Author Topic: Cystic AN and Cyberknife  (Read 3443 times)

mwatto

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Cystic AN and Cyberknife
« on: September 05, 2020, 09:24:43 pm »
Hi all new here. I was wondering if anyone here has had Cyberknife or GK with a cystic AN? I have a 2cm AN with two small cystic components and had Cyberknife in early 2019 with shrinking at first MRI 8 months later. I do stress despite the fact that my specialist here in Perth (Professor Joseph who has abt 30 years experience in radiation oncology) said I was an ideal candidate. I am 59 years old and the AN is in a tricky location - he said surgery would have been long and complicated. Anyhoo - I still get anxious based on conflicting info re cystic unpredictability and radiation. It helps to know how others are going!
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

gbly

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Re: Cystic AN and Cyberknife
« Reply #1 on: September 12, 2020, 10:14:31 am »
Good day mwatto.
I don't have they cystic AN, but from the different videos and discussions I have been reading about the cystic respond wonderfully to cyberknife. Which it sounds like you got those results.  I know we will all stress, it is just how it goes.
I am starting CK next week, so excited to get the party started, but will always worry if I should have removed it surgically.  Then again the surgery always has the concerns for me.   I just am not ready for that, and the radiation statistics seems to exceed surgery these days.

I have a rapid growth and they say that they respond well since they are cells not the spongy tissue. Grew fast so more cells than sponge???
Anyway I will take those odds.

Keep positive and embrace all of the little moments as well.
gbly
« Last Edit: September 12, 2020, 08:16:43 pm by gbly »

mwatto

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Re: Cystic AN and Cyberknife
« Reply #2 on: September 13, 2020, 10:07:07 pm »
Thats so funny! I just replied to your post too! Thank you for the response - yes so far so good :-) 
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

gbly

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Re: Cystic AN and Cyberknife
« Reply #3 on: September 14, 2020, 08:35:22 am »
Thank you and I will keep everyone posted on how it goes.
Please let me know how you MRI goes.
GB

SP

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Re: Cystic AN and Cyberknife
« Reply #4 on: September 28, 2020, 08:25:03 pm »
Hi mwatto,

I had CK 5 years ago on my cystic AN. The cystic component is now less visible on MRI and overall feeling good as time ticks on.

wishing you good health,

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

gbly

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Re: Cystic AN and Cyberknife
« Reply #5 on: September 28, 2020, 10:42:34 pm »
Stella,
That is great news and always good to hear how the progress is going.  5 years, I'd take that!
Thank you for the update.
gbly

SP

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Re: Cystic AN and Cyberknife
« Reply #6 on: September 28, 2020, 10:58:52 pm »
Hi gbly,

Thanks  :D ! (the latest full update is here: https://www.anausa.org/smf/index.php?topic=22640.msg979781118#msg979781118)

Wishing you great success and healing from your treatment with proton therapy.

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

mwatto

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Re: Cystic AN and Cyberknife
« Reply #7 on: October 02, 2020, 10:20:59 pm »
Hey Stella - you made my day! Getting my second MRI result and consult this Monday and this post put a smile on my face!   ;D
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

SP

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Re: Cystic AN and Cyberknife
« Reply #8 on: October 03, 2020, 12:18:51 am »
Hi Michele,
lots of luck for positive outcomes  :D

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

mwatto

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Re: Cystic AN and Cyberknife
« Reply #9 on: October 03, 2020, 12:23:36 am »
Thanks heaps Stella :-) I feel wonderful two years out - really fantastic actually!
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

erntinta

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Re: Cystic AN and Cyberknife
« Reply #10 on: January 27, 2021, 02:02:39 pm »
I just got results yesterday for a followup scan.  My cyberknife treatment was two years ago.  I had mixed cystic.  Doing well.

23 x 16 x 13 mm=> 11 x 10 x 9 mm
Diagnosed 12/11/2018
Mixed cystic
2019-01: 23 x 16 x 13 mm
2020-01: 13 x 13 x 12 mm
2021-01: 11 x 10 x 9 mm

mwatto

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Re: Cystic AN and Cyberknife
« Reply #11 on: February 02, 2021, 12:15:57 am »
Thats really good to know erntina! All good here also despite first time in lockdown (Perth Australia)
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

mwatto

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Re: Cystic AN and Cyberknife
« Reply #12 on: April 27, 2021, 07:20:59 pm »
hey Stella how are you going? I am still getting some nerve pain around ear (still cant sleep on the said two years out from CK) other than insomnia am doing well - hearing and balance fine. I am now taking Bio 30 after chatting on email with Prof Maruto as he has spent many years studying on the NF2 pathways which  similar to sporadic which I have. Wish I could compare with others taking...seems no one is.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

SP

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Re: Cystic AN and Cyberknife
« Reply #13 on: April 28, 2021, 12:20:38 am »
going ok Michele -- except for lack of sleep & I struggle a bit when i forget to wear my hearing aid on left.

what is the Bio 30 ?? (is it propolis?) -- do you know what the therapeutic benefit is for the NF2 pathway?

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

mwatto

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Re: Cystic AN and Cyberknife
« Reply #14 on: April 29, 2021, 02:16:58 am »
Hi Stella yup me too re insomnia I am still on melatonin and today my naturopath suggested I try a sample of Kava (no alcohol allowed). The Bio 30 is interesting it was mentioned way back in 2011 in the Nf2 forums. I contacted Prof Maruto who tsuggested that acoustic neuromas have same pathway affected. He shared some papers with me. Stuff tastes vile but I mix in with honey. It is bee propolis so not if you have allergies- I dont. Tried to attach but I cant. Anyways google it here is one link from Manuka health. http://www.bio30.com/ and here https://www.researchgate.net/publication/23193630_CAPE_Caffeic_Acid_Phenethyl_Ester-based_Propolis_Extract_Bio_30_Suppresses_the_Growth_of_Human_Neurofibromatosis_NF_Tumor_Xenografts_in_Mice
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing