Resale therapy

As a volunteer in the cancer world, I’ve noticed that a lot of newly diagnosed patients feel the urge to give away stuff while others buy everything they ever wanted.

People who give away stuff may see less value in material things as they value other aspects of their life more. Or, they may think the cancer will kill them, and they’d prefer to distribute their stuff to particular people while they still can. This may have to do with the desire to be remembered.

Those who indulge in “retail therapy” may feel like they have sacrificed enough. Or, they may want to enjoy what little time they have left. Shopping can be like hoarding for a rainy day.

I did the former when I was diagnosed. One motivation was: I had settled the estates of my grandparents and parents, and I wanted to lessen the burden on my executor. One friend was so creeped out that I told her she could return my carnelian necklace if I survived five years. (I’ve survived seven, and I got the necklace back. I forgot how pretty it was.)

In addition to giving away things, I didn’t buy new things. Why get new shoes if I’m going to be in a wheelchair? My mattress was almost 20 years old, but why get a new one if I’m just going to ruin it?

A couple of years ago, I got tired of living like a refugee, on the border between life and death. The shopping spree began. Because I can’t afford retail, I love Shopgoodwill.com and a weekly flea market at a retirement center near my home. The flea market is open only to residents and their guests, and it's staffed by residents, mostly women in their 70s, 80s and 90s, like the witty Hungarian woman who loves cats and the woman who served as a WAVE in World War II. I enjoy them as much as I enjoy getting a Coach purse for $3.

Sometimes I “rescue” things – like the Finn Comfort sandals for $5 that were too small for me -- in hopes of finding them a home. For a friend’s wedding, I got some ridiculously overpriced bowl on her gift registry. As a personal gift, however, I gave her a Wedgwood bowl I bought for 50 cents because we had talked about how Wedgwood helped fund abolition activities.

Although I watched Absolutely Fabulous, I still didn’t know much about labels until I became a resale queen. I’m intrigued by the markup – how something can cost more than $100 at the mall, but I can get it NWT (that would be “new with tags” for you amateurs) for a few dollars.

As medical science takes me, organ by organ, new clothes help my body image. The ideal would be to love my body the way it is. In the meantime, some fantastic outfits have helped.

I know this sounds overblown, but this buying feels like a celebration of life. I’m enjoying the bounty of beautiful things and thinking I might live a while. Even if I don’t, I’ll go out in style.
-- Suzie Siegel

This is Sarcoma Awareness Month

Sarcoma nonprofits and oncologists have agreed on July. But you might not know that because we don't have Congressional recognition, unlike other cancers, such as colon, ovarian, kidney, prostate -- well, pretty much everyone but sarcoma. Without official recognition, it's harder to get on calendars and such.

I've contacted the American Cancer Society, in hopes it will put us on its calendar and find a friendly legislator. Someday, I hope the people who represent us will grant us this small favor.

-- Suzie Siegel

GlaxoSmithKline Recruiting for Clinical Trial

GlaxoSmithKline is actively recruiting participants for an international Phase III, double-blind trial of pazopanib in patients with soft tissue sarcoma. Pazopanib is an oral angiogenesis inhibitor targeting VEGFR, PDGFR and cKit. Eligible subjects may have received a maximum of 4 prior lines of systemic therapies (including up to 2 combination regimens) for advanced disease, including an anthracycline-based regimen; (neo)adjuvant/maintenance treatments are not counted against this criterion. Other primary inclusion criteria include confirmed disease progression, metastatic and not only locally advanced disease and measurable disease according to RECIST criteria. No liposarcomas (all subtypes), Ewing tumors or GIST tumors are eligible. See Clintrials.gov Identifier NCT00753688 for complete eligibility criteria and participating centres

Gem, tax, dox and trabectedin for LMS

I know I'm leiomyosarcoma-centric! Eventually, I hope other volunteers will report developments in treating their subtypes. In the meantime, I want to discuss some LMS news that illustrates how confusing research can be for a patient trying to decide which chemo to do.

At ASCO, a poster from the French Sarcoma Group suggested that gemcitabine (Gemzar) + docetaxel (Taxotere) is not more effective than gemcitabine alone. One reason this matters is gemcitabine is less toxic than the g+d combo.

The study divided patients into those with uterine LMS and LMS that arose elsewhere. ULMS patients had better responses in general to the chemo, a pattern seen in other studies.

In contrast, a multi-center SARC trial in 2007 found g+d more effective than g alone in metastatic soft-tissue sarcoma, including LMS.

