SGO Meeting Preparations

 

 

Thanks to support from my Cancer Center, I am heading south to Tampa for the SGO Annual Meeting on Friday. The theme of the meeting is Patients | Purpose | Progress. I'm so excited to be meet up with other survivors/advocates and to learn from the researchers who are making advances to improve the care of patients diagnosed with a gynecologic cancer. 

When I arrive on Friday, barring any airline delays, I hope to attend at least part of the Patients and Advocates Education Forum and Luncheon. I have attended them in the past and have always found them beneficial. This is the first once to be held in person since Covid began. 

Saturday, March 25th, will be an especially busy day for me. 

As a member of the SGO Communications Committee I will be part of a presentation on Saturday ( 2:45pm Ballroom A) . This Education Forum, Ready for Primetime: Media Readiness will present strategies of how to best respond and state your position when asked questions by the media.  

Following the Forum, the Scientific Plenary II session (East Hall, 4pm) will take place.  Survivor/advocate, Annie Ellis, will be presenting Long-term survivors speak: patient perspectives on progress, an abstract she and I co-authored. I will share more about the abstract after the meeting.

There are a number of other sessions I am looking forward to attending and am busy working on the app to set up my schedule and work in some time to meet up with some of my gyn onc friends. 

On Twitter,  be sure to follow the hashtags #SGOmtg and #gyncsm for news from the meeting. 

I'll be posting highlights here once the meeting concludes.

Dee

Every Day is a Blessing! 

Managing the Risk of Ovarian Cancer - OCRA

I've been meaning to write about OCRA's latest consensus statement. So I am happy to share this information/ text from the Ovarian Cancer Research Alliance.

 

Ovarian Cancer Research Alliance (OCRA), with the full endorsement of the Society of Gynecologic Oncology, has launched a new campaign in the fight against ovarian cancer, a bold and important direction for everyone who cares about the future of this field and who cares about saving lives.

The campaign, called Until There’s a Cure, urges people to know their risk; promotes genetic testing to at-risk populations; and encourages women and anyone born with ovaries to discuss prophylactic surgery with their doctor.

“There is currently no cure for the deadliest of all gynecological cancers, nor is there a way to screen for it that has any impact on mortality. But we know there is a way to dramatically reduce the risk,” said Audra Moran, President and CEO of OCRA. “Ovarian cancer is considered a rare disease, but for those with a family history and/or genetic mutation, the risk jumps to 40-50% or even higher. So, knowing one’s risk level is critical. We also know that 70% of ovarian cancer begins in the fallopian tubes, so we are encouraging people who are done having children to discuss with their doctors the possibility of having their tubes removed. Essentially, we want everyone with ovaries to know their risk level, and to know the actions they can take to help prevent ovarian cancer. Until there is a cure, these are our best weapons in this battle.”

Because knowing one’s risk level is critical, OCRA is providing free at-home genetic testing kits to anyone with a personal or family history of breast, gynecologic, or colon cancer. These individuals can fill out a brief questionnaire to determine whether they qualify for the program, and, if they do, have the kits sent to them at no cost. (The test kits are being offered to people 18 or older in the United States only.)

Concurrently, OCRA urges women and those born with ovaries to discuss preventative action with their doctor. Scientists know that the most common and lethal form of ovarian cancer actually starts in the fallopian tubes, with microscopic precursor lesions developing long before any symptoms would ever arise. People who are at increased risk for developing ovarian cancer should consider bilateral salpingo-oophorectomy (removal of both fallopian tubes and ovaries) or bilateral salpingectomy (removal of the fallopian tubes, but keeping the ovaries in place so as to avoid surgical menopause). Those at average risk for developing ovarian cancer and who are undergoing pelvic surgeries for benign conditions (hysterectomy, tubal ligation, cysts, endometriosis) should consider having their tubes removed at the same time (a procedure known as opportunistic salpingectomy).

“Opportunistic salpingectomy is not targeted toward specific patients. It is not meant for high-risk patients,” said OCRA’s Scientific Advisory Committee member Dr. Celeste Leigh Pearce at University of Michigan, who co-authored a recent study on the subject. “We are targeting the 80% of high-grade serous cancers that arise in people with no genetically increased risk for ovarian cancer and trying to reduce the incidence of ovarian cancer overall by providing this safe and seemingly effective procedure at the time of hysterectomy or instead of tubal ligation.”

