CanSurvive Meeting Notes -- Friday, January 20, 2012
Speaker: Roald Hazelhoff from Birmingham Southern College
Topic: Healing Ecoscapes

We had a fine looking group of 21 folks at our CanSurvive meeting on Friday, January 20. The camaraderie is a wonderful thing to behold. It was good to have Jane back and have Sharon join us for the first time.

Our lunch was from the heart healthy menu of Fancy Food Catering and included chicken breasts, couscous, fresh spinach, a tossed salad, rolls, and brownies. Criss brought cookies and Kelly provided our door prizes.

Our speaker was Roald Hazelhoff from Birmingham Southern. He spoke with us about healing ecoscapes (which is a short for “ecological landscapes”). He is a political science professor by trade and has happened into this work. Detailed speaker notes are below.

Announcements:

I forgot to make a couple announcements at the meeting, so I’ll go ahead and include them.

Ovarian Cycle. Training for the NLOCF Ovarian Cycle has already begun. Training can be done at 3 different sites this year. The culmination ride will be Sunday, Feb. 26 at the Levite Jewish Community Center. CanSurvive has a team called “Making A Difference for Connie” in honor of our member Connie LaMonte. For more information, go to www.ovariancycle.org.

Connie LaMonte invites you to a concert. Connie plays the recorder in a quartet, Sine Nomine. We are invited to hear them play. Sine Nomine, a recorder quartet with a special interest in early music, will present a free concert on Sunday, January 29th, at 4:00pm, in St. Andrews Episcopal Church (1024 South 12th Street). The program includes sacred and secular music from the 14th to the 18th centuries. The recorderists, joined by a violinist, a flutist, and a singer, will perform works by Ciconia, des Pres, Dufay, Palestrina, Praetorius, Byrd, Senfl, Bach, and others. The members of Sine Nomine are Steve Calvert, Ken Kirby, Connie LaMonte, and Janice Williams.

Fueling Good Gasoline Card Contest. Please remember to vote daily through Feb 9 to help CanSurvive win gasoline cards. If you have more than one e-mail address, it will let you vote with the other one as long as you don’t try it right away. I put a sticky note on my computer to remind me and also have it bookmarked so I can just click on it. Please ask your friends to vote, too. Voting can be done here.

CanSurvive awareness table on evening of March 11, 7 p.m. at the Carver Jazz Hall at the Bellydance Superstars Show. For more information about the show itself, see their website http://www.bellydancesuperstars.com.

Bags we put together in November for patients were a big hit. We have even received some thank you notes. They are still being given out.

Quilts. The quilters at Gees Bend have said they will make a quilt for our group if we’ll provide the material. We will probably display it at our awareness events. We had some discussion about that. We would also like to have our quilters in our group make a quilt when they are up to it. Christine has wanted us to do an online quilt auction for awhile. We will discuss some of this via e-mail.

Upcoming Meetings:

Friday, Feb. 17, noon – 1:15, American Cancer Society, lunch provided. Our scheduled speaker is gyn oncologist, Dr. Estes.

Sunday, Feb. 19, 2 – 4 p.m., Brookwood Wellness Center @ Gold’s Gym in Vestavia. Meeting co-sponsored by LCBOCF. Speaker TBA

Speaker Notes
CanSurvive Meeting, Friday, January 20, 2012
Speaker: Roald Hazelhoff from Birmingham Southern College
Topic: Healing Ecoscapes
Website showing ecoscapes: http://www.bsc.edu/sec/ecoscape/

A political science professor by trade, Roald Hazelhoff of Birmingham Southern College has found himself designing and spearheading some interesting ecoscapes (ecological landscapes) in our area.

Established in 1996 on BSC's campus, The Ecoscape Program has expanded to the surrounding communities and utilizes local art work to illustrate organic gardening practices, provides a nuts and bolts overview for schools and communities interested in creating low cost nature centers or outdoor learning sites and offers an oasis of natural beauty in our communities. The sunflower is a symbol used throughout these ecoscapes.

Hospitals are a place where we go to get well. However, hospital settings are often unsettling. Recognizing this, some hospitals are starting to realize the importance of ecoscapes. Communing with nature can help one gain a sense of well-being, which is instrumental in healing. Just a few minutes in a natural setting can lower blood pressure and help a person relax.

The Healing Garden at BMC Princeton provides an escape from the hospital environment for visitors and hospital staff. This garden is also across from Princeton Towers, a residential facility for seniors. When designing the garden, seniors were asked what plants were in their yards at home. Smell is sense that engages memory, so when choosing familiar plants there was a conscious choice to incorporate familiar plant smells as well. Since many seniors quilt, a Gees Bend quilt design was incorporated into the fencing.

Railroad Park is a close enough to UAB that families can go there to decompress when their loved one is in the hospital.

The Sameulson Ecoscape at the Eastern Health Center incorporates plants that have medicinal value and includes signage describing the uses. Roald showed us slides of a few of the plants: sweet gum, golden rod, wild giner, witch hazel, catmint, and eucalyptus.

Birmingham was once a close-in urban area with streetcars, trains, and buses used by all when a distance was too far to walk. As urban sprawl has developed, it has left behind hundreds of vacant lots. Not only are the lots unattractive, they tend to become dumping grounds and areas where crime seems to develop.

Reclaiming these areas with native plants and trees helps neighborhoods have green space that can be used for neighborhood gatherings and improve community investment and pride. Plants and trees also help remove pollutants from the air, soil, and groundwater. Brown Springs, Turkey Creek, Tarrant, and north Birmingham have benefited from Ecoscape Projects.

Check these out online at http://www.bsc.edu/sec/ecoscape/ or better yet, check them out in person!

CanSurvive Meeting Notes – Sunday, January 15, 2012
Speaker: Melinda Craft from the American Cancer Society
Topic: Programs and Services of the American Cancer Society

It was great to see the 14 folks who came to the meeting today…folks still in treatment, someone rebounding from a recent hospital stay, folks in remission, and folks who were there just to support us. Three women joined us for the first time.

Thanks to LCBOCF for setting up and cleaning up and providing refreshments.

In the first half of our meeting Melinda Craft told us about the programs and services provided by the American Cancer Society. A summary will follow these notes.

The second half of meeting we shared what was going on with ourselves and discussed some things that were on our minds. The longest discussion concerned whether you get less anxious before check-ups as time goes by and how to handle the anxiety.

Announcements:

Teal Taco Tuesday will be at El Gringo on Lakeshore on Tues, Jan. 17. The restaurant owners are doing this quarterly and donating part of the profits to LCBOCF.

NLOCF Ovarian Cycle training has begun and CanSurvive will have a team to honor Connie LaMonte: Making a Difference for Connie.

Speaker Notes – Sunday, January 15, 2012
Speaker: Melinda Craft from the American Cancer Society
Topic: Programs and Services of the American Cancer Society

Melinda Craft from the American Cancer Society graciously gave up her Sunday afternoon to tell us about some of the programs and services of the ACS in our district. These include funding research, education on prevention and cancer screening, support programs, and direct patient assistance.

ACS provides funding for research. They focus on young researchers who are just starting their research. They have funded 46 Nobel Prize winning scientists.

