Posted on Apr 17, 2010 in categories
Selecting a treatment plan in 2003 for Ann’s first incidence of breast cancer was fairly easy. The characteristics of her cancer were fairly typical and there was substantial clinical evidence that showed the effectiveness of alternative treatments.
Unfortunately, this time around it is harder to find information that is relevant to the specifics of Ann’s case. There are two reasons for this. First, extensive, large-scale clinical trials don’t usually include women with recurrent breast cancer. Thus, it isn’t clear whether the results of mainstream research apply to Ann now. Secondly, Ann’s recurrence occurred while she was taking Femara (letrozole), a nonsteroidal aromatase inhibitor that was approved by the FDA in 2004. Since it’s widespread use is relatively recent it is hard to find information about recurrences while taking it.
Nello has approached several people in his network in order to find treatment options for her. In particular, we seek answers to these questions:
Just to be clear, we’re not looking for medical advice per se. We are simply trying to identify evidence-based alternatives that we can review with Ann’s physicians. References to other physicians or publications are ideal. Thus far, our own literature search has turned up nothing, probably because Femara is such a new drug. But, even if there are no publications, surely there are people tracking Femara outcomes in preparation for a publication. So, we’re hoping to find them or others with ideas and experience in these kinds of cases.
Do you know a medical oncologist who specializes in breast cancer recurrences? How about a librarian at a major cancer treatment or research center? Another professional who might deal with these kinds of issues? If so, we would like to talk to you.
Thank you for reading.
Nello & Ann
Posted by Nello at April 17, 2010 4:10 PM
Hi Nello and Ann,
I know Nello from New Trier.
I am so sorry to hear that your cancer has re-occured. I was also in the TAC study around the same time you were, post mastectomy, with follow-up of 2 years of Tamoxifin and 3 years or Arimidex. So far so good.
There is a national registry of clinical trials, www.clinicaltrials.gov. If you type in breast cancer and Illinois, you will get a list of all the current clinical trials that are actively recruiting. Click on the links and you will get more details regarding site location and what some of the inclusion criteria are. If something interests you, there is contact information.
If I can be of any help, please contact me via my gmail address janet.sameh@gmail.com. And if you want to be a red head for a few months, I have a great wig.
Good luck and God Bless,
Janet
Ann and Nello, I am so sorry that you have to go through this again. I am in a support group at Cancer Wellness Center, and the doctor's name that comes up all the time for breast cancer is Dr. Dragon at Kellogg Center in Highland Park. I also have a friend/neighbor who has been battling breast cancer with recurrences for 15 years. I don't know what trials or medications she has been involved with, but would be glad to speak with her, and with your permission and hers put the two of you in touch. I certainly appreciated Ann referring me to Peggy Baswari when I was diagnosed with rectal cancer.
My love to you and your dear Alison,
Dorothy
Dear Ann and Nello!
I´m really sorry to hear that you have had to go through a new surgery, with the following chemo-therapy ahead. I think you are both fantastic to share this with your friends. I cannot contribute with any medical advice , but will support you with my warm thoughts and hopes for a positive time of complete healing.
Love, Annette