Author Topic: Radiation can be repeated - but few done so far!  (Read 7292 times)

john twoffer

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Radiation can be repeated - but few done so far!
« on: March 08, 2006, 06:11:53 pm »
I'm almost 6 years post fractionated stereotactic radiosurgery (FSR) and the tumor "might" be growing. I have other illnesses and don't want, and probably can't have surgery. My tumor is now 1.3 cm in size, still small.
I had FSR at Johns Hopkins in 2000.
Now, I have researched like crazy to see if radiation can be repeated as it was so easy and spared my useful hearing, and balance and having to undergo surgery. But maybe, I didn't quite get zapped enough to be a permanent success.
In all my research, I have only found Dr. Kenneth Ott at San Diego Gamma Knife who has done GK even 3 times and has still spared the facial nerve. At Johns Hopkins they have repeated FSR on at least one patient and totally lost the facial nerve in that patient who had a larger tumor, I think.
At Pittsburgh they had not had done a repeat gamma knife then, although my research is about 1.5 years old, now.
I would rather undergo GK now, after my FSR may have failed, as now believe that GK is more accurate than FSR. I am sure I will lose the rest of my hearing, but desperately want to save my facial nerve. Please post any experiences about repeat radiation that anyone may know about! Thank you!
John Twoffer
Acoustic Neuroma and Cyst in my head.
I volunteer at:
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ppearl214

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Re: Radiation can be repeated - but few done so far!
« Reply #1 on: March 08, 2006, 09:11:43 pm »
John,

Welcome!

I'm in decision making mode now but will be REAL curious to see replies to this thread as I'm also looking at radio-surgery right now and would love others to chime in with replies to this as well. I have heard the same as you about GK but will lurk this thread to see if others reply.

Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

russ

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Re: Radiation can be repeated - but few done so far!
« Reply #2 on: March 20, 2006, 12:33:41 pm »
Hello
  If I had been losing at 'Poker' for 6 years, I'd try the Roulette table or Black Jack while I still had some chips ( a facial nerve ).
  If radiation failed, why risk it again? Gamma rays ( or, X-rays ) are gamma rays ( or, X-rays ) whether a cobalt source or linear accelerator.
  Or; Many can choose to be 'watch and wait' for a long time.
  Best wait 5 - 6 years between FSR/GK retreatments if so inclined.
  No offence intended. Just trying to make a point.
  Russ

ppearl214

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Re: Radiation can be repeated - but few done so far!
« Reply #3 on: March 20, 2006, 02:58:04 pm »
Russ,

You note GK, but not CK. I'm curious as there is a potential for CK to be used in follow up for other failed treatments, especially for accuracy and fractionated dose.
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

shoegirl

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Re: Radiation can be repeated - but few done so far!
« Reply #4 on: March 20, 2006, 03:25:33 pm »
John,

I was curious about CK too, have you talked to anyone about it?  If not you could try posting your questions on www.cyberknifesupport.org .  I am sure one of the doctors will respond pretty quickly.  They may be able to give you some general advice about retreatment as well as CK advice.

I am with you on wanting to save the facial nerve.  Like you that was one reason I chose CK over surgery.  Plus I was able to retain my hearing.  Please keep us posted. Good Luck.

p.s. Are you going back to JH if you go with radiation again?

Wishing you all the best!

Suzanne
left side 2.0cm x 1.3cm  
Cyberknife - 12/2005
The Barrow Institute, Phoenix, AZ

russ

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Re: Radiation can be repeated - but few done so far!
« Reply #5 on: March 21, 2006, 04:42:44 pm »
ppearl214
  Hi; Well; As I understand, radiation is radiation whether GK, ST, CK, FSR, Proton Beam, "Beam Me Up, Scotty!" - smile -
  Last report I read from the San Diego GK Center was that GK is accurate to 2/3rds mm. Too bad that knowledgable employee of the center is no longer with the ANA support group.
  Now, back to the BlackJack table having given up on Poker.
  I've a new pile of chips!
  Russ

ppearl214

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Re: Radiation can be repeated - but few done so far!
« Reply #6 on: March 21, 2006, 05:40:04 pm »
Russ, thanks for your notes on this... but you only note GK having the accuracy of 2/3mm, which is actually not true. You do not reference the CK accuracy of .87mm.  I know other forms that have worse accuracy (ie; Novalis at 2mm-3mm). I am curious why you do not reference CK?  Do you not see it as a viable form of radiosurgery?  With it's accuracy the best out of all radio-surgeries, I am curious why you do not mention it?

Trying to have faith here.. I start CK in 1-1/2 weeks.