ACS has 3.8 million dollars in research at UAB. One of the scientists they are funding is gyn oncologist Dr. Warner Huh, who is working on an HPV vaccine that would cover all types of HPV. The ACS grant will enable the vaccine to start being clinically tested and expedite its availability to the public.

One of the areas the ACS focuses on is education on prevention. The Body and Soul program distributes this information through churches in the African American community. Media specialists are used to disseminate information through written and broadcast media. Relay for Life events are not only fundraisers but also awareness events. Our ACS partners with UAB’s Deep South Network to use “natural helpers” to work in a community to get the word out to minorities; Dr. Patridge was very instrumental in initiating this program almost 2 decades ago. In 2010, there were 1800 people reached.

The Smoke-Free Alabama initiative and the Jefferson County Tobacco Free Task Force has the support of ACS.

Cancer screening has been especially effective with breast, colon and rectal, cervical, and prostate and testicular cancers. The ACS provides screening guideline to health professionals and also works with insurance companies to encourage promoting and covering screening tests for their clients. There were 25,000 more seniors screened last year and 20,000 more clients of Blue Cross Blue Shield of Alabama screened in central Alabama.

Support programs are another area of focus. Reach to Recovery (breast cancer), Man to Man, I Can Cope, and Look Good Feel Better are some of the current offerings. ACS provides a room for the Friday CanSurvive meetings free of charge.

The ACS also serves cancer patients directly by connecting them to resources and providing a 24/7 call in helpline with “real live” people on the other end, including oncologists, nurses, etc. That number is 1-800-227-2345.

They help provide transportation through grants, gas cards, and the Road to Recovery Driver Program that matches volunteers to patients needing to be driven to treatment.

Hope Lodge is adjacent to the ACS here in Birmingham. It provides housing for people who live more than 40 miles away from their treatment center.

Other direct patient support offered includes free wigs, prostheses, mastectomy bras, and medical equipment. Pantene’s Beautiful Lengths (similar to Locks of Love) partners with the ACS to provide some human hair wigs.

Being diagnosed with cancer is tough. Throw in having to navigate the medical system and it can be just too much. ACS has a patient navigator to help patients with that.

Explore the ACS website at www.cancer.org.

Speaker Notes Fri., 10/21/2011
UAB Clinical Trial 0801 -- Ronda Carlisle
Patient Advocacy -- Susan Leighton

We were fortunate to have not one, but TWO, speakers today, who passed along some very important information.

UAB Clinical Trial 0801

Ronda Carlisle told us about a new phase 1 clinical trial (UAB 0801) that is for metastatic disease in the abdominal peritoneum. It targets tumors that are HER-2 positive. Archived samples of tumor are tested to see if it is HER-2 positive to see if a patient qualifies.

The trial does include potential GYN pt's or other cancer patients that are in need of treatment for metastatic disease that is in the abdominal peritoneum. The actual treatment is radiolabeled Herceptin that is given intra-abdominally after a standard dose of Herceptin is given IV, without the isotope. The isotope used is lead-212. That is why the tumor is tested for HER-2 before anything else is done. Dr. Ruby Meredith is the Principle investigator for this trial and she is a Radiation-Oncologist.

Ronda's handout can be downloaded here and her presentation can be found here.
***Handouts in .pdf files are below. (To rotate the file, click on "View", then "Rotate", then "Counter-clockwise" in Adobe Reader.)

For further information , contact Ronda Carlisle at 205-975-2511 or Ronda.Carlisle@ccc.uab.edu.

Patient Advocacy

Our second speaker was Susan Leighton. Susan is an ovarian cancer survivor who receives treatment at UAB and is in the Lilies of the Valley Support Group in Huntsville. Susan told us what patient advocates are and what they do. She spoke about her role as a patient advocate and how others can get involved in advocacy. She has served as a Department of Defense Ovarian Cancer Research Program Consumer Reviewer, will be attended ASCO in June as a Focus on Research Scholar, and is active in OCNA's efforts to advocate for increased funding for ovarian cancer research and awareness funding. She showed some charts that illustrated the strides that have been made in breast cancer - mainly because of advocacy -- and compared them to the less positive strides in ovarian cancer.

Susan's handout can be downloaded here.
***Handouts in .pdf files are below. (To rotate the file, click on "View", then "Rotate", then "Counter-clockwise" in Adobe Reader.)

You can contact Susan at SLL260A@aol.com

CanSurvive Meeting Notes from 9/17/2011
Held at American Cancer Society
Speaker topic: Electronic Health Records
Speaker: Cathy Childers from UAB

What a great turnout we had for out meeting last Friday! Thank you all for your attendance. We had 19 attendees. Two of these were new patients, Connie Snodgrass and Darlene Smith. We also had 3 husbands who attended. Our lunch was from Firehouse Subs in Vestavia.

Brenda Lamb led the meeting because Cheryl was out of town. She went over all the upcoming events for September, October and November. We need folks to sign up to work the awareness table at the Southern Women’s Show, Oct. 6-9 at the BJCC. We will be very busy for the next 3 months. (See below.)

Our guest speaker was Cathy Childers from UAB HSIS Group. Cathy is also a cancer survivor and a registered nurse. She spoke to us on Electronic Health Records (EHR). This was a most interesting topic and we were enlightened and appreciated the information. Below is a synopsis of this talk.

An EHR is a version of a patient's medical history that is maintained by the provider over time and includes key data relevant to that person's care and may include: demographics, progress notes, problem list, medication list, allergy list, vital signs and measurements, past medical history, lab and radiology reports, immunizations and other studies to maintain/improve a patient's health.

In 2/17/2009, the government signed into law the American Recovery and reinvestment Act of 2009 (ARRA). In the health care segment of this law, funds were earmarked to modernize health information technology and meaningful use criteria were developed as stated above. Therefore, the EHR was established. If the criteria required for the EHR is not met by 2014, penalties will be levied. That is why there is so much emphasis on this issue now.

The outcomes of EHR use are expected to improve safety for patients as the provider will can use electronic order entry and electronic prescriptions. For example, the system will:

1. Quickly detect of a new prescription is going to interact with medications the patient is already receiving.
2. Provide patients with an electronic copy of their health information upon request, report ambulatory quality measures to Centers for Medicare and Medicaid Services (CMS).
3. Provide clinical summaries to patients for each office visit.
4. Enable providers to exchange key clinical data electronic among other providers and patient authorized entities and
5. Protect electronic health information.

With all this said, the EHR must establish mechanisms for health care providers to put in place to protect the privacy and security of a patient's health data in accordance with the Health Insurance Portability and Accountability Act (HIPAA). Patients do have the right to access their protect health information (PHI) that is used to make decisions about their care. This usually includes medical and billing records, but does not include psychotherapy notes. If a patient is denied this information, in very limited circumstance, they can request a review of the denial. Also, if a patient feels their EHR is incorrect or incomplete, a patient has the right to ask the provider to amend her information for as long as the information is kept by the provider.

CanSurvive Meeting Notes
for Friday, July 15, 2011

It was so nice to see familiar faces, those we hadn't seen in awhile, and new ones as well at our July 15 meeting. We missed those of you who couldn't make it to this meeting, whether it was because you weren't feeling well because of treatments or because you were doing something fun or were at work. We do realize some of you reading this live too far away to attend and hope meeting notes keep you feeling included.

