Just received this news about great opportunities for more advocate work. It would be an honor to attend either of these events. Plus, I've never been to Hawaii!
===
Genetic Alliance invites you and your colleagues to apply for one or both of the upcoming Advocates Partnership Program opportunities at:
American Society of Human Genetics Annual Meeting
October 20-24, Honolulu, Hawaii
National Society of Genetic Counselors Annual Education Conference
November 13-15, Atlanta, Georgia
The Advocates Partnership Program provides you with:
* participation in every aspect of the conference
* amazing access to the genetics community
* exclusive daily briefings with professionals
* waived, full registration to the meetings
* up to $250 reimbursement for transportation, hotel room, or airfare
Where do you and your interests fit in the overarching field of human genetics?
ASHG is the premier conference to meet people who work in all areas of human genetics, including research, industry and policy. Come and participate in educational, scientific, and social discussions about the entire translational research pipeline.
Have you ever wondered what genetic counselors do, besides interpret genetic information?
NSGC is the place to learn more about the issues affecting genetic counseling and how strengthening the relationship between genetic counselors and advocacy groups is a win-win for everyone.
To apply, please fill out the application and return it to tmurza@geneticalliance.org no later than Friday, August 28, 2009 for ASHG and Friday, September 11, 2009 for NSGC.
For more information and program requirements please visit:
http://www.geneticalliance.org/advocates.opportunities
If you have any questions, please contact Tetyana Murza at tmurza@geneticalliance.org or (202) 966-5557 ext. 205.
Showing posts with label research. Show all posts
Showing posts with label research. Show all posts
Monday, August 17, 2009
Good News About Wine!
An article in Business Week (August 14, 2009) suggests "Wine May Shield Breast Cancer Patients from Radiation Side Effects", http://www.businessweek.com/lifestyle/content/healthday/630061.html
This is an Italian study, so surely no biases exist, right? Anyway, I am content to see a pro-wine study. heh heh I'll have to check the actual study data to find out if it matters if it is red or white wine.
This is an Italian study, so surely no biases exist, right? Anyway, I am content to see a pro-wine study. heh heh I'll have to check the actual study data to find out if it matters if it is red or white wine.
Thursday, June 11, 2009
LBBC Teleconference Call: Breaking News from 2009 ASCO Meeting
Living Beyond Breast Cancer Teleconference, June 11
Speaker:
Virginia Kaklamani, MD, DSc, of Northwestern University, provided an overview of the latest medical research and quality-of-life news reported at the 2009 meeting of the American Society of Clinical Oncology.
Dr. Kaklamani is an assistant professor of hematology/oncology at Northwestern University. She completed her fellowship in hematology/oncology in 2003 and received a Master of Science in clinical investigation from Northwestern University. Dr. Kaklamani has a certification from the American Board of Medical Oncology and her interests include breast cancer, cancer genetics, studying high risk families and the role of exercise and diet in breast cancer.
Lymph nodes
whether to do therapy directly on the lymph nodes or not
benefit to adding radiation to lymph node region if 1-3 positive nodes?
if larger tumor (2+ cm) and positive nodes, then some benefit to add radiation to axillary, if smaller tumor, not so beneficial.
Tamoxifen
metabolism of tamoxifen. It is the metabolized form that is the active drug. If can metabolize tamoxifen well, then it is very effective.
anti-depressants (Lexepro, Zoloft and commonly used antidepressants) may affect tamoxifen (endoxifene levels). For example, taking Zoloft reduces effectiveness. Lexepro does not interfere, so is fine to use.
Chemotherapy trials
Avastin
inhibits the blood vessels from forming. Avastin is an antibody that goes to the tumors and keeps them from growing. Allowed to use it with Taxol in breast cancer. The Ribbon 1 trial is looking at taxane and zolota to see how effective it is in combo with these. It showed that it is effective, no matter what the treatment using in combo.
