Hello, everyone. A quick update:
Since the stem cell transplant yielded only 'mixed' results (perhaps a bit better than the outright flunking described in my last post), we are in the midst of planning next steps. Back to Houston for a one-day flying trip yesterday, and a pow-wow with my Austin doctor this morning. The rollercoaster ride continues. Trite, but true.
I may be staying with hormone therapy, which might still offer some benefit. Maybe, maybe could do this with a targeted therapy drug now in trial for use with breast cancer.
(Am I a wo-man or a mouse? That is the question.)
And then there's chemo....and then there's the need for a better summer with the kids this year vs. last year's, shall we say, medically focused time.
XO
Sally
Friday, May 22, 2009
Sunday, May 17, 2009
Cancer Thumbs Its Nose at Me
It has not been a good week. In fact, it's been one of the worst--certainly an un-celebration of my first diagnos-aversary. The samarium trial is considered a flop; I have new lesions in the bones of my back and legs.
Perhaps I was being Ms. Smarty Pants in thinking that the trial would work well for me because the samarium transplant had helped my friend Marcia for a year, and she had lots more bone involvement going into it. I thought--and probably Dr. Ueno thought--my disease would be stable for some length of time. Talk about the proverbial rug.
A warning angel plopped down beside me
I'd had a bit of a premonition that all was not rosy, thanks to a major coincidence (God-incidence, no doubt). On Monday while I was waiting for a scan, a friendly woman sat down to me. She'd seen that I was walking stiffly and asked me if I had cancer in my bones. Lo and behold if she wasn't #2 in the trial! Now WHAT, I ask you, are the odds of accidentally meeting one of the other seven? Her disease (also more advanced than mine) was stable for just seven months before progression to her abdomen.
Silver linings: (1) The disease is confined to my bones. (2) I've been watched closely. (3) I feel good. (4) I have hair.
What next?
Dr. Ueno has told me of a new targeted therapy--a nonchemo, and therefore 'gentler' drug--that has been successful in some other cancers and is now being tested on breast cancer patients. Because I want to avoid chemo for as long as possible, I am considering it. We are seeing an expert on this drug at MD Anderson on May 21. It's a Phase I trial. I am in no mood to offer myself up as a lab rat again, but I do want to know more.
The story gets better. I have a new doctor here in Austin. Dr. Kampe is a former researcher and devoted to the latest and greatest for breast cancer. His blue eyes light up when he talks about drugs coming down the line that could at some point turn this into a chronic disease. You've got to love that attitude. He did his UCLA fellowship with the man who discovered the wonder drug Herceptin (not applicable to me), so he's not just making this up.
It turns out that there is another trial of the drug mentioned above, in conjunction with hormone therapy. There are still some hormone therapies I haven't tried yet that could control the disease. Might be good if it all works out. We will talk about all the options in more detail when we see him next on May 22.
Best part of our visit: As Dr. Kampe was about to leave the exam room, he turned back and said, "There are still plenty of reasons to hope." I will catch that ball and run with it.
Bright sides of the Houston visit
Marcia, Hank's and my new soul sister (#4 in the trial), was ever so gracious to host us at her new apartment that she'd barely moved into herself. Gabfests, wine, cool apartment...what's not to like? Marcia is doing quite well on a new drug, and is in 'seize the day' mode with an upcoming month in Europe, a cruise, and more.
A thing of beauty is a joy forever
Collapsible crown of a 1st-century nomadic princess.
If there is a word beyond exquisite, I do not know it. In Houston I was lucky to see an art exhibit of once-lost treasures from Afghanistan. At great personal risk during the 1970s civil war, Afghani curators hid away hundreds of intricate solid gold and inlaid ornaments made by nomads of the 1st century. These traders on the Silk Road were influenced by cultures from Egypt to China: Imagine golden Aphrodite figures in Indian dress...Roman coins...nomadic figures riding Chinese dragons...all clearly crafted by passionate craftsmen.
