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Bone mineral density of the lumbosacral spine has decreased. Ditto hip. Ditto forearm. I am no longer under the direct care of my oncologist. I am in the survivor program. She is lovely. I am in the danger zone, without the expertise of the care of my oncologist to take a good look at blood work and test results. We had a very good conversation about tumor markers and whether I would like the tests done. I declined. I accept the evidence that the tests are not reliable indicators. It helped that my mom's markers are stable. They have been since her diagnosis in and they remain within the same range today, nearly one year after she was diagnosed with metastatic disease.
And now, I have some serious questions. After the scan, my oncologist's nurse really, it's like having two oncologists because yes, she is THAT good called to make sure I was taking my calcium supplements. I assured her I was and that I would continue to take them. About two months ago, I read some of the findings about calcium supplements and made a decision to stop taking them. I still take D3. Despite calcium supplements which were still in my daily pill box and weight bearing exercise. Now, I will say I am slightly irritated. I told the imagining facility I wanted a copy of the results. They mailed them to me. Like everything else, they were tossed in a pile of paperwork in what was my office and is now simply a disaster area which will required the assistance of a dear friend to organize.
After the information was presented in San Antonio about the reduction in metastasis and death in early stage patients who were treated with zoledronic acid, I wanted to know more. No observations on women who started the medication years upon completion was included. Additionally, and even if they were presented, as I stated in my earlier post, these findings have yet to be peer reviewed. Thus, in this setting as a risk reducing method, another tool for early stage patients, is NOT approved. However, it IS approved for use in patients who are diagnosed with osteopenia. In , in , in and in , every single report mentions that clinical intervention "may be considered if not already undertaken.
I'm slightly irritated. I feel a phone call should have been placed. I am scheduled to be on letrozole for another four years. That will not change but the havoc it is clearly creating in my bones is changing. I have half jokingly said that my mom's appointment tomorrow three month scans will be reviewed is going to be hijacked with this bone density thing and the "Is now the appropriate time for intervention? I won't do that. I will, however, make it clear that I expect a call from her and that I would prefer to be placed back under HIS care. Yes, I liked her. The NP, that is.
Shouldn't this have been given a bit more attention? My personal information coupled with findings that have been discussed for years before this was presented last week, in my opinion, was worthy of a follow up call from her office. Maybe I'm being harsh, but the bottom line, I understand the risks associated with bisphosphonate use. I also understand fully, the risks associated with the possibility of micro-metastasis waking up and colonizing a compromised bone. I know, too, that studies have been presented regarding stress triggering recurrence in those who've already had a cancer diagnosis emphasis, the study was NOT about stress triggering a first cancer.
The stress in my life has been off the charts. Things I've shared and things I've had to keep private. I'm employing every technique to reduce my stress but it's there. Taken as a whole, again I ask, wasn't this all worthy of a conversation? Wasn't this worthy of the shared decision making process that accompanies patient centered care? No hype. No spin. Just the facts via links from people who are far more qualified than I am to sort out the information from San Antonio. For starters, Dr. Robert Miller. Miller is a medical oncologist at Johns Hopkins and he was one of my trusted tweet sources. He shares his personal experience as an attendee on his own blog, Perspicacity.
Julie Gralow was my other trusted tweet source and she may be providing additional information for the BCSM site. As of now, it's not posted yet. I'll update as needed with appropriate links. And here is the update from the BCSM site , as promised. The audio tapes directly from the stage presentations can be found here. Without the slides, they can be a bit difficult to understand but if you want to hear the words as they were spoken, that's the link to click.
They can be found here , here and here. Those are easy to understand. From Dr. Jay Harness and Breast Cancer Answers, the mentor session that was live streamed is located here. If you go to the very end, you will hear Dr. Technically, he said, "Hello New York. The video links are in excess of three hours. The BreastCancer. Org videos are approximately 30 minutes each. The Hot Topic mentor session is about 90 minutes. Between the reading and the watching, you have plenty to come back for over the next couple of days. I will be out and about.
I have a bit of shopping to finish and this year, no worries about that tree. It's decorated. With ornaments. Last minute errands this year: finish my shopping and wrapping all of the gifts. At least I have the wrapping paper and the tape. Now to find the sharp scissors. I said "more tomorrow" and I'm delivering on my promise. There was so much swirling around on twitter on Thursday, I'm surprised I remember any of it.
Somehow, I managed to remember the important stuff and each of these stories are important. And on some level a disgrace, shameful. They are completely unrelated but they've both managed to make me sit up and pay attention. The pictures below were in conjunction with a news story. In the first sentence, it says "Despite It's short and it's sobering. A proposal was being unveiled in Congress. Mental health reform. This is what the room looked like when the Representatives took the stage. No surprise there, I suppose. In fact, I was beyond outraged at a blog written by a doctor suggesting that those complaining with depression and anxiety needed a little perspective.
Send them to a third world country to dig latrines. I kid you not. And this woman not only contributes to the very well respected Kevin MD medical blog , she has her own blog which appears to have a spiritual angle to it. Talk about disingenuous. After my experiences earlier this year with my friend and my chance meeting with the director of the National Institute of Mental Health at the Faster Cures meeting, I may turn some of my attention to the area of mental illness advocacy.
