Regrowth after Translab

[ColleenS]

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.

[notaclone13]

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]

Stereotactic radiosurgery is Gamma or Cyber knife.  Actually called image guided stereotactic radiosurgery.  Are you possibly thing of another form of radiation treatment?

[notaclone13]

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]

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]

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.

[notaclone13]

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.

[JLR]

Hi Colleen I hope you had a successful recovery after the new radiation. Can you share the name/type of radiation. Thanks much. Joan

[ColleenS]

The radiation is called Stereotactic radiation - as Notaclone13 posted above it is a treatment that uses a very high dose when the patients hearing is already gone and when the tumor is aggressive. They considered mine aggressive since the regrowth was so quick and almost the same original size.

So now I am almost a month out and I am still tired but it is a bit better. My balance is off and that surprised me since my balance nerve was gone after the surgery? As the tumor begins it's swelling process I feel a tightness on the side of my head, some pain in my ear and cheek; very dry eye (again uggg) and nose (5th cranial nerve). So far, all things are tolerable.

I am scouring the threads to find others like me so I know what to expect as the months' march on. I know we are all different for sure and of course how the tumor lies matters as well.

Thanks for all the responses!

[JLR]

Hi So glad the radiation is over. Hopefully your side effects are not going to last too long.  I'm scheduled for my next follow up MRI on Monday. Hopefully all is status quo. Stay well.

[ColleenS]

JLR, Joan, how did your followup MRI look? I hope the tumor stayed status quo as your last one. I can understand your concern with additional trauma to your facial nerve since you already have some from your surgery. Do they think your facial weakness will improve over time?

[JLR]

Hi Colleen, Yes thank goodness the tumor remains unchanged and no additional growth.  I'm 2 years out and my facial paralysis is better but not gone.  My eye can close but still use drops.  I think at this point I don't expect it to return to normal. Although I get a small tinge of an ache near my AN side so I'm told that MIGHT be the nerves finally re-generating.  My eye is terribly drooped. My right side face is pretty puffy. I do massage those muscles.  Pretty much I'm ok. Balance is just ok.  All in all I was told prior to surgery that this might although unlikely happen to me.  It is what it is and I try to always move forward!  Happy healthy Thanksgiving to you and your family and to my post-op friends on our continued journey.  Regards, Joan

[Bomberman]

Hi JLR, how are you?

I think I have spoken to you before in these forums. I hope everything is well with you. My tumor is regrowing and I noticed that you decided to do radiation after your regrowth. May I ask which form of radiation you chose? Do you think the radiation caused your eye and face issues? When did you have the radiation done? How did the tumor look like before your radiation treatment? Was it spread across the facial nerve?

Is there any way I can reach you by phone if possible? Thank you.

[JLR]

Hi I had Cyberknife way before surgery. I did have some regrowth after surgery but its status quo so I haven't had any additional radiation. My facial paralysis and eye problems is a direct result of surgery. Since I had had radiation prior to surgery the surgeon told me that the tumor was misshaped and there was perhaps some difficulty getting it out. The surgeons removed 95% and left 5% on facial nerve. Leaving it alone so not to cause any problems which of course it did.  After 2 years I can close my eye easily but still use drops because of the dryness and have synkensis. I'm not anticipating any improvement on my facial paralysis either. Thank goodness we have this forum to vent. Best regards.