped over a weekend. Was told that way it gave some, but not too much, recovery time. Dr was ok with 3, but said preferred 5 if I would devote the extra time to it. Been almost a yr now; hearing about the same.

[karenhendrickson]

Want to thank you all for your kind responses.  It has helped ease some of my anxiety.  I will hopefully be in te "normal" range of things and I primarily want to be at a fairly stable point before seeking hearing aids.  With the hearing diminishing slightly all the time I hoped that it may be more stable or if I lose it all - ok then at least I know what I am facing in terms of hearing aid research.  Again, thanks so much all.  Karen

[phantagrae]

This is a discussion I am very interested in...I'm still in my research mode, but have some decisions looming.

My ENT discussed the idea of stereotactic radiosurgery and mentioned doing 5 treatments over the course of about a week.  Right now I have, as he put it, "excellent hearing" and knowing that I'm a musician and that preserving my hearing is my main goal (apart from killing the AN) that this treatment might be the best way to go--but knowing that I might end up having to have "salvage surgery".

He did explain that the hearing in my AN ear would eventually decline, but that hopefully the treatment would preserve it at least where it is now, as opposed to surgery, which could potentially cause total hearing loss.

I'm feeling a little overwhelmed with all of the information to consider--not only which treatment to have, but where to go to have it, or if I can have it done here or what.  A lot to think about.