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!

 

 

 

Powell-Drescher Foundation - Ovarian Cancer Research, Advocacy and Education

A few weeks ago I had the pleasure of having a zoom call with Sachia Powell. Sachia is an ovarian cancer survivor, advocate and founder of the the Powell-Drescher Foundation www.powelldrescher.org. We discussed the foundation she founded with Dr Drescher and a number of advocacy and education ideas. Here are two opportunities coming up for advocates.

The Powell-Drescher Foundation is hosting a free Zoom presentation on November 20, 2022, to provide information about research advocacy.  During the Zoom presentation, ovarian cancer researcher Dr. Kristin Anderson will provide information about how to navigate a research conference, as well as details about the AACR’s Scientist-Survivor Program (SSP).  Ovarian cancer survivor/research advocate Annie Ellis will share her experience with the SSP as well as her insights as an experienced research advocate.   To apply to attend the presentation click here. 

 

Along with that education program the organization will provide details about their new program an opportunity for an advocate to attend the American Association for Cancer Research (AACR) Annual Conference in Orlando in April 2023.To learn more or apply click here. The deadline is December 31,2022. 

You can read more about the organization on their website:  www.powelldrescher.org or follow  them at  @powelldrescher on Instagram  and Facebook, and @powerovarian on Twitter. 

 

 

Dee

 

Every Day is a Blessing! 

 

Guest post By Molly Lindquist: Another Cancerversary, Another Reason to Celebrate!

I am so pleased to be able to share with my readers this guest post by friend and advocate Molly Lindquist (@LindquistPDX). I recently spoke to Molly and Samira about Manta Cares. It offers helpful information, planners and coaching for not only gynecologic cancer survivors but all cancer survivors and their caregivers.  

ANOTHER CANCERVERSARY ANOTHER REASON TO CELEBRATE!

Next week is my 11-year cancerversary, which brings a mixture of feelings. I’m incredibly grateful to see another year. My daughters were just 3 and 5 years old at the time of my diagnosis, and I was so scared that I wouldn’t see them grow up. 

Now that they are teenagers, and my main job is annoying the heck out of them, that thought shifts further to the back of my mind.

But along with the gratitude comes the eternal question that never seems to dim with time: why me? 

 

Clearly there’s no easy answer to that one. My cells decided through some combination of genetics and environment (and bad behavior!) to mutate and grow into cancerous tumors. There’s nothing I can do to change that. While 11 years have passed since the day I heard, “You have cancer,” that doesn’t change the fact that the little “cancer devil” is always on my shoulder when any ache or pain pops up. Is it back? Or is this just a normal part of getting older? Is my life about to be derailed again? Or do I just need to pop some ibuprofen and accept that sometimes I can tweak my back just by sleeping on it funny?

 

While I’m not in the “cancer is a gift” camp, I do believe that we have control of how we react and channel our personal experiences, crappy as they may sometimes be. The major silver lining of my cancer experience has been the people I have been fortunate to meet along my journey; people who are taking their challenges and using them as a force for change. Recently, one of my favorite pay-it-forward inspirations has been my friend Samira. 

Samira was diagnosed young like I was, and like me, her life plans were derailed. Samira is a bio-engineer and healthcare product designer by profession. Even with her strong science background, her cancer diagnosis dropped her into the terrifying land of the unknown -- she describes it as going for a long hike without a map. To take control of this process, and stay organized, she created a planner for herself – an old-fashioned, paper planner – the simple tool this techie bio-engineer couldn’t find anywhere to help her stay organized and better communicate with her care team. When other patients, nurses and doctors saw her planner, they asked if they could share it with people in their communities, because they were certain it would be very useful. So, what started as a simple tool to help navigate her own breast cancer journey has turned into a company, Manta Cares. 

 

I have been lucky enough to join Samira on this new, Manta Cares adventure, and couldn’t be more proud to use my own experience to help make the cancer journey just a little bit easier for patients and caregivers. The goal of Manta Cares is to create tools for cancer patients and caregivers that we (and our loved ones!) were missing.

 

We recently launched Cancer Coaching with Dr. Maeve Baechler, a physician, coach and most importantly, a cancer survivor herself (Maeve is also on my pay-it-forward inspiration list!). As anyone with cancer knows, that diagnosis makes you rethink your entire life - dreams, goals, professional path - you name it, cancer impacts it! So Maeve helps coach people through this huge life change. I wish I had had a coach like Maeve 11 years ago (and grateful I get to utilize her advice and guidance now!).

