Author Topic: HELP - Gamma Knife "failure" - anyone who is willing to share?  (Read 339 times)

bfoley

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HELP - Gamma Knife "failure" - anyone who is willing to share?
« on: November 03, 2022, 04:17:11 am »
Went to my 3rd annual post Gamma MRI yesterday.  MRI results are not what I was expecting.  I am in total shock.

The Doctor was in surgery and not available. My meeting was with the Physicians Assistant.  They will be calling me today to discuss options.

She stated that if Gamma is an option, with the failure of the first (which is only 10% failure rate), the success rate of a second procedure is only 75%.

Again - I am in total disbelief.  Anyone willing to share their experience would be appreciated. 

Going to post this in post treatment as well - sorry for the duplicate post!

gbly

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Re: HELP - Gamma Knife "failure" - anyone who is willing to share?
« Reply #1 on: November 03, 2022, 03:12:03 pm »
bfoley,
So sorry to hear that the MRI did not go as expected.  So are you saying that the tumor did not respond to the radiation at all?  Or is it going slower than expected?  I know they told me it would take multiple years for the tumor to respond.  You have me a little worried too, I go in January for my 3rd post MRI.

I guess the other question would be how much of the tumor responded to the gamma?  if you add the 75% and 25% has responded do you have a 100% success?  or are they saying they only give it a 75% chance of responding vs a 90% success rate from the first treatment?  Did you only get one dose of radiation?  What are the dangers if you do a second or even third dose?

75% is better then 25%, but you definitely need to get the call with the doctor.  I would be curious to hear what they say, and good luck.  I want to say I say another post from someone looking or just did the same thing that you are talking about.
Good luck
GB

bfoley

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Re: HELP - Gamma Knife "failure" - anyone who is willing to share?
« Reply #2 on: November 04, 2022, 04:14:37 am »
I got the call in the afternoon.  Surgery is my only option.  Since I am already SSD, I will be having the translabyrinthine surgical approach.

When originally diagnosed, I knew I would try Gamma first if it was an option so I have not done much research on surgery and recovery and all.  Guess I will be digging through the forums.

gbly- I had gamma, which is one round of radiation.  The stats I was quoted are 90% effective for stopping growth.  If it "fails" i.e. growth appears, its usually within the first 3 years.  Therefore annual MRIs for a while.  This was my 3rd annual, and shows definite growth.  For some tumors they can do gamma a second time, and the "success" rate of those people is 75%.  I am not a candidate for gamma a second time.   

Abdullah85

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Re: HELP - Gamma Knife "failure" - anyone who is willing to share?
« Reply #3 on: November 04, 2022, 11:40:48 pm »

 bfoley,

 Sorry to hear the Gamma knife didn't control the tumor, hopefully you will have better luck with surgery.


 I have AN tumor and is thinking to do a Gamma Knife

 Can you tell me where have you done your Gamma knife ?

 What was the size of tumor and what was the power of radiation ( 11,12,13 or higher ) if you remember .



DodgeAU

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Re: HELP - Gamma Knife "failure" - anyone who is willing to share?
« Reply #4 on: November 05, 2022, 03:02:09 am »
Sorry to hear about the re-growth, bfoley. Prior to my GK early this year, my Oncologist has advised me that in case there is re-growth after my first treatment, a second GK can be performed.

Did your doctor explained why yours is not a candidate for a second GK treatment?

Good luck and all the best on your surgery.
Oct 2022: MRI shows no growth
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm treatment recommended
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left, Severe hearing
                 loss and mild tinnitus

mwatto

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Re: HELP - Gamma Knife "failure" - anyone who is willing to share?
« Reply #5 on: November 05, 2022, 03:04:55 am »
I had Cyberknife 4 years ago and was told if it fails they will reradiate if needs be. Technology is improving all the time- eg FLASH is a new modality I was reading about.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.
MRI 2021 stable no change
MRI 2022 stable no change.

gbly

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Re: HELP - Gamma Knife "failure" - anyone who is willing to share?
« Reply #6 on: November 06, 2022, 03:08:44 pm »
bfoley,
Thank you for the clarification.  Sorry to hear your only option is the surgery.  None of us are ever prepared to hear what you did, but thank you for being here with us on the next part of the journey.

We are here for you and good luck.
GB

mwatto

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Re: HELP - Gamma Knife "failure" - anyone who is willing to share?
« Reply #7 on: November 06, 2022, 10:18:53 pm »
Paul wellens a member here was told his had failed after 3 years too...his Munich specialist told him to wait as within 5 years hard to tell if pseudoprogession. (Chang video in the AN webinar library also says this re need 5 years evaluation). Paul waited and it shrank again at 5 years so was pseudo progression. I wonder if worth reaching out to Dr Chang (Stanford) too. Maybe just maybe as this not yet at 5 years it could be pseudoprogression - swelling, shrinking, swelling, shrinking as it responds to the gamma? Also I reread  Tumbleweeds posts now and again as I have got so much from them plus facts and most of all hope.
« Last Edit: November 06, 2022, 10:33:35 pm by mwatto »
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.
MRI 2021 stable no change
MRI 2022 stable no change.

UkulelesAreAwesome

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Re: HELP - Gamma Knife "failure" - anyone who is willing to share?
« Reply #8 on: November 11, 2022, 06:27:02 pm »
Bfoley I am very sorry you received the news that the tumor has grown. None of us were prepared to find out we have a tumor so you have now been given an unexpected and difficult diagnosis twice and my heart goes out to you. I have not posted often here but bfoley you were my main and only support prior to my gamma knife and after gamma knife 3 months ago. Your dedication to helping people on this forum is something I admire and respect. I was so thrilled to meet you in person. I wish I knew what to say to be helpful. My odds of failure with gamma knife were quoted at 10 to 20 percent. I am scared. I hope there is someone out there who had gamma knife followed by regrowth who can add the benefit of their thoughts and experiences on the topic. You are amazing bfoley and I will always be indebted to you for going above and beyond to help me before you had even met me.

 


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