I'm back

[Timjk]

It has been a while but I am back on the forum.. I had AN surgery in February. I have an appointment Wed. the 27th to discuss radiation/radio-surgery with my doctor at Moffitt in Tampa. I am going in there with no clue as to what to talk about.. I need some suggestions..

Thanks for any help..

Tim

[Jim Scott]

Timjk:

I had radiation (FSR) treatment following my AN reduction surgery.  It was carefully 'plotted' by my neurosurgeon and a radiation oncologist he worked with.  I had no real problems during the 5-week treatment period and the radiation was successful (see my signature).  The radiation has to be very precise, obviously, and avoid hitting vital nerves, which is a challenge for the doctors but with today's computer 'mapping' technology, utilizing MRI and CT scans, it can be performed successfully, with no nerve damage.  Mine was. 

I would suggest you inquire about the feasibility of having FSR treatments as an outpatient (as I did).  It's a bore, (radiation treatments 5 days a week for 5 weeks, in my case) but painless and ultimately rewarding when that tumor starts to show necrosis.  However, every AN 'case' is different and your doctor may have other ideas.  Always ask 'why?' and inquire about your doctors past experience and results with other AN patients receiving similar treatment. If you're concerned...tell him.  It's your head! 

Jim

[mema]

Tim,                                                                                                                                                                                             

Glad to see you back.  I had 25 fsr treatments.  It took 1 1/2 years for a neurologist to admit to me having nerve damage.  Up until then they tried to blame the brain spasms on everything else.  Most people with fsr have little problem.   Don't go by me.  Remember I was sick at the time of radiation and coughed through most of it.                 


                                                                     mema                                                                                                                 

[Dealy]

First of all you are an Nf2 like me if I remember right. I decided on FSR treatment-25 sessions at Johns Hopkins last summer. I am coming up on a year and a half MRI at the end of December. I chose FSR because I was told that radiation like Gamma Knife or Cyberknife was too intrusive on the Hearing Nerve.So the theory with FSR-even though it is not as accurate I was told the other nerves can absorb the additional Radiation since it is not exactly the most accurate-can be 1 too 2 MM off. The 25 sessions went well and nothing really major until 6 months-It started to swell. I have read literature where this is considered actually good because it is trying too grow but cannot so it takes on fluid then shrinks-which mine did at the 1 year MRI. However it took more of my hearing in the process. If you are not concerned about hearing then in my humble opinion I would choose-if I had to do it over Cyber Knife since the accuracy is better. I have also read that an NF2 is different because our Hearing Nerve runs through the tumor while a person that has just one tumor-Hearing Nerve can be adjacent to the tumor-thus pulling away from the actual tumor and the possibility of improved hearing. I have Hearing left but it is decreasing monthly-typical for Nf2 and Radiation Therapy. However-I feel in the long run-if it kills the SOB-then at least I achieved part of my goal-not too have my head cut open again. Sorry for the lengthhope you can make a good informed decision and good luck and God Speed. Thanks_Ron

[Timjk]

Thanks Mema and Ron.. I sent an email to my doctor this morning with my question on the difference between CK and Novalis treatment.  Here is his reply.. (which I got back in 30 minutes !!! )..

Hi Tim,

So both methods (cybernife and novalis) are for all intensive purposes identical.  So the question is, can I deliver the novalis treatment in 3-5 fractions, and the answer is yes.  But going back to our previous discussion between single fraction vs. 30 fractions.  I think 30 fractions would have the lowest risk of long term side effects, treating with single fraction the highest, and 3-5 fractions, somewhere in between.  With the dose per fraction still relativley high, I would be very cautious doing the 3-5 fractions (technically call hypofractionation) so close to the brainstem.  Doing 3-5 fx is certainly not wrong, but, I am just more comfortable using more of a standard fraction regimen.

Always happy to answer your questions. Hopefully this helped.