Since we didn't have a speaker, we were be able to just enjoy being with each other, sharing and catching up after a hot lunch from the Char House.

We also did a little planning. We decided we'd like for Dr. Estes to talk to us about the latest research and treatments next month. As for awareness tables in September, it was suggested that we do one at UAB, Brookwood, and St. Vincent's. We will also have one at the Southern Women's Show, Oct. 6-9 with LCBOCF and NLOCF.

The American Cancer Society does not have a room for us November 18 and that will be when we put together the bags for patients getting chemo in late November and December. We decided to find an alternate location rather than an alternate date to do that. We will get that information to you in plenty of time. Margaret told us how pleased patients were to get those bags and how the nurses made a big production giving them out last year.

It is not too early to start getting pictures to Jennifer for next year's calendar. I've got a feeling the camera shutters have been busy this summer. Speaking of pictures, pictures from the June 12 tea are on the website.

Cheryl asked for suggestions about whether to continue the Sunday meetings. Maybe they should be quarterly or on another day or in a different week? Feel free to send comments to her.

We went around the room introducing ourselves and telling a little about ourselves and also shared a piece of advice or something that really helped us after our cancer diagnosis. (See below.) We had 3 husbands with us, too, and they also participated in this. The genuine caring we have for each other and for those we meet in the clinic was touchingly obvious as we discussed and listened.

Best advice or what someone said that helped

• "Ovarian cancer is not a death sentence."
• "Go to UAB."
• "Read Psalm 139 three times a day."
• Accept and feel the love others will give you.
• Ask for the details of your cancer, etc., and educate yourself.
• BUT don't believe everything on the internet or all of what you read.
• Come to the support group.
• "Every day you are still here is one day closer to a newly discovered treatment."

Something else that helped

• Coming to the support group
  • seeing others and realizing life can go on even when living with cancer
  • being with others who can encourage and inspire
  • helps caregivers, too
• Thinking positive and not dwelling on negative things or blowing them up out of proportion.
• Having friends for caregivers.
• Seeing the welcoming smile and being greeted by a clinic employee who also knew me because they also attended the support group meetings

Something learned

• how to graciously accept help offered
• how generous and kind people were with love and help and gifts of time or service

What kept you going

• wanting to see kids graduate from school
• Saying to self, "I can make it through each day."
• Lighting a candle every morning and saying the names of people in our group who needed uplifting and healing.
• having to be there for young kids
• love from others (including former students)
• keeping busy
• faith
• sense of humor

I bet as you were reading these, you thought of particular people who helped you and other things that have helped you make it through.
Love,
Cheryl

Upcoming Friday meeting speakers:

• Aug – Dr. Estes
• Sept. – Joan Hicks on electronic medical and health records
• Oct. – Susan Leighton on advocacy
• Nov. – put together bags at alternate location
• Dec. – no speaker
• Jan. – Ecoscapes and healing gardens - Roald Hazelhoff from B'ham Southern

Upcoming Sunday meeting speakers: TBA (no meeting Sept. 4 because of Labor Day)

• Aug 11 – Picture of health LCBOCF
• Aug 13 – Lori Johnson Fun Run NLOCF
• Sept 1 – “I Got Sick, Then I Got Better” @ Alys Stephens NLOCF
• Sept 17 – Head Over Teal LCBOCF

Meeting Notes from May 20, 2011
Speaker: Lisa Miller RN, BSN, OCN Topic: Genetic connections to GYN Cancers

We had a full CanSurvive meeting this past Friday with 34-35 people in attendance. A couple daughters came along with their mothers and Suzanne Fishwick and her husband joined us for the first time. It was great to see everyone and we missed those of you who were not able to be with us.

We ate a delicious meal from V. Richards that Brenda ordered for us and visited with each other during that time. We had invited Dr. Mack Barnes to come by to say hello, which he did. We asked him to be sure to tell his patients about CanSurvive.

Our speaker was Lisa Miller, RN, BSN, OCN. She is the manager of the High Risk Breast and Ovarian Center at Brookwood. She explained to us how all cancer is genetic. Some genes that are passed down in families put its recipients at higher risks for some cancers. She went through examples of the BRCA mutations and also the genes that are found in Lynch Syndrome. There are red flags that suggest a need for genetic testing. One example is a common cancer occurring at an unusually young age. Another is 2 primary cancers occurring in one individual. Multiple cases of breast cancer in a family or breast and ovarian cancer in the same family are red flags as is colon and endometrial cancer in the same family. Women of Ashkenazi Jewish descent have a 1 in 40 chance of having a BRCA mutation. That is why your oncologist is so interested in your family's medical and ancestral history. The goal of genetic testing is to have more Previvors. Cancer previvors are individuals who are survivors of a predisposition to cancer but who haven’t had the disease.

There was too much information to provide detailed speaker notes. However, if you go to the CanSurvive website -- http://www.cansurvivesupportgroup.org -- and click on Genes and Cancer, you will find some basic information and some links to more information.

We appreciated Lisa's speaking to us at this meeting and also at our Sunday meeting in April.

Announcements:

• Check out the CanSurvive website (http://www.cansurvivesupportgroup.org) Connie's TV interview is on the Home page. The Photos page has pictures from NLOCF Mother Walk.
• UAB's Survivors Day will be Saturday, June 4 at Pepper Place from 7 a.m.-noon. Other hosts include the Laura Crandall Brown Ovarian Cancer Foundation and the Norma Livingston Ovarian Cancer Foundation.
• CanSurvive meeting, Sun., June 5, 2-4 p.m., Brookwood Wellness Center. It will be a time to share.
• CanSurvive's "Hats ON to Heroes and Heroines" tea is Sunday afternoon, June 12. Please RSVP to Brenda or Cheryl by June 6.
• IMPORTANT - NOTE LOCATION CHANGE FOR THE NEXT FRIDAY MEETING ONLY -The Friday, June 17 meeting will be held in the board room of the UAB Comprehensive Cancer Center in the North Pavilion. Bring your parking ticket in so it can be validated for free parking. Moneka Thompson from UAB's pastoral care will give her presentation on "Coping Spiritually with Cancer". She recently did this for the Living with Cancer series.

CanSurvive Meeting Notes from Friday, April 15, 2011

We had a good meeting with Dr. Alvarez and Penny Phillips and Nancy Holmes from the infusion area. If you weren’t able to attend, don’t despair. There will be detailed speaker notes at the end of this. We did miss seeing you, however!

For lunch we had lasagna, vegetarian ziti, garlic bread, 2 salads, and banana pudding from Fancy Food Catering in Pelham. Owner Beau Burdick goes out of his way to make our meals special for us.

The NLOCF Motherwalk is coming up on May 7 (the Saturday before Mother’s Day) in Crestine Village. Our own Connie LaMonte will be interviewed next week by WBRC’s news anchor and CanSurvive board member, Beth Shelburne. We’ll let you know when that should air. For more information, go to www.motherwalk.com. CanSurvive will have a table there and you are welcome to help staff it.

The LCBOCF will have a big Clean Out for Cancer Yard sale on April 30. For more details, see www.thinkoflaura.com.

Lisa Miller from the Brookwood High Risk Breast and Ovarian Cancer Clinic will be our speaker at the Friday May 20 meeting.

