Beth Israel CK or Tufts GK or Dr Noren Providence

[jacktripp]

I need information on all three from all out there please

1) Beth Isreal is extremely new. Would I get better results if I want CK hopping on a plane and going to Stanford?

2) Has anyone out there been treated at Tufts? What is your experience and why go there vs RI to Dr Noren. Is their equipment more up to date? Do they have more current knowledge?

3) Has anyone out there been treated by Dr. Noren? What is your experience.

Thanks so much for the information. I have always used the rule that the more someone does something the better. Beth Isreal is so new. Tufts I know nothing about. Dr. Noren has been at this since 1991 but is his knowledge current?

[ppearl214]

Jack,

I had CK at Beth Israel 16 months ago.  My AN was just 1cm at time of treatment, with some hearing loss (minimal but some....).  I had fractions over 5 days and a total of 30 GY.

I had my hearing test yesterday at Brigham/Womans (my surgeons are there as back up should my radiation fail and they are also handling my Chiari 1)  and found that my hearing is the exact same as it was at the time of my treatment, thus, the feeling is that fractions over 5 days did perserve my total hearing (as noted by my audiologist).  I meet this Monday with the CK team at BI to go over my last images (taken last week).  My surgeon at B/W yesterday did look at the AN and noted that my AN has not grown (mine was growing at a good pace) and now has stunted in growth.  BI will review the films to confirm that the AN is officially dying as this is the timeframe that would confirm this.

The treatment team at BI has been very open and honest with me. I questioned them about why 5 days and 30GY total. They have all been open, honest and willing to listen to what I tossed at them.  They have always returned immediate phone calls to me.  I understand why they treated my AN as such and now, absolutely agree with the protocol they chose for me as I'm absolutely tickled with my outcome thus far.  I'm learning of more folks that are having 5 days/30GY with CK now and it may be a direction that CK some centers are taking to ensure hearing preservation.... I would need to dig up those name but they were not treated at BI to the best of my knowledge.  (Most have CK over 3 days with a total of 18-21 GY... I was the first one, to my knowledge, that had 30GY over 5 days).

Now 16 months later, I feel absolutely terrific, my days continue on as they did prior to treatment and I have to knock on wood that I am doing as well as I am. We joke about me being a "poster child" for Beth Israel's AN CK treatment...... Those on this site that have met me over the past year will tell you that, in my case, I have done extremely well with my CK AN treatment and I have no regrets in my choice.

You can read further about my CK treatment in this "Radiation/Radiosurgery" forum in a thread about CK for Newbies...

I personally don't know anyone that had AN treatment at Tufts.... I do know of some that had GK with Noren in RI (ellenvig is the first one that comes to mind). I know she is doing great (saw her last month at a brunch I put together on a quarterly basis). Her AN is also dying and she's doing great. I'm sure she'll be happy to speak to you about it (as will I).

I hope this helps... and wish you well during this decision making process.

Phyl

[tony]

I cant comment on all the Docs - all I know is that Noren has been
doing this for ten years or more now
If I really had the choice I would rate a proven track record like
that very highly - still your call of course
Good luck
Tony

[jacktripp]

Thanks Tony.

Did you use Noren and what was the experience.

[ellenvig]

Thanks Phyl. 

Yes, I went to Dr. Noren and he was fabulous.  Very responsive, very caring, and I've had amazing results.  He is current and extremely knowledgable.  He even developed a fractionated GK protocol.

http://www.savyon.com/ellen/AN.htm

Ellen

[jacktripp]

Ellen,

Thanks for the information on Dr. Noren. I seem to hear nothing but good things about him and his vast experience.

I did read about the fractionated GK protocol. I just ended up wondering if there was reason to believe hyper fractionating like CK is a better way to go and this just confirms it. Bottom line I want as good a shot as I can get to keep my hearing. However, Dr. Noren has so much more experience than the CK center at Beth Israel. I will be talking to both of them before making the decision.

Thanks

[ppearl214]

Hi Jack,

FYI and I do believe BI and Dr Noren will both confirm this (as well as other info available on the internet).  By doing a 1 dose treatment (regardless if CK single dose or GK), it is usually used for those that do not have or have minimal serviceable hearing.  By "fractionating" a treatment (ie: CK, FSR, Proton, Trilogy, etc), the "fractionation" is typically used to save good amt of serviceable hearing. 

If you do a "search" here on the site regarding radio-treatments and hearing preservation, you will see many posts about it... as well as dr's responses on the CK Patient Support Board (http://www.cyberknifesupport.org/forum/), where dr's versed in GK and CK (as well as other forms of AN treatment protocols) provide responses for all radio treatment options.  Just a thought....

Not sure if this helps, but worth noting....

Phyl

[jacktripp]

Thanks, Phyl.

I believe a lot of it is going to come down to my comfort level with face to face. Do you happen to know how many AN's BI has treated since they have been open?

[ppearl214]

Jack,

totally agree about the comfort level... and only you can determine that.

I know that when I first met with them, they had the CK unit for just over a year.  At that time, a few AN's had been treated. I don't have an update to that info since my treatment (now 16 mos later, so they are better qualified to answer).   I'm not sure who on the CK team (and trust me, you will meet with the full team and residents from Haa'vad as well) but I would ask Dr. Mehatavan/Dr. Kasper and Dr. Wong for the #'s. They are the radio- and neuro-oncologist that can give you the numbers. As for GK/Dr. Noren, ellenvig can better share who on Noren's team you would meet and the numbers his team can share.

Phyl

(btw.... met with BI on Monday... shhhhhh.... 16 mos later.... now making this public as I've pretty well been keeping it to myself.... need to toot this horn........100% hearing preservation from what it was at time of treatment.... shhhhhhh... and booger is dying.  MRI 9 mos post treatment looks like it caught the necrosis and now, 16 mos later.... it's looking dead!   shhhhhhhhhhhh..... time for a celebratory martooni )

back to your regular schedule AN posting broadcast!

[jacktripp]

Thanks for the info.

A silent congrats on your results

[ellenvig]

My hearing is almost perfect and Dr. Noren still recommended I just have the single treatment.  He claims to dileneate the edge of the tumor so precisely that he doesn't damage surrounding nerves and tissue.

My hearing hasn't changed, so, so far so good!

Ellen

[sgerrard]

Since you only have half a dozen replies, here is two more cents worth.

A quote from an email reply from Dr. Chang at Stanford: "In terms of killing the tumor, there is no difference between gamma  knife and cyberknife.  In terms of hearing preservation, we and others feel that multiple fractions of treatment with the cyberknife may allow a slightly higher level of hearing preservation than the gamma knife."

Not a quote, but the gist of two remarks made by Dr. Medbery in Oklahoma: 1. A radiation team's total experience with radiation treatments on all machines is as important as their experience with cyberknife in particular. 2. After training on the cyberknife, any CK team can do a good job of treating an AN.

I would bet the Beth Israel team has a lot of experience with radiation treatments, even if not a lot yet on cyberknife.

The study on gamma knife done at Pittsburg in 1997 or so showed good results on hearing preservation, 70% if I remember right. That study was probably the turning point in promoting radiation treatment from a status of backup plan B to a first choice for treatment of many ANs. So GK is also a good choice for treatment.

In other words, no definite answer either way. 

Steve

[jacktripp]

Thanks, Ellen, on letting me know your hearing is intact.

Thanks, Steve, for the info on Cyberknife.

I feel lucky that I have two great options to pick from!!

Jack