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VaMoonRise · 07-29-2007, 04:26 PM

Dear Odette,

Thank you so much for responding to my post. I can't even begin to tell you how much it means to me to just to be able to talk to someone about it that isn't an immediate family member or intimate friend. Talking to them helps but I always feel like I have to hold back some and be a bit stronger and optimistic for them than I actually am because it is so hard on them to deal with too. Don't get me wrong, I have the most wonderful family who spoils me rotten and are so supportive, understanding, comforting and there for me in every way but some things that I would like to voice to them are just too difficult because they don't like to let their minds go there. I hate how much this effects the people that I love, that is the worst part of this entire disease. It rips my heart out seeing what it does to them.

The only family I have is my amazing husband, my sister who is four years older than I that lives in GA and a step sister of the same age that lives in NC. It's truly difficult being so far away from them. We talk everyday though by phone or via computer which helps, and we get together as often as possible. My sister and I are the only members of our immediate family still alive. We lost our older brother back in 1986 to a drowning accident, our Mother to breast cancer in 1995 and our Father in 2001 to lung cancer. So it terrifies me what it will do to my sister to be the only living family member left out of all of us. We are best friends and so involved in every way in each others lives that I can't bear the thought of her being left alone. I take comfort in that she is married and has three sons but it is not the same thing as your immediate family where your roots lay. I worry about my husband in the same way, as he too only has his two grown sons that live far away and his Father who lives in AZ and a disabled sister who lives near by us. In my heart I know that they will be okay but the pain that they will suffer is so unbearable for me to fathom. Like all of us I just keep praying and holding onto the faith that I will be here for many, many more years to come. That new treatments and advancements will make cancer a livable and manageable disease much like diabetes until they find the cure.

I am so glad that your friends brain mets were successfully treated and that he is back to being basically NED. It is stories of success like this that give us such inspiration and hope.

I would like to be back on Tykerb but because I progressed while on it I am not sure how willingly my Onc will be about trying it again. Perhaps she will be willing to try it with a different combination of drugs now that I have brain mets along with liver mets. I will be sure to discuss that with her tomorrow when we go in to get the results of my CT. I have also heard about a drug called Temador that has been used on brain tumors with some good results. It will be interesting to discuss the options of treatments now that my situation has changed, I just hope it hasn't changed too much from what I know now at this moment, tomorrow will tell.

Thanks again so much for responding and for your kind words and encouragement. And I apologize for dumping so much personal stuff into a post, it just feels so good to dump it somewhere, like a purging of emotions.

Love & Hugs,
Nicola

07-29-2007, 04:26 PM	#3
VaMoonRise Deceased Join Date: Mar 2006 Location: Virginia Posts: 113	Thank You So Much Odette Dear Odette, Thank you so much for responding to my post. I can't even begin to tell you how much it means to me to just to be able to talk to someone about it that isn't an immediate family member or intimate friend. Talking to them helps but I always feel like I have to hold back some and be a bit stronger and optimistic for them than I actually am because it is so hard on them to deal with too. Don't get me wrong, I have the most wonderful family who spoils me rotten and are so supportive, understanding, comforting and there for me in every way but some things that I would like to voice to them are just too difficult because they don't like to let their minds go there. I hate how much this effects the people that I love, that is the worst part of this entire disease. It rips my heart out seeing what it does to them. The only family I have is my amazing husband, my sister who is four years older than I that lives in GA and a step sister of the same age that lives in NC. It's truly difficult being so far away from them. We talk everyday though by phone or via computer which helps, and we get together as often as possible. My sister and I are the only members of our immediate family still alive. We lost our older brother back in 1986 to a drowning accident, our Mother to breast cancer in 1995 and our Father in 2001 to lung cancer. So it terrifies me what it will do to my sister to be the only living family member left out of all of us. We are best friends and so involved in every way in each others lives that I can't bear the thought of her being left alone. I take comfort in that she is married and has three sons but it is not the same thing as your immediate family where your roots lay. I worry about my husband in the same way, as he too only has his two grown sons that live far away and his Father who lives in AZ and a disabled sister who lives near by us. In my heart I know that they will be okay but the pain that they will suffer is so unbearable for me to fathom. Like all of us I just keep praying and holding onto the faith that I will be here for many, many more years to come. That new treatments and advancements will make cancer a livable and manageable disease much like diabetes until they find the cure. I am so glad that your friends brain mets were successfully treated and that he is back to being basically NED. It is stories of success like this that give us such inspiration and hope. I would like to be back on Tykerb but because I progressed while on it I am not sure how willingly my Onc will be about trying it again. Perhaps she will be willing to try it with a different combination of drugs now that I have brain mets along with liver mets. I will be sure to discuss that with her tomorrow when we go in to get the results of my CT. I have also heard about a drug called Temador that has been used on brain tumors with some good results. It will be interesting to discuss the options of treatments now that my situation has changed, I just hope it hasn't changed too much from what I know now at this moment, tomorrow will tell. Thanks again so much for responding and for your kind words and encouragement. And I apologize for dumping so much personal stuff into a post, it just feels so good to dump it somewhere, like a purging of emotions. Love & Hugs, Nicola