Cystic AN and Cyberknife

[mwatto]

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!

[gbly]

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

[mwatto]

Thats so funny! I just replied to your post too! Thank you for the response - yes so far so good :-) 

[gbly]

Thank you and I will keep everyone posted on how it goes.
Please let me know how you MRI goes.
GB

[SP]

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

[gbly]

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]

Hi gbly,

Thanks  ! (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

[mwatto]

Hey Stella - you made my day! Getting my second MRI result and consult this Monday and this post put a smile on my face!   

[SP]

Hi Michele,
lots of luck for positive outcomes 

Stella

[mwatto]

Thanks heaps Stella :-) I feel wonderful two years out - really fantastic actually!

[erntinta]

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

[mwatto]

Thats really good to know erntina! All good here also despite first time in lockdown (Perth Australia)

[mwatto]

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.

[SP]

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

[mwatto]

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