 

We are also launching a monthly free resource to the Manta Cares community. Our first free resource is a Chemotherapy Checklist for Caregivers, with information about what to think about before your loved one starts chemo. There is also a free Caregiver Guide with tips and strategies to facilitate better communication with your loved one during this incredibly stressful cancer journey.

 

And we’ve only just started! More resources and tools will be rolling out over the coming months, so we hope you’ll keep in touch with us and share with anyone in your life who might be dealing with cancer, either as a patient or caregiver.

 

So as I prepare for my 11 year Cancerversary, I do so with a full heart. I know that I can never repay the kindness that has been shown to me over the years by my family, friends and even strangers, but I will continue to pay it forward for others on this rocky road. It is the only way I can turn my two bad lemons into lemonade (and yes, I will continue to chuckle at that joke for as long as I’m around to overshare it with you!).

by Molly Lindquist

 

Dee

Every Day is a Blessing!

Advocates Making a Difference

This week three women showed us all how to be advocates. One woman had her article published in a medical journal and two others shared their stories during a Facebook Live presentation. It makes me so happy to see ovarian cancer advocates highlight their experience in ways not available when I was first diagnosed.

Christine "Cissy" White, an ovarian cancer survivor has participated in a number of #gyncsm chats and is an active ovarian cancer advocate on Twitter and other social media platforms. She was diagnosed in 2019 and wrote the Clinical Trial Treatment Train for the NEJM's Evidence Patient Platform. It was published on August 23, 2022.  https://evidence.nejm.org/doi/10.1056/EVIDpp2200198

The article is an honest look at what it is like participating in a clinical trial. Cissy took part in the ATHENA trial and a trial of REGN4018 alone or in combo with Cemiplimab. She faces decisions many women diagnosed with recurrent ovarian cancer face daily.  Those who conduct and design trials should read and consider experiences like hers when working with patients.

Ovarian cancer survivors and advocates, Kimberly D. Richardson and Kimberly Simmons Emory share their stories and experience with cancer in a Foundation for Women's Cancer Facebook/ Zoom discussion with gynecologic oncologist Dineo Khabele. Dr Khabele joined the #gyncsm community in 2021 to chat about Disparities in Gyn Cancer Diagnosis and Treatment.  Kimberly Richardson, a 10 year survivor,  joined the #gyncsm community in 2020 and shared how to Read a Scientific Poster. I met Kimberly Emory, a 16 year survivor, in 2017 during a Patient Leadership Council meeting in Dallas in 2017. 

You may watch  How to Be Your Best Self-Advocate at https://www.facebook.com/100064784164039/videos/1469632956884193. Take the time to listen to this discussion which includes symptom awareness, communication with your health care provider, genetic testing,  risk, etc.  What can we do raise awareness of ovarian cancer and offer support to women of color?

Thank you Cissy and the "Kim Squared " for everything you do to raise awareness and support women diagnosed with ovarian cancer. 

Dee 

Every Day is a Blessing!

Thinking about Rest

Life has gotten busy the past few weeks and I realized that I have not posted to this blog in way too long.

Another survivor, Christine "Cissy" White, shared a blog post she wrote on LinkedIn using a writing prompt from Laura Davis. I loved Cissy's post. I thought maybe that was just what I need, a prompt to spark my writing.I decided to use the same prompt Cissy used.

 

Rest is not always easy.

At the beginning of each year I look at what advocacy activities I have planned for the year ahead and decide what large projects I would continue with. I ask myself if the activity brings me joy.  I know I sound like Marie Kondo and her advice about getting rid of clutter. For me that process worked well until recently. I started receiving special requests to help with clinical trial design, be a part of an advisory board and  review grants. As a cancer research advocate in what is considered a rare cancer,  I felt compelled to be involved in these opportunities. If I said "No" I would miss out on sharing my story and raising the issues that are important for women with gynecologic cancers. Was I letting myself and those who lost their lives to ovarian cancer down by not participating?  

Since Covid many events, symposiums, presentations were held virtually.The fact that travel costs were non-existent took funding my trips out of the decision making process. This just made things harder since I could take part from home. I knew I couldn't say yes to everything or I would burn out. I needed to look after myself.

Beginning in 2022, I started blocking out weeks at a time for family and friends.  I learned to turn down opportunities. But I did more than that. I decided to look at these opportunities as not opportunities for myself but for others. Every time I turned down an opportunity, I recommended another advocate or survivor who could step into that role. It is important that we advocates support each other. Now I can really rest and know that other patient/survivor voices are being heard.

When I rest... I feel calmer. I have more energy to do the advocacy work I am passionate about and I have time for my family and hobbies. 

Sometimes when I rest, I sketch or paint.

 

Dee

Every Day is a Blessing!