radiation

[holly-bear]

Has anyone herewith NF2 had radiation of any type?  If so was it a success?  Did it cause more problems?  I was reading something from House Ear that people with NF2 are more at risk for developing cancer because of the tumor suppresser gene being messed up.  I talked to a woman that took the idea of Fractionated Gamma Knife to Dr. Noren in RI.  He tried it on her and it was a major success.  8 Years later the tumor has shrank 75% and she never had any side effects.  She said that ck and fsr is not accurate enough as gk.  So if I go radiation this is the route I want to go.  I am totally blind, and completely deaf in the right eear.  I want this tumor fixed!  I would love to have it removed but that would mean taking out my nerve and I just can not lose my hearing.  I'm scared to death.  I want to do radiation to try to save the hearing but I am scared of radiation too because people tell me it doesn't work on NF2 tumors.  Anyone have any advice?  Please help me.

Holly

[tony]

I am NF2 - but despite all, I dont quite have the issues
you have to deal with.
You must be very concerned - I do wish you well
Clearly this is your choice - and not an easy one for sure
So the cancer/radiotherapy link ?
If you check out the Sheffield gamma knife results
(over 10 years, all NF2 - 100 in all ?)
They are on the web (Royal hallamshire - J. Rowe or Radaz )
There is no direct cancer correlation - indeed the only time
they saw an odd result - the tumour growth/prognosis
had already suggested something other than an AN
BEFORE treatment started
Equally there maybe a surgery route that avoids
the hearing issue - it depends a bit how large and where
the tumour is - it also depends (as does the gamma)
the current state of hearing - sheffield quote
40-40-20 ie 40% no change, 40% down a bit
and 20% v.poor or no hearing 10yrs post treatment
(I suspect Norens figures are better - but you seldom get
NF2 only figures for him)
Seldom does hearing improve with radiotherapy
- so the current state of play is important
Finally I do have contacts with the NF2 Crew
- if you want I can send direct etc
I hope this helps - if you need any more input
please ask
Best Regards
Tony

[holly-bear]

Yes the link for the thing from house is
http://www.houseearclinic.com/pro_acousticneuroma.htm
We strongly recommend against radiation therapy for NF2 based upon our results and the unknown effects
of irradiation in a condition known to result from a mutation in a growth control gene(19).

And also Dr. Friedman basically told me the same thing over the phone. 

Right now my hearing is good.  I may have lost a little with the lower tones but I can still hear pretty damn good.  The right ear of course is gone and I am trying to go to Nashville to get an ABI put in but I hear those don't work that well for some folks anyway and needs lipreading.  But I am hoping that if the ABI is all I have then I can manage to use it without the lipreading.  You'd be surprised what you can do when it's all you have.

I'm still waiting to hear back from Noren.  Hopefully I'll hear something soon.  Let me ask you a hypathetical question.  If this was you, and you were in my situation being totally blind and deaf in the other ear, what would you do?  Would you do the radiation if all the doctors told you theyy were going to take the acoustic nerve out with the tumor?  My left an is 2.8cm and the right is 1.1cm.  They aren't concerned with the right one, just say take it out to get the ABI otherwise leave it alone.  So what would you do if you were in my shoes knowing that surgery would definetely leave you deaf on top of blindness.  Would you give the radiation a chance just hoping that maybe some hearing could be saved?  Even a little?

Holly

[Mark]

Holly,

My understanding is that AN's associated with NF2 can be treated effectively with radiation but that the control rates are somewhat less than "standard" AN's. I can't give you anything definitive on that but would suggest you post that question over on the CK support board at http://www.cyberknifesupport.org/  and let one of the radiation oncologists who monitor that site offer you an opinion. HEI and Dr. Friedman have a great reputation for surgery but they have yet to demonstrate to me an equal understanding or lack of bias towards the radiosurgery option. I think you would be doing yourself a disservice to solely rely on HEI to effectively discuss whether radiation is a viable option for you or not.

Mark

[holly-bear]

I've heard that several times about HEI being mostly surgeons and loving to cut!  Also Dr. Medbary told me that the control rate for nf2 was about 85 as aposed to 98 with sparatic ans.  He also told me the cancer stuff was a bunch of balony.  There has only been like 1 or 2 cases I think and 1 of those the tumor was thought to be cancerous before the radiation.  So I've got his opinion and he thinks that for me CK would be the best option.  He says I have nothing to lose.  If radiation doesn't work then have surgery.  But then I hear that surgery after radiation is harder.  Do you know if that has any truth to it?

Holly

[Mark]

Holly,

Glad to hear you've already talked with Dr. medbery. I knew the control rates were different for NF2, but it helps to know it's 85 /98.

Relative to surgery after radiation. The conventional wisdom for sporadic AN's would be why base your decision on something that is very unlikely to happen (<2%). Given the NF2 being at 85% , it is still unlikely, but certainly a more possible occurrence. The common answer is that surgery after radiation is more difficult but there aren't any compelling studies that I have seen on that. Most of where I hear that coming from is surgeons who are trying to dissuade patients from considering radiosurgery to begin with. What I have read is that the texture would definitely be different but some surgeons say it's harder to remove, some the same and some easier. The great variable is the quality of the surgeon your asking. Obviously , there is a relatively wide range of skill among surgeons in general , and certainly with AN's. Is the "harder" answer coming from a top drawer practioner or someone who has only done a few. A study would have to control for surgeon skill level as well as the type of radiation protocol used. In my view, I would assume it may be more difficult , but not necessarily mean a reduced outcome in the hands of a skilled surgeon.

Mark

[tony]

Yes - you have encountered the "big divide" between surgeons and
radiotherapists - it exists but no-one can quite explain why
All I would say is that Sammi - he of 3,000 + surgical AN OP`s
also has a gamma machine on site for the non-surgical cases.
The results for NF2 are unknown ? - maybe - there are alot
fewer of them for sure, and few units express the numbers
as NF2 only - normal AN`s are better recorded
The use of radio is also linked to age of patient
- under 20`s they tend not try - or advise against
may depend on your age
Forgive me here - how many years young are you ?
The size of tumour is important - as swelling post RAD
is not unknown - 3.0cms is about the largest
but again it does rather depend where it is
Noren is pretty skilled in this - worth talking with him
In terms of Tumour/cancer link - the missing
gene does not affect the patients tendancy to
grow or not grow cancer type cells
It is on the schwannova(?) type cells that the growth
is not moderated/controlled
These are not cancer cells - but natural cells that occurr
in all human beings
I think the control rates expressed are about right
- remember with NF2 you can regrow from very close
to the original site - how the do you then tell if its a "new" one
or the old one come back ?
(though surgery results for NF2 "only" are not quite
as good as normal AN`s - for similar reasons)
If you go with gamma or similar you will need some patience
as they watch and wait the outcome - you might not know
for 3(?) years or so that it has worked
Radiation might give you a ten year window
- that surgery might not.
Good luck in your quest
Best Regards
Tony

[Dealy]

Holly Bear- I am an NF2 and I had FSR Radiation last summer at Johns Hopkins. They utilized a protocol established in Germany from a Study of 106 patients-25 sessions over 5 weeks. This protocol established their was no difference between Nf2's and Regular An's-although the long term treatment outcome could not be defined because of the lack of numbers of NF2. So alot what Tony and Mark have said is on target. My hearing is now down too 50%-I am deaf in my left ear-tumor is in my right ear-I did lose a substantial amount of hearing. I have too use a Hearing Aid too hear. However i have developed Trigeminial Neurgilia from the damage too the facial nerve. It is being controlled at this point with a 400MG dose daily of Neurontin. No fun to make these kind of choices. I am coming up on a year and a half out post-radiation. Tumor swoll at 9 months-and shrank back down and is showing signs of necrosis in the center. However-by no means am I out of the woods yet. Tumor was around 2.5CM going in-is now at 2.6CM and holding. At 2.8CM-I stongly doubt being an NF2 that radiation will perserve your hearing rtoo the point it is now. Best Advice I can give at this point is maybe consider surgery on the 2.8 and monitor the 1.1CM. Hope you can come too some form of conclusion-so sorry for your situation-Thanks_Ron.

