Tuesday, September 10, 2019

13th Annual Learning for Living Symposium: September 14th, 2019 Four Seasons Hotel Ballroom – 2nd Floor 200 Boylston Street, Boston

Don't forget to signup for the 13th Annual Learning for Living for September 14, 2019. 

WHEN: September 14th, 2019

WHERE: Four Seasons Hotel Ballroom – 2nd Floor
200 Boylston Street, Boston


It's sponsored by Ovations for the Cure and the line up of topics will be of interest to many.

It's FREE and women are encouraged to bring a guest. Parking is at a discount and there's always a wonderful breakfast and lunch. There's a great line-up of speakers covering many topics.

Some of the topics will include the latest update on PARP inhibitors, misconceptions about clinical trials, a Q&A session and a session on hospital vs network based patient centered care for advanced ovarian cancer. To sign up, follow this link.

Thursday, August 22, 2019

Ovarian Cancer's New Identity: A Chronic Disease

This article was originally posted CURE Today on April 1, 2019. Written by Deborah Abrams Kaplan
Women with this disease are living longer, despite common recurrence.
 When Luci Berardi received a stage 4 ovarian cancer diagnosis in October 2010, she did not want to know her chances of survival. The physician told her family she'd be lucky to make it through Christmas, but no one passed that on to her. "I knew I had cancer and needed chemotherapy. It was bad enough (that) I knew it was stage 4," Berardi says. She focused on her treatment and healing and revamped her diet, while still teaching yoga and working part time doing administrative work for a dental practice.
About 85 to 90 percent of ovarian cancers are epithelial cancer. For those with stage 4 disease, "the statistics may say that 17 to 20 percent will survive five years, but it's not zero," Berardi says. "People survive." Survival rates are higher for other ovarian cancers — for all types, the five-year relative survival is 47 percent. If the disease is found early and has not spread outside the ovary, that rate jumps to 92 percent.

Like Berardi, women are living longer with ovarian cancer, and it's increasingly seen as a chronic disease. Front-line, or initial, treatment hasn't changed much in the past decade. But in recent years, new treatments have been added to the mix. These include oral therapies instead of IV; combination, immuno- and anti-angiogenic therapies; and PARP inhibitors. Most of these are for recur­rent disease and may be based on genetic testing results. For the estimated 22,530 women a year who receive an ovarian cancer diagnosis in the United States, this is good news. Testing for genetic mutations may look at inherited mutations, which a person is born with, and show a higher likelihood of cancer risk. Genetic testing can also be done on the tumor tissue, showing genetic changes that were acquired later, and results may indicate whether specific treatments are more likely to help.
Luci Berardi says she views her disease no different than someone who has high blood pressure or diabetes.

About 75 percent of women with ovarian cancer receive their diagnosis when the disease is stage 3 or 4. "The majority of them can be treated with curative intent," says Pam Khosla, M.D., section chief of hematology and oncology at Sinai Health System in Chicago. That includes debulking surgery, in which surgeons remove as much as they can of the visible tumors and cancerous tissue. Microscopic cancer cells and cancerous tissue that can't be surgically removed are then treated with chemotherapy — typically, carboplatin and Taxol (paclitaxel).

Some doctors recommend surgery before the standard six cycles of chemotherapy, whereas others recommend three cycles, surgery and then three more cycles. Surgery may be the first step if the tumor is causing pain or physical issues, such as a bowel obstruction, or the physician is unsure whether cancer is causing the problems.
That was the case for Erica Roberts. In December 2015, she had abdominal cramping so severe, she thought her appendix was bursting. A trip to the emergency room and radiology imaging led the physician to believe she had an ovarian cyst. Only during the operation several weeks later did he realize she had stage 3A high-grade serous carci­noma, and he removed her ovaries and affected organs.

Not all patients are candidates for surgery — maybe the cancer is too extensive or the surgeon doesn't think enough diseased tissue can be removed. The patient would typically receive chemotherapy every three weeks — two weeks on, one week off — or weekly, depending on the oncologist. After three cycles (or nine weeks) of treat­ment, imaging is repeated and cancer antigen (CA) 125 — a protein found in the blood — is measured. A CA 125 blood test can indicate a rise in ovarian cancer growth and determine how well the patient is responding to chemo­therapy. If chemotherapy is working, patients who have not yet had surgery may be scheduled.
In June 2018, the Food and Drug Administration (FDA) approved Avastin (bevacizumab), a targeted therapy that belongs to a class of drugs called angiogenesis inhibitors, to use with chemotherapy and then alone for about a year, for women with stage 3 or 4 ovarian epithelial cancer that has been surgically removed. It was shown to increase the average amount of time before a recurrence. "To date, it hasn't led to improvement of overall survival, but it keeps the cancer in remission four months longer than not using it," says Ursula Matulonis, M.D., director of gynecologic oncology at the Susan F. Smith Center for Women's Cancers at Dana-Farber Cancer Institute in Boston.