Our Friday June meeting will be in the board room of the Comprehensive Cancer Center at UAB. It is in the North Pavilion and is really close to the 4th Ave. deck. I think we may get free parking. Go ahead and put that on your calendar and I’ll give you more specific directions closer to time.

We have several people who are still on treatment or beginning it again. So, let’s remember to keep them in our thoughts and prayers.

Asiah was able to come by the meeting today. Today she brought us some books called The Patient’s Guide to Ovarian Cancer.

Dr. Alvarez spoke with us about new findings and research in gyn cancers and also about the gyn oncology clinic. Penny and Nancy updated us on the infusion rooms. (See notes below.) We appreciated their time with us and the information they shared. Nancy may try to come to our future Friday meetings. It is very helpful to us to have a nurse to address our questions.

Updates on Cancer Treatments, Research, & UAB GYN Oncology
Detailed speaker notes – Friday, April 15, 2011
Dr. Ronald Alvarez
Penny Phillips
Nancy Holmes

Dr. Ronnie Alvarez began by talking about the importance of advocacy and thanked us for our support of their department and patients.

There are 80,000 new cases of gyn cancers each year.

Most cervical cancer is very preventable because of the HPV vaccine or can be found at early or pre-cancerous stages with pap smears. He told us to keep encouraging women to have these done. There is still a high incidence of advanced cervical cancer in underserved population in Alabama.

Obesity is leading to increases in endometrial cancer. Dr. Alvarez says they are seeing more aggressive cancers, especially in the African American population. Their patients with the aggressive cancers were often treated with DaVinci robotic surgery and chemotherapy.

Speaking of robotic surgery, they used that with 400 patients this past year.

There seems to be some strides in diagnostic testing for ovarian cancer using a panel of biomarkers rather than a single one like CA 125. The OVA1 test is not approved as a screening test, but only to get an idea whether a mass might be ovarian cancer. So, they aren’t quite there yet as an effective screening test.

Some genetic mutations are associated with high risk of ovarian cancers. Researchers are finding some gene snips that are association with an intermediate risk. They are also finding genes in the pathways of BRCA genes that might also be associated with higher risk than the average population.

The Cancer Genome Project by the National Institutes of Health (NIH) is identifying the genes found in 3 cancers: brain, lung, and ovarian. In the brain cancer glioblastoma, they are finding 1-2 pathways are responsible for the cancer. In ovarian cancer they have identified 100 abnormalities. This explains why ovarian cancers and their response to treatment can vary so widely from patient to patient. Eventually, this information should lead to very individualized treatments.

Avastin has been added to the chemo arsenal in the last few years. It seems to delay recurrence and recently completed trials should show what effect it has on overall survival.

There is promising news about PARP inhibitors from initial studies especially in BRCA patients. Serous ovarian cancer is the most common type in these patients. New clinical trial will be starting soon.

A new monoclonal antibody that targets folate-receptors on ovarian cancer cells and makes the cells more receptive to chemo is being developed.

Dr. Alvarez has been working on gene therapy treatment for many years. He is very excited about a patient whose cancer has responded very well with this treatment.

Dr. Alvarez talked with us about change. Change is inevitable and brings its own challenges. He and his wife found themselves suddenly empty-nesters this past year which was a big change. He talked about the gyn oncology medical practice and his partners, old and new, and the location changes.

The infusion (chemo) unit was particularly impacted by not only the last location change but also by a big increase in volume. Penny Phillips and Nancy Holmes have been key in addressing these issues and told us about what they have done to improve the infusion area.

The infusion (chemo) unit is now run by UAB Hospital. Since July, the infusion unit has had a 40% increase in patients. Patients can now get blood transfusions and I.V. fluids there without having to go to the hospital. Patients that used to have to be in the hospital for chemo can now get their treatments in the outpatient setting.

Penny now oversees this infusion unit and 3 others. Nancy joined the staff in November. Nancy addressed staffing, scheduling, and where the snafus were.

Permanent staffing is now in place in the treatment rooms. And, while you might not have the same chemo nurse every time, it will be the same nursing staff taking care of you.

Nurses are now assigned phone duties at specific times during the work day, so it should be easier to reach someone. And there is still someone on call for the balance of the day.

A pharmacist has been added to the onsite staff.

They are trying to get patients back within 30 minutes of their appointment and have treatments started within an hour. Treatment times are allotted mindfully. The infusion unit is usually through by 4 or 4:30 daily now.

Dr. Alvarez, Penny, and Nancy answered any questions we had. One thing that came up during the questions might apply to some of you.

If you have had your port for quite awhile and have been getting contrast dye for scans through your port in the past, find out if your port is a “power port”. It should be on your chart if you don’t still have the information yourself. Many radiology units are using an automated “power push” for the contrast now. A “power port” is designed to take the pressure of the automated push and some of the older ports are not. Nancy is going to find out if they can still manually push in the dye through older ports or if it will have to be put in through a vein. We’ll let you know.

CanSurvive Sunday Support Group
March 6, 2011 Meeting Notes

Dianne Baer graciously facilitated this meeting. After our refreshments, welcome and introduction, we had patient updates and announcements. Connie LaMonte presented a program on music and healing for patients and Jennifer and Cris Smiley gave tips to caregivers in the caregivers meeting.

Announcements:

• UAB will do teal lighting on the outside columns of the North Pavilion (6th Ave. So.) in September. (Thank you, Margaret Keeton).
• Beth Shelburne of WBRC has joined the CanSurvive Board. She is passionate about working for ovarian cancer causes. CanSurvive, Laura Crandall Brown Ovarian Cancer Foundation, and Norma Livingston Ovarian Cancer Foundation are working together with Beth and will join her when she speaks with her management about producing a public service announcement, feature pieces, covering events, etc.
• Thanks to LCBOCF for sponsoring the Sunday meetings.
• LCBOCF will have a St. Practice (not a misprint) Day event on Mar. 16th at the Courtyard Southside Bar and Oyster Grill and Pirates and Ninjas at Bottletree on May 13th, and a yard sale in Bluff Park (more details later) on April 30th.
• NLOVCF raised over $55,000 at the Ovarian Cycle.
• NLOVCF will have Motherwalk on Sat., May 7th in Crestline Village. One can register at Motherwalk.com. This year the registration will be on the grassy knoll across from Emmett O'Neal Library.
• We will be doing the Belk's Charity Event on April 16th. Jennifer Smiley has tickets for us to sell.

Speaker Notes for Patient Meeting Sunday, 3/6/2011
Speaker: Connie LaMonte
Subject: Music & Healing

Connie LaMonte gave a talk on music and healing. She introduced us to several basic concepts like entrainment (when our bodies align with the rhythms around us) and musical homeopathy (when we choose music to match what we are experiencing). She shared with us the music that helped her get through chemotherapy and surgeries early in her diagnosis with ovarian cancer. Then we listened to examples of music that we can use to address feelings of anxiety or loneliness as well as evoke joy and hope in our lives. Even though there are lots of different CDs available, Connie emphasized that using our favorite and familiar music is very therapeutic.

