I went in today for a second opinion with a breast cancer specialist, who is also a leading MD in high dose chemo/stem cell transplants.
She was very straight forward with me. She said that she had reviewed my case, and indicated that she did not believe that a stem cell transplant was a good option for me. She indicated that she has done 200+ stem cell transplants on individuals with metastatic cancer over the last 9-10 years, and of those, 5 individuals were still living in 2004. She indicated that of those 5, all but one of them had had a recurrence during that time and required chemotherapy. She believes that the stem cell transplant did get them a longer period of time without any kind of treatment, but does not necessarily think that it was prolonging their life. She said that they likely could have all been placed on chemo again and been maintained on that type of treatment and had the same outcome. She said that since we can not expect a cure in my case, that to go through about 100 days of poor quality of life from the treatment would, in her opinion, not be a great option.
I asked her about whether or not she felt that a mastectomy was a good idea. She indicated that she did not necessary think that there was anything to gain from having the surgery, and also indicated that keeping the breast was going to help make recurrences more quickly identifiable, therefore allowing for treatment sooner.
I asked her about whether or not having my ovaries removed or radiated would be helpful, since my tumor is 26% Estrogen receptive. She said that I could do that, but felt that taking an oral agent to counter the hormones would be as effective. She said that she believes that the chemo will eventually put me into menopause anyway, so it will not really be an issue anyway.
I also asked her about experimental trials, and if I should look into them. She said that right now that would not be an option for me because I have no measurable disease, but that when I am in a recurrence I could look into that. She said that when the time comes, I should look at third stage trials because they were promising enough in the first two trials to actually make it to a third trial, and that is a good sign. She did not know of any exciting third stage trials going on at this time. She said that she would only look into the first and second stage trials if it comes to the point that I have exhausted all my other options.
She said that right now, Herceptin is very promising and that their are other drugs out there that I have not tried yet. She said that I still have good things available to me, and suggested that I continue down the path of treatment that I am already on. She said that if I feel like I have to have a stem cell transplant, that I could make another appointment to come in and talk to her about it, and she would consider doing it.
But for now, she feels like my doctor is doing very well by me, and that she respects him a lot, and that she would even go to him if she had cancer. She said that she knows that he is up on all the new drugs, testing and treatment options that are out there, but if at sometime I had a question(s) for her, I could call her and do a phone consult (to save on paying for a visit) or I could even have my doctor call her. She said that she would be happy to consult with us if we felt like we needed another opinion.
Well, there you have it. It was definite not fun to talk about the fact that my condition is not curable, and that I will have recurrences, and all of that, but I did get straight forward information and her honest and professional opinion (no matter how hard it was to hear) and that is what I was looking for.
What am I thankful for?!?! Herceptin.
9.08.2005
9.06.2005
I hope you get the chance...
This last week has been a very, very difficult one for my father's side of the family. My cousin was killed in an accident, and leaves behind a son, and ton of family, and friends, all of whom love him very much!
I have been having such a hard time with this, because I do love him. He was very inspirational to me, and I bragged about him every chance I got! He had recently e-mailed me the following: "If you ever feel down in the dumps, you can email or call me, cause I will tell you to drop the attitude and get up and fight (of course get the rest when you need it too)." He was tough, but loving all at the same time! I saved that e-mail, and will probably read it over and over again, and someday...just maybe, I will be able to read it without crying! Nah, probably not.
The good thing about my cousin, is that he seemed to be good at telling people that he cared about them, and he seemed to live his days to the fullest, without having to be prompted to do so. I for instance, lived 6 hours away, and did not get to actually see him in person much, but he kept in touch by phone and e-mail, and I would never question the fact that he loves me...and is probably looking down on me right now, wondering why I didn't run today...(and Jeff, if you must know, my gluts hurt from the workout I did this weekend in an attempt to get back into the swing of things so that I can run that half marathon that I told you I would get too. I did say HALF marathon didn't I? Because if I said full marathon, I am sure that was a mistake! And quit laughing, sore gluts is nothing to make light of, and I know that it is pathetic, but give me a break here, I am trying!)
I think I am learning to live my days to the fullest, as I know that I may not be here until I am 80+ years old, like most of us just assume we will, or at least I always did. I have learned through my illness and through the loss of my cousin that life is very fragile and that we need to appreciate every single day that we have with our friends and family and we need to tell the people that we love, that we love them. We just can't assume that they know!
I have found that since my diagnosis, many of my friends and family have made it a point to tell me that they love me, and some tell me every single day, in their e-mails, text messages, phone calls, voicemails, hugs, and smiles. Or, in their endless efforts to make me laugh when I am down in the dumps. I hope that I too have made it perfectly clear to my friends and family how much I love them!
To steal a line from a country song that is pretty important to me, I hope that everyone gets a chance to live like they were dying. -to love more and to hate less, to laugh more and to cry less, to play more and to fret less, to enjoy life and not feel put out by it, because life is fragile, and we just never know when it will be cut short for us or for someone that we love. Take the time now to tell people in your life that you care about them...do not wait!
What am I thankful for?!?! I am thankful for each day that I have with the people that I love, and whether I have 2 more days, 2 more years,or 10 more years, I am thankful to have the chance to tell you all that I care about you!
I have been having such a hard time with this, because I do love him. He was very inspirational to me, and I bragged about him every chance I got! He had recently e-mailed me the following: "If you ever feel down in the dumps, you can email or call me, cause I will tell you to drop the attitude and get up and fight (of course get the rest when you need it too)." He was tough, but loving all at the same time! I saved that e-mail, and will probably read it over and over again, and someday...just maybe, I will be able to read it without crying! Nah, probably not.
The good thing about my cousin, is that he seemed to be good at telling people that he cared about them, and he seemed to live his days to the fullest, without having to be prompted to do so. I for instance, lived 6 hours away, and did not get to actually see him in person much, but he kept in touch by phone and e-mail, and I would never question the fact that he loves me...and is probably looking down on me right now, wondering why I didn't run today...(and Jeff, if you must know, my gluts hurt from the workout I did this weekend in an attempt to get back into the swing of things so that I can run that half marathon that I told you I would get too. I did say HALF marathon didn't I? Because if I said full marathon, I am sure that was a mistake! And quit laughing, sore gluts is nothing to make light of, and I know that it is pathetic, but give me a break here, I am trying!)
I think I am learning to live my days to the fullest, as I know that I may not be here until I am 80+ years old, like most of us just assume we will, or at least I always did. I have learned through my illness and through the loss of my cousin that life is very fragile and that we need to appreciate every single day that we have with our friends and family and we need to tell the people that we love, that we love them. We just can't assume that they know!
I have found that since my diagnosis, many of my friends and family have made it a point to tell me that they love me, and some tell me every single day, in their e-mails, text messages, phone calls, voicemails, hugs, and smiles. Or, in their endless efforts to make me laugh when I am down in the dumps. I hope that I too have made it perfectly clear to my friends and family how much I love them!
To steal a line from a country song that is pretty important to me, I hope that everyone gets a chance to live like they were dying. -to love more and to hate less, to laugh more and to cry less, to play more and to fret less, to enjoy life and not feel put out by it, because life is fragile, and we just never know when it will be cut short for us or for someone that we love. Take the time now to tell people in your life that you care about them...do not wait!
What am I thankful for?!?! I am thankful for each day that I have with the people that I love, and whether I have 2 more days, 2 more years,or 10 more years, I am thankful to have the chance to tell you all that I care about you!
Subscribe to:
Posts (Atom)