At a discussion session, Dr. Chris Ryan of Oregon Health & Science University in Portland, OR, noted that the French study had a relatively small number of patients. He said he wished there would be random trials comparing g+d to anthracyclines as a first-line treatment. Doxorubicin (Adriamycin) is an anthracycline that is often used as the first line of defense for LMS and some other sarcomas.

Another poster, from the UK, found g+d effective as a first-line treatment for metastatic LMS. But it didn’t compare g+d to g alone or doxorubicin.

Dr. Martee Hensley of Memorial Sloan-Kettering Cancer Center in New York reported on a SARC Phase 2 trial of adjuvant chemo for high-risk ULMS. Patients get four cycles of g+d, followed by four cycles of doxorubicin. The trial isn’t finished, but judging by the early data, she said, she expects patients to do better with adjuvant chemo. (See what I wrote about adjuvant chemo for soft-tissue sarcoma in general.)

To gain a better understanding, she said, doctors could do a trial in which some women got adjuvant chemo and others did not. The ones who didn't get chemo couldn’t get a placebo because they would know from the lack of side effects. Another option would be to compare adjuvant chemo with an aromatase inhibitor, she said, or to compare one chemo against another.

Dr. Hensley discussed problems with both the AJCC and FIGO staging systems for ULMS. She wants a nomogram that combines stage-specific variables with other factors. A good staging system matters because if you enroll patients who were going to do well anyway, it influences the results of a clinical trial, she said. From an MSKCC study:

Estimates of stage-specific PFS [progression-free survival] and OS [overall survival] for uterine LMS were altered substantially when using the AJCC versus FIGO staging system. Adjuvant treatment strategies should be tested in patients at substantial risk for disease progression and death. Neither the FIGO nor AJCC staging system is ideal for identifying such patients, suggesting a need for a uterine LMS-specific staging system to better target patients for trials of adjuvant therapies.

In other ASCO news, at least three studies noted again that trabectedin (also known as yondelis) has value in treating patients with liposarcoma and leiomyosarcoma. (Click here, here and here.)
-- Suzie Siegel

Putting the "sun" in the sunflower

We swelter in the sun at fundraisers, hoping to spread the word about services for people affected by sarcoma. This photo shows Judy Lehman, a retired school nurse practitioner, who helped me staff a table at Miles for Moffitt in Tampa last month.

More than 3,000 people participated in the race to raise money for research at the Moffitt Cancer Center, including a team called the Sarcoma Speed Demons.

Although the Sarcoma Alliance needs to raise money for itself, and we have our own fundraisers, we welcome the chance to participate in any event where we can give people information.

At Miles for Moffitt, I was grateful to the University of South Florida students who provided antiseptic gel, gloves and water so that I could catheterize in a portable toilet. (I had left my house without the proper supplies.) As more people with cancer survive, we will need to keep in mind their health needs as we plan events.

An example of that is Moffitt's fundraiser for sarcoma research July 18. We had planned on a morning at the beach, but the weather has been so scorching that the staff decided instead on bowling in air-conditioned comfort. Come join us! -- Suzie Siegel

With help from our friends

Last year, my friend Susan Snyder and her life partner, Doug Murray, cycled through the Columbia River Gorge as part of Jackson's Ride the Gorge, a fundraiser for the Northwest Sarcoma Foundation. At the start of the ride, they wore T-shirts with my photo and "Cruisin' for Suzie" written under it. On the back was a kid on a tricycle, looking over his shoulder and sticking out his tongue. He says, "Take THAT sarcoma!"

It is great to have friends. It is even better to have friends with a sense of humor.

This year, the event will be July 18. Melissa Hill, the foundation's executive director, has been very supportive of the alliance. Also, please check out Susan's blog, Nature's Call.

-- Suzie Siegel

Adjuvant chemo

Medical oncologists in sarcoma still disagree over the value of adjuvant chemo for many subtypes, and that was apparent in a discussion at ASCO last month. The ASCO Daily News reported on it, but I'll add in some of my own notes.

Dr. George Demetri of the Dana-Farber Cancer Institute in Boston talked specifically about GIST, and if you're interested, I encourage you to click on the Daily News link above. The other two doctors in the session talked about chemo in general for other subtypes.

Session Chair Ian Robert Judson, MD, of the Royal Marsden Hospital, United Kingdom, noted that questions arise about the appropriateness of adjuvant therapies because of several factors. Soft tissue sarcomas are rare diseases, he explained, and there are conflicting data on the efficacy of chemotherapy as well as variations in clinical practice regarding the standard treatment for these diseases. ...

“We know that there are variations in response to these treatments among individuals, and unless we learn more about how to identify who is likely to benefit, we run the risk of administering a lot of unnecessary treatments with accompanying toxicity,” said Dr. Judson in an interview with ASCO Daily News.