About 70 percent of women with ovarian cancer will face a recurrence, according to the Ovarian Cancer Research Alliance. However, recurrence also varies by stage of disease. Maintenance therapy can help prevent the cancer from returning after the completion of chemotherapy. Up until a few months ago, Lynparza (olaparib), a PARP inhibitor, was approved only for patients who had a recurrence. But in December 2018, the FDA approved the oral medication as a first-line maintenance treatment for women with BRCA inherited (familial) genetic mutations — BRCA1 and BRCA2 raise a person's risk of developing certain cancers, such as ovarian, breast and prostate — and advanced-stage disease. The drug targets an enzyme inside cancer cells to make it less likely that the cancer cell will repair itself, resulting in cell death. "It's shown impressive results," Matulonis says, with an increase of three years in progression-free survival compared with placebo.

Regardless of BRCA mutation status, PARP inhibitors were already approved as a maintenance strategy, says Maurie Markman, M.D., president of medicine and science and a medical oncologist with Cancer Treatment Centers of America in Philadelphia. The PARP inhibitor Rubraca (rucaparib) is approved for women with BRCA-positive advanced ovarian cancer who received multiple lines of chemotherapy treatment, and Zejula (niraparib) was approved after subsequent chemo­therapy, no matter the BRCA status.

Although chemotherapy is the standard initial treatment, it doesn't work for everyone. Diane Davis learned of her stage 2C ovarian cancer diagnosis in January 2017. After having 18 inches of her sigmoid colon removed because of tumor involvement, she began chemotherapy. Three cycles in, she felt just as bad as she had before surgery. Radiology studies showed that the cancer had grown back, spreading into her lymph nodes. "I was dumbfounded," she says. "No one ever says people don't make it through chemo."

Genetic testing revealed that her tumor was microsatellite instability high (MSI-H) — cancer cells that have a greater than normal number of genetic markers and respond well to immunotherapy. Although immunotherapy has not been highly successful with ovarian cancer, Keytruda (pembrolizumab) was approved in 2017 for adult and pediatric patients with unresectable or metastatic solid tumors identified as MSI-H, just at the time she needed it. Davis started the two-year treatment that June, and in August, a CT scan showed that the new tumor was gone and the lymph node tumors shrunk. "We all cried," Davis says. "My doctor said he'd never seen anything like it."
Genetic testing should be done on all patients at the start of treatment, Matulonis says. This often involves blood tests that look at hereditary mutations. "Right now, there are at least 11 implicated genes for high-risk transmis­sion," she says. She recommends including as many genes as possible in the testing panel, not just the BRCA mutations. A genetic panel also covers Lynch syndrome, an inherited condition that increases a person's risk of developing cancers such as colon, endometrial and ovarian and is linked to several gene alterations. Davis is living with Lynch syndrome. In addition to those that are inherited, mutations can also be acquired in the tumor.

Tumor assays can be used that may point to experimental therapies that attack the cancer's vulnerabilities.

Although genetic testing is now highly recommended, not all patients think to ask for it. "A lot of people in my local support group hadn't heard of it," Davis says. "It's important — not only knowing that you might have a genetic mutation that could give you other types of cancer but (also) to know (about) other treatments avail­able. If my doctor hadn't done testing on my tumor, I couldn't get immunotherapy, and I'd not be talking to you today."
Berardi also found genetic testing helpful. When she had a recurrence in 2014, her doctor recommended chemotherapy because she did well on it previously. She heard about genetic testing and sent a tissue sample from the baseball-size tumor the surgeon found during surgery. The genetic profile showed that the standard chemo­therapy would not work well for the tumor. Instead, her doctor gave her etoposide, a chemotherapy less commonly used in ovarian cancer. It put her in remission, with no evidence of disease.


Living with a chronic disease may affect a person physi­cally and mentally. For instance, chemotherapy-related fatigue and nausea are common. Women with ovarian cancer also face sexual health concerns, such as painful sex, libido loss, early menopause and infertility. All these symptoms can lead to mental health issues such as depression and anxiety.
Through palliative care, health care providers can help patients through these concerns and improve their quality of life. "Palliative care doesn't mean hospice," Markman says. "'Palliate' means 'to improve, to make better.'" He prefers the term "supportive care." The goal of palliative care is to prevent or treat the symptoms of the disease as early as possible, according to the National Cancer Institute.

Patients within Sinai Health System meet with a multidisciplinary team, including a pharmacist, supportive oncology coordinator, nurse navigator and behavioral therapist, to schedule care, answer questions and address any issues, Khosla explains. Using this team approach has both improved patient satisfaction and quality of life and reduced hospital visits. Some hospitals reserve the palliative care specialists for those whose lives are heavily affected by treatment, though nurses and oncologists are trained to help with symptoms. "If you're feeling side effects, chances are they have something to help you get better," Roberts says of her oncology nurses. "You don't get a gold medal for going through chemo without taking pain pills."

