Help Me Help My Sister

plhamby

My 63 year old sister has anaplastic oligodendroglioma. She has been fighting this since 1998. She had chemo and radiation treatments in 2007. This stopped the tumor growth until March of this year. She had chemo and the tumor kept growing by leaps and bounds. She has now finished 5 weeks of radiation. She goes back to the Dr. next week to find out if it has stopped the tumor growth.
I have many concerns that I hope someone can help me with. I have been taking care of her for the last 4 years. I have hired several caregivers, but she runs them off.
I am terrified because I don’t know what to expect next. Her speech has gone from slurred to I can’t understand what she is saying and she has difficulty finding the words she is trying to say. She thinks speech therapy is going to cure her. In reality, they are trying to teach her to communicate is different ways. She can no longer read or write. I have to repeat myself several times to make her understand what I’m saying.
My next concern is that I don’t think she realizes how ill she is. She has never asked the Dr how much longer she has or what the chances of the treatments working are. He told me that she has a few months left. I can only assume that she doesn’t want to know. If you have any insight into what my sister and I are about to go through, I would love to hear from you

Paula

LilChemoSmoker

I wish I knew...
Paula,

I sure wish I knew what to tell you. I have no experience with your sister's condition. I would hope that someone here on the board will post soon that may have some information. Until then, please know that we are a very caring group here and welcome you and hope you are holding up alright. You don't know how strong you can be, until strong is all you have.

Hugs,
-Michelle

I_Promise

LilChemoSmoker said:

I wish I knew...
Paula,

I sure wish I knew what to tell you. I have no experience with your sister's condition. I would hope that someone here on the board will post soon that may have some information. Until then, please know that we are a very caring group here and welcome you and hope you are holding up alright. You don't know how strong you can be, until strong is all you have.

Hugs,
-Michelle

sisters
My beautiful young sister has anaplastic astrocytoma grade 3 just diagnosed this august 2011.

I understand the deep bond between sisters.

Yours you say has been diagnosed in 1998? and she just finished radiation? if this is the case, usually people get worse after radiation and then get better. If her speech is affected, then the tumor is in her dominant side. Is she on steroid?

It is hard to answer your question without more information. Neuro-oncologist always say people have a few months to live when you have brain cancer. Usually, we ignore the stats, and keep up the fight. But if she is really at the end, the tumor is growing, she is going to be hospice soon etc..

There are also a lot of clinical trail for recurrences. Is she eligible?

As far as if she knows how sick she is: my feeling is let her take the lead. Is she wants to talk about it, let her. But there are some things just unthinkable that need a brief thought before burying it deep down. How will her knowing how sick she is going to make her happier? Kill her hope? Maybe she needs to know to be able to say goodbye?

I know how much you love her.

J.

plhamby

I_Promise said:

sisters
My beautiful young sister has anaplastic astrocytoma grade 3 just diagnosed this august 2011.

I understand the deep bond between sisters.

Yours you say has been diagnosed in 1998? and she just finished radiation? if this is the case, usually people get worse after radiation and then get better. If her speech is affected, then the tumor is in her dominant side. Is she on steroid?

It is hard to answer your question without more information. Neuro-oncologist always say people have a few months to live when you have brain cancer. Usually, we ignore the stats, and keep up the fight. But if she is really at the end, the tumor is growing, she is going to be hospice soon etc..

There are also a lot of clinical trail for recurrences. Is she eligible?

As far as if she knows how sick she is: my feeling is let her take the lead. Is she wants to talk about it, let her. But there are some things just unthinkable that need a brief thought before burying it deep down. How will her knowing how sick she is going to make her happier? Kill her hope? Maybe she needs to know to be able to say goodbye?

I know how much you love her.

J.

Tumor Stable
My sister went back yesterday for her MRI. The Dr. said her tumor is stable for now. She goes back in 2 months. Her Dr. is over the clenical trials. He has mentioned it. He said that will be the next step. I think she will want treatment until the very end.
She lived in Ga. until I went and got her 4 years ago. They told her at Emory that they could not do anything else for her. I moved her to Tx to be with me and go to MD Anderson cancer treatment center. They are ranked number 1 in the U.S. Don't give up. She could have a lot of quality years left. My sister still has lunch every day with friends and today I noticed she was drawing again. My thoughts and prayers are with your sister and her family.
Paula

ddpekks

plhamby said:

Tumor Stable
My sister went back yesterday for her MRI. The Dr. said her tumor is stable for now. She goes back in 2 months. Her Dr. is over the clenical trials. He has mentioned it. He said that will be the next step. I think she will want treatment until the very end.
She lived in Ga. until I went and got her 4 years ago. They told her at Emory that they could not do anything else for her. I moved her to Tx to be with me and go to MD Anderson cancer treatment center. They are ranked number 1 in the U.S. Don't give up. She could have a lot of quality years left. My sister still has lunch every day with friends and today I noticed she was drawing again. My thoughts and prayers are with your sister and her family.
Paula

Welcome .........
Paula...Welcome to the board that no one wishes to be on, but is so very thankful it is here! Sorry that your sister is so ill, but you sound so strong and she is very lucky to have you. I know nothing about her disease except that it is cancer and cancer s.u.c.k.s! If you need to scream, vent, complain, or be happy, I'm here for you.

Hugs and prayers for you both.
Deb

plhamby

ddpekks said:

Welcome .........
Paula...Welcome to the board that no one wishes to be on, but is so very thankful it is here! Sorry that your sister is so ill, but you sound so strong and she is very lucky to have you. I know nothing about her disease except that it is cancer and cancer s.u.c.k.s! If you need to scream, vent, complain, or be happy, I'm here for you.

Hugs and prayers for you both.
Deb

Thank You
Thank you so much. I am not good at talking about my feelings, so this is helping me alot.

Paula