Monday, December 11, 2017

Chemo Induced Peripheral Neuropathy - Participating in a Clinical Trial

   
Recently my friend, Lynn, shared with me what she had learned during the Foundation for Women's Cancer Ovarian Cancer Survivors Course held in October at the Summit Medical Group. One session on chemotherapy induce peripheral neuropathy was presented by Timothy Marshall, PhD a Professor of Physical Therapy at Kean University ( Union, N.J.). Knowing I have experienced neuropathy she thought I might be interested in a clinical trial he was running and she sent me his contact information.  I contacted Dr Marshall in November to learn more about his trial Chemotherapy-Induced-Peripheral Neuropathy (CIPN), Gait and Fall Risk.

Chemotherapy induced peripheral neuropathy can be numbness, tingling, pins and needles and pain in the toes and fingers. I experience this in my toes and have mentioned it in a few entries in this blog. Dr. Marshall sent me the Informed Consent form for the trial and we set a date to be evaluated in December. 

Last week I went to the Kean University Campus to take part in the trial. This was a relatively easy trial - as trials come -  to participate in. I shared with Dr. Marshall the chemotherapy drugs I had received, their dosage and the number of cycles I had during my initial and recurrence chemotherapy treatments. He asked about the level of exercise I currently take part in and measured my height and weight.

Then the actual evaluation started. The first test was to measure my hand grip strength.  I was asked to squeeze a handgrip dynanometer (3 times in each hand). 
Next after taking off my shoes and socks I was asked to sit on a table. and close and cover my eyes.  Dr. Marshall touched my feet and toes using a Jamar Microfilament - a very thin bendable wire, to assess sensation in my feet.   I was told to respond when I could feel the filament touch various parts of my foot. 

After putting my shoes and socks back on, a BTS G-Walk system was fitted to my waist. The BTS G-Walk system is a wireless tri- axial accelerometer. An accelerometer is an electromechanical device that measures acceleration forces. The system included EMGS placed on both my calves front and back. Electromyography (EMG) is a way to assess how well the muscles are working while I walk. I walked from one side of the room to the other a few times, all the time the Walk system was gathering data.  Lastly, I was asked to perform a ‘Timed-up and-Go' test, in which I had to stand up from a chair, walk about 9 feet, turn around and walk back to the chair and sit back down; this assessed fall risk. 

And in one hour the trial tests were complete.

I enjoyed talking to Dr. Marshall about his research including this study published in the Journal of Cancer Research and Practice Chemotherapy-Induced-Peripheral Neuropathy (CIPN), Gait and Fall Risk in older adults following cancer treatment. 



This trial is currently recruiting so if you are a physician and would like to refer a patient who is experiencing the impact of CIPN or a cancer patient/ survivor who continues to experience CIPN years after treatment or is experiencing CIPN while undergoing treatment, feel free to contact Dr. Marshall at marshati@kean.edu or call 908-737-6177. 

Thank you Dr. Marshall for doing research crucial to improving the survivorship of cancer patients. 

Dee
Every Day is a Blessing! 

Friday, December 1, 2017

Where does Ovarian Cancer originate?

In the past it was thought that fallopian tube cancers were precursors to ovarian cancer. In October, in the Journal Nature Communications research supporting that hypothesis was presented in the article, High Grade serous ovarian carcinomas originate in the fallopian tubes.  

Researchers used whole exome sequencing (a technique for sequencing all of the protein-coding genes in a genome) and  copy number analyses ( process to analyze DNA chromosomes number variations) to study fallopian tube lesions, ovarian cancers and metastases from women with high grade serous ovarian cancer. The fallopian tube lesions were examined for p53 signatures, serous tubal intraepithelial carcinomas(STICS) and fallopian tube carincinomas. TP53, BRCA1, BRCA2 oor PTEN specific alterations found in the ovarian cancer tumors were present in the serous intraepithelial carcinomas (STICS). Analysis revealed that the p53signatures and the STICS are precursors of ovarian carcinoma.

Using a mathematical model researchers determined that it took an average of 6.5 years for the earliest development of a fallopian tube lesion to become ovarian cancer. They also found that metastasis followed rapidly after the ovarian cancer carcinoma was initiated on average 2 years. Though the number of women whose samples were tested in this study was small(5), the results suggest that ovarian cancer is originates in the fallopian tubes.


To read the complete study please visit https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5653668/

Additional articles on this research are available at:

NCI
https://www.cancer.gov/news-events/cancer-currents-blog/2017/ovarian-cancer-fallopian-tube-origins
Science Daily
https://www.sciencedaily.com/releases/2017/10/171023094404.htm
Futurity
http://www.futurity.org/ovarian-cancer-fallopian-tubes-1583362-2/

This research may lead to improved screening tests. 


Dee

Every Day is a Blessing!
 

Sunday, November 19, 2017

A Hobby Begun During Treatment

When I was in treatment in 2005 a friend of my son's gave me an acrylic painting kit.  That kit started the hobby I have enjoyed the past few years. I hope you enjoy these dog paintings as much as I enjoyed creating them.

























Dee
Every Day is a Blessing!

Monday, November 6, 2017

A Day on the Hill

Along with other gynecologic patient advocates, I had the privilege of joining gynecologic oncologists from the Society of Gynecologic Oncologists in Washington, DC on Friday for their Capital Visit Day.

Thursday evening we had a training session during dinner. This training allowed us to learn the best way to ask our Senators and Congressmen/women to support funding for gynecologic cancer research.