Receiving palliative care can improve more than how a person feels, according to a study published in Annals of Behavioral Medicine, which showed that it can keep patients alive longer. Researchers analyzed studies that compared patients with advanced cancer who received palliative care with those who didn't. They found that the palliative care group lived 4.5 months longer.

As many as 20 percent of patients with advanced stage disease have no recurrence after front-line therapy. Still, life after treatment doesn't necessarily bring a sense of relief, especially when it's time for periodic CA 125 testing.

Roberts finished her front-line treatment in 2016, including surgery and IV and intraperitoneal chemo­therapy. She's been in remission since. "The closer I get to the three-month checkup, the drumbeat gets louder," and she thinks about the cancer constantly, she says. In addition to taking medications to handle her anxiety, she sees a counselor and goes to a Gilda's Club support group. "The physical scars are just about healed. The emotional footprints are left," she says.

Although difficult, the treatment process can still make women feel tended to. Once chemotherapy finished, Carol Hyman felt a cloud hanging over her — she felt alone and concerned about recurrence. "Even though the chemo is terrible, you're being taken care of; you're checked on continuously," she says. Hyman received a stage 3B diagnosis when she was 65. Physicians found three large tumors and removed about a dozen lymph nodes.
In addition to finding her own support network, Berardi changed her diet. She sees a naturopath to get high-dose vitamin C infusions and supplements to reduce inflammation. She eliminated processed sugar and dairy and decreased her intake of carbohydrates. She takes a small amount of naltrexone and metformin, prescribed by her naturopath, in hopes of preventing recurrence. Patients sometimes use naltrexone at low doses to inhibit cancer growth and balance the immune system. Metformin targets stromal inflam­mation, which may provide resistance to cancer growth. Neither is approved by the FDA for ovarian cancer treatment because of lack of clear proof from controlled clinical trials, but anecdotal evidence suggests that some patients may benefit from these medications. "I'm trying to create an internal environment that is not conducive for the cancer to survive," Berardi says.

Although she has had two recurrences, she says, the experience was in a way a blessing. "It took some of the anxiety away," Berardi says. "My mindset now is that it's a chronic disease, nothing different than high blood pressure or diabetes. You have to monitor it." She also wrote a book, "Chasing Rainbows: My Triumph Over Ovarian Cancer," because she was unable to find that sort of resource when she first received her diagnosis.

Hyman also finds support groups comforting. At her first meeting, she realized that every woman there had had at least one recurrence. Even though that talk can be scary, Hyman says, it gave her hope. One woman's comment left a lasting impact: "I'm not dying from ovarian cancer — I'm living with ovarian cancer."

Wednesday, August 21, 2019

Donna Wiegle: Leaving on her Cross-Country Trip To Raise OC Awareness

August 18, 2019by Donna WiegleOrganizer

Just 9 days left until I depart for Coos Bay, Oregon. Last I heard my bike had made it as far as Columbus, OH, expecting to be delivered at Highway 101 Harley Davidson on August 23. I arrive on August 27 and if all goes well on my travels across the country I will begin my ride the following day.

My fundraising is going amazingly well!!! I am just $91 short of $28,000!!!! It is unbelievable how generous both people I know, and those I don't know have been! It's so heartwarming to have so many people supporting me and my mission.

Speaking of support, you can see from my picture here that I am sporting my new black leather vest with my TEAL on WHEELS patch on the back. A lovely lady from Cherryfield, Downeast Maine, sewed the patch on for me and would't accept any payment! I had the same thing happen when Les Foss inspected my teal and white bike...no money exchanged hands. Also, when I got the bike serviced by Stanley Gardner at Gardner Racing Concepts...Stanley provided all the parts and labor free of charge to support me.  

It's crunch time now and I still have a long list of things to do, but each day I am making progress towards my departure date. I am excited, nervous, and just a little bit scared! I know everything will work out just fine. I packed 1,000 ovarian cancer symptoms cards rubberbanded in packs of 25, then packed in ziplock bags in my saddlebags of my bike. I hope to distribute every last one on my way across the United States.

If you want to follow my trip, go to tealonwheels.org and subscribe to my blog on the bottom of the home page. I will be posting frequently from the road.

Thank you for all of your support. It means the world to me!

To donate to Donna's campaign to raise awareness about the signs and symptoms of ovarian cancer, go to this linkhttps://www.gofundme.com/f/teal-on-wheels-ovarian-cancer-awareness-tour

Register for the Ovations 13th Annual Learning for Living Symposium on Sept. 14, 2019

This is always such a great event that is free to women and their guests. The day begins with breakfast at 8 a.m. followed by presentations by leading ovarian cancer experts and then lunch. Parking is at a reduced rate.