At one point I was so mesmerized that a guard had to pull me away from a display case. I think I was about to fall in! There were also artifacts from a city from the reign of Alexander the Great. Much of what was left behind was destroyed during the civil war with the Russians and then by the Taliban. The exhibit travels next to New York.
http://www.nationalgeographic.com/mission/afghanistan-treasures/index.html
I will always be grateful for that joyful day before I found out The News. Love and beauty transcend the ages. And life, all in all, is a good thing.
Hugs to all for following my story,
Sally
Perhaps I was being Ms. Smarty Pants in thinking that the trial would work well for me because the samarium transplant had helped my friend Marcia for a year, and she had lots more bone involvement going into it. I thought--and probably Dr. Ueno thought--my disease would be stable for some length of time. Talk about the proverbial rug.
A warning angel plopped down beside me
I'd had a bit of a premonition that all was not rosy, thanks to a major coincidence (God-incidence, no doubt). On Monday while I was waiting for a scan, a friendly woman sat down to me. She'd seen that I was walking stiffly and asked me if I had cancer in my bones. Lo and behold if she wasn't #2 in the trial! Now WHAT, I ask you, are the odds of accidentally meeting one of the other seven? Her disease (also more advanced than mine) was stable for just seven months before progression to her abdomen.
Silver linings: (1) The disease is confined to my bones. (2) I've been watched closely. (3) I feel good. (4) I have hair.
What next?
Dr. Ueno has told me of a new targeted therapy--a nonchemo, and therefore 'gentler' drug--that has been successful in some other cancers and is now being tested on breast cancer patients. Because I want to avoid chemo for as long as possible, I am considering it. We are seeing an expert on this drug at MD Anderson on May 21. It's a Phase I trial. I am in no mood to offer myself up as a lab rat again, but I do want to know more.
The story gets better. I have a new doctor here in Austin. Dr. Kampe is a former researcher and devoted to the latest and greatest for breast cancer. His blue eyes light up when he talks about drugs coming down the line that could at some point turn this into a chronic disease. You've got to love that attitude. He did his UCLA fellowship with the man who discovered the wonder drug Herceptin (not applicable to me), so he's not just making this up.
It turns out that there is another trial of the drug mentioned above, in conjunction with hormone therapy. There are still some hormone therapies I haven't tried yet that could control the disease. Might be good if it all works out. We will talk about all the options in more detail when we see him next on May 22.
Best part of our visit: As Dr. Kampe was about to leave the exam room, he turned back and said, "There are still plenty of reasons to hope." I will catch that ball and run with it.
Bright sides of the Houston visit
Marcia, Hank's and my new soul sister (#4 in the trial), was ever so gracious to host us at her new apartment that she'd barely moved into herself. Gabfests, wine, cool apartment...what's not to like? Marcia is doing quite well on a new drug, and is in 'seize the day' mode with an upcoming month in Europe, a cruise, and more.
Living it up with sake and sushi in Houston.
A thing of beauty is a joy forever
Collapsible crown of a 1st-century nomadic princess.If there is a word beyond exquisite, I do not know it. In Houston I was lucky to see an art exhibit of once-lost treasures from Afghanistan. At great personal risk during the 1970s civil war, Afghani curators hid away hundreds of intricate solid gold and inlaid ornaments made by nomads of the 1st century. These traders on the Silk Road were influenced by cultures from Egypt to China: Imagine golden Aphrodite figures in Indian dress...Roman coins...nomadic figures riding Chinese dragons...all clearly crafted by passionate craftsmen.
At one point I was so mesmerized that a guard had to pull me away from a display case. I think I was about to fall in! There were also artifacts from a city from the reign of Alexander the Great. Much of what was left behind was destroyed during the civil war with the Russians and then by the Taliban. The exhibit travels next to New York.
http://www.nationalgeographic.com/mission/afghanistan-treasures/index.html
I will always be grateful for that joyful day before I found out The News. Love and beauty transcend the ages. And life, all in all, is a good thing.
Hugs to all for following my story,
Sally
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