Author Topic: Regrowth after Translab  (Read 201 times)

ColleenS

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  • Do not fear, for I am with you. Isaiah 41:10
Regrowth after Translab
« on: October 07, 2018, 12:04:56 pm »
Has anyone had stereotactic radiosurgery on their AN? Most everything I have read is either gamma or Cyberknife. I have gone way back and have now seen some others that had the same radiosurgery. The long-term side effects do not seem extreme. Yay! My tumor has grown back to 1.6/1.6/1.3 cm in just 16 months. This time they are recommending radiation. I would like to hear from anyone who had this type of radiosurgery.
« Last Edit: October 07, 2018, 12:59:45 pm by ColleenS »
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of the tumor; no facial issues
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14/17 & sprung on 5/15/17.
5 Radiation Treatments 10/2018 after tumor grew back.

notaclone13

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Re: Regrowth after Translab
« Reply #1 on: October 07, 2018, 03:06:46 pm »
Hi Coleen,
I have read of many instances on the forum where GammaKnife or Cyberknife is used to treat tumors after partial surgical removal (also called debulking). This strategy is often used for large tumors that cannot be completely removed without damaging the facial nerve. I correspond with 2 people locally that had partial removal of large tumors followed by Cyberknife on the remainder. One had surgery last December and Cyberknife in March and is doing well. The other person is recovering from her surgery and will have Cyberknife in a few months. I am sorry you have had regrowth as you have been through so much already. But they will likely use a slightly higher dose of radiation this time around and obliterate the little bugger once and for all.

rupert

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Re: Regrowth after Translab
« Reply #2 on: October 07, 2018, 06:40:49 pm »
Stereotactic radiosurgery is Gamma or Cyber knife.  Actually called image guided stereotactic radiosurgery.  Are you possibly thing of another form of radiation treatment?

notaclone13

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Re: Regrowth after Translab
« Reply #3 on: October 08, 2018, 09:59:49 am »
After a little research I came across a publication that I believe describes the type of radiation recommended for Colleen. A link to the full text of the publication is:

https://www.redjournal.org/article/S0360-3016(02)02763-3/fulltext

The paper is authored by J.A. Williams at Johns Hopkins who has published 3 papers on this topic. Radiation is delivered by linear accelerator, but is not referred to as GammaKnife or Cyberknife. He mentions that this approach is frequently used when tumors grow back after surgical removal. It appears that 5 treatments are given and the usual dose of radiation is in the range of 25 Gys. It appears it is a very effective means of eliminating further tumor growth with approximately an 18% reduction in tumor size with minimal damage to the facial nerve.

My understanding is lower doses of radiation (usually around 13 GYS) are given by Cyberknife or GammaKnife in effort to preserve hearing. However, if hearing is already gone, higher doses of radiation may be preferable with larger tumors or to control tumors that have regrown.

At any rate, the 3 publication by Dr. Williams report very good outcomes for tumor reduction with minimal damage to healthy tissue.


JLR

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Re: Regrowth after Translab
« Reply #4 on: October 13, 2018, 08:05:19 pm »
HI Colleen, I believe you and I had AN surgery around the same time. I'm almost 2 years post op. I had regrowth and radiation was recommended but thankfully the tumor is status quo. How many sessions will you have. Are there any side effects. I have facial paralysis and fear the radiation would make it worse. I'm due for another MRI and hoping all is well. Good luck to you. Please keep me posted on the radiation and how you are feeling.  Regards, Joan

ColleenS

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Re: Regrowth after Translab
« Reply #5 on: October 16, 2018, 08:44:24 am »
Thanks so much, everyone for the responses. So I am in Nashville at Vanderbilt this week getting my five radiation treatments. My radiosurgery is not gamma or Cyberknife. As someone mentioned this other type is more aggressive and used when the hearing is already gone (mine is gone) and the tumor is aggressive. Mine has grown back almost to the same size and is back on my brain stem - ugggg. So the first treatment went alright. I do not feel much different. My AN side of my face feels "full" and twitching a bit. But other than that, all is good.
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of the tumor; no facial issues
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14/17 & sprung on 5/15/17.
5 Radiation Treatments 10/2018 after tumor grew back.

notaclone13

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Re: Regrowth after Translab
« Reply #6 on: October 16, 2018, 09:20:07 am »
Good luck with your treatments Colleen. I’m sorry you have had so many trials with the AN. But from what I have read, this should eliminate further issues.