To find out more about this important event and to register, follow this link

Thursday, August 15, 2019

Nirapamib for Maintenance Therapy: New Evidence that All OC Women Would Benefit

When I was diagnosed 4 years ago options for maintenance therapy were generally limited to women who were BRCA+.  Not so any more with this particular PARP. Avastin was also available but the data was not strong enough to support me being on it, according to my surgeon. I was Stage 3C and the plan was for me to undergo surgery followed by IV/IP treatment, all of which I completed.

Maintenance therapy is becoming more standard however and so, four years out, there is  nothing in the article to suggest that women like me begin maintenance.

This article by Dr. Oliver Dorigo from Stanford University Medical Center, was found on Survivornet.com. Here's what Dr. Dorigo has to say about Nirapamib:

After undergoing surgery and getting chemotherapy for ovarian cancer, you may want to consider taking a relatively new kind of drug called a PARP inhibitor, which helps to kill off cancer cells. “PARPs” are somewhat recent entrants into ovarian cancer treatments and are getting lots of attention from oncologists.
What are PARPs For?
While PARP inhibitors were originally approved to treat cancer recurrence in BRCA mutated patients with at least 2 or 3 prior lines of chemotherapy, there is compelling new evidence that all ovarian cancer patients, regardless of BRCA mutation, may want to consider PARP inhibitors for maintenance if they’re responding well to chemotherapy (including a platinum drug such as Carboplatin).
We spoke to Dr. Oliver Dorigo, a Gynecologic Oncologist at Stanford Medical School, about some of the details:
Niraparib as late-stage therapy for women without BRCA mutations:
Niraparib, also known as Zejula, is one of the three major PARP inhibitors, and can be used in patients without BRCA mutations (about 80% of women). According to Dr. Dorigo, “We have trials that have shown that Niraparib in any patient with [ovarian cancer] can be beneficial in the maintenance setting…independent of a BRCA mutation.” Tumor cells with BRCA mutations have problems repairing DNA already, and the PARP inhibitors make these cells even less functional, causing cancer cells to die. Nonetheless, Niraparib has been shown to be effective in patients without this mutation. The other two PARP inhibitors, Olaparib and Rucaparib, are also approved to be used in this setting with the same indications.
The drug is currently approved for use as maintenance therapy for advanced/recurrentovarian cancer patients, regardless of whether they have BRCA mutation. These patients have undergone initial surgery and multiple rounds of chemotherapy, but their cancer continues to come back. In fact, in one trial known as the NOVA trial, patients without BRCA mutation who had already undergone several rounds of chemotherapy lived more than twice as long after taking Niraparib as those who did not. Niraparib, like other PARP inhibitors, is used to block the ability of tumor cells to repair DNA, thus eventually killing them.
Niraparib as an ‘up-front’ therapy for women without BRCA mutations:
Niraparib is also being tested in a clinical trial for use after just the first line of chemotherapy. Doctors refer to PARP inhibitors used at this early stage in the treatment course as the drug being given ‘up-front.’ According to Dr. Dorigo, the trial, called the PRIMA trial, is looking at whether Niraparib can be used in ovarian cancer patients directly after the first round of chemotherapy following surgery, regardless of whether they have a BRCA mutation. Although the results have not been presented or published yet, Dorigo and other specialists believe that there is hope for the use of this drug in this setting.

Tuesday, August 13, 2019

Evaluating Bevacizumab and PARP Inhibitors as Important Treatment Options

The following is a transcript by Dr. Michael Birrer, taken from Survivornet.com. Dr. Birrer, formerly medical director of gyn/onc and the gyn/onc research program at MGH, is now at the University of Alabama.

How do you decide what patients should get bevacizumab versus PARP? And that's really the million dollar question, and it's a very unique question. 
For those of us treating ovarian cancer patients, for almost 20 years, all we had was Carboplatin and Taxol. 
And we would argue about what taxane to use, or we might argue about IP versus IV. 
But there weren't really earth-shattering questions. 
Now we have choices, so it's terrific for the patients. 
But nevertheless, one needs to make that choice. 
And I think that the field is migrating that if patients have either germline or somatic BRCA1 gene mutations, that when possible, they should get a PARP inhibitor. 
However, you need to recognize you're looking at about 20% of the patient population. 
The other 80%, you need options. 
And there is where one might consider bevacizumab. 
Now does everybody get bev? Probably not, if you have certainly tumor infiltrating the bowel or other contraindications that might be risky. 
But again, that's a small patient population. 
So that's the way most of us are dividing this down. 
Genetic abnormalities giving rise to ovarian cancer-- BRCA1, BRCA2-- will get PARP inhibitor maintenance. 
And if they don't, they should be offered bevacizumab. 
What's the next step? And would there be an option to give both? The answer is, absolutely. 
So there are several ongoing trials looking at the combination of olaparib with bevacizumab, so we'll know the answer to that. 
If I were to give an educated guess, I would say we'll be treating with both agents in the near future.