Thanks.
Phyl


 Last report I read from the San Diego GK Center was that GK is accurate to 2/3rds mm. Too bad that knowledgable employee of the center is no longer with the ANA support group.
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

russ

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Re: Radiation can be repeated - but few done so far!
« Reply #7 on: March 21, 2006, 05:58:37 pm »
Hi Phl
  2/3 ( .66 ) mm ( You say it is not true? ) vs .87 mm was it? That's not enough difference to matter.
  Can they determine the exact center of the tumor mass? No.
  Best wishes for a good Tx outcome! At least with CK they won't be screwing a ring to your head!
  Russ
 

ppearl214

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Re: Radiation can be repeated - but few done so far!
« Reply #8 on: March 21, 2006, 06:23:29 pm »
Russ,

I'm sorry you misread what I was noting... that the GK is not that accurate.... that it's accuracy is not .66mm as you note but worse.  GK is still a very viable treatment and yes, I researched it as well for me.  CK, with it's better accurracy (based on the location of my tumor) and lack of headframe was my deciding factor, yet, GK has worked well for others here that seek a single dose treatment and the temp discomfort of a headframe.  There are many of us that are fortunate that micro-surgery doesn't have to be an option. There are those of us with smaller AN growths that are fortunate that non-invasive treatments are just as viable.  If "cutting' doesn't have to occur, then heck, I'm game.  CK had it's birth from the CK.  For those of us that have any form of radio-surgery/therapies (or are about to go through treatments), I think we should be open to the fact that radiation treatments can work well for those that choose it... just as micro-surgery has helped many others.  I have done my research, I have read my findings, I have spoken to numerous micro-surgeons (funny, NONE of them wanted to "cut" me, and ALL recommended radiosurgery and Russ, I live in a medical mecca and have met with many!!) and feel I have made a very WELL informed decision. My hope is that others will research as well, as deeply, as long as their AN allows them and it's not emergent situation.

Some treatments for some, other treatments for others... regardless of what form of treatment a patient chooses, my hope is that it is successful for them. I will not belittle the micro-surgery patient nor belittle anyone choosing another form of radio-treatment than the one I am having. Let's all just be healthy. Nothing more.

Sorry folks for the hijack...

Hi Phl
  2/3 ( .66 ) mm ( You say it is not true? ) vs .87 mm was it? That's not enough difference to matter.
  Can they determine the exact center of the tumor mass? No.
  Best wishes for a good Tx outcome! At least with CK they won't be screwing a ring to your head!
  Russ
 
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

LCT

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Re: Radiation can be repeated - but few done so far!
« Reply #9 on: March 23, 2006, 12:08:48 pm »
Hi ppearl!

I was wondering if you could answer a question for me.  You seem to have conducted a lot of research, and I was wondering if you would mind sharing some information with me.  I posted some time back that my AN has now regrown after 10 years (see post titled Regrowth after 10 years is not cool).  I had surgery to remove my 4.5cm tumor the first time around.  I obviously have no hearing on that side, but remarkably I do still have SOME facial nerve function.  My facial nerve is definitely weakened, resulting in partial facial paralysis.  My regrowth is now about 11mm.  I am in wait and watch mode.  My surgeon believes that I should have radiosurgery this time around (when that time comes).  The chances of me saving my facial nerve are probably not great (even with radiosurgery) due to its weakened condition.  I conclude from your previous post that you believe that CK is the best machine out there.  May I ask why?  Is it because of the accuracy claims?  I know that the doctors on cyberknifesupport.org support the CK.  But of course they do, they work at hospitals that have purchased CKs.  Doctors that work at hospitals that have purchased Novalis machines will support Novalis.  While the CK can claim the better accuracy stats, can't Novalis claim that it delivers fewer "hot and cold" spots to the tumor.  meaning, that the radiation is shaped to be delivered consistently to the entire tumor.  Just searching for information?  Here in Houston we have Novalis and GK.  We have CK in Dallas and San Antonio.  I was leaning towards Novalis, but some doctors (those who make a living using CK) would say this is a mistake. 

LCT

ppearl214

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Re: Radiation can be repeated - but few done so far!
« Reply #10 on: March 23, 2006, 12:47:25 pm »
HI LCT,

I do not profess to be a pro on CK but as to my research, I am more than happy to share what I do know.

All of the radio-treatments are viable treatments.  I also checked Novalis at Brigham/Women's in Boston (where my neurosurgeon is based).  GK locally was researched (at Tufts Medical) as well as Proton at Mass General Hospital.  (I really am blessed that all of the options, as well as microsurgery are available here locally).

In speaking with the Novalis team at Brigham/Women's, the ultimate concern for me was the accuracy of the beam (my AN is still deep IAC with a hint peeking out to the CP angle region). In my case, accuracy was the utmost concern since it's still in the IAC and the dimensions of the growth.  The Novalis website claims its accuracy to be between 2mm-4mm.  The radio-oncologist at BW felt he could probably get within 1.5mm accuracy and recommended a 27 day course of treatment (for me and my living situation -- job, homelife, etc, to take 27 days off from work was not a good choice for me although I understand why he made the recommendation... he did note that he could bring it down to 5-days course of treatment knowing each dose would be far stronger).

