My Mother has AN...Update

[Mary]

Dear Friends,
First, I want to thank all of you for all the information you give.   It has helped me and everyone here a great deal.

My 81 year old mother had another MRI this past week.   Her AN grew .5cm on 9 months.   it now is 3.5 x 3.8 x 4 cm.   Yes the tumor is suppose to grow 2 mm a year on average.   As you can see that's not always true.   The MRI was hard on her.   Not the actual test but a few hours after she had trouble.   I have no idea why.   It's very hard on me to put her thru all of the tests.   Surgery is no longer an option because of her age.   GK is not an option because it will make the tumor swell before it starts to shrink.   There is a new procedure called LINAC.   Not all GK centers offer it.

I thank God I am able to take care of my mother and keep her out of a nursing home.   I realize that some day she will have to go.   Her quality of life is the most important thing to me.   Right now her quality of life is with me and it's the best I can offer.

To all with AN.... In my opinion please don't wait and watch.   RESEARCH !!!!   The tumor will grow.   The more it grows the more problems you will have.   The tumor doesn't always grow the same way.   With my mother, it grew onto the base of the brain stem and up into the brain.   Growing up into the brain has not been the problem.   As we grow older our brain shrinks leaving space between the skull and the brain.   As something is pushed into the brain, the brain adjusts.   With something growing on the nerves, they can not adjust.   This tumor is affecting nerves 5 thru 9 in my mothers brain.   There are only 12 nerves coming off the brain stem to the brain.   All of these nerves take care of all your body functions.   So please don't wait.

With my mother being 81yrs., she has lived a happy and fullfilled life.   She does not want to do any more tests or surgeries.   That's her wishes and I will honor them.

Mary

[Mary]

Change in plans.   Thanks to Kate I found a Doctor in NYC who does LINAC.   We may look into this a lot more before we give up.   

Wish me luck     
Mary

[russ]

Hi
  Isn't irradiation, irradiation, whether the gamma rays are produced by a cobalt source in GK or a Linear accelerator? The tumor will swell some with both.
  Possibly the 3-D image shape sizing utilized by LINAC will give an edge? I don't know.
  Growth of that magnitude at that age is quite unusual. One doesn't want to risk conversion to malignancy at that age either. The risk 'may' be higher than the general population.
  I'm sorry, Mary; This seems a tough situation.
  My parent, and I would choose GK and expect a shunt placement. The initial 'higher hit' and protocol 'may' have an advantage in disrupting the DNAs ability to replicate schwann cells of the AN.
  Best wishes in your Mom's situation, Mary!
  Russ

[Mary]

Russ,   

My Mother already has a shunt in her brain.   The tumor is right at the brain stem and already blocking the fluid drainage.   With LINAC they use the smallest dose of radiation.   It is done by hand not a scheduled dose of radiation.   When the arm of the LINAC stops the radiation stops.   There is only a 2% chance of swelling and because the dose is so small it can get the tumor off the nerves without damaging them.   Nerves in our body is one of the things that can repair itself.   

I'm not looking to get anything back for my mother.   At 81 yrs old she still has a good 10 years to go.   With the tumor growing .5 cm in 9 months.....that's not good.

Russ, check out the website and tell me what you think, please.   www.rsny.org

Thanks
Mary

[Mary]

I'm sorry I was wrong.   I just got the MRI's from the hospital to send to the CK center in KS.   I read the report.   The tumor was 3 x 3.3 x 3.5 cm in December of '04.   It is now  4 x 3.8 x 4 cm.   I hope this CK center will accept my mother for treatment.