Monday, July 29, 2019

Are You Currently Taking Zejula?

Survivornet.com is working with Tesaro, the makers of Zejula. Survivornet is editorially independent but has been hired by Tesaro to interview women who are currently taking Zejula.

They are not asking women to be positive or negative about the medication or asking them about their experiences with side effects etc.

Survivornet will pay you $1,000 for your time and effort and cover all your expenses to bring you out to NY. You would be videoed and essentially have 2 lines to say: 1) you are currently taking Zejula for either maintenance or recurrence of OC and 2) to contact Tesaro for more information to see if this medication is appropriate for you.

If you are interested, Survivornet would like to do the filming on August 16, 2019 but this could be negotiated. For more information, contact Alex Buxton at 929-304-9400 or via email at alex.buxton@survivornet.com

Wednesday, July 24, 2019

A Collaborative Effort has Uncovered Novel Therapies to Treat an Aggressive Form of Ovarian Cancer That is Unresponsive to Standard Treatment

This research came out of the funding from the Department of Defense Ovarian Cancer Research Program. Here's the article that's up on their website:

The Ovarian Cancer Research Program (OCRP) formed the Ovarian Cancer Academy to bring together talented and highly committed Early-Career Investigators (ECIs) along with experienced mentors to help establish the ECIs as successful and highly respected ovarian cancer researchers. To create an opportunity for the ECIs to form meaningful and productive collaborations both within the Academy and in the ovarian cancer research community, the OCRP offered the Ovarian Cancer Academy Collaborative Award in fiscal year 2014 (FY14). The award stipulated that the proposed collaboration be led by an Initiating Principal Investigator (PI) from the Academy and a team consisting of Partnering PIs, which could be other ECIs or independent investigators not affiliated with the Academy.
A team led by Dr. Panagiotis Konstantinopoulos was awarded the FY14 Ovarian Cancer Academy Collaborative Award. The other members of the team include fellow ECI Academy member Dr. Rugang Zhang and Dr. Dipanjan Chowdhury, who was not a member of the Academy.  The project aimed to develop strategies against cyclinE1 (CCNE1) amplified ovarian cancer, the most deadly ovarian cancer due to a lack of responsiveness to standard chemotherapy. Excitingly, the team has had success in identifying and validating heat shock protein 90 (HSP90) as a novel therapeutic target. 
The functional homologous recombination (HR) in CCNE1 amplified cells allows them to repair the DNA damage caused by chemotherapy, making them chemoresistant. HSP90 is a chaperone protein that assists proteins, including CCNE1 and those involved in HR, to fold properly. The team hypothesized that the inhibition of HSP90 would interfere with HR and downregulate CCNE1, and, alone or in combination with other DNA damage inducing drugs, may induce lethality in CCNE1 amplified cells.

The team’s results revealed that HSP90-inhibition downregulates HR DNA repair in CCNE-1 amplified cell lines and induces significant cell death. They determined that an HSP90-inhibitor, AT13387, synergized with DNA damage inducing agents, such as PARP-inhibitors, and enhanced cell death in CCNE1-amplified cell lines. Next, the team assessed the effects of the combination treatment of HSP90-inhibitors and PARP-inhibitors in patient derived CCNE1-amplified ovarian cancer tumors in a mouse model. They determined that the combination treatment inhibited tumor growth and was more effective than either treatment alone, suggesting that HSP90 inhibitors in combination with PARP-inhibitors may be an effective treatment for CCNE1-amplified ovarian cancer.

These impressive results supported by the OCRP have led to the initiation of a Phase 1 clinical trial of the PARP inhibitor, olaparib, and HSP90 inhibitor, AT13387, for the treatment of recurrent ovarian cancer and other metastatic solid tumors. If successful, this trial could validate this novel therapeutic strategy to treat patients with CCNE1-amplified ovarian cancer tumors who have poor outcomes due to the ineffectiveness of standard treatment.

Tuesday, July 23, 2019

Medicaid Expansion Narrows Racial Gaps in Access to Timely Ovarian Cancer Care: Study

This article first appeared on OCRA webpage and summarizes some of the findings of the American Society  of Clinical Oncology's annual meeting in June of 2019.

 The annual Medicaid expansion may have significantly reduced racial disparities in access to earlier ovarian cancer treatment, according to a new study. 
The findings, which were presented at the American Society of Clinical Oncology’s annual meeting, show that blacks were 4.8 percentage points less likely than whites to receive care in a timely manner, defined in the study as within 30 days of diagnosis. 
In states where Medicaid was expanded under the Affordable Care Act (ACA), however, black patients saw a 6.1 percentage point improvement in access to timely care for ovarian cancer. Early detection and treatment of ovarian cancer is crucial, because survival rates for the disease plummet as it progresses. 