He noted that the physician must take into account the individual patient’s level of risk tolerance, along with the best available evidence regarding the likelihood of benefit when deciding whether to initiate adjuvant therapy for these malignancies.

Robert S. Benjamin, MD, of M. D. Anderson Cancer Center, reviewed recent literature regarding adjuvant chemotherapy for soft tissue sarcomas. He noted that the Sarcoma Meta-analysis Collaboration in 1997 found that doxorubicin-based chemotherapy improved time to local and distant recurrence and overall recurrence-free survival; however, there was not a significant improvement in overall survival.

After the 1997 study, ifosfamide was added to doxorubicin, and that improved survival a little, he noted. Since then, other drugs have been developed or tried with sarcoma. He criticized a 2007 study by the EORTC, saying it was not representative of a global, random population.

He recommends neoadjuvant chemo, if possible, because it lets the oncologist judge whether the tumor is reacting to the chemo. In regard to adjuvant chemo, he would like to see doctors give more of it for a longer period of time.

“I don’t put much stock in the argument that chemotherapy doesn’t work,” he said. “We know that, yes, it works and no, it doesn’t work nearly well enough. So we need to give more of it, not less. Stage III sarcomas are such a bad group of tumors that, even though we know the treatment is going to be awful for the patient, not treating them is ethically unacceptable.”

Dr. Benjamin suggested that clinicians should not approach adjuvant therapy for soft tissue sarcomas using the same rules for breast cancer therapies because of broad differences between the diseases.

He noted that breast cancer is more common and more homogeneous than sarcoma and therefore results in larger studies and more numerous therapies, whereas there are limited options for sarcoma.

An abstract from the French Sarcoma Group, presented at last month's ASCO, found little benefit for grade 2 patients, but improved survival for those with grade 3.

-- Suzie Siegel

Different NCCN standards

        If a woman gets diagnosed with an abdominal sarcoma, her oncologist can check the National Comprehensive Cancer Network's soft-tissue sarcoma guidelines, written by some of the top doctors in sarcoma centers across the United States.

        If a woman gets diagnosed with the same sarcoma subtype in her uterus, her oncologist will be steered to the uterine neoplasms guidelines, written by top gynecologic oncologists.   

        The guidelines for uterine sarcomas recommend a patient get a physical exam every three months for two years, plus a chest X-ray annually. "CT/MRI as clinically indicated." This replaced the previous recommendation of: "Chest/abdomen/pelvis imaging every 3-6 mo for 2 y, then annually."

        Meanwhile, the soft-tissue sarcoma guidelines recommend a physical exam, plus CT scans of the abdomen/pelvis, every 3-6 months for 2-3 years for someone whose tumor started in the abdomen. "Consider chest imaging." These guidelines also have much more information on new drugs and genetics for sarcoma.

         I don't understand why there are different standards, nor do I understand why chest imaging is not recommended more highly, considering that some subtypes migrate to the lungs. 

        In 2005, I asked Dr. Robert Benjamin about the NCCN guidelines, and he said sarcoma doctors would write the ones for uterine sarcomas in the future. That future has not yet come. 

      -- Suzie Siegel

SARC creating unified database

          SARC will build a database of tissue specimens stored at M.D. Anderson Cancer Center in Houston. The WWWW Foundation has more information: 

The QuadW board and the Tichenor family have combined to provide a three-year $687,500 grant to the Sarcoma Alliance for Research through Collaboration (SARC) to create a unified clinical trial database system.

The database will consolidate findings from the clinical trials of multiple research institutions, allowing remote data entry and access for current trials. Researchers will be able to customize the user interface to suit individual trials and access data from previous trials and combine it in flexible ways with current research data.

SARC is a primary resource for sarcoma researchers and clinicians. As a collaborative effort of leading cancer centers, SARC guides the development of clinical trial protocols and provides a forum for reporting and evaluating the results of those trials.

          SARC Treasurer Bob Benjamin, chair of Anderson's Sarcoma Center, discussed the database last month before the annual meeting of the American Society of Clinical Oncology (ASCO) in Orlando. Dr. Benjamin said the data should be collected this year, with tissue samples and imaging tests gathered together next year.

          I'm grateful to those who made this happen. If you want more information on the need for tissue banks, I wrote this article previously. -- Suzie Siegel

Women under-represented in clinical trials

This is a news release from the University of Michigan, and I'm posting it verbatim because I think it's really interesting. -- Suzie Siegel

Women are under-represented in clinical cancer research published in high-impact journals, according to a new study by researchers at the University of Michigan Comprehensive Cancer Center.

