Recent Meetings
CanSurvive Meeting, Feb. 19, 2010
We had a big fine-looking group for our last meeting. Our wonderful belated Valentine's lunch was catered by the Char House (http://charhousefoods.com). We all got some beads that had been caught at Mardi Gras in New Orleans.
Connie graciously led our meeting this month. We got updates on several members.
We were reminded that Ovarian Cycle is Sunday, Feb. 28 at the Jewish Community Center on Montclair Rd. from 10 a.m. - 4 p.m. We have several people cycling and they would love for you to drop by and cheer them on. We'll have an awareness table set up, so you can also help with that. For more info, see http://www.ovariancycle.org and click on Birmingham in the right sidebar. (Birmingham has raised over $48,000 already! This money goes directly to ovarian cancer research.)
Dr. Elizabeth Kvale and her assistant Eric Walker joined us for our meeting. They are from the Supportive Care arm of Palliative Care. Palliative care is the medical specialty focused on relief of the pain, stress and other debilitating symptoms of serious illness. It is not the same as hospice. There is a great explanation of this on their website which is http://medicine.uab.edu/PalliativeCare The Supportive Care team is interdisciplinary and their services are billed to insurance under one umbrella. The more we heard from Dr. Kvale, the more we felt like their services were some that many of us could benefit from.
The title of Dr. Kvale's presentation was "Managing Depression: a survival guide for cancer patients and survivors". A summary of her talk is below and attached is her PowerPoint presentation. If you cannot open that, I've also attached a .pdf version. They can be found below:
Powerpoint: Click here
PDF: Click here
Detailed Speaker Notes from 2-19-10 Meeting
Managing Depression: a survival guide for cancer patients and survivors
Speaker: Dr. Elizabeth Kvale from UAB Supportive Care
While 7% of the general population has depression, 17- 40% on cancer patients have depression! There is a reason for that. Cancer is a perfect storm of causes coming together: stress, chemo drugs and hormones can cause depression. Even tumor cells release chemicals (cytokines) that can cause depression.
Dr. Kvale gave us a list of signs of depression. Two of the most common symptoms are feeling sad all the time and irregular sleep (sleeping too much or not being able to sleep). Fatigue and isolating oneself from others are also signs. Even though all of us normally have mood swings, depression is usually persists longer than 2 weeks.
Should depression be treated? Most definitely it should because depression causes the immune system not to work as well. Treatment can be with medication and/or talk therapy.
One thing we found particularly interesting was an explanation of the warnings about suicidal tendencies with antidepressants. We see that on commercials. Dr. Kvale explained that is problem if someone has contemplated suicide before antidepressants have been started; antidepressants themselves do not cause suicidal thoughts to crop up.
Dr. Kvale said there are also strategies for coping with depression. Exercise is key as is eating the right foods. Stress reduction activities (meditation, massage, knitting if you already knit), keeping regular hours, and making connections with friends are all helpful.
Another coping strategy is setting a small attainable goal each day, such as taking a walk, making a doctor's appointment, saying a prayer, or speaking to 1 person in the grocery store.
Who can help with depression? Your primary care doctor, oncologist, and/or the UAB Supportive Care team at
205-975-8190.
CanSurvive Meeting Minutes
October 16, 2009
We filled up the board room at UAB Highlands today for great food from Golden Rule and for our speakers, Dr. Ronnie Alvarez and Dr. Chip Landen.
Dr. Alvarez was an invited speaker at the Mayo Clinic last week. He was honored to speak and glad to report that UAB holds its own with the other big names in cancer treatment.
Dr. Alvarez filled us in on what is happening in the GYN Oncology department. He also introduced Dr. Charles (Chip) Landen who will primarily do basic research on therapy-resistant ovarian cancer cells that are probably responsible for recurrences. We appreciated their being with us today.
Our thanks to Jennifer Smiley who picked up the food for us, to Kristen Craig who provided our lovely flower door prize, and to Sonya Wells, whose daughter gave us some lovely teal bracelets with the teal ribbon on them.People news: Jan Conway attended for the first time; Jan is a survivor and also a friend of Connie's. Asiah Watkins also joined us; she is an oncology specialist for Ortho and worked with us at the Southern Women's Show. It was great to have Jo Ann Baker and Pat Wilens with us, especially given that it was treatment week for them. Sarah Moseley joined us; she's had a recurrence and asks for your prayers for her surgery next week. Please remember Marion Hopper and her family in your prayers.
Next meeting: Our November 20th meeting will be back at the American Cancer Society. We'll stuff holiday bags for our sisters getting chemo. If you weren't able to attend today's meeting and would like to write 10 personal notes for the bags, let me know and I'll send you some blank notecards.
