long term effects of radiation

palmyrafan

unknown said:

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Radiation Face Mask
I had my face mask made and it wasn't anything like the one I had made 15 years ago. The original was blue, hardshell and it wasn't malleable at all. The current one is white and comes in 4 pieces. I did tell them that I want the mouth and nostril area cut out (I am claustrophobic) and they said they would see to it.

Getting the mask made actually took longer than the actual sessions will and I figure I can tolerate 5-15 minutes in the mask for therapy sessions.

But it was rather creepy seeing all the face masks in the room made in the image of people's faces.

Thanks for the heads up about the salve. Never heard of it, but will certainly put it in my medicine cabinet if I need it.

palmyrafan

KMPonder said:

You and Rory will be
You and Rory will be interested to know what we were presented with as a possible option for my husband yesterday. Our Atlanta doctors are thinking gamma knife COULD be used to zap this GBM on the optic chiasm. Duke's radiation oncologist is suggesting no radiation. We are sooooo confused.

The doctors here feel if after this round of chemo (ends next Thursday) the next MRI still shows the tumor encapsulated in the optic area as it had shown in February, that they could safely do the gamma knife to give him more of a fighting chance. They do not feel his sight will return, and this is why they are even considering it for this area of the brain.

We know so very little about gamma knife, but the fact that two great teams are not on the same page is highly confusing as to what to do. I think we like the idea of being aggessive, if we can, because with a GBM what more do you have to lose?

Would love to know your thoughts. This would be a THIRD time of radiation. They assured us because of this area the rad onc could contain it in that optic area. Of course that means NO possibility of vision restoration. (I have a call into his Neuro-Ophtalmologist for her opinion.)

I never dreamed we'd ever have so many heavy, heavy decisions to make. It's such a rollercoaster.

Gamma Knife
Oh sweetheart, you are in my prayers.

Are the Atlanta doctors specialists in Optic Nerve and Optic Nerve Chiasm tumors? Do they have experience in Gamma Knife in this area?

That is why it is so important to get opinions from more than one doctor. There is one doctor at Wake Forest University Baptist Medical Center in Winston-Salem, NC who may or may not be of use to you. His name is Dr. Patrick R. Yeatts. His area of expertise is: Oculoplastic Surgery; Orbital Tumors/Cancer; Eyelid Tumors/Cancer, Orbital Diseases. He is the only one listed in the 9th Edition (2010) "America's Top Doctors" located in your area (listed in the book).

As far as your husband's vision is concerned, I don't mean to be insensitive or stupid, but is it due to loss of cornea vision (is that what he lost)? If so, there are specialists listed who may also be of help.

Also, as he does have a GBM, time may be of the essence. In this instance, if you have a little window of opportunity, try to find a 3rd opinion to help balance what you have learned. As you well know, we can never have enough information when it comes to deciding the best course of treatment.

We are struggling with the same issue. I've had no movement or growth around the optic nerve or optic chiasm in 2 years and yet I am having issues with photophobia and eye strain. Our options on the table are surgery, radiation, a combination of surgery and radiation or none of the above. Do we wait and see what happens and lose my vision, do I have surgery and possibly lose my vision, or do I have radiation to that area and stand a 60+ % chance of losing my vision? We are torn because what if some new therapy is just around the corner and in a year or 2 we could safely radiate or operate and spare my vision? We too are in a quandary and can only hope that we make the best decision possible based on the information we receive. We are balancing what we hear in Philadelphia with the original surgical/radiation team at the Cleveland Clinic. At least in our instance, the 2 teams of doctors are in agreement about our options. We just have to decide what we want to do.

This is a very personal issue, one that I understand all too well. For me, it is an issue of Quality of Time VS. Quantity of Time. I already know that at some point, the tumors will kill me; the doctors have all agreed on that. The ones around the carotid artery can't be safely operated on and can only be radiated so many times before it doesn't do any good. That's what makes the decision about the Optic Nerve and Optic Nerve Chiasm so difficult.

But what we all have is HOPE. No one can ever steal that away from us. HOPE is the one thing that makes our arms a little longer when we think that we can't reach any more. HOPE helps keep us sane and positive during the times when we think that there is nothing sane or positive to any of this. And HOPE is what we have for our future.

Don't let anyone ever take that away. Please keep us posted.

palmyrafan

KMPonder said:

You and Rory will be
You and Rory will be interested to know what we were presented with as a possible option for my husband yesterday. Our Atlanta doctors are thinking gamma knife COULD be used to zap this GBM on the optic chiasm. Duke's radiation oncologist is suggesting no radiation. We are sooooo confused.

The doctors here feel if after this round of chemo (ends next Thursday) the next MRI still shows the tumor encapsulated in the optic area as it had shown in February, that they could safely do the gamma knife to give him more of a fighting chance. They do not feel his sight will return, and this is why they are even considering it for this area of the brain.

We know so very little about gamma knife, but the fact that two great teams are not on the same page is highly confusing as to what to do. I think we like the idea of being aggessive, if we can, because with a GBM what more do you have to lose?

Would love to know your thoughts. This would be a THIRD time of radiation. They assured us because of this area the rad onc could contain it in that optic area. Of course that means NO possibility of vision restoration. (I have a call into his Neuro-Ophtalmologist for her opinion.)

I never dreamed we'd ever have so many heavy, heavy decisions to make. It's such a rollercoaster.

3rd Opinion
You may want to check out the Holden Comprehensive Cancer Center in Iowa. They have a website and the link to FAQ, which includes Optic Nerve Gliomas is:

http://webeye.ophth.uiowa.edu/toni/faq.htm#4 (at least that is the one on link)

Anyhoo, they are located at the University of Iowa and they specialize in Optic Nerve treatment. It would be worth a phone call or a look at the website to see if they can at least answer any questions you might have.

Hope this helps!