Prakash Chinnaiyan

[Mark]

So both methods (cybernife and novalis) are for all intensive purposes identical.  So the question is, can I deliver the novalis treatment in 3-5 fractions, and the answer is yes.  But going back to our previous discussion between single fraction vs. 30 fractions.  I think 30 fractions would have the lowest risk of long term side effects, treating with single fraction the highest, and 3-5 fractions, somewhere in between.  With the dose per fraction still relativley high, I would be very cautious doing the 3-5 fractions (technically call hypofractionation) so close to the brainstem.  Doing 3-5 fx is certainly not wrong, but, I am just more comfortable using more of a standard fraction regimen.

I think reading between the lines of the doctors response, particularly the comment about the brainstem  exposure, just reinforces what has been said before. The 30 day protocol for Novalis is the safest and best way to treat the AN with that machine becuase it lacks the accuracy to deliver the necessary dosage for a 3-5 day protocol as safely as CK. Both work, but you manage within the machines capabilities and limitations for the best patient outcome.

There are no studies that I have seen that show a 30 day protocol is more effective than a 3-5 in terms of FSR. So it would be incorrect to infer that 30 is safer than 3 by any measure such as tumor control, hearing preservation or facial nerve function. Arguably one could even say that the CK hearing preservation statistics at roughly 75% are higher than any of the machines doing 30. So, while not conclusively proven yet, the studies are suggesting that fractionation is more effective than single dose, but nothing is showing superior results of 3 vs. 25-30 as far as I have seen as well as discussions I have had with the docs at Stanford.


Mark

[Dealy]

TIM- I went through all my papers that Johns Hopkins gave me on the 25 session protocol with FSR they did on me and I  did find this paper that they gave too me from a Study done at Heidelburg Germany. I wish their was some link too it but their is not so I wil condense this paper and highlight the most important aspects
CLINICAL INVESTIGATION (written in 2005) MANAGEMENT OF ACOUSTIC NEUROMAS WITH FSRT-LONG TERM RESULTS IN 106 PATIENTS
WHERE- UNIVERSITY OF HEIDELBERG-GERMANY
TIME FRAME- OCTOBER 1989 TO JANUARY 2004
PATIENTS- TOTAL 106- 14 WERE NF2
METHOD- 57.6 GY IN MEDIAN SINGLE FRACTIONS OF 1.8GY IN 5 FRACTIONS PER WEEK
SYNOPSIS OF OVERALL RESULTS- A) TUMOR CONTROL RATES AT 3 TOO 5 YEARS WERE 94.3% AND 93%
B) HEARING PERSERVATION WAS 98% FOR THOSE WITH USEFUL HEARING-GRADE 1 AND 2-WHILE NF2 HAD ONLY 64% AT 2 TOO 5 YEARS.
C) RADIATION INDUCED TOXICITY TO TRIGEMINIAL NERVE AND FACIAL NERVE WAS 3.4% TOO 2.3%
D) NO DIFFERENCE IN TUMOR CONTROL IN REGARDS TO NF2 AND SPORADIC TUMORS- MEDIAN SIZE OF TUMORS WERE 2CM-AGE MEDIAN 60 YEARS- 5 PATIENTS FAILED AFTER FOLLOW-UP WITH FSRT.
SPECIAL NOTE: LARGE TUMORS WITH CLOSE VICINITY TO CRANIAL NERVES AND BRAIN STEM ARE MORE LIKELY TO DEVELOP LATE TOXICITY TO FACIAL & TRIGEMINIAL NERVE

NOTE- I did develop severe Trigeninial Nerve Toxicity after 9 months-When the tumor swoll- It is being controlled now by a daily dose of 400MG of Neurontin. These are extremely painful and can drop you to your knees in a heartbeat-Thank God they are under control. However I had total numbness of the right side of my face and inside my mouth prior too FSR. The radiation just made it worse. I still have trouble swallowing certain portions of food.

I hope this Synopsis can assist you in your decision making process- Thanks_Ron

[Timjk]

Thank you, Ron, for taking the time to respond.. This is very useful information...