Taking into account the incidence of particular types of cancer among women, studies included a smaller proportion of women than should be expected. The analysis looked specifically at studies of cancer types that were not gender specific, including [sarcoma,] colon cancer, oral cancers, lung cancer, brain tumors and lymphomas.

The authors looked at 661 prospective clinical studies with more than 1 million total participants. Results of this study appear online in the journal Cancer and will be published in the July 15 print issue.

“In the vast majority of individual studies we analyzed, fewer women were enrolled than we would expect given the proportion of women diagnosed with the type of cancer being studied. We’re seeing it across the board in all cancer types,” says study author Reshma Jagsi, M.D., D.Phil., assistant professor of radiation oncology at the U-M Medical School.

“It’s so important that women are appropriately represented in research. We know there are biological differences between the sexes, as well as social and cultural differences. Studies need to be able to assess whether there are differences in responses to treatment, for example, between women and men,” she adds.

The National Institutes of Health’s Revitalization Act of 1993 explicitly calls out the importance of including women in clinical research, noting that clinical trials should enroll adequate numbers of women to allow for subgroup analysis.

The U-M researchers found that studies reporting government funding did include higher numbers of women participants, but the impact was modest – 41 percent, compared to 37 percent for studies not receiving government funding.

Traditionally, researchers were told not to include people of vulnerable populations in their studies. This group included women of childbearing age. “By protecting them from research, we’re excluding them,” Jagsi notes.

Previous studies have found some barriers to clinical trial participation are lack of information, fear and a perception of interfering with personal responsibilities, such as child care.

“Sometimes participating in research studies can be time intensive. Women today are often stretched very thin trying to deal with the balance between domestic responsibilities, their cancer diagnosis, and often a career as well. They may be particularly likely to find clinical trials too burdensome. In that case, researchers should consider providing compensation to help with transportation or child care expenses,” Jagsi says.

This under-representation of women is not necessarily the result of conscious decisions, points out senior author Peter Ubel, M.D., director of the Center for Behavioral and Decision Sciences in Medicine at U-M.

“Clinical researchers are not purposely trying to exclude women from their studies. All the more reason they need to consciously and earnestly revise their recruitment methods to give more women a chance to volunteer,” Ubel says.

Methodology: The researchers looked at all original clinical cancer research published in five top oncology journals and three top general medical journals in 2006. The journals included were the New England Journal of Medicine, the Journal of the American Medical Association, the Lancet, the Journal of Clinical Oncology, the Journal of the National Cancer Institute, Lancet Oncology, Clinical Cancer Research and Cancer. Articles were analyzed to determine factors including the number of participants, gender of participants, type of cancer and funding source.

The percent of women was summarized in two ways: The overall percent of women from all studies; and the average percent from each study that were women. The first method gives greater weight to larger studies, while the second method allows each study to have equal weight. Women’s representation was lower than expected, based on general population incidence data, according to both analyses.

Sarcoma & women's oncology

This is a photo of Gia and Genine Apidone, wearing the puzzled expression of someone who might not actually know what sarcoma is. Genine is a counselor at Case Western Reserve University in Cleveland. She and I have master's degrees in women's studies, and we were in classes together that looked at women in the health-care system, among other things.
         I was thinking of that this month when I went to a reception for the new Center for Women’s Oncology at the Moffitt Cancer Center in Tampa. The center combines the clinics for breast and gynecologic cancers.

         I'd love to hear from women with sarcoma in other locations -- do you ever think: Hey, I'm a woman, too!

         At the reception, I wore a pink suit because it was pretty, forgetting my own "gang colors."  Because my cancer arose in my reproductive tract, people told me that I should have worn teal, the color for ovarian cancer, which seems to have morphed into the color for all gyn cancers. (I could have worn purple for leiomyosarcoma or yellow for sarcoma.)
         There was live music, gourmet hors d’oeuvres and an open bar. One doctor joked that patients might not mind the usual wait time if the waiting room could retain the bar. Survivors were given a white rose and a tote bag. 
          We won’t keep the bar, but there’s no doubt that women whose cancers arose in their reproductive tracts will get an upgrade in amenities by the merger with the breast clinic. Many women have worked hard to raise money to fight breast cancer. I have great respect for them. In a system that relies heavily on volunteers and donations, however, people with rare diseases get less.
           As an example: In the new center, plush bathrobes in a light sage, tied with a ribbon, rested on the exam tables. I asked if those were the gifts we could win in the drawing. No, I was told, patients would be wearing them. WHAT?? We don't have to wear stiff paper drapes or white-with-small-flowers-and-washed-a-zillion-times-in-hot-water gowns?
           Combining the breast and gyn clinics can increase collaboration among doctors in the clinic and the labs. I'm all for collaboration -- I wish oncologists in gyn and sarcoma would collaborate nationwide.
            There’s a genetic link between some breast and ovarian cancer. For the women with that genetic profile, it makes sense to join forces. But there are other cancers connected by genetics or treatment, e.g., retinoblastoma and soft-tissue sarcomas. I hope all oncologists and support staff understand the various connections.