Speaker Notes for Caregivers Meeting Sunday, 3/6/2011
Speakers: Jennifer and Cris Smiley
Subject: Tips for Caregivers

Caregivers need support, too. Jennifer and Cris Smiley have “been there” and shared some helpful tips and answered questions. They covered topics about meals; medications and patient care; doctors appointments, treatments, and tests; end of life decisions; and, caring for yourself. To see their outline and a few of the points they made during their presentation, click below.

Click here for the meeting notes

Meeting Notes from 2-28-2011
Speaker: Sandra Gillis with Hand-in-Paw

We had updates on several people and welcomed 2 new patient members. Beth Shelburne of WBRC, who is a new CanSurvive board member, joined us as well.

Margaret Keeton asked UAB to do teal lighting on the outside columns of the North Pavilion (6th Ave So.) in teal in September. They have been doing them pink in October. They agreed to do the teal! (Yea, Margaret!) She is also wanting to talk to B'ham City Hall about doing teal lighting in September in lieu of pink lighting in September and October. Zeke Willis said he might be able to help get that rolling, also.

Jennifer told us that she had sent calendars to the families of those ladies who were on the memorial page along with a note. She also told us that one of our members had left CanSurvive a bequest from her estate so we "could continue to provide services to others...".

Lois Caldwell gave us a report from the Norma Livingston Ovarian Cancer Society. She said Susan Greene is doing a great job as their executive director. Ovarian Cycle will culminate on Feb. 27 at the Levite Jewish Community Center. Several CanSurvive members are riding in that. (By the way, CanSurvive will have a table there with awareness materials and we need volunteers to work it.) She told us who their additional sponsors are for this event. MotherWalk is coming up Saturday, May 7. They are also having an event on September 1 at the Alys Stephens Center. It will feature a speaker who talks humorously about her journey with cancer.

Beth Shelburne told us about her best friend who had ovarian cancer and why she is passionate about working for ovarian cancer causes. CanSurvive, the Laura Crandall Brown Ovarian Cancer Foundation, and the Norma Livingston Ovarian Cancer Foundation are working together with her on this. We will join Beth when she speaks with her management about producing a public service announcement, feature pieces, covering events, etc.

Our speaker today was Sandra Gillis who works with Hand in Paw. Sandra is also a family friend of Jennifer Smiley. Sandra brought her adorable black Shih Tzu named Josie. Hand in Paw has well-trained therapy animals and handlers. Their animals include dogs, cats, horses, and (in some states) chickens! They visit children and adults in hospitals; elders in nursing and assisted living homes; children living in shelters; teens with problems; and, special needs children. Sandra shared many heart-warming stories about how animals have helped people in all these situations. Some programs you may have heard of are "Sit, Stay, Read", "Pawsitive Living", and "PetScription". You can find out more on their website, http://www.handinpaw.org.

Meeting notes from Sunday meeting, 2-6-2011
Speaker: Sarah Webb
Topic: Nutrition and Cancer

The CanSurvive meeting that was held Sunday, Feb. 6 featured nutritionist Sarah Webb. She gave us excellent pointers on how cancer treatments can affect the digestive system and how to maintain nutrition and counteract some of its effects. Her e-mail is sarahsoulewebb@gmail.com.

I converted her PowerPoint presentation into Word:

Nutrition in GYN Cancer Care Sarah Webb MS RD sarahsoulewebb@gmail.com

Source: National Cancer Institute US National Institutes of Health www.cancer.gov

Benefits of Nutrition Therapy

• More effective Treatments
• Handle higher doses of certain treatments.
• linked to a better chance of recovery
• Aid in treatment of side effects

Anorexia and Cachexia

• Anorexia – loss of appetite or desire to eat
• most common cause of malnutrition in cancer patients
• Cachexia – wasting syndrome that causes weakness and loss of weight, fat and muscle
• Anorexia and cachexia often occur together

Effect of Surgery on Nutrition

• Increases body’s need for calories and nutrients
• to heal wounds
• fight infection
• recover from surgery
• Can compromise Immune system
• Similar to trauma

Effect of Chemotherapy on Nutrition

• Chemotherapy: stop the growth of cancer cells, either by killing the cells or by stopping the cells from dividing.
• Targets rapidly dividing cells,
• Therefore, healthy cells that divide rapidly may be affected;
• i.e.: cells in mouth and GI.

Radiation therapy and Nutrition
Radiation therapy to the abdomen:

• Radiation Enteritis
• diarrhea,
• nausea, vomiting,
• inflammation of the intestine or rectum, and fistulas (holes) in the stomach or intestines.
• tiredness
• decreases appetite and the desire to eat.

Enteral and Parenteral Nutrition

• Enteral
• uses GI tract to absorb nutrition/formula
• Tube in nose or stomach
• Parenteral
• Used when the patient cannot take food by mouth or by enteral feeding
• Bypasses the normal digestive system
• Nutrients are delivered directly into the blood, through a catheter inserted into a vein.

Side Effects
Symptoms that interfere with Optimal Nutrition

• anorexia,
• nausea, vomiting,
• diarrhea, Malabsorption
• constipation,
• abdominal pain, bloating, gas
• Urgency with Defecation


• Appetite, taste, smell and ability to eat enough food or absorb the nutrients from the food may be affected.

Tips to deal with lack of appetite

• Small high-protein/high-calorie meals every 2-3 hours
• Have help with preparing meals
• Add extra calories and protein to food (butter, skim milk powder, sugar, cheese)
• Eat snacks that contain plenty of calories and protein
• Prepare and store small portions of favorite foods so they are ready to eat when hungry
• Strong odors can be avoided by:
  • Cooking outdoors on the grill
  • Using a kitchen fan
  • Serving cold food
  • Be creative with desserts
  • Experiment with recipes, flavorings, spices, types, and consistencies of food.
  • Food likes and dislikes may change from day to day

High Protein/Calorie foods
The following high-calorie, high-protein foods are recommended:

• Cheese and crackers
• Muffins
• Puddings
• Nutritional supplements
• Milkshakes
• Yogurt
• Ice cream

Taste Changes

• Rinse mouth with water before eating
• Try citrus fruits unless mouth sores
• Eat small meals and healthy snacks several times a day
• Use plastic utensils if food tastes metallic
• Try favorite foods
• Taste Changes, cont’d.
• Eat with family and friends
• Have others prepare the meal
• Try new foods when feeling best
• Substitute poultry, fish, eggs and cheese for red meat
• Find non-meat, high-protein recipes in a vegetarian or Chinese cookbook.

