It’s beyond complicated

It’s beyond complicated…and that still might be quite the understatement.

The scan showed significant progression.  The two known tumors in the liver are bigger; there are also many small new tumors in the liver.  There is now fluid around both lungs (previously it was just one lung).  There are also new tumors in the bones and many lymph nodes full of cancer.  So, the prostate cancer drug provided a great quality of life, but it failed in getting the disease stable.

At this point my doctor has recommended I look at clinical trials which are also complicated.  Just a quick educational piece about clinical trials:

Phase I: considered experimental, it’s the first time a drug is being tested in humans, the goal of the trial is to determine side effects and maximum tolerated dose (ie, how much the human body can handle).

Phase II: they know the dosing/frequency from the Phase I and are now expanding to more patients (generally under 50 total patients)  At this phase, they start to look at response rate (ie, does the drug stabilize/decrease the cancer) and the duration of the response (how long are patients stable).

Phase III: is a large, multi-center study with 100+ people involved, looking at ORR (overall response rate),  PFS (progression free survival) and OS (overall survival).

If a Phase III is successful, then it is submitted to FDA for approval.  This process (all the phases) can take 10 years and many, many fail along the way.

I’m not eligible for Phase III trials because I’ve had so much chemo.  So, I’m looking at Phase II and (if I have to) Phase I.  All trials require a “wash out” period, where I have to be off chemo for 2, 3, or 4 weeks (it varies from one trial to another).  Obviously the thought of no treatment is terrifying.  Then again, my doctor reminded me that the treatment I was on wasn’t working, so what’s the point of taking something that isn’t working?

Hopefully we can find one that will work and buy me some time, but there are no guarantees.  Although the trial drugs are covered on a clinical trial, the “standard of care” (labs, doctor visits, scans) are billed to insurance.  My insurance will not approve my participation in Phase I trials and only certain Phase II trials are acceptable.  So, I’m in the process of switching to Medicare, which doesn’t have as good of coverage and costs more, but does allow clinical trial participation.

So…it’s complicated, agreed?

 

In other news, the book signing was awesome!  If you missed out, the ordering info is below.  If you have read What You Might Not Know pretty please write a review-just click on the Amazon link below and you can leave it there.  Thanks!
Order a personalized paperback ($15 + $4 shipping): Send a check made out to Jen Smith to:
Jen Smith
PO Box 7812
Champaign, IL 61826

Or order through Paypal: jen@livinglegendary.org

Order on iBookstore ($9.99)

Order on Kindle ($9.99)

Order on Nook ($9.99)

 

Right now I’d really appreciate prayer of wisdom for the network of doctor’s I’m working with.  I’d also appreciate prayers that the right clinical trial is available and I meet the qualifications.

Again, thank you for all the support.  I know I am surrounded by the love of so many which helps me to keep going!

xoxo

Jen

Jen
Living legendary as a mom with Stage IV breast cancer. Author of Learning to Live Legendary and What You Might Not Know: My Life as a Stage IV Cancer Patient.
  1. Tammi Clifton Reply

    Jen, I am beyond upset to hear this news. Praying, praying, praying that Phase I or II of the clinical trials work for you. I am elated to hear the book signing and sales went well! You and Corbin are always in our thoughts and prayers!! God bless you and may peace and love surround you. I love the “protection” prayer. “The light of God surrounds us, the love of God enfolds us, the Power of God protects us” May God surround you, enfold you and protect you. Much love and prayers coming from So IL!!

  2. Tori Stierwalt Reply

    Oh Jen, I’m so sorry you didn’t get better news 🙁 I will be praying extra hard for wisdom for your doctors & for the perfect trial to open up for you. Maybe it will be the one that is the CURE-a girl can pray, right?! <3 hugs and prayers & I will definitely write a review as soon as I finish the book! (thanks for sending it so quick) 🙂

  3. caroline Reply

    I tell people this all the time, I had a friend with Stage IV for 17 years. I have another one who is more than 30 years out from Stage IV ovarian. Never give up, hop on the clinical trial bus. There is always hope. Big hugs.

  4. Jessica Sullivan Reply

    We will keep the prayers coming. I can’t wait to get my copy of your second book. Thank you for reminding me that I need to make everyday legendary.

  5. amanda bos Reply

    I DO hope you feel the love and support in a fraction of the inspiring, positive way that you impact my attitude everyday. Love you!!!!

  6. Kelly Bost Reply

    Oh Jen, I am so sorry about this news and will add extra prayers about navigating possible clinical trials, health care system, and doctor’s advice. I really miss our coffee times, and can’t wait to read your second book. Thank you for your honest words to all of us who have been touched by cancer in one way or another.

  7. Teresa Majers Reply

    My heart and prayers are with you always. Extra prayers for wisdom for your doctors.

  8. Joanna Reply

    Wow, you are such an inspiration as a mother, woman, and all round courageous human being. Our family will be praying for you. Keep fighting – you can beat this (believe it)! <3

  9. Susana Pacheco Hollinger Reply

    Oh, Jen – I just read this. I’m so sorry for the news you received. YES. You have my specific prayers for WISDOM for the network of doctors working with you. And I pray that the right clinical trial is available and that you will meet the qualifications. Also, I’m reading your book, but have not gotten very far yet… Still “crossing over to the other side”. When I complete my reading I assure you I’ll post my comments on Amazon as well as share my response on fb and sing its praises everywhere else I can! LOVE YOU. xo

  10. Jody Schoger Reply

    Jen,
    I feel terrible about your news and the constant seesaw between QOL and disease progression. Please know that I’m thinking of you and sending love and light,
    Jody

  11. Gwen Reply

    Hi Jen,
    I found your blog a few weeks ago randomly while searching for “living with cancer”. I was diagnosed almost two years ago with stage 3. SO Sorry about this news you just shared. Absolutely praying for every aspect of your life!
    Gwen

  12. AnneMarie Reply

    Oh Jen,
    I am SO sorry to see this. You are in my thoughts and I’m sending you tons of love.
    xoxo
    AnneMarie

  13. Ruthie FitzRandolph Reply

    Jen, I am so sorry to hear about the progression of this horrible disease. I am praying for a miracle for you. You are such a beautiful woman and loving mother. I pray that this disease process reverses and that you and Corbin can enjoy many more years on earth together. Ruthie FitzRandolph

  14. Ellen Hall Reply

    Jen, just read your post. My prayers and offer to assist you in anyway are always surrounding you.

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