July 21, 2011

When good isn't good enough, then you get more

Tuesday was my four week check up with my Oncologist, along with the usual blood tests and shots. The appointment was uneventful for the most part, the doctor was away and we saw the Physician’s Assistant. She is great, but no decisions were obviously made with the doctor away, this was all expected from the last appointment.

Last month I switched a few drugs around; I stopped Lupron and started Firmagon (testosterone blockade), stopped Zometa and started Xgeva (bone strengthener). After making these changes four weeks ago I did have mild to moderate pain a few times during the weeks that followed. As almost always happens, the week leading up to the doctor’s appointment was as close to normal as I’ve had in a while. I felt great and remain that way this week as well. The side effects from the Firmagon shot (tenderness, redness and slight swelling at the injection site) seem to be much less than June. Or maybe I am just more tolerant this time around.

The exciting news is my PSA was actually down to 421 (it was 433 the month before). Though this is somewhat good news, the drug I started back in January (Zytiga / Abiraterone) is not having the impact we had hoped. However, I am very grateful for the result. An additional marker we track closely is Alkaline Phosphatase. Normal levels are approximately 40-110, mine had been between 50 and 60 for years. With the rise in my PSA this year, the AlkPhos has also gone up. According to one specialist my type of prostate cancer is creating PSA primarily via the bone tumors. Hence, my need to find a treatment that targets bone.

Speaking of treatments that target bone, yesterday we received a call from the doctor’s office in Boston. Without looking too far ahead, it was good news and we now have an appointment with the doctor leading the trial the first week of August. We are cautiously optimistic as there is not a guarantee that I will qualify for the XL-184 trial the purpose of this meeting is to determine if I am eligible. The appointment will include a blood test, a bone scan, CT scan and exam by the doctor.  Although I appear to be an ideal candidate on paper, things can always pop up. Once again, we are cautiously optimistic!

Assuming that the tests and the appointment go well, I will have to return 4 weeks later to start the trail. The delay is where this gets a little risky. I will have to stop taking a number of medications for those four weeks. This includes:
- Zytiga (Abiraterone) and Prednisone (the current hormone blockade I have been on since January)
- Lovenox (a blood thinner I have been on since last fall when I was on DES and had several clots in my leg)
- Finisteride (I have been on this drug for almost 5 years, the short story is it blocks a form of testosterone)

Stopping the blood thinner is the least risky in my mind. The clots I developed on two separate occasions can be attributed to my treatments at the time, one being Taxotere and one being DES. I have been off DES since December.  As a precaution, Dr. V suggested I add a low dose aspirin to my daily regimen. Finisteride is also a minor risk since my testosterone level is always extremely low. Zytiga is the big risk but the potential of this new drug is so great that it is a risk I am willing to take.

So if the crazy schedule of ours wasn’t busy enough, now we add a trip to Boston the mix!


Sherry Galloway said...

Great news that your PSA is lower than last month! I do hope that you get into the new trial....it's amazing how every year new treatments are coming to be and that is such great news! I'm wishing you the very best with all of this; you are one tough guy! Hugs, Sherry

James Korzec said...

Hello Dave. My name is Jim Korzec and I have PC that spread to my pelvis bone in 2009.I had robotic surgery in December 2007.I am currently on hormone therapy ( Zoladex ) I have a friend who is 71and he is being treated with XL184.
Would you like to hear from him ? Please let me know. In the meantime I wish you the very best as you venture into new treatment options. God bless you with great results. Take care :)

audreylm said...

Hi Dave,
I've been following you for years on the yahoo group and am always inspired by your terrific spirit and attitude. Great blog. We're on this journey with you and trying to always maintain our senses of humor (a big help during Bob's treatment a few years ago).
We laugh because as I begin having hot flashes as part of imminent menopause, Bob can relate from the ones he had while on Trelstar. (And I gotta add that calling a testosterone blocker "Firmagon" is definitely someone's idea of evil humor--Bob's Firm was definitely Gone at that point, LOL.)
all best,

Anonymous said...

hi david iam hoping and praying that you get into the xL 184 trial,that will be the drug i will want to try when abby stops working,so far 68 days on abby its amazing what it has done for me and i am thanking the good lord everyday for this pain relief and being able to walk and get around like its not in my bones,pain is gone oxycodone stopped,feeling so much better.my alkaline phosphatase was 948 june 11 by july 8 it droped to 710 my dr says there is some remodeling of the bone going on therefore dropping this marker the abby is shrinking tumors and new bone is forming.i wish you all the best and praying that xl184 will be what will quell the beast in you for now. wishing you and your family all the best god is there for you always david, take care brother

Anonymous said...

its me david richard moore forgot to add my name god bless