The new, aggressive strategy replaces decades of a focus on symptom awareness and early detection, after a rigorous clinical trial in the United Kingdom that followed more than 200,000 women for more than 20 years revealed sobering and deeply disappointing news: that current screening methods do not impact mortality in average-risk women. Put more simply, the trial showed screening and symptom awareness will not save lives.

“This is incredibly hard information to accept and runs contrary to almost all messaging related to ovarian cancer awareness to date. However, to ignore learnings gained from current research would be detrimental to the wellbeing of women and the future of ovarian cancer research,” said Moran. “We have to focus our limited resources on what we know actually works.”

Learn more about the campaign and how to receive free, at-home genetic testing.

 Dee

Every Day is a Blessing!

Guest Post : What is Pelvic Floor?

I am pleased to share this article about Pelvic Floor by Theresa Wilk Feeley, PT, DPT, PRPC, NCMP, RYT, Pelvic Health & Wellness Center Director at Atlantic Pelvic and and Wellness Center / Physical Therapy.  It compliments my post on Have You Considered Pelvic Floor Therapy. 

 

Theresa Wilk Feeley

 The pelvic floor is a group of muscles that span the base of the pelvis, with the hip girdle at either side,

the pubic bone in the front and the tailbone in the back. These muscles play a critical role in bowel,

bladder and sexual function. The deeper layer works to stabilize the hip girdle and also helps to support

the organs that sit in the pelvis (bladder, rectum, uterus). They work especially hard during pregnancy

when they need to support the growing uterus while also stabilizing the pelvis.

 

The deep layer contracts and relaxes rhythmically with your breathing. As you breath in, air fills the lungs and the guts descend creating a gentle stretch to the pelvic floor muscles. As you exhale, the muscles naturally contract to lift back up and help to push the air out. When these muscles don’t work with your breathing, you might have symptoms of stress incontinence with forced exhalation (sneezing, coughing, laughing). This rhythmic up and down motion also creates a sump pump effect for the gastrointestinal system to aide with digestion and lymphatic drainage.

 

There is also a superficial layer of muscles that work for sphincter control to close the urethral, vaginal and anal openings. Both this layer and the deeper layer need a balance of strength and flexibility. They need to contract to lift up for support, and to close the opening to hold things in (urine, gas, stool). They also need to relax to allow for your bowel and bladder to empty. In a female pelvis, the relaxation is also important to allow for tampon use, gynecological exams and intercourse. There is more awareness around weakness in the pelvic floor muscles in relation to incontinence but tightness is also extremely common. Short and tight muscles lead to bowel, bladder and sexual dysfunction, as well as pain in the pubic bone, tailbone, hips and lower back.

 

Looking for your pelvic floor muscles? In sitting, use your hand to find your tailbone and then moving a little further down and towards one side. Next, contract your pelvic floor muscles by creating the motion of stopping the flow or urine or trying to hold in gas. You should feel a small movement under your fingers as these muscles activate. You can do the reverse motion by gentle pushing down like you would to have a bowel movement. A healthy pelvic floor should be able to do both motions!

There are many reasons why Kegels aren’t helping your pelvic pain or dysfunction.  And the biggest one is that you don’t need to be doing them.

But if you do have weakness in your pelvic floor that is causing dysfunction, doing Kegels correctly will strengthen these muscles.  Some of the biggest reasons they don’t work is that they are done incorrectly, not frequently or long enough or they are only performed lying down. If you have pelvic floor dysfunction that isn’t responding to Kegels - see a pelvic floor practitioner!!! They can assess your quality of contraction, dose repetitions in what positions or what movements- or discover that you don’t need to do them and get you the right treatment and exercise program!

 

Dee

Every Day is a Blessing! 

Have You Considered Pelvic Floor Therapy?

In 2018, the #gyncsm community chatted about Pelvic Health After a Gyn Cancer Diagnosis. We discussed how treatments for gynecologic cancers affect pelvic health. We also talked about pelvic floor physical therapy and how it can help alleviate many of the pelvic issues including pain and dysfunction such as urine leakage. 