“Many studies have described racial disparities that exist in cancer care, but few have shown what kind of interventions improve health equity—we now have evidence that Medicaid expansion can mitigate certain health disparities,” Amy Davidoff, Ph.D., senior research scientist in health policy at Yale University, said in a statement. The researchers did not find a statistically significant increase in access to timely ovarian cancer care across all 30,000 study participants, however. For whites, for example, Medicaid expansion led to a 2.1 percentage point increase in access, which was not significant. 
However, the disparity between access for white and blacks “all but disappeared,” the study found. 

The ACA expanded access to coverage both through Medicaid expansion and subsidies available to low-income people seeking plans on the exchanges—and that’s the key to the changes the study observed, the researchers said. 

There is no screening test especially for early-stage ovarian cancer, but the sooner a woman reports the symptoms, the more quickly she can be treated. And women with insurance are far more likely to make that trip to the doctor earlier, according to the study. 
“We also know that uncertainty about having health insurance, especially for someone newly diagnosed with cancer, can make a big difference in getting appropriate care in a timely manner,” Davidoff said. 

The researchers are now working to build models that can project the variance in treatment outcomes between patients treated in expansion and non-expansion states. 

Tuesday, July 16, 2019


What is a CA125 blood test?

CA125 is a protein that both men and women have in their blood. The normal level of this is 35 units per millilitre (U/mL), or lower.
A CA125 blood test is used to check the level of the protein in the blood. It can be carried out at a local doctor’s surgery if they have the facilities, or the patient will be referred to their local hospital the same way they would for any other blood test. 

When might a CA125 blood test be necessary? 

A CA125 blood test should be requested if a doctor suspects a patient's symptoms could be caused by ovarian cancer. A referral for this blood test should be made if a woman is presenting with any of the four main symptoms of ovarian cancer:
  • Persistent stomach pain
  • Persistent bloating
  • Needing to wee more frequently or urgently
  • Difficulty eating or feeling full more quickly
A referral for a CA125 blood test on presentation of these symptoms is particularly important if they are persistent, frequent and out of the ordinary with no other obvious explanation. A doctor would usually refer for a CA125 blood test following a physical abdominal or internal vaginal examination. 

Does an increased CA125 level mean ovarian cancer?

An elevated CA125 level is not a diagnosis of ovarian cancer. More investigations are required to determine what is causing the elevated CA125 level. Patients will be referred for a pelvic or transvaginal ultrasound scan to gain a better internal picture and to identify any abnormal masses on or around the ovaries.
If abnormal masses are seen a patient would usually then require more scans, and some explorative surgery in order to make a certain diagnosis of ovarian cancer. You can find out more about how ovarian cancer is diagnosed here.

What else can cause a CA125 to be elevated?

There are a number of conditions that can cause a CA125 level to be elevated. They include the following:
  • Pregnancy
  • Endometriosis 
  • Pelvic inflammatory disease
  • Endometriosis 
  • Menstruation 
  • Fibroids
  • Benign ovarian cysts
  • Pancreatitis 
  • Renal failure 
  • Liver cirrhosis 
  • Chest infection 
  • It is also important to note that some women will have naturally high CA125 levels in their blood.

    Can a CA125 blood test be used as a screening tool for ovarian cancer? 

    Currently, it is not possible to use CA125 blood tests as a way of screening women for ovarian cancer for a number of reasons. 
    As previously discussed it is not just ovarian cancer that can cause an elevated CA125 reading, there are many other things that can cause this to be the case, along with the fact that some women will have a naturally elevated level with no cause for concern. So not all women with a raised CA125 level will have ovarian cancer, and it is also important to consider some women may have ovarian cancer but have a normal CA125 reading. 
    Annually screening all women with a CA125 blood test could lead to many being referred for further investigations that are unnecessary, causing needless worry and the possibility of having to undergo inappropriate surgery for no reason.
    In 2015 the results of a long-term study looking at the effectiveness of annual CA125 blood tests and ultrasound scans found that in some instances more women were diagnosed with the disease earlier, and in some of these cases death rates from the disease were reduced. However, further analysis is required to determine if these results can be conclusive and cost-effective enough for CA125 blood tests and ultrasound scans to form part of a national screening programme.

    What other research is happening in screening for ovarian cancer?  

    Ovarian Cancer Action funds the work of Professor Ahmed at the University of Oxford and so far, the team have made several exciting discoveries that have taken them closer to answering that question. They have found that the number of cells that have a protein called SOX2 is markedly increased in the fallopian tubes of women with or at high risk of ovarian cancer. Having a better understanding of how the disease develops is key to developing a screening tool.
    Although they have made some exciting discoveries, there is still a lot more research to be done. Identifying the SOX2 protein is an important step forward but it’s very difficult to get to, meaning a screening tool centred around it would be quite invasive. They are now looking for other changes that take place in the body simultaneously to the SOX2 protein production and, by harnessing different markers, they hope to find another marker that is easier to test for. 
    They hope to complete their next stage of investigations within the next five years and then the next step would be to translate their findings into clinical research. 
    This article was published by Ovarian Cancer Action.

