I had my monthly appointment with my oncologist, Lupron shot and Zometa infusion yesterday. The latter two items went off without a hitch, as usual.
My PSA however was up again and now at 81.2
I was not at all surprised with this increase based on the previous two PSA readings and how I feel. Let me clarify how I feel, overall I feel great. However, because I have a very high tolerance for pain and the fact that after six years of this I am very in tune with every ache and pain in my body, I knew the PSA was up. Nothing severe, just an occasional twinge in my hip or leg(s) etc., no Advil needed it comes and goes.
So it seems that the DES (estrogen) has run its course and so it’s time for a change. We have discussed a number of possible treatments with Dr. V however, two are not yet available and the doctor’s team is still trying to coordinate the third. Given this and the need for a change we decided that as a short term stop-gap I would replace the DES with high-dose Casodex. Casodex is an anti-androgen that is combined with Lupron as the ‘standard’ treatment when men are initially diagnosed with advanced PCa. I was initially on Casodex for the first year after diagnosis. In a high-dose dosage there were a few small studies ten years ago that showed some limited benefit. If my results are nothing more than the stabilization of my PSA while we line up the next treatment, I’ll take it.
On another note, the doctor did feel a slightly enlarged lymph node in my neck. He didn’t seem too worried but I am having an abdominal CT scan on Thursday just to be safe. There are times I think my laissez-faire attitude or sarcasm leaves Dr. V dumbfounded. For example, after telling me about the lymph node and the order for a CT scan, I responded with the following; ‘Well I guess the CT could result in a bad news, good news situation. The bad news is we found something, the good news is you now qualify for the XL 184 trial!’ He had no idea how to respond.
Just so you the reader understands, I honestly believe that because life itself is far too serious, you have to see the irony in things, and retain a little bit of sarcasm in your everyday life. Mary and I laugh a lot at this whole situation. When we left the doctor she said (thick with sarcasm) “Oh well, just another appointment, your numbers are up, you have a swollen lymph node in your neck, you have to have a CT scan, your iron level is down and I have three new prescriptions to get filled!” We then went on to ponder whether or not there was something wrong with us because of the way we react to news like the news we just received? Shouldn’t we be upset, emotional, pissed-off, something? We are not naïve nor are we emotionless, it’s just after this much time we don’t fly off the handle or get too worried. It is what it is and we have to let it all play out before our eyes.
an oncologist with a sense of humor is priceless. I can’t imagine getting through the PCa experience without it. I recently decided to have the dreaded orchiectomy because there’s evidence that lupron just wasn’t working consistently. when my wife and I were talking to a surgical resident pre-surgery, he asked if we had any questions. without hesitation, she asked “can we take them home in a little jar?” I think we made his day, and it really relaxed the atmosphere. gallows humor, maybe, but if you can’t laugh the cancer experience is so much less tolerable.
David — Also look into MK-4827, a PARP inhibitor.
Have you looked at Coley’s Toxins? http://www.mbvax.com. You can email the Dr. at the website and ask how you can obtain it in the USA as your Dr. can prescribe. Once taught you can treat yourself at home. If you have a Picc already, it’ll be a snap. Please look into them. They’re highly successful with Breast Cancer/Bone Cancer/..Sarcomas & Carcinomas. The results are on the website. All the best…watching you from a distance. P.S. You and your wife have a great attitude! Glad to see :).
David,
I was initially on Cyproteronacetaat (before getting the Zoladex, similar to Lupron), and then switched to Casodex. This Cyproteronacetaat reduced my PSA by 50% in just 2 days!
Dr. Bob Leibowitz recommends Cytadren as another option instead of Casodex for a 2nd time. He also uses 50 mg thalidomide and 5 mg Revlimid to reduce the fast growth of the PCa.