Nausea

• Eat before cancer treatments
• Avoid foods that are likely to cause nausea (may include spicy or greasy foods, or foods with strong odors)
• Eat small meals several times a day
• Slowly sip fluids throughout the day
• Eat dry foods such as crackers, breadsticks, or toast throughout the day
• Sit up or lie with the upper body raised for one hour after eating
• Eat bland, soft, easy-to-digest foods rather than heavy meals
• Avoid eating in a room with cooking odors

Diarrhea

• Eat broth, soups, sport drinks, bananas, and canned fruits to help replace salt and potassium lost by diarrhea
• Avoid greasy foods, hot or cold liquids, and caffeine
• Avoid high-fiber foods:
  • broccoli, cauliflower, cabbage
  • Salad,
  • baked beans, lentils,
  • nuts,
  • dried beans, peas.
• Drink plenty of room-temperature fluids through the day
  • Drink at least one cup of liquid after each loose bowel movement
• Limit milk to 2 cups or eliminate milk and ice cream until the source of the problem is found
• Limit sugar-free candies or gum made with sorbitol (sugar alcohol)
• Drink at least one cup of liquid after each loose bowel movement
• Oral glutamine may help keep the intestines healthy

(cont'd)

Probiotics

• Synthesize vitamins
• Improve immunity
• Decrease allergies
• May speed recovery from bacterial vaginosis
• May lessen the problems associated with IBD
• Seem to help people with lactose intolerance digest dairy products more easily
• May improve cholesterol levels
• May decrease the risk of colon cancer
• May help people suffering from diarrhea associated with antibiotic usage or acute illness

Foods with Probiotics

• Yogurt
• Cottage cheese
• Buttermilk
• Kefir
• Soy sauce
• Miso
• Tempeh
• Fresh sauerkraut
• Prebiotics

Food for the Probiotics

• Chicory root
• Jerusalem artichoke
• Wheat
• Barley
• Rye
• Flax
• Oatmeal
• Onion

Products to help with diarrhea

• Banana Flakes x 3/day
• JUVEN x 2 per day
  • Glutamine helps with GI health
• Florastor
• Peptamin OS

Low White Blood Cell Count

• Check dates on food and do not buy or use the food if it is out of date
• Do not buy or use food in cans that are swollen, dented, or damaged
• Thaw foods in the refrigerator or microwave. Never thaw foods at room temperature. Cook foods immediately after thawing
• Low White Blood Cell Count, cont’d.
• Refrigerate all leftovers within 2 hours of cooking and eat them within 24 hours.
• Keep hot foods hot and cold foods cold (below 40 degrees or above 140 degrees)
• Avoid old, moldy or damaged fruits and vegetables
• Cook all meat, poultry and fish thoroughly. Avoid raw eggs or raw fish.
• Buy foods packed as single servings to avoid leftovers.
• Avoid salad bars and buffets when eating out
• Avoid large groups of people and people with infections
• Wash hands often

Preventing Dehydration

• Drink 8-12 cups liquids a day
• Take a water bottle whenever leaving home
• Limit caffeine in sodas, coffee and tea
• Drink most liquids after or between meals
• Use medicines that help
• relieve nausea and vomiting

Constipation

• Eat more fiber-containing foods on a regular basis (25-35 grams per day)
• Increase fiber intake gradually and drink plenty of fluids at the same time
• Drink 8-10 cups of fluid daily. Water, prune juice, warm juices, lemonade, and teas without caffeine can be helpful.
• Take walks and exercise regularly.

Meeting Notes - January 21, 2011
Speaker topic: Social Security Disability and Medicare

We met at the Brookwood Wellness Center in Vestavia for our Friday, January 21 meeting and appreciate Carol Binder of LCBOCF arranging that for us. Our Friday meeting will return to the American Cancer Society in February.

It was good to see and visit with everyone as we ate our good hot lunch catered by Fancy Food Catering. Christine told us a little about her Sound of Music trip she took along the Danube before Christmas.

Brenda said Betty King could use some cards. She's had some swelling in one of her legs.

Jennifer brought lots of giveaways and we also had some knitted lap blankets and caps to give away.

Our speaker, Sarah Evans, gave all of us a 7 day pill box, brochures on Disability and Medicare, bookmarks with handy phone numbers, and a little benefits booster & savings booster calculator. We have a few extra brochures.

Speaker Notes:

Our speaker was Sarah Evans from the Social Security Administration. She focused her information on Disability and Medicare. She gave us great explanations and told us where to go for more information, too. (Since I didn't take actual notes (horrors!), I have supplemented what I remembered with information from the booklets she gave us and from the Social Security website. -- Cheryl)

Who can get Social Security disability benefits?

Social Security pays disability benefits* to people who cannot work because they have a medical condition that is expected to last at least one year or result in death. Federal law requires this very strict definition of disability.

Cancers of the female genital tract that extend beyond the primary site or are persistent or recurrent following initial cancer treatments may qualify for disability. In the last couple years, ovarian cancer has been fast-tracked, meaning disability applications are processed quickly and benefits are received quicker than ordinary disability applications.**

Sarah emphasized that you should list all your medical conditions on a disability application in addition to the primary one that has caused you to apply. For instance, besides having cancer, you might also have diabetes. Be sure to list that, too. This will increase your chances of being approved. Of course, Social Security will contact your physicians for verification.

There is an appeals process if you are denied. An independent state agency actually reviews all the applications.

How long do I have to be on disability before I qualify for Medicare?

Sarah explained that a person who has had Social Security Disability for 2 years is eligible to receive Medicare benefits at the end of that 2 years. A couple months before the 2 year anniversary, the person will receive notification about signing up.

Health insurance during that 2 years is problematic for many people and they have to get COBRA coverage or other health care coverage.

However, once you do qualify for Medicare coverage, you should know there are 4 parts to it: Parts A, B, C, D. After initial enrollment, there are certain times of the year that are open enrollment. Social Security's booklet on Medicare has some good explanations about all this.

Part A is the hospital insurance that helps pay for inpatient hospital care or skilled nursing care (if you are transferred directly there from the hospital), some home health care and hospice care. This part is at no additional cost to you.

Part B is medical insurance that helps pay for doctors' service and many other medical services and supplies that are not covered by hospital insurance. You have to enroll for this and it requires you to pay a monthly premium.

Part C is for Medicare Advantage Plans, plans that cover many expenses that Parts A & B do not. It is voluntary and you can sign up for it if you have Parts A & B. You have to pay a monthly premium for this, also.

Part D is a Medicare prescription drug plan. To help choose a plan, there is a tool on the Medicare website where you can input the drugs you are taking to see what plans covers them. Please read in the Medicare booklet why it is good to go ahead and enroll in Plan D initially.

Help for some low-income people on Medicare

If you cannot afford to pay your Medicare premiums and other medical costs, you may be able to get help from your state. To qualify, you must have Part A, a limited income, and limited resources.

You may also qualify for Extra Help for Part D prescriptions and prescription plans. See http://www.socialsecurity.gov/pubs/10525.html. The following is from the Social Security website:

It is easy to apply for Extra Help. Just complete Social Security's Application for Extra Help with Medicare Prescription Drug Plan Costs (SSA-1020). Here's how:

• You can apply online at www.socialsecurity.gov/extrahelp.
• Call Social Security at 1-800-772-1213 (TTY 1-800-325-0778) to apply over the phone or to request an application.
• Apply at your local Social Security office.

After you apply, Social Security will review your application and send you a letter to let you know if you qualify for the Extra Help. Once you qualify, you can choose a Medicare prescription drug plan. If you do not select a plan, the Centers for Medicare and Medicaid Services (CMS) will do it for you. The sooner you join a plan the sooner you begin receiving benefits.

Publications

You can order publications online at http://www.socialsecurity.gov/pubs/index.html or by calling 1-800-772-1213.

*Please note: Supplemental Security Income (SSI) is different from Social Security Disability. SSI makes payments to people with low low income who are age 65 or older or are blind or have a disability. It requires a separate application.

