up date on hubby

go for it
Nancy, I think we have to go for it. They said my husband has lets see 6 months, 11 months one year without treatment 2 maybe with treatment. I think they do not know so they play a guessing game. My husband did not have any surgeries or any tubes, he had radation and Chemo that was 2009 he finished treatment May 1 2009. He is still doing everything he always done. He eats he is amazing to me. We go tomorrow to see if this treatment is working.

Some thoughts . . .
So far, ours is a good story! We go again for a CT scan on Friday, and are hopeful that the results will be positive. Had we accepted the suggestion regarding palliative care, who knows where or what condition we would be in today. My husband is still working full-time and will continue to fight this disease as long as he can. We were told that EC is, most certainly, a life-threatening disease, but that we need to remain optimistic about the future, especially since treating EC today is quite different from treating it ten years ago. New drugs are being used in treatment that did not even exist seven years ago. So, even though EC, when it recurs, is regarded as a “terminal” condition, we were encouraged to look upon it as a “chronic” condition that would always require treatment when recurrences surfaced. And, we were told to expect recurrences. Some EC cells, in our doctor’s opinion, are inherently resistant to certain chemo agents, so we will have to keep fighting to combat this disease.

My husband is just starting to exercise again. He is not as strong nor as energetic as he used to be, but he is encouraged that he can get out, when the weather is nice, for long walks and medium length bike rides. Right now, he is fighting an annoying rash that we think is a by-product of the experimental chemo agent. He also is experiencing, for the first time, some neuropathy. We will know more on Friday, and I will update you!

I would recommend that you search, on your own, the NIH website for trials that might be applicable to your situation. We felt that our original oncologist was quite unaware of the possibilities for treating EC. We did our own research and found several trials that were open. We set an appointment with the trial that was closest to where we live. The oncologist associated with the trial provided us with a wealth of information about the trial he was involved in. He also fielded many questions about EC as well as other trials throughout the country. In the end, we felt that the trial we entered would be a good one and staying close to home was a major advantage.

I wish you the best in your quest to get a good direction for treatment. I no longer get concerned about how medical personnel view my comments, questions (probably sometimes uniformed questions), etc. At the end of the day, we are the ones fighting, in the most personal way, this awful cancer. If we fail in our diligence to get answers and appropriate guidance, we fail not only ourselves, but other patients who are diagnosed later as well as the medical community. It is only through us that they will learn and, hopefully, be able, in the future, to have many more treatment successes. And, the best result would be to have all of us included as a treatment success!!

Good luck and best wishes always,

Trisha

P. S. Sorry for the long-winded reply. Couldn’t sleep, so thought I would write!