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:
  1. Removes useless waste 
  2. thickens or thins the fluid 
  3. 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?

Tuesday, February 3, 2009

LBBC Understanding Treatment Options

Living Beyond Breast Cancer Understanding Treatment Options brochure is really an excellent resource. Wish I had it in 2007. (I do wish they used more pictures of young people throughout the brochure.)

I should also mention that LBBC is having a free teleconference on 2/20/09 on Understanding Lymphedema. I am looking forward to hearing new news on lymphedema treatment. Every woman should dread this annoying (and I bet really preventable if we really tried!) side effect of breast cancer treatment.

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:
  1. 4 Adria then 4 tax on 3 week cycle each (sequential arm) -- lower risk of recurrence of all 
  2. 4 A + 4 T
  3. 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

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.