Went for a second opinion last Friday, and even though I appear to have responded well to my first 3 months of treatment, it was an eye opener. Because I believe the quality of care we receive is to a significant degree related to our willingness to ask informed questions, to engage our oncologists in discussion of treatment options, and to be proactive in making treatment choices, I want to share what I learned in the hope that some of it may be useful.
I was diagnosed Nov. 2017. PSA 36, G 4+4, Mets in local lymph nodes, pubic bone, acetubulum and one rib. Also a large tumor outside the prostate. Treatment is Firmagon and Xgeva 1x / 4 wks, casodex daily, prednisone 5 mg 2x / day, and docetaxel every 3 wks. PSA is down to 0.14. Had my fifth of 6 docetaxel infusions today.
Second opinion doctor is at a teaching hospital and he specializes in prostate, bladder and testicular cancers. He says I have been severely OVERMEDICATED. Says prednisone is unnecessary except when on zytiga. Says casodex only a temporary drug to prevent testosterone spikes when main ADT drug is started. Says Xgeva has significant risk for liver damage and understated risk for osteonecrosis of jaw. He would give Xgeva once every 6 months.
He did not commit to a plan, telling me to finish the docetaxel first. Then new scans and blood work, including testosterone levels test, will make the plan clear. He did say that Zytiga, radiation and DNA testing may be in my immediate future.
This guy knew every study and drug that I mentioned, and was willing to talk about them. We spent 45 minutes together. Choosing him to assume my treatment was a no brainer.
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Canoehead
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Wow, significant difference. Where are you and your second opinion doctor located? I am planning to do exactly what you just did with your second opinion and am willing to travel, if necessary. I am in Northeast Ohio where the Cleveland Clinic and University Hospitals are located -- but I have not been successful in finding a prostate-specialized oncologist yet.
The original full prescribing information for docetaxel came with recommended pre-dosage administration of a corticosteroid to help prevent possible chemo side effects. Usually just before or around the time of the chemo itself. It was originally dexamethasone, but many men get prednisone from their doctors, instead. As for bone protective agents such as Zometa (zoledronic acid) or Xgeva (denosumab) and relative risks for Osteonecrosis of the Jaw (ONJ), the numbers from previous clinical trials involving thousands of men and women with various types of cancers and bone mets show the numbers in the 2-4 % range, even when getting these agents as often as every 4 weeks. "Two phase 3 clinical trials of denosumab ... showed overall cumulative ONJ incidences to be 3.8% to 4.7% at approximately 5 years of treatment with denosumab."
Getting either Zometa or Xgeva only every 6 months might well be a "wash" if one is on either of them for years and years. There's really not a lot of data beyond the 3 year mark.
Most people discuss it with their dentists, and avoid invasive dental work that causes trauma to bone. (Routine cleanings and some minor gum work are usually OK, and recommended.)
(I got Zometa around 29 months in a row, before reducing it back to only a few times per year. Some of that might have been my local oncologist wanting to milk the insurance cow, but I also started with LOTS of bone mets and a really, really high PSA in the thousands. I figured I'd risk a little ONJ vs. a catastrophic spinal or hip "skeletal related event".)
If you start Zytiga soon, you will be restarting the Prednisone anyway.
The dexamethasone right before docetaxel is standard, and he had no problem with that. I expect that the low amount of bisohosphonates he suggested for me may be related to the fact I only had a few bone mets. To me one person in 30 getting ONJ seems like a lot for a very serious and difficult to treat complication, especially since I need 2 root canals.
Exactly, Canoehead. Everybody's situation and perceptions/tolerance for risks is different. Hope you get those root canals and other dental problems resolved as soon as you can, so as not to have them competing with any of your other needs for treatment of the prostate cancer.
(Aside: When I was diagnosed about 4 years ago I was having some dental work done and told my dentist about my very advanced prostate cancer at initial diagnosis and the Zometa I was getting. The next time I saw him he said to me, "Man, thanks for having that conversation with me. You may have saved my life. I had my PSA checked and have decided I need to go on Active Surveillance." Fast forward to today. Because he was on his Active Surveillance he was able to be diagnosed with early prostate cancer, and he just recently had a routine prostatectomy with curative intent.)
The first Doc is keeping you alive....he is hitting the cancer hard to achieve a durable remission...IMO the 2nd doc is full of shit...there are valid reasons for every drug the first doc put you on...look at the dramatic drop in your PSA
Gus, you’re a longtime, knowledgeable contributor, so I respect your opinion and will certainly have it in mind when i next meet with and have questions for my new oncologist.
I read in another of your posts that Lupron promotes the development of CRPC. Why do you say that, and do you think that is true for all ADT drugs such as Firmagon?
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