fsr question

[Peggy]

I saw Dr andrews and Dr wasik at jefferson, he suggested FSR radiation, I'm a little confused, i know its fractionated radiation but what I'm confused about is are there different machines that they use and is one better than the other, fsr is not the same as cyberknife?  I'm ok doing the fractionated because he said it has a better result in preserving the hearing I do have.  but I don't know if there are different types of fsr.  any clarifications would be appreciated. 

[Lorenzo]

HI Peggy,
Yes, there are different types of machines for radiosurgery that are used to treat people in a fractionated way, CyberKnife being one, and the other main one is a LINAC. I think there are other ones, including Gamma Knife at times is used in fractionated mode.

The hearing point you made. I'm not sure how much hearing you have left and how useful it is, but be aware that it can be affected by FSR too, especially if the tumour swells after treatment and then shrinks again. All that nerve stretching does not help in preserving hearing. You are probably aware of this point anyway. I lost an extra 5%, but my hearing was beyond use anyway, so not really a concern to me. Of course we're all different and react differently. I'm certainly very happy with my choice of CyberKnife.

Hope this helps. I'm sure others will have more precise answers!

Ciao, Lorenzo

[sgerrard]

FSR usually means machines like Trilogy or Novalis (there are a few other brands). The treatment is a low dose per day, usually every day for four weeks. The low daily dose helps preserve nerve function; the repetition for 28 days raises concerns about whether all the doses can be delivered accurately and avoid hitting nerves.

With Gammaknife, the dose is delivered all at once in a single session. The delivery is quite accurate, due to the rigid mechanical head frame, but the high dose has some risk of exposing nearby nerves. Dr. Gibbs at Stanford said when they were doing research for Cyberknife back in the 1990's, they convinced a few patients to wear the head frame for 3 days (ouch), so they could test a 3 day protocol with GK, but it is not done on a routine basis.

Cyberknife is a happy compromise. The dose is usually delivered over 3 to 5 days, with very high accuracy due to the xray positioning system. It combines the accuracy of GK, plus the fractionation of FSR, to produce what many consider to be the least impact on nearby nerves.

At this point, Peggy, I think owe it to yourself to get a CD of your MRI (call the MRI lab), and mail it to Dr. Medbery or Dr. Chang for a free evaluation. You can find their email addresses on the Cyberknife support group, under About the Doctors:  http://www.cyberknifesupport.org/about_the_doctors.html

You could also visit the forum there, people ask questions all the time about FSR, Trilogy, GK, and CK, and the doctors give answers. Just browse around, or sign up and post a question:  http://www.cyberknifesupport.org/forum/

Hang in there, it is a drag to wade through all the information, I'm sure you would like to get this issue resolved. But it is worth it to do your homework and arrive at a good choice for your particular situation. Whatever that turns out to be, we will support you all the way through.

Steve

[FlyersFan68]

Hi Peggy,
  The cyberknife facility is new in Philly but that might be a good thing too. These machines probably work best when they are new. As they age they probably require more daily maintenance. Newer machines will have the newest features relying less on daily maintenance and software upgrades. This is why it's important you pick the right machine and team. I don't have first hand experience with radiation but I've been to Jeff so your post caught my eye. I think it's definitely worth visiting Philly CK. CK has been in use since 2000-2001 so this is the newer breed. It has some benefits over the others but doesnt have a long track record with the current protocol. Best Of Luck. Keep Us Posted!

[Craig]

I had my treatment with the Trilogy system in April in Nashville, TN. Here is a link to a hospital in Philly who uses Trilogy. I had 4 treatments over 4 days. Good luck with your decision as it is the hardest part of it.

http://www.fccc.edu/cancer/treatment/radonc/tools.html

[Dealy]

Peggy- Some good replies to your question from other's. I am one who had FSR-25 sessions last summer at Johns Hopkins in Baltimore. I was told that-even though the accuracy can be off by 1 too 2 MM-the fractionated aspect is not so hard on nerves-especially the Hearing Nerve. I was also told that GK can be too hard on the Hearing nerve. I had almost 100% when I went in. However-I am almost at the year and a half post radiation and my Hearing is down too 50%. My tumor swoll at 9 months and shurnk down in size. No Guarantees. If I had too do it over - I may have chosen Cyberknife. Too late now. My Tumor was 2.5CM going in. I also am an NF2. The last MRI showed my tumor is dying from the inside out. Johns Hopkins uses the Linac machine. My advice- How much Hearing do you have left? What is the size of your tumor? Do you have any other problems associated with the tumor-such as facial numbness? Outcomes are better with non NF2's with radiation but there is always a risk with any mrethod chosen. Good Luck on your decision. Ron