About Me

My photo
My journey as a writer began as a child. I wrote poems and short stories which were my way of dealing with various life changing events. I am a member of Rave Reviews Book Club. Follow me on Twitter @KIngallsAuthor www.facebook.com/KarenIngalls, and you can find my books at www.amazon.com. My first book is Outshine: An Ovarian Cancer Memoir which received two awards. All proceeds are donated to gynecologic cancer research. My second book is a novel Novy's Son, about one man's attempt to find love and acceptance from his father. This is an all too common problem in our society. My third book, Davida: Model and Mistress of Augustus Saint-Gaudens is about the love affair between this great American sculptor and his model. ALL ORIGINAL CONTENT COPYRIGHT 2011 THROUGH 2017.

Sunday, June 18, 2017

ZEJULA, NEW DRUG FOR OVARIAN CANCER



Zejula was approved on March 28, 2017 by the FDA for ovarian cancer patients who have had at least one recurrence and are platinum resistant. Zejula is a PARP inhibitor, which means Poly(ADP-ribose) polymerase (PARP) inhibitors target DNA repair and are specifically active in cells that have impaired repair of DNA by the homologous recombination (HR) pathway.

One of the advantages of this particular drug is that it does not require prior genetic testing. A woman could benefit from this drug whether they have the BRCA mutated gene or not. With other PARP inhibitors genetic testing is required, and getting the results can be lengthy. With cancer patients time can be everything.

It was an honor to be invited to the Patient Leadership Council meeting in June of this year in Boston, MA. The meeting was initiated by the Tesaro Pharmaceutical Company, which hired the Snow Companies to arrange and lead the meeting. Invitations were sent out to about ten women survivors/advocates or caregivers, but unfortunately some of them were not able to attend. There were four of us survivors, but we were full of information and enthusiasm to contribute as best we could. It was in January 2017 that I received the invitation not knowing that I would be on the drug in June of this year. Serendipity? God at work? Yes to both.

Tesaro’s mission is to be more available to the social, economic, and medical needs of the ovarian cancer woman. Therefore, the purpose of this council is to help them achieve those goals. I will not be able to list all the things we talked about, but here are a few.

1.We discussed the need for Tesaro to be visible as a company that truly does care about the patient and be available to us. The general public has the image that pharmaceutical companies CEO’s sit in their skyscraper offices with no regard as to how the cost of producing drugs is passed on to the patient. Too many people are unable to pay for their prescriptions, or the insurance companies will not cover them. If Tesaro can change that image by reaching out and helping the patient that would go a long ways in improving how the public sees their company.

2.They wanted to hear from us advocates what programs we do, the successes, our use or not of social media, and how we reach out to the communities. We shared about our own journeys and what things, groups, brochures, etc. did and did not help; what resources did we seek out; how was communication with our physicians and nurses; what brochures, books, videos or articles were helpful? We spoke about various national and local organizations and how they have helped.

3. We also talked about the need to reach out to those in remote areas where there are not any oncologists nor gynecologic oncologists within their areas.

4. The communication that occurs between a physician and a patient is a critical part of the treatment of ovarian cancer. It was interesting statistics how physicians perceived that they explained very well any treatment or medication. Yet, only a third of the patients agreed. It was strongly suggested that the woman needs to go to her appointment with a list of questions and seek answers that are clearly understood. This is particularly important during the early stages of treatment when emotions can interfere with communication.

Here is a graph that shows the effectiveness of Zejula from the clinical trials:

                                       
                                            http://www.tesarobio.com/en

I came away from the meeting inspired to do more. Yet, I need your help. I cannot do it alone. It is so important for me to hear from you, and if possible, to offer your help in some way. There are too many of us women who live in fear, feel alone, and are dealing with insurance companies, seeking financial resources, need of caregivers, and support from family and friends.



Therefore, I now call upon each of you to share your suggestions, thoughts, concerns, questions, and comments about your experience as an ovarian cancer survivor. What are your unmet needs? How well does your physician communicate with you about tests, medications, treatments, or surgeries? Is their enough information available to you about resources in your area?

Your input will be valuable. You are important and your voice needs to be heard. Please write to me at kareningalls1941@gmail.com and give me your feedback. I will pass on any information anonymously. I will do my best to answer your questions and meet your needs. I will continue to communicate with you via my blog at www.outshineovariancancer.blogspot.com or the various ovarian cancer sites on Facebook.

                                  Thank you for reading this and I hope to hear from you.