**Listing of impairments that qualify for disability can be found here; Click on 13.00 Malignant Neoplastic Diseases for more specific information on cancer.

CanSurvive Meeting Notes for December 17, 2010

We enjoyed some visiting time over a delicious lunch of beef stroganoff from V Richards and cream cheese brownies from Publix. Thanks for ordering this, Brenda. Jennifer surprised us with the CanSurvive calendars! They look wonderful. If you haven't ordered yours, please do ($10 from Jennifer Smiley, jsmiley@bandhcpa.com). Two new pages are pictures of us when we were young and Drive Out Ovarian Cancer license plates. Jennifer also brought copies of the pictures that Lori, Brenda's daughter, took at our holiday party. A big thank you to Jennifer for the gift of your tremendous energy and commitment to us, and to Lori for taking so many photos and including everyone who was at the party!

Brenda read a special story called "Christmas Eve at the Gas Station." It could have been subtitled: "The real meaning of Christmas." The story told about George, the owner of the gas station, whose wife had died the previous year. He was having a hard time celebrating the season. George welcomed a homeless man into the station and fed him. Then a young Hispanic couple stopped by on their way to the hospital so she could have their baby. Learning that their truck was broken; George let them borrow his, and then fixed theirs. There were other visitors: a policeman who had been shot; a young man with a gun and a sad story - he was going through a very rough time as he had lost his job and wanted to get a present for his wife; two cops who came to help the injured officer. George bandaged the policeman with duct tape and gave him some pain medication; he gave the young man $150, the diamond ring that had been his wife's, toys for the man's son, and a job in the gas station. Then the homeless man returned and told George that he (George) really did know what Christmas was all about: SHARING. As the man left the gas station, George saw that the man's ragged old clothes had turned into a glowing white robe. It was a beautiful story and moved all of us.

We learned that Diane Massey had been able to celebrate Christmas with her family before she died on December 16th. Let's keep the Massey family in our prayers. Connie announced that the first practice session for the Ovarian Cycle will be on January 9th at the Jewish Community Center at 3:30. The actual event is on Sunday, February 27th. You will be receiving more information about this. Please join us!

Jennifer also brought extra items from donations for the holiday bags: Royal Cup Coffee and Verizon Hand Sanitizer. We eagerly snapped them up. Our next CanSurvive meeting will be on Friday, January 21st at the Brookwood Wellness Center behind the CVS in Vestavia. Please note the change in place is for the February meeting only. We are aware that some of us are in treatment and are not feeling well. As we celebrate this season and the new year, please keep prayers coming for our those of us who are having difficult times.

Friday, November 19, 2010 Meeting - Goody Bags!

At our November 19th meeting, we assembled 250 goody bags to be given to patients receiving chemotherapy in November and December. Each bag contained many items including hand sanitizer, socks, chapstick, toothbrush, toothpaste, coffee, lotion, candy, collapsible tote bag, pen, a note pad, and a handwritten note of encouragement from our members. We thank the many companies, health professionals, and individuals who donated items or funds for this.

Sunday, December 5, 2010 Meeting

Massage therapist Suzanne Kilpatrick spoke with the patient group about the benefits of massage for cancer patients. She said it is important that a massage therapist is trained specifically for this so that no harm is done. She also told us that the UAB Comprehensive Cancer Center is working toward offering complementive therapies as part of treatment. Suzanne has an office in Homewood.

Bill Nicholas facilitated the separate meeting for caregivers and shared some tips and observations as did other caregivers.

We thank the folks from the Laura Crandall Brown Ovarian Cancer Foundation for co-sponsoring these Sunday meetings, arranging the room, and providing delicious refreshments.

CanSurvive Meeting Notes
October 15, 2010

Last Friday we met at the Doubletree Hotel on Southside because the American Cancer Society did not have a room for us. What a treat it was to have a white tablecloth lunch! The food was wonderful: fried chicken, green beans, mashed potatoes, macaroni & cheese, grilled vegetables, rolls, tiramisu, chocolate mousse pie, harvest mix mellocreme candy, and Halloween cookies.

And, that wasn't even the best part! Criss & Jennifer Smiley had put together 3 wonderful table holiday decorations: one Christmas, one Halloween, and one Thanksgiving. Criss explained how they used things they already had at their house, for the most part. He said they pick up things at after holiday clearance sales for nearly nothing to use in the future. They used some inverted boxes to give varied heights to the displays. The Thanksgiving one had some gourds and squashes, and a platter of the grilled vegetables which was not only practical, but added nice autumn color. The Christmas one had a big vase full of different colored ornament balls and some poppers. It also had magnolia leaves he just cut off their tree at home. You can use a gold pen to write names on individual leaves as placecards. The Halloween one incorporated orange and black decorations and the mellocreme candies and pumpkin sugar cookies. Criss is the chef at the Doubletree and answered other questions we had for him, too. I think we have some pictures that we'll put on the website (www.cansurvivesupportgroup.com) when we get them.

We had almost 40 people in attendance, including Beth Hosmer, her daughter Jill and new baby. As many of you know Beth was the director and founding member of CanSurvive until about a year ago. She recently retired from UAB, so we thanked her with some gifts and a card. It was nice to see other people who had not been able to come in awhile and we missed those who didn't feel well enough to come.

Maila finished her radiation course that morning (yea!) and will have a scan in a few weeks to check its effectiveness. Joyce and Gail both got good news and don't have to return for a checkup for 6 months.

We will start the additional meeting on first Sunday afternoons of each month on November 7. The first meeting will basically be a meet and greet meeting. We'll also discuss possible speakers, caregivers' topics, etc. These meetings are from 2 - 4 p.m. and will be held at the Brookwood Wellness Center at Gold's Gym, 1090 Montgomery Highway, Vestavia. The Laura Crandall Brown Ovarian Cancer Foundation will provide light refreshments.

The next Friday meeting will be Nov. 19 back at the American Cancer Society. We'll stuff goody bags then, so plan to stay a little longer and bring your notes of encouragement with you. I think you all got a pack of 10 notecards.

Other announcements: 1) Everyone is doing a good job selling the Belk Charity Sale tickets. 2) Brighton at the Summit is donating 250 bottles waters and all the candy for our goody bags. 3) We reached over 3,000 people in our awareness events in the last month. 4) We sent out thank you letters last week to people who have made donations to CanSurvive in the past and asked them to keep us in mind as they consider their charitable giving this year.

CanSurvive Meeting Notes August 20, 2010

We had a record number of people in attendance - 37! Kristen Craig provided a beautiful flower arrangement and we ordered our lunch from the Pita Stop.

Members got a list of tentative and definite dates and places for awareness booths in September and October. A list of these will be attached below. The date for the 27th did not work out. Let Cheryl or Jennifer know if you can work any of these. We'll be sending a separate e-mail for working the Southern Women's Show in October.

Cheryl gave a brief update on members who were not in attendance. Vickie Knox is doing much better at home. Kathy Wickstrom was in Chicago for treatment with a new drug. Alice Laurendine was at the beach. Jan Conway sent word that she will SEE us next month; she was having cataract surgery the day of our meeting.

We welcomed some new faces: Toni and Dave Keyes; Kelly Rice; Cecilia Crandall, Laura's mother; and Nedra Lisovicz from the UAB Dept. of Preventive Medicine. Other members also brought friends.

