THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.
Pain in my lower back and left leg finally drove me to my family doctor who sent me for an x-ray. Two days later at a follow-up visit, the Doctor felt that after reviewing the x-ray that the pain was caused by arthritis and prescribed some Percocet with a re-visit in 30 days.
Three miserable days later I self-referred myself to a local orthopaedic doctor. He reviewed the x-rays and sent me for an MRI. The radiologist's report suspected "Metastatic Disease" in my spine and pelvic region. A biopsy of my spine was performed and confirmed the bone cancer, with origins in the prostate. (Turns out this great Doctor is a PCA survivor and suspected the diagnosis on my first visit.)
Having no symptoms of PCA, My wife and I were floored. We had just sold our ownership interests in our respective companies in Southern Ca. and purchased a small ranch in Montana to follow our dream and raise our two children (8 & 4) in rural America.
To make a long story short, we looked for and found Bill Holden at Cedars-Sinai in LA (He treated Mile Milliken you may remember.) Started Lupron & Casodex immediately.
Here is a history of my PSA readings while continuing with Lupron, Casodex, and Zometa:
February 2007 139.0
March 2007 0.2
June 2007 0.1
September 2007 0.1
December 2007 0.1
At this point, after 10 months my doctor(still commuting to Los Angeles every three months) finally agreed to let me take a vacation for all of the above, and monitor my PSA every three months. Mostly pain free and feeling good.
January 2008 0.0
March 2008 0.0
June 2008 0.8
October 2008 2.04
January 2009 7.78
March 2009 16.53
As you can see, PSA started increasing in June and by March it was doubling in less than two months. I restarted Lupron, Casodex and Zometa. The same ole' symptoms didn't take long to make themselves at home again, hot flashs, etc.
June 2009 0.22
August 2009 0.1
I have had the addition of the nasty side effect of being sick to my stomach almost constantly. I've infact lost nearly 40 lbs in 6 months. But the PSA resumed its low level quickly for now.
Continuing with my PSA readings:
December 2009: 0.1 With nearly 9 months under my belt on meds, and a stable low PSA, my Oncologist agreed I could take a vacation (discontinue Casodex & Lupron but continue Zometa every 3 months). This is my second vacation, having a combined time on meds of 20 months. My intestinal issues continue and I lost another 32 lbs since August.
March 2010 0.1 By now the side effects of Lupron & Casodex have been subsiding but the weight loss continues. Lost another 8 lbs since December. Since my Doctor and I hoped that the intestinal issues would also subside with the vacation, we scheduled a visit with a Gastroenterologist for a colonoscopy in June. During the procedure, poloyps were removed examined and determined to be non-cancerous.
May 2010 6.1 After only five months, PSA levels have started rising again. This is less than half the time it took for PSA levels to begin rising on my first vacation. The question is: When do I restart the Meds? Some have said as soon as the PSA begins to rise, Others have said pick a number like 10 or 20. Or study the velocity and then choose.
July 2010 22.9 I am beginning to recognize signs of bone pain so I scheduled the above PSA test a month and a half of normal (every three months) Well it appears that my PSA is doubling every 15.5 days. I am scheduling an appointment with my Oncologist to discuss my options and to review the results of a Bone Scan performed last week.
August 2010 PSA 33.7 Reluctantly restarted Casodex, Lupron and Zometa. Bone scan completed recently showed renewed activity at previously identified spots but no evidence of new areas.
September 2010 PSA 7.9
October 2010 PSA 0.75
January 2011 PSA 0.59 After six months on meds, PSA has not returned to it's previous nadir of 0.01 which was reached within 30 days or less after my previous vacations.
February 2011 PSA 0.99
April 2011 PSA 1.49 Appears I am refractory or becoming so. My Oncologist and I decided that we will wait one more cycle of Lupron, check the resulting PSA, and then make the next set of decisions regarding where to go from here. My velocity calculations indicate that my PSA will be somewhere in the 8.0 - to 10.0 on my next doctors appointment in early July. Bone pain is evident at this time but manageable.
July 2011 PSA 3.76 Discussed options going forward with the continued advance of PSA. Discontinued Casodex, hoping for a drop in PSA as a result of Casodex withdrawal. Received Lupron and Zometa.
August 2011 PSA 7.10
September 2011 PSA 2.61 Eliminating Casodex from my daily medications had several positive effects. The PSA drop is great and the elimination of the Casodex eliminated a lot of the side effects that I had blamed solely on Lupron. Continued with Lupron and Zometa until the PSA begins to rise.
December 2011 PSA 2.51.
March 2012 - PSA 4.0
May 2012 - PSA 11.9
August 2012 - PSA 27.0 With bone pain increasing, I completed X-rays, Bone Scan, and MRI. Conclusion: "Sclerotic bone metastases increasing in size and numbers". Armed with these disappointing results, began Prednisone on September 24 and will have the first infusion of Docetaxel tomorrow, September 26, 2012
1/16/13 PSA 0.7 Completed sixth infusion of Docetaxel. I did not tolerate the treatment well, side effects included loss of appetite, continual severe flu like symptons, loss of energy and extreme fatigue. Walking 50 feet was a major task, climbing stairs was nearly impossible without resting every couple of steps.
5/13/13 PSA 5.7 PSA began rising rapidly with a doubling time if 33 days. Applied for approval of Zytiga.
6/10/13 PSA 10.2. Completed process of weaning off of Prednisone which ONC belived was contributing to nausea and muscle wasting.
7/10/13 PSA 17.3 Expecting delivery of Zytiga any day now so restarted Prednisone
7/22/13 PSA 20.7 Started Zitiga, Bone pain significant
8/7/13 Major flare in bone pain resulting in 10 fold increase in pain meds. Pain began subsiding after about 10 days. Scheduled MRI to evaluate progression in Mets. Continue to received Lupron and monthly infusions of Zometa.
9/16/13 PSA 0.2, results of MRI showed multiple new and growing metastis to the bone. Will repeat MRI in November to verify Zytiga is working. Bone pain has decreased to approximately the same level as prior to starting Zytiga.
My PSA remaines at 0.1 since October 2013. Current medication protocol is: Zytiga 1,000 mg daily, Prednisone 10 mg daily, Omeprazole 20 mg daily, Oxycodone 5mg - 10 mg daily as needed, Zometa infusion monthly, Lupron depot every three months.
Several MRI's and Bone Scans have been performed revealing that the existing mets have remained stable and no new mets noted. Moderate bone pain continues which prompted a single low dose shot of IMRT in July 2014 to the most bothersome area in my hip.
Fatigue is a problem and has been increasing the last eight months. Nausea and vomiting has been a daily occurrence, especially the last six months resulting in slow but continual weight loss due to lack of appetite. My Oncologist and I have been discussing this and have made adjustments to the timing of medications and added Omeprazole which is a Proton Pump inhibitor which is somewhat effective in reducing nausea but not totally. I did not tolerate Prednisone well when undergoing chemo and unfortunately it is required when taking Zytiga.
We reached the consensus that much of the gastrointestinal issues I am experiencing may be from Prednisone. As an alternative, I can switch to Xandi which does not require Prednisone.
I am hesitant to switch while Zytiga continues to work so we will continue to find ways to reduce the side effects of Prednisone until or unless the side effects become intolerable or unwise.
After 18 months on Zytiga, I am so blessed to have responded so well. Several years ago, there were few options after Chemo but just in time, these new drugs came along and gave renewed hope to thousands of use fighting the dreadful disease.
Bill's e-mail address is: skeled AT yahoo.com (replace "AT" with "@")
NOTE: Bill has not updated his story for more than 15 months, so you may not receive any response from him.