Saturday, June 3, 2017

CANCER, LAUGHTER, HEALING

This is an excerpt from a blog by Sylvia Swanson of the Vero Beach "Friends After Diagnosis" support group. Like Sylvia, I have always tried to use humor when facing various challenges in my life, including cancer.
(Please check out my special birthday announcement at the end)

                                           
 


Rx FOR ANY DAY – HUMOR 
                                                                                                      Whether life feels heavy or easy, a hearty laugh makes whatever is happening feel better.  At our home a serotonin boost is welcome any time of day, any day of the week.  Life certainly provides a plethora of opportunities to laugh at ourselves, turning embarrassing moments into lighthearted revelry, and sometimes memorable stories that come out at family reunions (I try to avoid the latter but am not always successful).  Here are a few stories to lighten your day.


       Let’s see – should I start with my mad dash into the men’s restroom?  In my own defense I was desperate and grabbed the first door in the restaurant hallway.   Once I realized my mistake, I quickly exited with gratitude that no one was in the room.  However, my face turned three shades of red just thinking about the possibilities.  

     Then there was the time I tried a new shopping center while we were traveling and noisily walked right into a large glass entrance panel wondering why it didn’t open like the panels on either side.  When I was done laughing at how silly I must have looked, especially to those familiar with the shopping center, I picked myself up and tried to look as though nothing had happened (I haven’t mastered the it’s not me look yet but I’m trying) while wondering why there usually is an audience when these things occur.  


     This is a laugh on Curt with his permission.  During a trip Curt and I were using an underground train station which does present a number of challenges.  The train itself offered a combination of seats and poles for light and heavy traffic.  The train drivers never start or stop smoothly so maintaining one’s balance through a series of jerks often creates the unexpected.  As we boarded we were delighted to see two empty seats right across from each other. 

     I sat down quickly but Curt had only begun his seating decent when the train started with a harder than usual jerk.  He completely lost his balance and his arms shot up trying to connect with one of the balance poles.  He missed the poles, but his arms kept flailing around looking like propellers seeking to go air born endangering the people calmly seated on either side of him.  His derriere was headed into the lap of the woman seated next to him who was looking every bit as surprised as Curt.  She did what anyone would do when another person is about to sit on top of them.  With open hands she shoved his derriere up and over the seat arm rest so he finally landed in the empty seat which was his original intent.  Slightly red in the face, he said his apologies and was relieved to see she was smiling.  He didn’t need to look at me to know I was laughing!  
  

     This next experience occurred when I was using the public bus transportation system.  My bus pulled up to a stopping area where two elderly people stood with their backs to the bus because it was windy.  The man wasn’t sure if this was the right bus to take so he stepped on board and asked the driver if his destination was on this route.  When told yes he immediately bought two tickets, spotted an empty seat halfway down the center isle, and was about to sit down when he realized his wife wasn’t with him.   She was standing outside completely oblivious to the fact that her husband was already on the bus and thought she was right in back of him.  The bus doors were closing when the husband said, “Oh wait please, my wife is still outside!”  As he walked back down the isle to the door he said jokingly, “I could get rid of her, couldn’t  I.”  He hesitated as though thinking about the possibility, and then smiled and said from the bus door, “Dearie, we’re leaving.  Get on the bus!”  The whole bus laughed and applauded as she got on and little pockets of laughter continued the rest of the way to the shopping area where I left the scene.  The two women in back of me couldn’t stop laughing and kept repeating what he had said which made them laugh again.  One woman declared she thought he was a handsome man and, if the bus had driven off without his wife, she would have gone to sit with him.

    If while reading this you have experienced something between a guffaw and a chuckle, then you have done some destressing.  How about sharing one of your humorous stories in the comment area to help keep the laughter going?  Let’s enhance our health with laughter therapy to boost our immune system and lighten our day.
Until next time - Sylvia

My thanks to Sylvia for sharing this humorous and helpful blog. We all need to put some humor into our daily lives whether we have cancer or not. 



I am celebrating my 9th year of surviving ovarian cancer with two special offers. First, on June 5 & 6 my ebook version of Outshine: An Ovarian Cancer Memoir will be FREE at goo.gl/K9x33h. Even if you have the paperback, getting the free ebook helps spread the word to others.

OR you may purchase my signed paperback for just $3.00 to cover cost of shipping by sending the money to PayPal and emailing me your address at kareningalls1941@gmail.com. All proceeds go to gynecologic cancer research.


                                THANK YOU FOR YOUR SUPPORT!