Holiday party: Friday, Dec. 4, 1 -- 4 p.m. This year our party will be at the Shades Mountain Student Building behind Shades Mountain Baptist Church at 2017 Columbiana Road, Bham 35216
Detailed Speaker Notes
CanSurvive Meeting
October 16, 2009
Dr. Alvarez was an invited speaker at the Mayo Clinic last week. He was honored to speak and glad to report that UAB holds its own with the other big names in cancer treatment.
Dr. Alvarez filled us in on what is happening in the GYN Oncology department. He spoke highly of Dr. Kilgore, who recently left the department, and said they are interviewing potential clinicians to join the staff. He also introduced Dr. Charles (Chip) Landen who will primarily do research. You can read more about Dr. Landen later on in these notes.
GYN Oncology will be moving to the new Women's and Infant's Center on 6th Avenue South on March 1. The new building is across from Spain Rehab (where Arby's used to be). This facility will also house the OB department and adjoin the new Children's Hospital. It will be a crosswalk away from University Hospital. This move will allow the level of service we've come to expect at Highlands, including in-house chemo, and allow the doctors to provide more efficient care. Our gyn oncologists will continue to provide services at Brookwood and St. Vincent's, also.
On the clinical trial front, the GOG phase 3 clinical trial testing Avastin (an anti-angiogeneis drug) given in conjunction with taxol/taxotere and carboplatin has just been completed. UAB participated in this trial. Results should be announced next year.
Some trials have shown that weekly treatment of Taxol rather than every 3rd week may be more effective and less toxic.
Intaperitoneal (IP) treatment continues to be promising.
On the national front, PARP trials have started. The PARP drugs seem to be particularly effective in patients with BRCA mutations and some evidence is emerging that they may also be effective in cases of sporadic ovarian cancer.
As for a simple screening test for ovarian cancer, we still aren't there yet, although work is still being done to find one. CA125 is not a good screen in the general population. So, Dr. Alvarez encouraged us to keep up our awareness work.
Here at UAB, the first trial using gene therapy has ended and a second one is underway. FDA has just approved the 3rd trial.
A monoclonal antibody trial has started, also. A death receptor antibody targets and binds to the death receptor of ovarian cancer cells.
On the endometrial cancer front, our surgeons now use robotic (DaVinci) surgery on 80% of their patients with endometrial cancer. It gets excellent results and patients have quicker recovery times. There seems to be 2 types of endometrial cancers; the more aggressive type is usually treated with chemo, also.
Robotic surgery is being used more frequently for cervical cancer. There is a newer drug in the chemo arsenal now.
UAB and Johns Hopkins was recently awarded a SPORE grant to test 4-5 vaccines for cervical cancer. Two of the vaccines are for prevention. (For more information, see http://main.uab.edu/Sites/MediaRelations/articles/69729/ .)
Dr. Landen, a native of NC, was highly recruited by UAB from M.D. Anderson. He has clinical experience with ovarian cancer patients; this gives him an edge about what type of research might be most beneficial. He told us there is a move to reduce the amount of time it takes for basic research to be translated to clinical application.
Just yesterday, Dr. Landen found out he is one of only 5 researchers to be awarded grants as a member of the Ovarian Cancer Academy, which is sponsored by the U.S. Dept. of Defense. (Cancer funding comes out of that department, surprisingly enough.) In his award letter, he was told that his mentor - Dr. Alvarez- was one of the reasons he received the award.
Finding and studying the population of chemo resistant cells that are the probably cause of recurrences will be the focus of Dr. Landen's basic science research. It is known that cancer cells communicate with healthy cells and this is necessary for cancer growth. One of the things he will have to detect is whether human ovarian cancer cells will communicate with mouse cells and provide a good model for studying the metabolic pathway for how these cells grow. If the pathways can be found, then drugs can be developed to disrupt the pathway and prevent cancer growth.
Needless to say, we were very excited over his research choice.
Many of you have heard of the Human Genome Project that has mapped DNA. Dr. Landen told us that brain cancer and ovarian cancer will be mapped for the Cancer Genome Atlas. This may also provide some clues for other research and treatments.
Dr. Alvarez and Dr. Landen also answered our questions.
How can patients find clinical trials appropriate for them if one is not available at UAB?
Dr. Alvarez: There is a website - www.clinicaltrials.gov - that helps match patients with appropriate clinical trials. Our oncologists often make calls to colleagues who are involved in those trials for their patients.
There has been some discussion in the news about when to treat recurrence. Some evidence suggests that treating a rising CA125 without signs of clinical disease does not improve survival. What is your opinion on that?
Dr. Alvarez: I think we have to consider each individual and decide when to treat. A mother of 3 young children may want to be treated with only a rising CA125. An 80 year old woman who feels good might want to have treatment when she has clinical signs or symptoms of the disease.