Christine Hollingsworth brought a catalogue from Hair Options; it is located on Highway 150 in the Walmart shopping center. The owner Loraine McDonald is willing to give us a break on wigs.

Asiah brought some literature about CA125 tests.

We also had $2 off Boost coupons, which we sent to the clinic after our meeting.

Please remember to park behind the American Cancer Society for our meetings. The parking places out front are for the folks staying in the Hope Lodge.

Our big crowd had everything to do with our speaker today. Patty Bunch told us about ongoing clinical trials and some things that are in the pipeline. Actually, Rachel Richardson, who took JoLane's place in research, had to read and explain Patty's slides since Patty had laryngitis. Patty answered questions we had afterward, too.

Patty's Powerpoint presentation is attached below. It will also be posted on the CanSurvive website, www.cansurvivesupportgroup.org. If you can't open this, look at the next e-mail. I'll send the information as a .pdf file.

(By the way, here is a great brochure explaining the phases of clinical trials. http://www.wcn.org/downloads/2010_clinical_trials_brochure.pdf)

• Mon. 9/13 UAB 8:30-3:30
• Sat. 9/18 Head Over Teal Day 8:00-noon
• Mon. 9/20 Brookwood 8:00-3:30

Attatchments:
Click here for Powerpoint
Click here for word version

CanSurvive Meeting Notes July 16, 2010

We had a full house for our meeting today. Our meetings remind me of reunions where everyone is so glad to see one another. We had another great meal by Fancy Food Catering. Kristen Craig provided another exquisite flower arrangement of hydrangeas and roses for a door prize. We had additional doorprizes of items that Jennifer brought back from the OCNA conference. Connie LaMonte graciously led our meeting.

NLOVCA is starting a Speaker's Bureau and will be sponsoring speakers' training in August. Dianne Baer will be a facilitator and asked those interested in training to see her.

NLOVCA and CanSurvive applied jointly for a grant from the Community Foundation of Birmingham. We received about one third of what we requested. This money will be used for an awareness billboard in September.

CanSurvive also applied for and was awarded a grant of $1,000 from the HERA Foundation. This money will be used to print our brochures and to purchase informational and awareness materials. Thanks to Jennifer Smiley and Alice Laurendine for pulling the application together and to Kristin Martin for telling us about this grant. We plan to apply for some other grants.

Our website has a new look. Check it out at http://www.cansurvivesupportgroup.org.

Our members have already been busy procuring items for the 250 goody bags we'll put together in November. We've gotten pens, notepads, socks, dental items such as toothbrushes, small bottles of BBQ sauce donated by Dreamland, pens and coupons for free head wraps donated by Touching You, and hand sanitizer. And that is just the beginning. Thanks to everyone who has been diligently working on this.

Friday, September 3 is Wear Teal Day. Mark your calendar. Halcyann suggested that we contact our local community mayors to have September declared awareness month.

Jennifer Smiley and her cousin Jodie Wilkes represented CanSurvive at the national OCNA conference in July. Other people from Alabama also attended, including Ashleigh Timmerman and Susan Greene from NLOVCA, Sherri Romanoff, Ashleigh's mother Karen, and Susan Leighton from the Lilies of the Valley.

Jennifer and Ashleigh spoke with us about the meeting and Advocacy Day on Capitol Hill. I've asked Jennifer to write a summary for us. It is included in the section below.

CanSurvive Meeting Notes - June 18, 2010

We had a full house today...what a great group! It was especially good to see folks who had not attended in awhile. We enjoyed lunch from Zoe's, good company, and Kristen's hydrangea arrangement that was a doorprize. Thanks to Sarah Moseley who brought some CDs from Hallmark as doorprizes.

Our speaker was Elizabeth Parsons, who is an attorney in Pell City. Liz gave us some excellent advice about documents that we should all have in place: an advance directive for healthcare, durable power of attorney, and a will. She also gave us advice about HIPAA. Detailed notes can be found below.

Legal Documents Everyone Should Have in Place

Elizabeth Parsons, Esquire

Detailed Speaker Notes (taken by Cheryl Bourn) - June 18, 2010

Liz Parsons spoke with us today about legal documents she advises her clients to have in place: an advance directive for healthcare, durable power of attorney, and a will.

An advance directive for healthcare (aka known as a living will) is a document that will make you wishes known about what medical care you would or would not want should you become unable to speak for yourself. It also allows you to name a healthcare proxy and alternate if you so desire. A proxy is a person who would make decisions about your care should you become unable to do so yourself. When asked for her recommendation, she advises her clients to check the box that allows the proxy to make decisions after consulting with the doctors.

The State of Alabama has a form that all hospitals, health care agencies, nursing homes, and lawyers use and recognize. Liz strongly advises that you use this form if you reside in Alabama since that is the one healthcare providers are familiar with. If you currently have the old 1 paragraph Living Will, please know it is no longer recognized.

This form does not need to be completed by an attorney or notarized. It does need to be witnessed.

The Alabama Advance Directive for Healthcare can be downloaded for free from the websites of the Alabama Bar Association and the Alabama Hospital Association. You will find these websites listed at the end of this summary.

Liz also advises her clients to have a durable power of attorney. A durable power of attorney is a person who can handle your business and financial matters while you are living. Typically, this happens if someone is very ill or becomes unable to handle these matters for other reasons. This durable POA lapses when the person passes away. (The executor of an estate then would handle the person's affairs.)

Of course, your durable POA would need to be someone very trustworthy. This is a document that should be drawn up by a lawyer.

The third document everyone needs is a will. With the changes in tax laws over the years, many people can now just have what she calls a simple wills with the spouse inheriting the estate or, if the spouse is deceased, the children inheriting the estate. (Interestingly enough, in Alabama you cannot exclude a spouse as an heir, but you can exclude children.) If there are minor children that will be heirs or if the estate is very large and complicated, a simple will would not suffice.

An attorney should draw up the will. Choose an attorney who practices in the state where you live.

Liz has been in practice for 30 years and had a couple other pieces of advice for us. With regards to HIPAA (privacy) regulations, make sure you list people who can have access to your health information on your HIPAA forms at healthcare providers. Otherwise, the providers cannot disclose any information to them. Also, in order for a health care provider to speak to you about your grown child's or parent's health, you must be listed on their HIPAA forms. If you are involved in your parent's care, this would be particularly important.

If you are single, make sure you have a trustworthy person on your regular checking account with you. You should not keep large sums of money in your regular checking account, but enough to cover your bills. As we all know, the utility companies expect to be paid whether or not you can write a check. Some of her clients pay bills for their parent online.

Websites to download free copy of blank Alabama Advance Directive of Health Care Form:

Alabama State Bar
http://www.alabar.org
	Public Resources
		Health Directive/Lifespan
			Click here to download the Advance Directive
			of Health Care
			
Alabama Hospital Association
http://www.alaha.org
	Resources
		In This Section
			Advance Directives
				Advance Directives Form			

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

Managing Depression: a survival guide for cancer patients and survivors
Detailed Speaker Notes from 2-19-10 Meeting

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

Updates from UAB GYN Oncology
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.

Coping with Nutrition Issues Druing Treatment

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

BRCA Mutations in Ovarian and Breast Cancers

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