It has been a long time since I posted. First, I want say that I am an 11 year survivor having been diagnosed with Stage 3c ovarian cancer. I’ve had multiple recurrences and I am currently dealing with my seventh. I remember frantically looking for survival stories just to see how much time I had after my diagnosis. What I really want to report is that I took matters into my own hands and went to MDAnderson in Houston for a second opinion this time. I saw a touching story on World News Tonight about a woman who was first told to get her affairs in order when she was diagnosed with anal sarcoma. She went to MDANDERSON and at age 70 is now in total remission AND, she got married and her oncologist and radiation specialist gave her away. Please Google that story.
I just wanted to make sure that Memorial Sloan in NYC was doing everything possible for me. Well, I just found out that I am eligible for a new clinical trial called Ideaya - PARG for BRACA positive patients! I also want to say that the treatment I received at MDANDERSON was superb! From the first phone until I saw the Director of all clinical trials in the US, Dr. Timothy Yap, I was in shock about the professional and humane treatment I received. I didn’t wait two hours just to see the oncologist. My bloodwork took a total of FOUR minutes from sign in to its completion. I am actually willing to commute from New York to Houston to participate in this clinical trial. I’m 59 years old, just in case.
What I want to say is that we all need to advocate for ourselves. This is our lives, our families and our health. Please ask more questions and do t stop fighting. I never thought I would live past two years after my diagnosis. God Bless you all!
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yo207
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Fantastic yo207! Just what I needed to hear as I am lying on the sofa recovering from latest chemo and hoping that there’s some future to look forward to ❤️
You’re welcome. I’m glad my post was helpful. I know how this disease plays with your mental health and your mental health is the front line in this war. We can’t give up! 🕯️🙏❤️
You’re welcome Bobbylynn! I never thought I could do it again after my first round of chemo. I was bedridden and useless. It took me five days to just get out of bed back then. Although I told my then oncologist about my symptoms, I complained to one of my nurses and she asked my new oncologist to give me more steroids so I could function. I am learning to speak up because if we have to go through this, we shouldn’t have to suffer anymore than we already do. Happy to offer any form of positivity to my fellow fighters! Be well.
So positive to hear that you can survive with recurrences. I do hope the trial works out well for you. And thank you for being a oarticipant, these trials can change the treatment of OC and benefit us all x
Absolutely fantastic, keep doing what your doing and most of all spread your story to give inspiration to the newbies. Im 6 years into the journey . God bless you all and l agree with all theComments about ask questions get 2nd opinions if necessary stay positive and may your outlook always be bright & positive. I think your marvellous and very inspirational long may it continue love & hugs SheilaFxxx
Such a great post to read. I’m a 16 year survivor, now aged 64. Diagnosed 3b HGS BRAC2 in Oct 2007 and told I had 2 years. I’ve had 2 recurrences, been on 3 clinical trials (am still on the third) and currently 10 years 1 month NED. There is always hope while yr alive and breathing. The fight goes on! I wish you all the very best.
Dear Yo- I am a 15 year recurrent OVCA cancer survivor. I too am treated at MSK, but have often thought of going to MDA for their opinion. Thanks for encouraging me to move forward.
I just found out about MDAnderson. When I tell you it is night and day, I mean it. I love my nurses and have become very familiar with most of the staff on the 6th floor but this is my life. I had to give it a shot and I’m so glad I did. If I can give you anymore information, please let me know. I referred myself!
God Bless you and I hope my post leads you to new hope. 🙏❤️🕯️
Congrats to you as I'm going into my 1st recurrence, we must be our own advocate I am on board with the treatment plan but got a second opinion at Mayo confirming the drug cocktail I will probably follow up with either MD Anderson or Dana Farber for a maintenance consultation. What a wonderful story that her Doctor's gave her away. You are an inspiration to us all
Congratulations on 11 years! It really is so important to hear these stories as it helps us all cling on to much needed hope. Do you mind if I ask what type of ovarian cancer you have and also what lines of treatment you have had for your recurrences? I was told by oncologist that treatment usually stops working which was very disheartening to hear ....
Here's to many more years of beating this disease! Thank you for sharing xx
Congratulatios on 15 years! Great to hear Avastin worked so well for you. I had it for one year with Olaparib and am now on Olaparib alone. Fingers crossed it will all work x
Thankyou yo207. Always love hearing good stories but embrace the 'not so good' with love too. A positive attitude gets us through living with our disease & dying with dignity. I'm an 8-9 year survivor with 2 recurrences & 1 year NED. Avastin seems to be doing it's job but I'm always prepared for another fight. I'm 72 soon & I'm hoping to live as long as my mum who is currently 95. Shows how positive I am. Hahaha. Love all you amazing sisters. xxxx
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