             -- Suzie Siegel

Spirit of Survival West 2009

Please join the Sarcoma Alliance on June 28th, 2009 in celebrating the 4th annual Spirit of Survival West in San Francisco’s beautiful Golden Gate Park. This is a day dedicated to everyone affected by cancer, and specifically those with sarcoma. It's a day filled with optimism and hope. It's a day where sarcoma patients, friends, families and their caregivers meet, share stories, and bond with supporters like you. It's a day when you know that "You are Not Alone.

There will be a 5k walk and for the more ambitious either a 5k or 10k run.

Learn More

http://www.sarcomaalliance.org/events.html

Sarcoma Alliance Attends Oncology Annual Meetings

In early May, I attended the annual meetings of the Oncology Nursing Society and the Association of Oncology Social Work. These meetings provide an important opportunity for the Alliance to let oncology providers learn about our programs and services. They also give us the opportunity to renew long term relationships and bring professionals up to date on our new initiatives and activities. We see all kinds of providers at these meetings. Some only have a few sarcoma patients each year and are very excited to learn that there is an organization that can support them in their care of patients and their families. Similarly, some stop by because a family member or close friend has been diagnosed with sarcoma, and they are excited to find an organization that can help them. Finally, some have very large number of sarcoma patients and ask that we send them a new supply of our brochures.

The meetings also give us an opportunity make or renew relationships with other advocacy organizations. We often decide that our respective clients would be better served by adding links on our websites to each other. For example, we have added links to First Descents ( www.firstdecents.org ) a camp for your adults with cancer and to www.imtooyoungforthis.org that empowers young adults affected by cancer.

Finally, we also meet with representatives of pharmaceutical companies to talk about clinical trials for sarcoma. I spoke with Merck who in partnership with Ariad are conducting a worldwide trial on Deforolimus. This phase 3 trial is progressing well with patients still be enrolled. More information can be found at www.succeedtrial.com . A detailed update will be available at the American Society for Clinical Oncology’s annual meeting at the end of May in Orlando, Florida. I will have an update in early June.

Arthur Beckert, Executive Director

Miles for Moffitt

This run/walk May 9 raises money for research at the Moffitt Cancer Center in Tampa.

This year, I'll have a table in the health expo to tell people about services available to sarcoma patients, such as our live chats, discussion board and peer-to-peer network. 

There also will be a Sarcoma Speed Daemons team again. To get you in the spirit, here are some photos from 2007 by Jim Stem. That year, we won an honorable mention for having more than 30 team members.

Above is Miles for Moffitt President Karen Dalton, who gave an award to Greg Stamatelos for being the fastest survivor. He ran 5 miles in 40 minutes, 32 seconds. Although he had brain cancer, he ran for the sarcoma team and has been a supporter. In the white T-shirt is Chad McLeod, a survivor of Ewing's, who ran 10 seconds behind Greg. Dr. Samuel Agresta, a medical oncologist in the sarcoma program, ran alongside Chad, his patient. Both are triathletes. Dr. Agresta now works in San Francisco. 

 

Cindy Harris covered the spokes of her wheelchair in green and yellow to match her Sarcoma Alliance T-shirt. Her husband, Rob, and son, Kevin, brought refreshments for the team. Dr. Julia Cogburn, below, then a medical-oncology fellow, modified her Sarcoma Alliance T-shirt to make it cooler under the hot Florida sun. She came in second in the 5K race among women aged 30-34, with a time of 26 minutes, 22 seconds.

Another team member to place was Jay Ronca, below, who finished 11th among men aged 30-34, running 5

miles in 43:29. I'm sure a lot of people got educated that day on what a sarcoma is. Wish us luck this year!

Suzie Siegel

We go worldwide

When we have more money and help, we plan to translate our pages into other languages. In the meantime, we hear from people around the world who can speak, read and/or write in English. Executive Director Arthur Beckert estimates we reach people in more than 30 countries each year. Our Peer to Peer Program includes people from 16 countries outside the United States. Our friends and supporters are just as far-flung. As an example, here is journalist Wilma Yamzon of Manila in the Philippines.
-- Suzie Siegel