Aromatese inhibitors
how they affect brain function - short term memory issues
large adjuvant trial looked at cognitive function between tamoxifen and letrozol. Letrozol did a little bit better than Tam. Study found that all participants had lower cognitive function than women of the same age
Diet, Exercise
Exercise
not a lot of data, not a lot of randomized trials -- but women who exercise do better. IT is a predictor of how women will do.
Diet
There doesn't seem to be a specific diet related to decreased breast cancer recurrence. Weight loss or at least weigh maintenance do better than women who either gain or lose weight. Weight more important than diet.
Supplements
no supplement has been foind to be helpful in protecting against or helping women with breast cancer
Vitamin D -- no difference found -- but when start measuring Vit D levels only 25% of patients are Vit D sufficient. 75% of us are Vit D deficient, therefore, we should encourage women to take supplement to maintain a healthy level of Vit D.
Ask doctor to measure Vit D level!
PARP Inhibitors
Help repair DNA -- if inhibit, it keeps DNA from being repaired -- in cancer cells this is good. For Triple Negative, there already is an issue with the repair mechanism of the cell, so if add a PARP inhibitor, the cell won't be able to survive and will die. Use PARP in Triple Negative and BRCA1/2+ carriers.
-Alaporit (oral PARP Inhibitor) -- gave only PARP Inhibitor (had had chemo before and didn't respond) 41% had response to PARP Inh. -- not much toxicity (fatigue, nausea only), so can be used effectively by itself.
-BSI201 (intravenous) -- looked at chemo with gemcitobine and carboplatin with and without PARP. By adding the PARP Inh. to the chem, respond rate increased hugely. 16% to 48%! Progression free survival increased, and significant improvement in overall survival. It is showing effectiveness in population that hasn't had many alternatives when standard treatment not working.
Speaker:
Virginia Kaklamani, MD, DSc, of Northwestern University, provided an overview of the latest medical research and quality-of-life news reported at the 2009 meeting of the American Society of Clinical Oncology.
Dr. Kaklamani is an assistant professor of hematology/oncology at Northwestern University. She completed her fellowship in hematology/oncology in 2003 and received a Master of Science in clinical investigation from Northwestern University. Dr. Kaklamani has a certification from the American Board of Medical Oncology and her interests include breast cancer, cancer genetics, studying high risk families and the role of exercise and diet in breast cancer.
Lymph nodes
whether to do therapy directly on the lymph nodes or not
benefit to adding radiation to lymph node region if 1-3 positive nodes?
if larger tumor (2+ cm) and positive nodes, then some benefit to add radiation to axillary, if smaller tumor, not so beneficial.
Tamoxifen
metabolism of tamoxifen. It is the metabolized form that is the active drug. If can metabolize tamoxifen well, then it is very effective.
anti-depressants (Lexepro, Zoloft and commonly used antidepressants) may affect tamoxifen (endoxifene levels). For example, taking Zoloft reduces effectiveness. Lexepro does not interfere, so is fine to use.
Chemotherapy trials
Avastin
inhibits the blood vessels from forming. Avastin is an antibody that goes to the tumors and keeps them from growing. Allowed to use it with Taxol in breast cancer. The Ribbon 1 trial is looking at taxane and zolota to see how effective it is in combo with these. It showed that it is effective, no matter what the treatment using in combo.
Aromatese inhibitors
how they affect brain function - short term memory issues
large adjuvant trial looked at cognitive function between tamoxifen and letrozol. Letrozol did a little bit better than Tam. Study found that all participants had lower cognitive function than women of the same age
Diet, Exercise
Exercise
not a lot of data, not a lot of randomized trials -- but women who exercise do better. IT is a predictor of how women will do.
Diet
There doesn't seem to be a specific diet related to decreased breast cancer recurrence. Weight loss or at least weigh maintenance do better than women who either gain or lose weight. Weight more important than diet.
Supplements
no supplement has been foind to be helpful in protecting against or helping women with breast cancer
Vitamin D -- no difference found -- but when start measuring Vit D levels only 25% of patients are Vit D sufficient. 75% of us are Vit D deficient, therefore, we should encourage women to take supplement to maintain a healthy level of Vit D.