On Friday, I headed to Capital Hill with Dr Ginger Gardner, a gynecologic oncologist from Memorial Sloan Kettering Cancer Center. We visited with the legislative assistants for Senators Menendez (NJ), Booker (NJ), Schumer (NY) and Gillibrand (NY) and Representatives Watson Coleman (NJ-12), Maloney (NY-12) and Frelinghuysen(NJ-11). 


As we introduced ourselves to each assistant I was able to share a bit about my ovarian cancer diagnosis and my participation in clinical trials. Then we moved on to our "asks".

Increased funding for gynecologic cancer clinical trials at the NCI/NIH 
In the past few years there has been a decrease in the number of NIH clinical trials available to women with gynecologic cancers.In 2012 there were 56 trials for gynecologic cancers while in 2016 there were 18 trials.
Here is the information sheet we left during our visits.


Preserve the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense
The Senate version of the National Defense Authorization Act of 2018 contains 4 sections (733, 891, 892, 893) which would basically eliminate the CDMRP. The CDMRP includes the Ovarian Cancer Research Program (OCRP). The House version of the bill does not include those sections.

There are currently 850,000 active duty female service members, wives and adult daughters. Approximately 11,800 will be diagnosed with ovarian cancer in their lifetimes at a cost of $971 million. 
The OCRP also includes the Ovarian Cancer Research Academy which  helps to develop young investigators to become lifelong ovarian cancer researchers.


We left this brochure, 

 (http://cdmrp.army.mil/ocrp/pbks/ocrppbk2017.pdf ) with each assistant. I recommend you read through it to see the groundbreaking basic research being done at the the OCRP.

I urge you to reach out to your Senators and the Congressman/woman from your district and ask them to support these crucial research programs. Thank you!


Dee
Every Day is a Blessing! 








Wednesday, October 25, 2017

I Took a Break

September,  Ovarian Cancer Awareness month is a very emotionally and physically draining month for me. I spend a good deal of time thinking about and talking about ovarian cancer - symptoms, treatments, statistics. I posted to this blog every day as well as shared information from other organizations  in daily promotions on Facebook and Twitter. I attended fundraising walks and other events to raise funds for ovarian cancer research.

In the middle of the month I had an appointment with my gyn onc for my 6 month check-up. I also had a CT scan since my CA-125 has been creeping. I dealt with so many emotions including the fear I might have recurred. The exam and CT report were good so I am set for 6 more months.

But during this month of ovarian cancer, I remembered. I remembered women who became my friends over the past 12 years who have died because of this disease - like Janice, Carol, Jane, Sherry and the list goes on. It made me angry and sad.

I know that when that happens I need to take a break. And that is what I did. I stepped away and concentrated on family ( visits with kids and grandsons)  and other non-cancer things such as beginning work on two paintings. I recharged my batteries to begin my advocacy work again.

And then last week,  I got this in the mail !














As a Patient Advocate Member of ASCO I was chosen as a 2016 Advocacy Champion - Speaker's Club for legislative advocacy work ( e-mails , tweets and blog posts)  that I did for ASCO on cancer research and funding issues in 2016. I don't do what I do to be recognized but it felt good to be appreciated.

If you are a patient advocate you should consider joining ASCO. You will be able to network with the top oncologists in the world and stay on top of the latest research in precision medicine.  Check out this membership page for more information https://www.asco.org/membership

I'll be posting more ovarian cancer research news in a few days.

Dee
Every Day is a Blessing!



Friday, September 29, 2017

Day 29 A month of Teal : Your Verse - My Verse

"What will your verse be? 
Each of us has something to share. A voice, a passion, a perspective. The potential to add a stanza to the world's story.   ..."

Take a few minutes to watch this ad. Don't skip it - listen to the words and look at the images.

Apple - iPad Air - TV Ad - Your Verse from EPC Group.net on Vimeo.

Apple ran this series of advertisements for the Apple iPad Air in 2014 . I thought I might want to write a blog post based on my verse so I jotted this idea down on my blog topics sheet.

As we come to the end of Ovarian Cancer Awareness month I thought this would be the perfect time to talk about my verse.

I have always been interested in science. When I graduated high school the quote going with my yearbook photo was - To the Moon and Beyond. I thought I would become and astronaut.  I never did become one, I became a chemical engineer and teacher, but the science I learned helped me many times on my life's journey.

When I was diagnosed I didn't know a lot about ovarian cancer and I hadn't met anyone with ovarian cancer. I reached out to Cancer Hope Network and talked to a support volunteer who was a 5 year ovarian cancer survivor. Then my gynecologic oncologist recommended I reach out to the Kaleidoscope of Hope Ovarian Cancer Foundation and the LIVESTRONG Foundation. Both organizations gave me the tools to learn more, empowered me to share my story, allowed me to network with other women diagnosed with the disease and gave me hope.

In the time since my initial diagnosis I have spent a great deal of time learning about ovarian cancer from genetics to pathology to histology to immunotherapy to targeted therapies. I have been given amazing opportunities to interact with oncologists, genetic counselors, researchers and other women advocates. I have shared my story with small groups of women and with audiences filled with health care providers and cancer researchers. 

I am blessed to have been given the opportunity to survive ovarian cancer and my verse must include being the voice of those women whose lives were taken too soon by a disease where an effective screening test has still not been developed.

So what is the  stanza I have added to the world's story -

Hearing the word cancer,  
My knees are weak.
With family, faith and expert doctors 
I remain in this world.
Now I take what I love and 
share my "voice,  passion, and perspective
so all will know about this disease and 
those women whose life's journey include
ovarian cancer. 

What is your verse?


Dee
Every day is a Blessing!

Thursday, September 28, 2017