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:
PO Box 7812
Champaign, IL 61826
Or order through Paypal: firstname.lastname@example.org
Order on iBookstore ($9.99)
Order on Kindle ($9.99)
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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!