Ask doctor to measure Vit D level!
PARP Inhibitors
Help repair DNA -- if inhibit, it keeps DNA from being repaired -- in cancer cells this is good. For Triple Negative, there already is an issue with the repair mechanism of the cell, so if add a PARP inhibitor, the cell won't be able to survive and will die. Use PARP in Triple Negative and BRCA1/2+ carriers.
-Alaporit (oral PARP Inhibitor) -- gave only PARP Inhibitor (had had chemo before and didn't respond) 41% had response to PARP Inh. -- not much toxicity (fatigue, nausea only), so can be used effectively by itself.
-BSI201 (intravenous) -- looked at chemo with gemcitobine and carboplatin with and without PARP. By adding the PARP Inh. to the chem, respond rate increased hugely. 16% to 48%! Progression free survival increased, and significant improvement in overall survival. It is showing effectiveness in population that hasn't had many alternatives when standard treatment not working.
Tuesday, March 24, 2009
Advocate Mentor Program
I am thrilled to be accepted to attend an Advocate Mentor Program at Indiana University April 21-23, 2009. This program is bringing advocates from Atlanta, Houston, Denver and Indianapolis to participate in education and experiential learning opportunities in genomics, proteomics and pharmacogenetics. I get to go because they accept advocates from other areas based on space available. :-) The Research Advocacy Network and Young Survival Coalition support the program.
This program works with advocates to provide an understanding of the new science in genomics, proteomics and pharmacogenetics. Participating advocates will meet and work with researchers in these areas. The program I am going to is not offered in Illinois right now, but is being offered in Indianapolis. The best part is that I received a scholarship to attend and all travel and expenses are paid for!
A few details about the program. It is a project of the Advocate Core of the Indiana University Department of Defense Center of Excellence Research Grant (https://cdmrpcures.org/ocs/index.php/eoh/eoh2008/paper/view/1343). The program includes educational webinars before the face-to-face sessions, and the on-site sessions include experiential learning opportunities like being in the lab and spinning down samples and following tissue samples. I can't tell you how much I am looking forward to that experience. My inner scientist is jumping for joy!
I hope that when I am back from the Advocate Mentor Program I can have a chance to share my experience with other Patient Advocates. Even further, I hope to find out how we could get this program to happen in Illinois, involving the NCCTG and local researchers. It would be great to build local research/advocate relationships so that we can serve on study sections, concept and protocol review committees and ad hoc committees needing advocate input.
Wednesday, January 28, 2009
Identifying Ovarian Cancer with Proteomics
After getting a pelvic ultrasound this morning and the subsequent paranoia that I have, I did some surfing to read more about ovaries and ovary size, etc. I ran across a website, OvaryResearch.com and found this very promising information that is new to me. It is especially promising because pelvic ultrasounds are not very good screening tools anyway.
A study in 2002 found that the use of proteomic patterns in serum (identifying a pattern of proteins) may help identify ovarian cancer. I wonder why this is the first time I am reading about it and think I will need to do more research to find why this hasn't become a standard screening methodology. The results of the 20o2 study were able to screen 100% of ovarian cancer carriers and correctly screened 95% of non-ovarian cancer carriers. So what happened to this promising method for screening??
Monday, January 26, 2009
Notes from LBBC Teleconference "Breaking News from 31st Annual San Antonio Breast Cancer Symposium"
Speaker: Dr. Kathy Miller
Adjuvant Hormone Therapy
-Increased use of Aromatase Inhibitors -- better survival than Tamoxifen
-Also discussed: OncoDX Score, Big 198 Study
Studies now looking at how women metabolize Tamox and Aromatase inhibitors and seeing if it is possible to choose the therapy based on the enzymes inherited (how well a person metabolizes these). Can hormone therapy be individualized to people?
