Monday, May 24, 2021

Two Months of Activities and Looking Ahead

Well, where did the last two months go?  I am not sure.  But when I looked at the calendar and it said, May 24th, I thought I really should post to my blog . It has been way too long. 

I was involved in many personal activities as a member of my homeowners association board. It is not an easy process to open a 55+ community pool in NJ in the time of Covid but we are working on it. I also spent lots of time and a few vet visits taking care of my dog. She had a growth removed but is recovering nicely.

 


And on a personal level, I had my second Covid vaccine. HURRAH! And I also I dealt with an ear infection. Yes, adults can still get ear infections.

On the advocacy front, I was so happy to take part in the 40th Anniversary of Cancer Hope Network. They provide one-on-one support for cancer patients and caregivers. I trained as a support volunteer with them in 2007. When I was first diagnosed I spoke to a volunteer. She gave me hope that I could make it to five years. Since then I have had over 50 matches with women who were diagnosed with ovarian cancers or others considering clinical trials.

I also took part in the COSMO (The Collaboration for Outcomes using Social Media in Oncology) Conference. I was part of the The  Patient Engagement in Social Media:When the Doctor is No Longer the Expert panel. It was wonderful speaking about the #gyncsm  cancer community along Tamika Felder, Patricia Anderson, John Novack and Janet Freeman-Daily leaders of other online patient communities and social media leaders. I enjoyed two days interacting with and hearing from cancer Social Media experts like Drs Dizon, Lewis, Durma, Drake, Miller , Painter and others.

You can follow COSMO on Twitter at @COSMONC or the hashtag #COSMOnc. 

On May 12th the #gyncsm community spoke about  Recurrence Secondary Cancer and other Diseases. Check out the highlights on our blog at http://gyncsm.blogspot.com/2021/05/may-12-2021-risk-of-recurrence-second.html.

I am looking forward to  #ASCO21 and hope to highlight the great gyn cancer and disparity research being done. Join me and follow the #gyncsm and #ASCO21 hashtags.

 

Dee

Every Day is a Blessing!

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Wednesday, March 24, 2021

2021 SGO Virtual Meeting Sunday March 21, 2021

I am happy to share with you Tweets that cover the work presented during the last full day session of SGO was on Sunday, March 21, 2021.

One session, Time to Return to the Drawing Board, reported clinical trial results that did not meet their aims. Understanding where a drug or treatment may have failed to provide the results expected is as important as those trials that meet aims.

 Atezolizumab

Falretuzumab

 

Durvalumab and Trememlimumab

Additional sessions of interest.

Barriers to Quality of Care - Poster 

Uterine lavage and early detection

Post operative opiods use model 

Neuropathy and genetic variants 

Gross resection and OS / NACT

Vulvar Cancer Studies 

Endometrial cancer 

Cediranib and Olaparib NRG GY012

IUD

 Enzalutamide


Here are some articles from various sources that go more into depth about studies discussed at the meeting. 

Medscape article on hormone IUD and endometrial cancer https://www.medpagetoday.com/meetingcoverage/sgo/91740

Vulvar cancer patients with sentinel node micrometastases, radiation therapy (RT) to the groin after local excision led to extremely low rates of recurrence, a phase II trial suggested https://www.medpagetoday.com/meetingcoverage/sgo/86603 

ABV-500 small molecule in OC https://www.medpagetoday.com/meetingcoverage/sgo/91739

 

Thank you so Eisai for supporting patient advocates at the annual meeting . 

Thank you SGO leadership for making us feel welcome and for all the gyn oncs who answered our questions.  

Dee

Every Day is a Blessing!

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Tuesday, March 23, 2021

2021 SGO Virtual Annual Meeting Saturday March 20

Here are highlights from the Virtual #SGOmtg sessions I attended on Saturday March 20, 2021. 

The morning began with a wonderful get-together for Patient Advocates at a 9am session. I am so glad to see patient advocates play a role in so many aspects of the SGO organization.