With the current state of the economy, more people are losing their jobs and health insurance. Can patients receive treatment if they are without insurance?
Dr. Alvarez: It has always been UAB's philosophy that they are the providers of healthcare for the citizens of Alabama. We have an excellent social worker - Michael Kay Schepps - who helps us with that.
Will ovarian cancer survivors still talk with medical students since their curriculum has changed? We didn't do it this spring.
Dr. Alvarez: I will have to check into that. Dr. Kilgore had been coordinating that with his lecture the past couple years. Incidentally, my son is in his first year of medical school.
Dr. Landen, will you be studying rare forms of ovarian cancer or the "garden variety"?
Dr. Landen: I'll be researching the most common type because it has the possibility of benefiting more people. Studying one type streamlines the research, introducing less variables.
What will parking be like at the new facility on 6th Avenue?
Dr. Alvarez: On cold and rainy days, I think you'll like the parking deck better than having to walk across the street like you do here. There will be valet parking. We also have a group working on parking plans. Eventually, there may be a paved lot, but it is not in the immediate plans.
Will Dr. Landen see patients in the clinic?
Dr. Alvarez: He will be in the clinic a half day each week.
Beth interjected a comment here that we might not be aware of it, but our oncologists discuss the current day's and tomorrow's patients every day at 5 p.m., no matter where each doctor might be. Dr. Alvarez smiled and said, yes, that is when our "family" gets together.
Clinical Dietician
Clinical dietician Sarah Webb had some great information for us at our meeting on Friday. She addressed many of the problems we experience during treatment.
She sent us her information to share and it is in PowerPoint (see below).
The banana flakes that Sarah passed around are called Kanana Banana flakes; they help with diarrhea. She also had Juven, which helps with wound healing. Rite Aid and Amazon.com carry it. It tastes like Tang.
Sarah does do consulting for individuals.
Download powerpoint presentation here.
CanSurvive Meeting Notes -- June 19, 2009
We had a big crowd on June 19th; I counted 34 people in attendance. Many of us brought a friend or family member. Sonja and Maila were there for the first time and several of our nurses came, also. We had another great meal from the Char House. Dr. Mack Barnes graciously gave his time to speak with us today. If you weren't able to attend, a summary of his talk is listed at the end of this e-mail.
At a recent meeting we agreed to do an 18 month calendar that would feature photos that make us happy. So, find your favorites and send them to Brenda Lamb at brenlamb@bellsouth.net or send her a CD with them to 2136 Rockland Drive, Birmingham, AL 35226. We'll get a group together to choose from the photos for the calendar. We might sell the calendars, so make sure you are OK with sharing the pictures.
On July 30th, there will be a fun event to raise money for Norma Livingston Ovarian Cancer Foundation (for ovarian cancer research.) I'll send more info in a separate e-mail.
Also, mark your calendars for the Southern Women's Show at the BJCC on Thursday, Sept. 24 - Sunday, Sept. 27. We'll have an awareness booth there. We're trying to do this every other year since we can reach many women.
-- Cheryl
Dr. Mack Barnes graciously gave his time to speak with us today.
When he came to UAB, Dr. Austin told him he should do research on chickens! Turns out, chickens are the only other animal we know of that gets ovarian cancer.
He told us the PLCO study has been publishing some of their results. (The PLCO is a large-scale clinical research study begun in 1993 to determine if certain cancer screening tests would reduce the number of deaths in the United States from prostate, lung, colorectal, and ovarian cancers. Transvaginal ultrasound & CA125 were used to screen for ovarian cancer.) Unfortunately, these screening tests did not make detect ovarian cancers any earlier and actually caused some unnecessary surgeries due to false positives. Dr. Partridge, gyn-oncologist and now head of UAB's Comprehensive Cancer Center, was a lead author.
The ovarian cancer tests that you may have read about (OvaSure & OvaTest, I think they were called) have not been as reliable as hoped. Proteonomics (protein studies) may be the key in finding new markers for a reliable test.
Current research is pointing to fallopian tubes as the origin of ovarian cancers.
Dr. Barnes spoke about breast and ovarian cancers caused by a mutation in the BRCA1 and BRCA2 genes. It is estimated that 10-15% of folks with these cancers may have a mutation in one of those genes. A family history of breast &/or ovarian cancer (especially breast cancer before the age of 40) is suggestive of this.
If someone has an abnormal BRCA1 or BRCA2 gene, the chances of getting breast or ovarian cancer is greatly higher than in the general population. For instance, with an abnormal BRCA1 gene, chances of having ovarian cancer by the age of 70 is about 44% and breast cancer is 40%- 80%. The ovarian cancer chance is about 10% before age 40, but greatly increases after age 40.