-Bone health -- aromatase has increased bone loss risk, studies show bisphosphanates are important to administer immediately with aromatase therapy
Adjuvant Chemotherapy (CURE article here)
FinnXx Study -- incorporating Xeloda (capecitabine) -- HER2-, lymph node involvement
NSABP30 Trial & BCROG(?) Trial (gave 6 cycles instead of 4). These trials looked at the TAC (Taxotere, Adriamycin, Cytoxin) regimen and compared dosage, sequence.
Three arms of the trials:
- 4 Adria then 4 tax on 3 week cycle each (sequential arm) -- lower risk of recurrence of all
- 4 A + 4 T
- 4TAC
Summary:
The second trial adminstered 6 doses versus 4. There was no significant difference found between fewer doses, but the sequential arm had the lowest recurrence of all and fewer side effects (probably due to lower dosages of the high toxicity drugs). Conclusion is that the TAC schedule does not offer improved outcome and TAC should be "retired". Recommendations coming out are to make treatment interval every 2 weeks or taxanes weekly and get rid of the TAC regimen.
HER2+ news
Lapatnib -- benefit for metastatic HER2+
TDM1 (Trastuzumab)
Triple Negative Breast Cancer and Chemotherapy
approval of drug ixabepilone shows benefit for Triple Negative (in combination with Xeloda)
Again, no studies being reported at San Antonio broke out pre- vs post-menopausal women! Argh!
Prescription: 3 Cups of Tea Daily
This article gave me pause today. I joined a Tea-Of-The-Month Club at work last year and haven't been drinking the wonderful tea samples I get every month. Since this article in the 1/23/2009 Telegraph is extolling the evidence that 3 cups of tea a day can reduce breast cancer risk in women under 50, I might just have to force my tea habit!
Ooooh, but I like this article (in the July 7 2008 Telegraph) better. The chemical resveratrol, found in blueberries, cranberries and peanuts that has a tumor suppression property, is also found in the skin of grapes that make red wine! Red wine fights cancer! I'll just drink tea and red wine all day.
Another Punch to the Ovaries
Alright, already, I didn't realize there was so much literature out there about the benefits of oophorectomy for BRCA1/2 carriers. Am I running across this more and more as a sign that I need to hurry up and get this one over with??? The latest article has an innocuous-enough sounding headline, "Surgery can lower cancer risk in high-risk brca1/2 carriers". I should have guessed it would be advocating for ovary-removal. Sigh.
Wednesday, January 21, 2009
Sunday, January 11, 2009
Non-invasive Targeted Radiofrequency Cancer Treatment
This is pretty exciting: an article and video that describes a radio frequency treatment of cancer cells developed by John Kanzius. This treatment destroys cancer without toxic chemicals or horrible side effects. It's an amazing story and a promising development.
As I was watching the video and reading about the treatment, I couldn't help wondering whether this would be a better way to manage lymph nodes. Instead of blindly removing lymph nodes, the nanoparticles would cling to any infected nodes and the radio frequency would destroy only the cancer cells, leaving the healthy lymph nodes to continue functioning. I wish I could have had the opportunity to have that method used on me, rather than having the invasive removal of lymph nodes that resulted in lymphedema issues that I have to deal with for the next 50 years.
As I was watching the video and reading about the treatment, I couldn't help wondering whether this would be a better way to manage lymph nodes. Instead of blindly removing lymph nodes, the nanoparticles would cling to any infected nodes and the radio frequency would destroy only the cancer cells, leaving the healthy lymph nodes to continue functioning. I wish I could have had the opportunity to have that method used on me, rather than having the invasive removal of lymph nodes that resulted in lymphedema issues that I have to deal with for the next 50 years.
Saturday, January 10, 2009
Breastcancertrials.org
Another resource I discovered today, breastcancertrials.org. And, wow, what a great site.