Thursday, July 11, 2019

Donna Wiegle's TEAL on WHEELS: Ovarian Cancer Awareness Tour

Do you know the signs and symptoms of ovarian cancer?  I didn't think so.
My name is Donna Wiegle and I am living with advanced stage cancer. Three years ago, I was diagnosed with stage IIIB ovarian cancer and given a 5-year prognosis. It took my medical team more than two years to figure out what was wrong with me.
Over the past three years, I have heard many stories that were like mine. I have met women who knew something was wrong with them and they felt like no one was listening. They received diagnoses of irritable bowel syndrome, GERD, urinary tract infection, diverticulitis, chronic fatigue, and even suggestions of mental health issues—no one suspected ovarian cancer.

In her lifetime, a woman’s chance of getting breast cancer is 1 in 8.  Her chance of getting ovarian cancer is 1 in 78.  With no screening tests for ovarian cancer, by the time most women are diagnosed, they have stage III or IV cancer with  5-year survival rates of less than 39% and 17%. Ovarian cancer ranks fifth in cancer deaths among women, accounting for more deaths than any other cancer of the female reproductive system.  

Breast cancer’s color PINK is everywhere helping to raise awareness about the disease.  Ovarian cancer’s color is TEAL, which is virtually nowhere to be found.  If I asked the next ten women I meet what the symptoms of ovarian cancer are, I would be surprised if any could tell me.  I would also be surprised if the next ten people working in the medical field could tell me the symptoms of ovarian cancer.  This MUST change!

TEAL on WHEELS will encompass my mission of spreading ovarian cancer awareness across the United States. I plan to make this ride solo—just me, my bike, and my message.
I found the perfect bike...a teal and white 2016 Harley Davidson Heritage Classic motorcycle that I will ride across the country.   A leather jacket with a TEAL on WHEELS logo on the back and a flag with a teal cancer ribbon proudly displayed on the back of the bike will draw attention to me and the bike.  This will allow me to share my message at gas stations, hotel parking lots, restaurants, highway toll booths—everywhere I go. 
I plan to schedule stops along with way to talk with women’s groups, to doctors and nurses at medical centers—I might even show up at churches on Sunday mornings to spread my message.

I will be carrying business cards with the symptoms of ovarian cancer—abdominal bloating, lower back pain, frequent and urgent need to urinate, fatigue—symptoms that are easily dismissed by women and their doctors.  Unlike other cancers, there are no screening tests for ovarian cancer, only symptoms.

September is Ovarian Cancer Awareness month and that is when I will be riding across the country sharing my message.  TEAL on WHEELS will be a month-long ride.

In addition to raising awareness, I want to raise money to be donated to two non-profit cancer organizations.  The first, Ovarian Cancer Research Fund Alliance (OCRFA) is the largest ovarian cancer research organization in the world.  OCRFA works to advance research to prevent, treat and defeat ovarian cancer.  

The second non-profit organization, Turning the Tide Ovarian Cancer Retreats, Inc. has a different mission. Since 2012, Turning the Tide has hosted ovarian cancer patients and survivors living in the Northeast, for a 5-day retreat at Camp Kieve in Nobleboro, Maine. Turning the Tide Ovarian Cancer Retreats offers women the opportunity to come together and bond creating a Teal Sisterhood at a beautiful lakefront setting.  

All the donations received through this GoFundME campaign for the TEAL on WHEELS Ovarian Cancer Awareness Tour will be handled by the Beth C. Wright Cancer Resource Center, a non-profit organization in Ellsworth, Maine.  Michael Reisman is the Executive Director of the Beth C. Wright Center and will be managing all of the donations for TEAL on WHEELS.

I intend to make this ride as a solo journey, but I can’t do it alone—I need your support. 
Won’t you help me by donating to TEAL on WHEELS?