 In real time, I shared information on Twitter( @womenofteal) about the sessions I attended using the #gyncsm and #SGOmtg hashtags

 Surgery:

MEDSCAPE shared this article on MIS and interval debulking surgery. https://www.medpagetoday.com/meetingcoverage/sgo/91738

Equity 

PAOLA-1 Olaparib plus Bev

Tumor infiltrating lymphocytes

Keynote 158 Cervical Cancer

 

 ENGOT-OV 16/ NOVA  niraparib

PARP Inhibitor duration of follow-up

Cervical Cancer Radiation study

Shared Decision Making Tool

Niraparib as Maintenance Therapy- Dr Matalunis https://ascopost.com/videos/sgo-2021-virtual-annual-meeting-on-womens-cancer/ursula-matulonis-on-ovarian-cancer-niraparib-as-maintenance-therapy/

Stop by tomorrow for my Sunday highlights.  

Dee

Every Day is a Blessing!
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Monday, March 22, 2021

2021 SGO Virtual Annual Meeting - Friday March 19th Highlights

I was happy to be able to attend the virtual SGO Annual Meeting. The meeting started on Friday, March 19 with sessions during the day and evenings over the weekend. The meeting continues with evening sessions through Thursday March 25th.  Interacting with presenters and others in the chat feature of the meeting platform was exceptionally good and helpful.

 In real time, I shared information on Twitter( @womenofteal) about the sessions I attended using the #gyncsm and #SGOmtg hashtags. Below are some tweets of Fridays sessions I found most interesting.

Friday

Nutritional Supplements 

Patient physician conversations

 PARP  inhibitors 

 

ARIEL 4  Rucaparib vs chemo

KEYNOTE 146  Pembrolizumab - Lenvatinib

Additional information may be found in the ASCO Post Article https://ascopost.com/news/march-2021/pembrolizumablenvatinib-may-improve-survival-in-advanced-endometrial-cancer/?utm_source=TAP%2DEN%2D032021&utm_medium=email&utm_term=51c356fa5771cf054b74a66e437b4089

Secondary Cytoreductive Surgery

Endometrial Cancer

Equity in Gyn Cancers

ACA and insurance


Here was a fun activity on the meeting platform - puzzle time! How I wish we were actually in Seattle

 

 

 

Dee

Every Day is a Blessing!

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Monday, February 22, 2021

The Wait is Over

My last post talked about waiting for the vaccine. I was waiting, maybe not so patiently but waiting just the same, when last Monday I got a text message on my phone saying there were Covid vaccine appointments available through the RWJBH system.  I clicked on the link to begin the process. I read a document on the Pfizer vaccine, listened to a video about the vaccine and answered a few health questions. It brought me to a site to choose an appointment . Bingo! I was able to get one for Thursday ,February 18th. I was so excited. But the weather did not cooperate. A snow storm was on its way. On Wednesday evening, I received a text saying they were postponing all appointments at the site until Saturday at the same time. So I waited just a little longer.

Earlier, I had reached out to the pharmacist at my cancer center about taking the vaccine. I had a anaphylactic reaction to carboplatin and was concerned. He assured me that there was no PEG in the carboplatin and since I never had a serious reaction to taxol (which does contain a type of PEG) I should feel comfortable taking the vaccine. That certainly put my mind at ease. 

We, my husband also got an appointment for 10 minutes after mine, drove to the center and after a temperature check walked inside.  The wait was about an hour standing 6 feet apart with our masks on. The Army National Guard was helping with check-in and registration, which went very smoothly. Then it was time for the vaccine.  We were brought to one of 25 smaller cubicles where we answered a few more questions and got the shot. It didn't hurt at all getting the vaccine. 

Even after telling the health worker my reaction was not to a product with PEG in it, she still thought it best that I wait 30 minutes. She asked me to set the timer on my phone,  gave me a red wristband and directed me to a special area to wait. While there, other RWJBH workers helped us make and confirm an appointment for the second vaccine. 


After being home a few hours my arm did start to hurt so I took a Tylenol before bed. Yesterday , it hurt more and it was not easy raising my left arm. But I didn't feel tired , or have a fever or any other side effect. 

Today I am 100% back to normal and waiting for number two. 

I hope more people are able to receive the vaccine quickly throughout the country. 

