ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: PCS1954 on June 30, 2022, 11:28:52 am

Title: Had Gamma Knife 15 years ago. Tumor growing again.
Post by: PCS1954 on June 30, 2022, 11:28:52 am

Looks like surgery is in my near future.  Appreciate any experiences you can share.

Title: Re: Had Gamma Knife 15 years ago. Tumor growing again.
Post by: donjehle on June 30, 2022, 07:10:17 pm

Wow!  I am so sorry to hear that your tumor is growing again after you had GK 15 years ago.  That news had to be crushing!  I would have thought that it was dead for sure after all this time.  I understand that there have been great improvements in surgery and radiation in the last 15 years, so hopefully your experience this time will be better than what you experienced 15 years ago.  I would love to hear the rest of your story, where you had your GK done, what your side effects were, if any, and how you found out it was growing again.  What approach will you take in your surgical treatment?  Thanks for sharing!

Title: Re: Had Gamma Knife 15 years ago. Tumor growing again.
Post by: mwatto on July 03, 2022, 09:00:18 pm

Hi I am wondering if its neuro inflammation driving regrowth. I am on LDN, sulforaphane, fucoidan, boswellia, melatonin and now and again bromelain...and looking into resveratol. I had a flare of symptoms after the Pfizer jab- am much improved 8 months on but have read that inflammation specifically IL6 can affect the PAK-1 pathway and this in turn can cause issues. Might be worth seeing a functional doctor and trialling some things aimed at calmimg the brain. I know also that tamoxifen and even low dose aspirin and mifpresterone are drugs of interest. Because what we have is essentially a myelination disorder there are some things that might help. Strss, lack of sleep, diet etc  all factors.   https://academic.oup.com/neuro-oncology/article/21/3/314/5155625
Many natural compounds work on this...

Title: Re: Had Gamma Knife 15 years ago. Tumor growing again.
Post by: gbly on May 01, 2023, 02:19:39 pm

PCS1954,
Sorry to hear that your AN is back.  What surgery are they looking to do?  I have heard that the AN can be "sticky" after radiation.  Any info from the doctor on this or if they expect a "normal" procedure?

Good luck and keep us posted please.
GB

Title: Re: Had Gamma Knife 15 years ago. Tumor growing again.
Post by: bfoley on May 03, 2023, 04:03:45 am

Hi PCS 1954 -

I had gamma radiation in 2019 with Dr. Link at Mayo.  2022 MRI confirmed tumor was growing again (and by 3-4 mm from the prior year MRI).  With the amount of growth in the short time, we all agreed a second dose of gamma would likely not have any different outcome in stopping growth.  I had translabyrinthine surgery this (2023) January with Dr. Link and Dr. Neff at Mayo.  The tumors become harder to remove the more times it is radiated.  The tumor was removed completely. Pathology showed it was definitely viable (alive and growing).

Everyone is different.  Your individual situation, with it being so long since radiation, might be a contributing factor. makin sure you are comfortable with your care team and the choice of action was my first priority.  Things went very well for me.  I am happy to chat if you want any other details about my personal journey. 

Take Care!!!