For example (unfortunately, this one is in Stanford, CA and not accessible to me):
For example (unfortunately, this one is in Stanford, CA and not accessible to me):
Lymphedema Prevention and Detection
To Prospectively Evaluate the Potential for Simple, Effective Lymphedema Prophylaxis in Breast Cancer Survivors Who Show Early Evidence of High-Risk Status
Purpose
The purpose of this research study is to detect patients who might be at increased risk for the development of arm lymphedema based upon repeated non-invasive examination of the arms. When preventive interventions are appropriate, this study will compare the effectiveness of the usual treatments of massage and elastic sleeves with a new device, Flexitouch, which electronically simulates the effect of massage upon lymph flow.
Study groups
All participants will be monitored for evidence of early impairment in lymphatic function. Prior to surgery and once every 3 months after surgery, arm volume measurements and bioelectric impedance analysis (BIA) will be performed.
If a significant increase in BIA occurs, participants will be randomly assigned to 1 of 3 preventive treatment groups:
- Standard Care: Self-administered lymphatic massage in addition to a standard compression sleeve
- Flexitouch: Use the Flexitouch device to stimulate the lymphatics in addition to a standard compression sleeve
- Continued Follow-Up: Continued monitoring of both arms
Additional procedures
If signs of lymphedema develop, a small punch biopsy of the skin will be taken. Blood samples for study purposes. Optional donation of breast tissue and skin from surgery.
Trial length
24 months
Post-trial follow-up
Regulary, up to 5 years
Sponsor
Other
More information on this clinical trial
Cancer.gov (PDQ®) [Oct 23, 2008] , Google Scholar, PubMed, BreastCancer.org/Lymphedema, Dr. Susan Love/LymphedemaArmy of Women
Just discovered this resource today, Army of Women. It's a partnership between the Dr. Susan Love Research Foundation and the Avon Foundation, and a partnership between scientists and women. Partnerships that promise to accelerate research that is necessary to end breast cancer.
Saturday, December 13, 2008
Message Sent To The Lymphatic Research Foundation
I would like to know how I could become more involved in advocating for lymphatic research, particularly as it relates to lymphedema induced by breast cancer treatment. I am in Champaign, Illinois, the home of the University of Illinois and Mills Breast Cancer Institute. I am a patient advocate with the North Central Cancer Treatment Group. Apart from donating, what can an individual like me do to advocate for research and improved treatment?
Thank you,
xxxxx
Thank you,
xxxxx
Ovarian Cancer Clinical Trial
To bring up with my oncologist in January, but there is at least one criteria that I may not meet:
Phase II Randomized Study of Levonorgestrel in Patients at High Risk for Ovarian Cancer (Levonorgestrel in Preventing Ovarian Cancer in Patients at High Risk for Ovarian Cancer)
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=532268&version=HealthProfessional&protocolsearchid=4876012
Another to bring up:
National Ovarian Cancer Early Detection Program Blood and Genetics (NCT00531778)
http://www.clinicaltrials.gov/ct2/show/NCT00531778?term=NCT00531778&rank=1
Phase II Randomized Study of Levonorgestrel in Patients at High Risk for Ovarian Cancer (Levonorgestrel in Preventing Ovarian Cancer in Patients at High Risk for Ovarian Cancer)
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=532268&version=HealthProfessional&protocolsearchid=4876012
Another to bring up:
National Ovarian Cancer Early Detection Program Blood and Genetics (NCT00531778)
http://www.clinicaltrials.gov/ct2/show/NCT00531778?term=NCT00531778&rank=1
Patient Advocacy
Last month I started my journey along Patient Advocacy. I joined the Patient Advocate program through Carle Clinic and Mills Breast Cancer Institute. The program is part of the North Central Cancer Treatment Program (NCCTG), associated with Mayo. Patient Advocates play an active role in cancer research by bringing the patient perspective to the investigative and clinical environment. As a patient advocate, I get the opportunity to attend scientific meetings, review trial protocols, and make presentations to interested groups of scientists and clinicians. I joined the Patient Advocacy group specifically to bring the Young Adult issues to the forefront of research.
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