In talking on the CK support forum, I remember one important thing.  These dr's that volunteer their time to answer our questions are not paid to do so... nor are they apt to gain some of us as patients (due to our vast locations).  I believe that they are willing to share their thoughts and opinions based on the patients they have treated. I have seen them note up front "based on my experience", so they don't claim to know it all. They have shared with me in my posts there their thoughts on meds, doses of treatments, etc.  I don't take their word as G-d, but having done many CK procedures that they have, I listen to what they say and make my own judgement call. I have also spoken to many CK patients as well (some with historical data, some going through treatments now), which helped me with a patient's perspective as well. I tried to research CK from all angles to help me make a better informed decision.

In my research, I have heard that if micro-surgery has occured and regrowth has happened, the CK seems to be a viable radio-treatment for regrowth, based on accuracy. I am not aware of any of the other radio-treatments that can make the same accuracy claim as CK and maybe someone else here can elaborate on it.

I know CK is "newer" compared to many other radio-treatment options. True, there is not enough historical data to back up it's long term efficacy.  But, for me.. and only me.... I have no issue trying this form of treatment, based on it's proven track record of accuracy based on the data avaiable today....

My understanding is that radiation is not "shaped" or "bends" but I think Mark or the dr's on the CK forum board can better answer that question.  You are fortunate to live in an area (like myself) where there are many options.  Surgeons are surgeons and they like to cut.  Novalis is Novalis and Novalis practitioners like Novalis, etc etc etc.   Beth Israel has only had CK for 7 months, has done a few AN's (although they have done many brain tumors, including Meninginoma's).  Do I wish they had more experience? Sure... you betcha. BUT, I asked where they were trained on CK, who did their training, how many brain tumors they have done, etc etc. For me and knowing Beth Israel's reputation, as well as the recommendation of other patients and dr's that are familiar with BI and their CK program, I feel, for me and my situation, I feel I made the right choice and look forward to getting this over.

LCT, I know for you and your situation... after your research, discussions, feedbacks, etc... you will make the right decision for you, regardless of which viable form of radio-treatment you choose.   Know that they are all viable... and in the case of post surgerical/regrowth, my thought would be to lean towards as best accuracy as you can get with minimal affect towards normal tissue structures.

I don't know if it helped, but glad to help if it does.

Phyllis :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

john twoffer

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Re: Radiation can be repeated - but few done so far!
« Reply #11 on: April 03, 2006, 03:21:27 pm »
Hi, I started the thread and thanks for the great replies. I'm disappointed that nobody who has had radiation twice has responded. There are few cases, I guess. I am pretty much forced to have radiation, because I am too sick for surgery. I am hoping that Gamma knife (GK) 6 years after failed FSR, will still save my facial nerve. I suppose hearing is bound to be lost because that is the most sensitive. My tumor is just 1.5 cm now, It was about 1.0 when it was treated with FSR those years ago.
I'd still like to hear from people who have had radiation twice!
My best,
Bradley
Acoustic Neuroma and Cyst in my head.
I volunteer at:
www.AcousticNeuromaFoundation.org

jamie

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Re: Radiation can be repeated - but few done so far!
« Reply #12 on: April 03, 2006, 06:27:18 pm »
Hi Bradley, it does seem that there are not many who have had radiation treatments twice, I guess that's kind of a good thing though. There doesn't seem to be many (none that I can recall) on this board that have had surgery after radiation either, a few post that they may need to but then seem to disappear. It would be very helpful for those making their decision to read some real life outcomes following a second procedure. I hope you are able to get good results the second time around. Good luck and keep us posted! :)
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

FlyersFan68

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Re: Radiation can be repeated - but few done so far!
« Reply #13 on: April 04, 2006, 08:06:26 am »
Hey Bradley, 
   There are so many people that have or had AN's that don't even look at these boards. Looking at the top right corner as I write this note I notice that there are not even 1,000 members. There are nearly 3,000 people diagnosed with AN every year. One of the reasons I elected surgery was for the "hopes" of completely eliminating this problem once and for all from the start even though regrowth can occur to anyone here on this board. There is no guarantee with any treatment so please don't beat a dead horse. I am sure there are plenty of people out there that have or had the same problem you currently face. Maybe those that experienced radiation twice elect not to write on these boards. You mentioned that surgery cannot be performed so I guess half the battle is already won. If I had to deal with a regrowth I would seek out the very best institution possible so that if there was a negative turnout at least you know you tried the best. If you do choose radiation then why not look into Cyberknife?? If Gamma Knife provided the best results then Cyberknide probably wouldn't be around?? It all depends on where the tumor is located. Keep recycling this thread or maybe check the AN archive for those that had repeated radiation treatments because if this was me I would also feel the need to speak with others. There's just about every story you can imagine on the AN archive. When you do find these people give them a call or send them an e-mail. Good Luck!

okiesandy

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Re: Radiation can be repeated - but few done so far!
« Reply #14 on: April 06, 2006, 04:55:33 pm »
To LCT,

RE your question about CK and other forms. Dr. Medbery on the cyberknife support site does both CK and GK for AN's. Address your questions to him he will give you a honest answer in a personal email to him. He has two email addresses posted on the cyberknife site.

In his office he told me CK is a little more accurate. I had a choice of the two because I didn't have hearing in my AN ear. I know he suggests CK if you have hearing. Otherwise he explains the two and leaves it up to you.

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)