Tuesday, July 9, 2019

Novel Treatment Turns Tumors into "Cancer Vaccine Factories"

I found this article online at ClearityFoundation.org
By Mark L. Fuerst
In-situ vaccine may enhance immunotherapy response in resistant cancers, study shows.
A novel approach to cancer immunotherapy injects immune stimulants directly into a tumor to “teach,” induce the immune system to destroy the cancer and other tumor cells throughout the body. The three-step approach works as an in-situ cancer vaccine, researchers said.
A preliminary study could point to a new way of making immunotherapy more effective in cancers that have proven to be resistant to treatment and also enhance the effects of checkpoint blockade.
“The in-situ vaccine approach has broad implications for multiple types of cancer,” the study’s lead author, Joshua Brody, MD, of the Icahn School of Medicine at Mount Sinai in New York City, told the Reading Room. “This method could also increase the success of other immunotherapies, such as checkpoint blockade. The in-situ vaccine has multiple benefits: it’s simple, more practicable, costs a fraction of a personalized vaccine [does], and lets us optimize therapy.”
So far, Brody and colleagues have treated 11 patients, median age of 54, with indolent non-Hodgkin lymphoma (NHL), a cancer that, in general, does not respond to immunotherapy. Of the 11 patients who received the experimental therapeutic vaccine, one had a complete remission, two had partial remissions, and six had stable disease.
“This adds a new way to make anti-programmed death-1 (PD-1) agents effective in tumors where they are generally not effective,” Brody said. “PD-1 blockers help 20% of NHL patients, but that leaves the other 80% without effective immunotherapy. This is a novel solution to fix that problem. We have seen dramatic results in the laboratory to make PD-1 blockers more effective, and the vaccine induces systemic clinical remissions that can last for months.”
As immunotherapy continues to benefit from novel approaches to cut immune brake pedals, such as anti‐PD-1 and anti‐cytotoxic T-lymphocyte antigen 4 antibodies, there will be an increasing need to develop immune “steering wheels,” such as vaccines to guide the immune system specifically toward tumor-associated antigens, he noted. One hurdle in cancer vaccines has been the identification of universal antigens to be used in “off‐the‐shelf” vaccines for common cancers. Another hurdle is production of individualized whole tumor cell vaccines.
The new vaccine essentially turns the tumor into cancer vaccine factories by teaching the immune cells to recognize the cancer cells, said Brody. Once identified, the immune cells actively seek out all the cancer cells of the body and kill them. The three-step approach consists of (1) recruiting dendritic cells, (2) loading dendritic cell tumor antigens, and (3) activating the antigen-loaded dendritic cells.
The treatment consists of administering a series of immune stimulants directly into one tumor site. In the first step, a human protein form of FMS-like tyrosine kinase-3 ligand (FLT3L) recruits dendritic cells, which are important immune cells that act like generals of the immune army, Brody explained.
In the second step, low-dose radiation therapy activates the dendritic cells, which then instruct T cells, the immune system’s soldiers, to kill cancer cells and spare non-cancer cells.
In the third step, a toll-like receptor-3 agonist activates the dendritic cells and stimulates the immune army to recognize features of the tumor cells so it can seek them out and destroy them throughout the body.
In laboratory tests in mice, the vaccine drastically increased the success of checkpoint blockade immunotherapy. PD-1 blockade didn’t cure any large tumors, but after adding the vaccine, the cure rate increased to 75%. Side effects were grade 1 or 2 flu-like symptoms and muscle aches that last for a day. “We did not see any autoimmune adverse events,” said Brody.
Clinical Trial Ongoing
A clinical trial for lymphoma, breast, and head and neck cancer patients opened in March 2019 to test the vaccine with checkpoint blockade. The in-situ vaccine is also being tested in the laboratory in liver and ovarian cancers.
“Literally hundreds of immunotherapy trials are accruing thousands of patients each year to understand how to better whip T cells into shape and to get immune soldiers to do their job harder,” said Brody. “Clinical oncologists are frustrated that the majority of patients don’t respond to PD-1 blockers. We may be able to potentiate PD-1 blockade with this in-situ vaccine.”
In a 2018 review of in-situ vaccination, Mee Rie Sheen, PhD, of Harvard Medical School in Boston, and Steven Fiering, PhD, of the Geisel School of Medicine at Dartmouth in Hanover, New Hampshire, noted that local administration of immunostimulatory reagents into a recognized tumor by in-situ vaccination can generate systemic antitumor immunity to fight metastatic disease. “Conventional vaccines contain antigens and immune adjuvants. With in-situ vaccination, the tumor itself supplies the antigen, and the treatment only applies immune adjuvant directly to the tumor,” the authors stated.
They explained that current immunotherapy often fails to eliminate cancer because of local immunosuppression mediated by tumors. In-situ vaccination, in effect, “changes the tumor microenvironment from immunosuppressive to immunostimulatory, stimulates presentation of tumor antigens by antigen‐presenting cells to T cells, and generates systemic antitumor immunity that promotes antigen‐specific effector T‐cell attack of both treated and importantly, untreated metastatic tumors.”
Sheen and Fiering concurred with Brody about the advantages of in-situ vaccination — i.e., that it:
  • Is simple and cost‐effective
  • Has minimal systemic side effects
  • Is a feasible and flexible adjuvant delivery system
  • Exploits all tumor antigens in the tumor to avoid the need to identify antigens
  • Utilizes all antigens in the tumor to minimize immune escape
  • Has potential synergy when combined with other therapies
This article was published by MedPage Today.