The good news is that PARP-inhibitors in clinical trials seem to be effective against cancers that are caused by these abnormal genes.
In genetic counseling, there is a rubric (aka, flow chart) that is followed to see if someone should receive counseling and testing. Dr. Barnes says it is interesting because the women usually show up with an extensive family history in hand...and the men show up with almost nothing of family history.
Notes from our May 15 meeting
It was great to get together last Friday for our CanSurvive meeting and see some folks who haven't been able to come in awhile. If you weren't able to come, know that you were missed and we hope we'll see you soon.
Brenda has already secured a place for our next Christmas party on Fri., Dec. 4. We also talked about submitting photos of things that make us smile for an 18 month calendar. Be thinking about what you'd submit. We'll get a committee to select which ones to use.
After a good meal we got from the Char House, we shared things that make us smile. Among those things were --
Brenda: A grandson and a friend (and they were both there in person!)
Cynthia: Pictures of her toddler grandson at the beach pleading his case by crying & looking right, then left, then forward; picture of a pet dog who rests his hindquarters only on a couch; picture of pet cats
Mary Anne & Cheryl: Funny greeting cards
Diane: "Dammit Doll" to take out frustrations on
Jennifer: Music
Betty: Money (as she jokingly reminded us to remember her birthday this month)
Linda: A picture of her son being kissed on each check by his children
Margaret: Our group
Connie: A picture of herself at age 10 dancing joyfully with 2 sisters, to remind herself she still has that joyful person inside her
Cheryl: Pictures taken of nature in spring and fall
To top this off, we did something that made us all smile: Took off our shoes and dance on & popped large bubble wrap! What fun! Looking around the room, you'd have thought we were all kids again. Thanks, Beth, for that. (By the way, try it! You'll like it!)
Mary Anne won the lovely flowers that Kristen brought and Linda won a teal necklace. Connie told us that the Dollar Tree has some really cute hats for summer.
Here's hoping you find some joy in each and every day...
CanSurvive Minutes: 1-16-09
After introductions, we heard news of Cheryl Bourn. Although she is sore, her spirits are good and she is able to walk up the stairs to their apartment in New Orleans, something she was concerned about. Her husband, Mark, has been cooking while Cheryl continues to recover from a mastectomy and hernia repair surgery. Each day brings progress – less pain, drains removed, better sleeping. We send her prayers and wishes for continued healing.
Today is Mary Anne King’s birthday! We sang to her and shared cake at the end of the meeting.
We welcomed Lillian Dulaney and her son, Rolf. Lillian is an active supporter of CanSurvive but has not been able to attend meetings until now.
Announcements:
CanSurvive Luncheon, Silent Auction and Fashion Show: This is on Wednesday, March 11th ; the silent auction begins at 10:30am and the lunch is at 11:30. It was a fantastic event last year. Please help make this year’s event a successful one! Tickets are $40 each which is tax deductible. All proceeds benefit our CanSurvive group. You can get tickets from Deidra Macon in the OBGYN office: 930-8660 or ddmacon@uab.edu.
Ovarian Cycle Ride to Change the Future: Dianne Baer and others will be participating in this fundraising event which benefits ovarian cancer research. The training at the Jewish Community Center starts on February 2; the Ride to Change the Future is on Sunday, March 8th. Riders can develop their own websites and will be asking for contributions. For more information, look at www.OvarianCycle.org or contact Dianne Baer at dtbaer@gmail.com or 915-3916. Please support the riders and this important event!
Banana cream pies and angels: Rashel Ross, a young single mother, breast cancer survivor, and founder of the Rashel Foundation gave us an inspiring and energetic talk about her experiences with breast cancer and her motivation to help others with cancer. Surrounded by a supportive church family during her illness, she felt that she was traveling with God and asked Him to show her what His plan was for her. The Rashel Foundation provides tangible help to people: rides to appointments, food, money for utilities and medical devices, running errands, babysitting, and food. One recipient was especially grateful for banana cream pies during her illness. Rashel said that she knows she has a guardian angel who has been with her since the beginning of her journey. The Foundation currently has 650 volunteers and relies on donations for its work.
Rashel is active in community outreach and meets with oncologists, radiation nurses, hospice employees, and social workers to let them know about the Foundation and to get patient referrals. For more information or to refer a patient, contact her at (205) 567-5211 or www.TheRashelFoundation.org.
Rashel closed her presentation with this statement: “My job while I am on this earth is to love people. My life has changed for the better.”
Brenda Lamb brought a cake for Rashel which she happily shared with the group to celebrate Mary Anne’s birthday.
Next CanSurvive meeting: Friday, February 20 at noon