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.
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.
Friday, June 5, 2009
Tuesday, April 14, 2009
Excellent News about Triple Negative Breast Cancer
"Unprecendented Partnership between the Triple Negative Breast Cancer Foundation and Susan G. Komen for the Cure will Fund Collaborative Team at University of Alabama at Birmingham"
Yep, that's a $6.4 Million research project being funded! The project will be looking at an antibody that the researchers developed to target triple negative breast cancer tumors. A targeted therapy for Triple Negative.....that is awesome news and way overdue.
Another news story I saw today, unfortunately brings up controversy concerning legislation introduced a few weeks ago. Arguments are being made that the legislation gives false hope to young women and is unnecessary. I personally think it is wonderful to mention women under 40 in legislation and to bring awareness to the unique needs of young adults. So phooey on the politicians who think this is unnecessary and that breast cancer in women under 40 is so "rare".
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.
Friday, February 20, 2009
LBBC Teleconference: Understanding Lymphedema
Speaker: Andrea Cheville, MD, MSCE, Associate Professor of Physical Medicine and Rehabilitation, Mayo Clinic
Quality of life is reduced with lymphedema because it is a lifelong problem and requires constant care.
Lymphatic system are capillaries and converge in larger and larger vessels and terminate in lymph nodes in axilla. Its function is to cleanses the cell tissues. Between 5-10% of cell fluid leaks out and remains in the system. The lymphatic system cleans this 5-10% of waste up. Lymphatic system removes the large molecules of waste.
Removing the lymph nodes in order to stage the cancer and to exert local control of the cancer (remove it).
Three main functions of the lymph nodes:
- Removes useless waste
- thickens or thins the fluid
- detects the presence of any harmful microbes (bacteria)
When removed (and/or irradiated), increases risk of cellulitis and infection since body is less able to detect bacterial overgrowth at the early stages.
Accumulation of proteins can cause pain, achiness, heaviness, swelling. Lymphedema doesn't cause focal, localized pain. Localized pain should not be ignored, but worked up separately. For example, wrist pain. An inflamed tendon can place the woman at risk for lymphedema! (FYI, I had localized pain at my wrist, and sure enough, lymphedema came next. Diagnosis came that I have thickening of the nerve in my wrist, thereby constricting the ability of the fluid (that now has larger debris in it) to drain from my hand properly.)
Most likely shows up after a period of overuse -- on a hot day, more blood flowing, and overuse. Once that period is over, the lymphatic system can get control over it and the swelling goes down, but the swelling is going to be a lifelong condition and does require well-trained, experienced help to manage.
Risk Avoidance
Don't have great research on risk avoidance. The usual advice applies, but all of that is based on theory. No one has done rigorous clinical research to determine the best practices for preventing lymphedema.
Breaking Skin
Avoid giving bacteria access to the protein-rich tissue. Dry skin can develop microfissures that let bacteria in, so not only risk from scratches, etc. Keep skin moisturized, Dove soap is a good choice, low Ph lotion is a theoretical recommendation (such as Eucerin). Not necessary to avoid manicures, but should avoid cutting back the cuticles. Keep the cuticles well moisturized with lotion, oil, etc.
Exercise Conflict
On one level, exercise increases lymphatic fluid --
On another, the lymphatic system performs the best when exercising, which is believed to improve lymph removal. Increased absorption and transport.
(FYI, exercise has shown improvement for me, however, during exercise, there tends to be some increased swelling, but then it functions better for the hours and for days after.)
Increased Inflammation
Sunburn is bad because it increases blood flow to the area and increases fluid leakage.
Immersing self in hot tub causes dilation of blood vessels and increases fluid leakage. You can submerge everything else except the arm at risk in the hot tub.
Tendonitis/chronic inflammation causes more blood flow and increases fluid leakage. (FYI -- my lymphedema treatment CAUSED increased inflammation in my wrist, which led to problems with lymphedema in my hand. Argh!) Lymphedema specialists must become more aware of localized pain symptoms and treat those before treating for lymphedema.
Airplane Travel
the lower pressure in the airplane is increasing the lymphatic load -- reduced pressure, less of a barrier, less impedence to the fluid leaking out of the cell tissue. Also being sedentary causes lymph nodes to become sluggish, so if wear sleeve on plane, make sure to move arm, squeeze and release...
Increased salt -- leads to water retention and increased fluid.
carrying heavy bags that cut off collateral circulation.
TREATMENT
Complete/Complex decongestive therapy is the primary system of care -- manual lymphatic drainage (takes years for therapists to master. Seek out practitioners who are skilled in MLD!)
Compressive Bandaging in multilayers.
Therapy includes extending the wrist and bending, punching motion to straighten and bend the elbow to get the muscle to expand and contract.
Very tedious as a lifelong activity, especially if wrapping with bandages yourself. Use a compression device as needed, such as a compression sleeve at nighttime, for example.
Low Level Light Therapy
Administering infrared light to the armpit, theoretically simulated the nodes and improving blood flow to the area. Becoming increasingly available. It is not harmful, but data not currently sufficient for recommending this as standard of care, but won't cause harm.
No medications recommended because it did not offer patients any benefit and 6-7% developed liver toxicity.
Alternative Therapies
Extract of horsechesnut -- not rigorously studied, but not harmful, not sure if better topical of ingested
Butcher's Broom -- data a bit promising, but not rigorously studied
Acupuncture -- not found to be beneficial by her (she is a certified acupuncturist), but maybe treating opposite arm, feet could be beneficial
Lymph node transplant -- Promising, on the horizon
introducing lymph nodes from another part of the body and transplanting them into armpit -- seems promising, but no trials, and no long-term results yet.
Liposuction as treatment for established lymphedema. Effective for reasons we do not understand. Body tends to deposit fat in areas affected by lymphedema for unknown reasons. If the multimodal therapy does not help, then liposuction does help. But in order to sustain it, you must use compression therapy 24 hours.
My questions (didn't get to ask them of the speaker):
- Could post-surgery MLD help the lymphatic system to recover from the shock of the procedure? Should MLD be required follow-up/treatment for the patient?
- Where can one find Low Level Laser Therapy practitioners, or to purchase a system for self-use?
- Is it really not recommended to have any massage therapy done? (Separate from MLD)
- Myofacial release -- could it be considered an alternative therapy since it helps to work the muscle and release shortening of muscle?
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