"Pelvic heath involves the entire area of the bony pelvis, lower abdomen, genitals, reproductive organs, muscles, bowel/bladder/sexual function, nerves...and more." "GYN survivors often have bladder/bowel issues after radiotherapy & surgical treatment." (#gyncsm chat 12/12/18 transcript) 

When the muscles in the pelvic floor are weak or don't function properly then pelvic dysfunction may happen. In addition to surgery, radiation such as brachytherapy ( internal radiation used to treat cervical, endometrial and other cancers ) can also effect the pelvic floor muscles as well as issues due to aging, being overweight, injury and pregnancy.

Pelvic floor therapy is a specialized therapy for those with pelvic floor dysfunction. Exercises can help strengthen muscles, increase range of motion and help restore the function and eventually get you back to a normal routine. 

The Mayo Clinic , when discussing physical therapy states:

"Stretching exercises, massage and other relaxation techniques may improve your chronic pelvic pain. A physical therapist can assist you with these therapies and help you develop coping strategies for the pain. Sometimes physical therapists target specific points of pain using a medical instrument called transcutaneous electrical nerve stimulation (TENS). TENS delivers electrical impulses to nearby nerve pathways. Physical therapists may also use a psychology technique called biofeedback, which helps you identify areas of tight muscles so that you can learn to relax those areas."

When I saw my advanced practice nurse last year I discussed some issues I was having. She thought it was a good idea to try physical therapy and gave me info on a physical therapists in North Jersey. 

When I got home I remembered a zoom workshop I watched during Covid on Menopause and Pelvic Health given by the same physical therapy group I had used when I had issues with my knee. So I reached out. 

In December, I started the pelvic floor therapy with Theresa Feeley, DPT from Atlantic Physical Therapy. I had thought I had been doing the Keegal exercise correctly but I had not. The physical therapist went over the correct way to do it as well as  breathing techniques while laying down and standing. She also asked me to keep a diary of what I ate and what I was doing when issues occurred. I found that I would use the restroom before I left the house even if I might have gone 15 minutes before. It didn't matter if I was going to be out for a few hours or a quick run to the post office I would go. In effect I had programmed myself to go and of course my bladder worked accordingly. So I was "going" more that I really needed to.  I had to consciously tell myself that in most cases I did not need that extra trip to the rest room. 

Using the diary I found that I had more issues when I had caffeinated beverages. So I have cut back on caffeinated tea, soda and coffees.

Between visits I perform the exercises and follow the breathing techniques especially when bending over during yoga and Jazzercise.  Here I am, a few months later, and I have seen a significant improvement.  

 I urge other women who have issues with leaking etc to speak to their health care provider and ask for a referral for pelvic floor therapy. I'm happy I did!

 

Dee

Every Day is a Blessing. 

Hello 2023!

As I begin 2023, I have hope for the future- for my health, my family and my advocacy. 

As many of you know, I begin each year with a few aspirations.

I have a bucket list that includes visiting all 50 states. I have 16 to go but the one that has been on my aspiration list since 2015 is Maine. It is the  only state I have not visited east of the Mississippi. I would like to visit the Wyeth museum, Acadia national park and of course some light houses. 

I aspire to continue to exercise - Jazzercise, yoga and this year bike riding. My friend gave me one of her extra bikes last fall. I've only ridden three times since then but look forward to getting out and riding around my town when the weather is nice this year. 

I aspire to do more art work. I'll continue working in watercolors and I'll add Barn Quilts. I've been following a group of Barn Quilters on Facebook and just love what they are creating.  I made small wood quilt ornaments for my friends for Christmas this year

 

 and would like to try larger 1' x1' or maybe even larger 3' x3' paintings.

When it comes to my advocacy work I already am registered for the SGO meeting this spring. Let me know if you are attending. Big news is that an abstract Annie Ellis, ovarian cancer survivor and advocate, and I submitted has been accepted for presentation. This is really exciting! I also was nominated and submitted my application for a task force position and will let you know if I am chosen. 

There may be some advocacy activities that I will cut back on as I spend more time with my grandsons and kids but you will continue to find me chatting along with Christina Lizaso as we take the #gyncsm ( Gyn Cancer Social Media) community on Twitter to every other month chats at 8pm ET. See you on January 11 when we chat about "Survivorship".  Or check out what we had done in the past on our blog- http://gyncsm.blogspot.com/

Wishing you all good health , love and friendship in the year ahead.

Dee

Every Day is a Blessing!