Dee

Every Day is a Blessing!


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Saturday, January 16, 2021

It's All About Waiting

My journey with cancer has included a lot of waiting. 

 

I waited to have CT scans. I waited for CT results. I waited for CA-125 results. Twice, I waited to have chemotherapy when my platelets were low. I waited to have my port flushed. I waited to see my gyn onc. I waited for my genetic test results.You would think by now I should be an expert at waiting. 

 

I am not. 

 

Ever since they mentioned a vaccine for COVID-19 was being developed I have been waiting. I learned as much as I could about mRNA vaccines.

 

In December, I filled out a screening questionnaire to be in a clinical trial for a COVID vaccine. I've participated in clinical trials before, so I felt comfortable going that route. I waited six days and received an email saying that all the trial slots were filled. 

 

Back to waiting. 

 

When NJ opened a site to pre-register for the vaccine. I signed up within 24 hours of the site going live. But so did over 450,000 others based on the governor's Tweet. On January 14th, my state opened up vaccine eligibility for those over the age of 65, that would be me. Hurrah ! I was now eligible for an appointment for the vaccine. I had an anaphylactic response to a chemotherapy drug I was given. So, I wanted to go to a location capable of treating me if I had a reaction or one not far from a hospital. 

 

As disappointed as I was being unable to schedule a shot, I thought about what I had read on NJ.com.  NJ has been receiving 100,000 vaccines per week.

 

Today, I registered for an appointment to receive the vaccine through the health care system affiliated with my cancer center. No appointments available at this time but I am in the queue.  I am hopeful that by Spring I will get the vaccine.

 

In the meantime, I'll continue to wait, wear a mask, wash my hands and social distance.

 

Updated 2022  : I was able to get a vaccination in February 2021 , March 2021 and a booster in September 2021.

Dee

Every Day is a Blessing! Even if I am waiting. 



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Saturday, January 2, 2021

Uncharted Waters

When I look back at the Jan 2, 2020 blog post, I see how glad I was to be starting a new decade and beginning another year of cancer survivorship. In that post, I wrote about my aspirations for the year, which included practicing my watercolor painting and yoga, visiting Maine, going kayaking, building a better bond with my dog and stepping away from social media to meet with friends in person. 

And then the Covid-19 pandemic happened.

I think we could all agree that we just finished a year that took us into uncharted waters. We had to change how we did so many things due to the COVID 19 virus. We kept socially distanced, wore masks and didn't visit others in their homes. We searched for toilet paper, hand sanitizer and Clorox wipes, washed our hands for 20 seconds and refrained from shaking hands. We had almost everything from dog food to light bulbs to groceries delivered to our home. Being online was more than browsing Pinterest, Facebook or writing e-mails. We visited with family and friends via Zoom, and attended virtual conferences. 

All this meant some of my aspirations weren't going to even be able to be attempted. 

 I was home pretty much 24 hours a day, so to stay physically healthy I needed to remain active. It helped to have my dog Amber to walk outside a few times a day but I decided against going to agility class except for the last few classes of the year where we wore mask including when we were running our dog and stayed 6 feet apart . We attended one agility trial in February before the shutdown began. As for yoga, well that switched to online Zoom classes.There was no kayaking and my social media use went up instead of down and now I only spoke to friends on the phone or video chat.

After returning from a conference in Texas in January, I traveled no further than 50 miles from my home. During one two month period the furthest I drove from my home was 7 miles. Needless to say I never made it to Maine nor did we go on the family vacation we had planned the year before. 

Being home meant I did get a chance to do more art creations so I was able to fulfill that aspiration.  I even registered for a free weekly online course through the Princeton Art Museum, too.







As I start 2021, I will continue to wear a mask, stay 6 feet apart and wash my hands.  And I will patiently wait to receive the COVID Vaccine.

When this the pandemic is under control,  I aspire to make a trip to Maine and trips to see family in the US and abroad. In the mean time, I'll create more art, when weather permits I'll spend time outside with my dog trying to keep healthy and I will continue to advocate for cancer research with an additional focus on cancer treatment equity.

Dee

Every Day is a Blessing!

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