[Raven]

Hi everybody,

 Holly, this sounds all to familiar as I'm heading down the same road as you, I'm glad the more experienced NF2 guys chimed in. I've been thinking about what to do with my right side, which is my good side. I'm having surgery next Wednesday to remove the one on the left which the hearing is just about gone, both are about 1cm. We really haven't discussed the right / good side yet, need to see the outcome of the surgery. My Dr. did breifly mention GK for the right side and that surgery is more difficult if needed after GK. Tony, Mark and Dealy have given you and me some great advice, just what I was looking for. Still don't know what to do, one tumor at a time, the input of my Dr. will probaly be the deciding factor as it seems risky either way. My Dr.s are going to have their hands full with me next week, but maybe I can get some info from them concerning this.

Keep us posted Holly

John

[bweaver]

I am new here but I also have NF2 and have had GKS on three tumors. It did not shrink any of the tumors but it did halt them.  It has been 3 years and they are still the same.  I wanted to try this route before trying surgery again and so far it has worked.  From my understanding, they don't know if it has halted them forever but it has at least put surgery further down the road. I had no lasting side effects from the GK. I do remember them mentioning it being harder to do surgery after radiation but I didn't care......I didn't and still don't want another surgery unless there are no other options. Barbara

[ppearl214]

I am new here but I also have NF2 and have had GKS on three tumors. It did not shrink any of the tumors but it did halt them.  It has been 3 years and they are still the same.  I wanted to try this route before trying surgery again and so far it has worked.  From my understanding, they don't know if it has halted them forever but it has at least put surgery further down the road. I had no lasting side effects from the GK. I do remember them mentioning it being harder to do surgery after radiation but I didn't care......I didn't and still don't want another surgery unless there are no other options. Barbara

Hi Barbara and welcome. That is certainly good news if the growths are now stunted.  Continued wellness to you and hope you continue to do well.

Again, welcome.
Phyl

[holly-bear]

That's awesome that the gk has haulted the growth!  So happy for you.  That is the type of success i like to hear.  For me if I could keep my hearing even for 1 more year that would be better than nothing.  I am just so scared of losing my hearing.  If I had sight this wouldnt' be such a problem for me, but its the blindness and the deafness that just freaks me out.  Did you have one major dose of GK or fractionated GK?  I talked to the lady that took the fgk idea to dr. noren and he said he was willin to give it a go and 8 years later its shrank75% and she is just totally thrilled.  I'm still waiting for Noren to get back with me and let me know what his success with FGK is with nf2ers.  When he lets me know I'll let you all know.  Thanks for all the replies.

Holly

[bweaver]

Phyl- Thank you for welcoming me!
Holly- I had to go in 2 different sessions because of the way they had to position the helmet they couldn't get to all 4 tumors. So they did 2 tumors and then the other 2 about 2 weeks later. It was not fractionated I only had to go twice because of the positioning. In my other post I stated 3 tumors but my husband just corrected me that it was actually 4. Bilateral AN's and 2 meningioma's.
                                                                              Barbara

[Dealy]

Holly Bear- The reason I chose FSR and Johns Hopkins (I did e-mail Dr. Noren) was because of results that I read from people who received FSR and were successful at JHH including one NF2 from Texas. This woman had a 2.7CM on one side and I believe a 1.8CM on the other. She does not post on this site but the last I heard from her-  her hearing prevailed for almost 5 years then fell too 40%. She got a Cochlear Implant the last time I heard in the fall of this year. However too get one you need too have an intact Hearing Nerve and you cannot have anymore MRI's only Cat Scans. The last I heard-both tumors were dying. I have not heard from her for quite some time but I know she posts on another site. Dr. Noren is a pioneer with radiation and I know he has dealt with NF2's I would be interested if you correspond with him about his opinion on a Cochlear Implant after receiving radiation. Just some input I thought of since my last post that I had not thought of. My memory really sucks sometime. Thanks-Ron