I'm not going anywhere, but I may be redividing my time to focus on something about which no one seems to care. Until tragedy strikes. I can't sit on the sidelines. I don't know how or what form this advocacy will take but I just know, this is a patient population that needs a voice. And I have a voice. And I'm not afraid to use it when necessary. That's a stay tuned situation, I'm still working it all out in my own chemo damaged brain. See, it all ties together. On another note, back to San Antonio and breast cancer. Yesterday, the cancer agency of the World Health Organization issued a report and the findings were abysmal. I saw this tweet from a doctor, yes a doctor, from the San Antonio Breast Cancer Symposium, where the crowd should be savvy and know the truth.
The San Antonio Breast Cancer Symposium continues through today and the official closing is tomorrow morning. I've been glued to a twitter feed for days. Aside from that, I'm walking around with a laptop in one hand as I prepare food or do anything else. Including when I jump in the shower. The laptop stays out, but it's there for me to read as I'm wrapped in a towel. Here's where a shout out to the young man in the Apple Store is in order. I just replaced my laptop and he convinced me to get a MacBook Air.
I can cradle it in my left arm as I'm doing other things. I think my phone may be heavier. Have I learned anything? Themes are emerging, headlines are being splashed, studies are being hyped and my head is spinning trying to decipher all of it in ways that I can understand. Over diagnosis and over treatment was big on Tuesday. This has been a topic of conversation for months. I found a good video which if I recall was a fair as in even-handed assessment taking all sides into consideration.
My take away. We can cease and desist in perfecting imaging techniques. When mammography works, it really works well and when it doesn't do such a great job, perfecting it further won't really help those whose cancers are hard to see on mammography. Enough with this need for earlier and earlier detection. We got the early detection part down, we need to get to the biology of the tumors, to find ways to interrupt metastasis, prevent metastasis, prevent the disease altogether. And that's where the splashy headlines began.
The doctors and researchers tweet using the chemical names. To you and me, that's arimidex. In English? Are you still with me on that? What does it really mean when you cut your risk in half? Line up ten women. Do nothing, four of them will get cancer. Do something and just two of them will get cancer. Not really a fan. Something was said about the dangers of the other already approved risk reducing drugs tamoxifen in comparison to arimidex.
There are dangers and risks associated with both drugs. The End. There are side effects and the joint pain is real. And the presenting doctor is on the speaker's bureau for Astra Zeneca who was one of the funding sources for the study. Bottom line? Until the presentation, all presentations, are peer-reviewed, they are merely presentations. The full research findings, not just the slides with the great looking graphs, must be reviewed. Then, a more accurate assessment will be shared.
And, if I have access to it, I'll likely find something that merits mentioning. Especially when the presentation was so dismissive of the side effects. The last presentation yesterday afternoon was one that was of great interest to me. The presentation was about the use of bisphosphonates for patients with early stage disease to prevent recurrence and death. Specifically, they looked at an oral medication that is not approved for use in the US but is used in Europe and zometa, which is an IV administered drug that is approved for use in metastatic patients.
The numbers were impressive. The benefit of adding this to was equal to that seen with chemotherapy. They looked at thousands of women in over 20 different studies and combined all of the information. To Suzy … with love forever. And to Mommy, Daddy, and Eric. Komen for the Cure come alive. And to Norman. This book captures the spirit of my experiences to the best of my recollection with the help of letters, journals, press clippings, photos, and interviews. To create a readable story of manageable length, it was necessary to condense and combine some events and characters. Other dialogue was re-created for dramatic effect, based on interviews, letters, press clippings, and my recollections.
Others may remember or interpret certain events and conversations differently. Nothing in this book constitutes or is intended as a substitute for medical or legal advice. The opinions expressed are my personal opinions and may not necessarily reflect the opinions of Susan G. Some things have to be omitted to protect the privacy of those involved. Eric Winer, and all the very special people who shared their stories. Thanks to my agent, Wendy Sherman; my project assistant, Jerusha Rodgers; Gary and Malachi Rodgers, who provided help and support; and Colleen Thompson, Barbara Sissel, and Fred Ramey, who offered insightful critique on early versions of the manuscript.
Thanks to the staff for their music and hospitality. M y waking memories of my sister have grown hazy over the years, but Suzy still passes through my dreams as animate and vivid as a migrating butterfly. Her face is fresh and full of energy, her hair windblown but still beautiful. In a freshly ironed skirt and patent leather ballerina flats, she defies gravity, scrambling over a pile of slick rocks, Roman ruins stacked like unclaimed luggage on a hilly roadside in southern Spain.
Oh, Nanny , she waves me off, mugging for the boy with the camera. Boys could never keep their eyes, or cameras, off her. He tells Suzy to smile. Say queso! In studio and fashion photos, she was always slightly Mona Lisa, never haute couture haughty. Even in the dream, I ache for the unfinished music of her life. Back home, Suzy would write something silly on the back of the photo of the Roman ruins— I swear, it was like this when we got here! I appreciate it as an art form, and I try not to be frustrated by it, but gifted with it? I am not. She had a shy side, but people loved her to her dying day because she was just so much fun to be around.
I have no talent for sitting still. My gifts were sturdy construction, a stalwart sense of justice, and the ability to whistle, ride horses bareback, and skip stones over water as well as any boy. I was a natural bridge builder. Even as a little girl, I was the ambassador between my high-spirited sister and our rightly starched father. She was three years older, but when Suzy was grounded, I was the hostage negotiator.