 

 

 

  

15 Years !

 

It is hard for me to believe that here I am in 2022 writing a post celebrating 15 years as a blogger. I know this year I posted less than one quarter of what I posted in 2008, my first full year of blogging.  But I did post from two oncology meetings,  SGO, which I attended in person ,and ASCO which I attended virtually due to a case of vertigo. In other posts I shared research news, FDA drug approvals, a book review and two posts by guests. 

As I looked back on what I wrote about this year, I realized I completely forgot to share two endeavors that were very exciting for me.  

I was a co-author with other amazing advocates of an article in JCO Oncology Practice.   

The Rise of the Expert Patient in Cancer: From Backseat Passenger to Co-navigator https://ascopubs.org/doi/full/10.1200/OP.21.00763 

Please give it a read when you get a chance and see the expanded role advocates play in their care as well as in cancer policy and research.

Along with #gyncsm co-founder, Christina Lizaso,  researchers from Duke University and SMART Patients we had an article published in Gynecologic Oncology Reports. 

 

Understanding the needs and perspectives of ovarian cancer patients 

when considering PARP inhibitor maintenance therapy: Findings from two online community events

https://doi.org/10.1016/j.gore.2022.101050

In this article we found women with ovarian cancer in online communities have educational needs regarding PARP inhibitors and they would likely benefit from educational tools.

I'll catch up with you in January for my aspirations for 2023.

Dee

Every Day is a blessing!

New FDA Approved Drug for Ovarian Cancer Recurrence - Impact on Patients

On November 14, 2022 the FDA granted accelerated approval of mirvetuximab soravtansine-gynx (Elahere, ImmunoGen, Inc.) and antibody drug conjugate. (https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-mirvetuximab-soravtansine-gynx-fra-positive-platinum-resistant) . Women who have received one to three prior treatments and have folate receptor alpha (FRα) positive, platinum-resistant epithelial ovarian, fallopian tube, or primary peritoneal cancer can receive the drug. The FDA also approved the companion assay device (VENTANA FOLR1 (FOLR-2.1) RxDx Assay ) for determining folate receptor alpha (FRα). The device is made by Ventana Medical Systems, Inc.

The approval was based on the results of the SORAYA Study NCT04296890), a single-arm trial of 106 women who had up to three other treatments and also received bevacizumab. Patients who had ocular, corneal, grade 1 neuropathy or lung infection issues were excluded. The Overall Response Rate (ORR) was 31.7% and median Duration of  Response (DOR) was 6.9 months. 

Women who are given the drug will receive a dose of 6 mg/kg adjusted ideal body weight every 3 weeks by IV. I wondered what adjusted ideal body weight was, so  I found this formula for calculating it. Adjusted body weight(ABW) = Ideal Body Weight(IBW)  + 0.25 * (ABW - IBW)                         Source: (https://pubmed.ncbi.nlm.nih.gov/22836946/)

Some side effects women in the study experienced included vision impairment, fatigue, nausea, abdominal pain, peripheral neuropathy, diarrhea, decreased albumin, constipation, dry eye, decreased magnesium, etc. There is a warning for ocular toxicity. You may learn more at https://ascopost.com/issues/december-10-2022/fda-grants-accelerated-approval-to-mirvetuximab-soravtansine-gynx-for-fr-positive-platinum-resistant-epithelial-ovarian-fallopian-tube-or-peritoneal-cancer/ .

 I often wondered how fast drug approval translates into actual use in the clinic. It has been one month since the approval took place. The following is anecdotal information but I thought it was interesting enough to share. In that one month's time,  I have offered peer support to three women dealing with recurrent ovarian cancer. Two of those women brought up to me that their oncologists told them about the new drug "with the very long name". It seems like no one called it , Elahere. One has been already tested to see if she was folate receptor alpha (FRα) positive. One was told about it but will continue with her current treatment which is going well for her. But she was happy to have another option  for the future. One did not mention the new drug during our conversation. 

In the ASCO Post Article noted above Ursula A. Matulonis, MD, Chief of the Division of Gynecologic Oncology and the Brock-Wilson Family Chair at Dana-Farber Cancer Institute and co-leader of the SORAYA study stated “There have been no approved therapies for platinum resistant ovarian cancer since 2014, so [this] action by the FDA is a very significant milestone.”  I agree and I am happy to see how quickly oncologists are sharing the information about the drug with the patients. 

 

Dee

Every Day is a Blessing!