I am wanting to take my dad for a second opinion. I really don’t care how far we have to travel. I just want the best! We are in Oklahoma. Any suggestions on a progressive specialist who can give hope to my 76yr old dad who failed Zytiga in 7 months and Xtandi did absolutely nothing for him. His PSA is doubling every 3wks. He’s currently at 20 PSA, he’s a Gleason 10 and was diagnosed back in Nov 2017 with a (“superscan”-too many bone mets to count).
He has agreed to try Taxotere and will have his first round this Friday but I want to be prepared and stay ahead of this. He was given 6 months without chemo and 1yr with chemo and I refuse to take that deal. My dad has never been sick in his life before this diagnosis. The diagnosis was an absolute shock because he wasn’t even feeling bad, just losing a lot of weight and he has always been a trim guy and didn’t have weight to lose.
I want to thank everyone that has responded to my posts. We are learning so much and you have given us the drive to fight this with everything we have. You guys are the reason my dad is going to do chemo! He wasn’t going to until I told him about all the responses to my posts. Thank you and God bless you and your families. This is a tough fight, but we will never give up.
Sometimes chemo may resensitize the cancer to Zytiga. I think the closest great MO to you is Oliver Sartor at Tulane. Eleni Efstathiou at MD Anderson would be a good choice too.
Am I being unrealistic thinking that the oncologist giving my dad 6 months without chemo and possibly a year with chemo seems drastic? I don’t want to be in denial but I’m just having a hard time accepting that with all the treatment options available. He is acting as if this is all we have left and it may not even work.
There ARE a lot of options already approved - Xofigo, Provenge, Jevtana and more in clinical trials. The best predictor is how well the chemo knocks it back. You have to take it one step at a time.
I responded to Zytiga very well (it worked for 2 years for me with no side effects of which I am aware) after which I tried Xtandi which failed to work for me from the get-go. Then I began chemotherapy with 6 infusions of Taxotere (1 infusion every 3 weeks); this cut my PSA nearly in half, from approx 30 to 15 with hardly any side effects. But 3 months later, my PSA was increasing rapidly (doubling every 5-6 weeks) again. I begin Jevtana chemotherapy tomorrow -- the plan is for 10 infusions (1 every 3 weeks). My oncologist said he may TRY putting me on Zytiga again after that -- see the comment you received from Tall_Allen about that. Just for your information, at diagnosis 5 years ago, I was a Stage 4 M1b (meaning Stage 4 with metastases including in the bone) with a Gleason Score of 9, a PSA score of 85.6, and a doubling psa score time of 8 weeks. I'm not sure that any of what I have written here will be helpful to you but just in case it somehow is, I have included it. I wish your dad and you the very very best.
While on Zytiga, my PSA did drop to, I believe, 0.02 after 15 months of being on the drug. I sure hated it when the Zytiga began to fail, but grateful that I had two great years on it (with no noticeable side effects either).
Please keep me updated on how you do on Jevtana. I wish you all the best and I have said a prayer for you that it works and puts the cancer to rest for a very very long time. Best of luck to you. Thank you for sharing your story.
Chemotherapy works on an entirely different principle from androgen deprivation therapy, so there is at least a chance that your Dad could have a very good response to it in spite of failing ADT.
I think your idea of getting another opinion from the best place you can find is a great one. And while chemo seems like a good next step, I like the idea of planning ahead and looking at others too, such as the ones that Tall_Allen suggested.
The U.S. National Cancer Center maintains a list of "designated cancer centers" that they believe are among the best places in the country for advanced cancer treatment. Here's the web page for the list: cancer.gov/research/nci-rol...
They include the Stephenson Cancer Center at the University of Oklahoma in Oklahoma City. There are also designated centers in Texas and Missouri that may be within driving distance. Some very famous cancer centers include MD Anderson in Houston, Memorial Sloan Kettering and Cornell Weill in New York, Mayo Clinic in Rochester MN, Dana-Farber/Harvard in Boston, UC San Francisco, UCLA, and many more.
I think your Dad's doctor was trying to be realistic and advising you based on his experience. But as Allen said, there are other options after chemo and your Dad might get lucky either on the chemo or on follow on treatments.
Go to Facebook and find Dr. Edwin Cevallos and message him your father’case. He will tell you how to use BIRM. It is working for me. Do not use the one that Amazon offers. This is only profilactic and they do not have the concentrate. You can also find Dr. Mark Soloway at Aventura Hospital, Miami and talk to him about this
I started after chemo because it did not work for me. As soon as i finished the chemo started taking 2.5 ml of BIRM three times a day with meals. Let me see if i can send you my PSA chart
Hope , sorry to hear about your dads monster ! There are lots of cancer specialists out there. MD Anderson, Mayo, KU at Kansas City , I’m always surprised when I see the doctors dragging there feet on chemo, I was 66 and in perfect health when they found my stage 4. Chemo first,with ADT treatment,now on Xtandi. PSA .005. 25 months and counting here. Good luck in your search 🙏🙏🙏🙏🙏🙏
I would be happy to talk with ur father. Im a medical oncologist in omaha, ne. I only see prostate and urologic patients. I trained at memorial sloan kettering and specialized in prostate cancer and immune therapies. I see ~350 prostate visits each month for 14 years. Have more clinical trials available than any other cancer center in US. 5 first jn world research treatments in last 2 years. I have patients come in from over 40 states and several countries. We were the first cancer center in the US with the Lu177 endocyte study open and one of three with it open now. U can learn more at gucancer.com or direct message me. I dont want to come across as a salesman but treating prostate cancer is my calling and I just want to help patients. Your first visit I spend 1 1/2 to 2 hours educating all options. You can also check out vitals.com for testimonials. Dr Luke Nordquist Omaha
Sometimes focusing on the "name brand" is not the best option. The institutions mentioned above are all very fine places, but you will not typically find an oncologist that just specializes in prostate or urological cancers. There are very few of those in this country and that's the physician you want to see. There are hundreds and hundreds of new research studies coming out every year for all types of cancer. It is virtually impossible for a general oncologist to remain aware and knowledgeable about all of them. I would highly recommend seeking out someone that just focuses on the type of cancer your father has.
If you need tips on minimizing chemo (Taxotere) side effects, search on this site. I posted an extensive list of suggestions that many find helpful. If you can't find it, let me know.
First, don't believe the predictions about how long your Dad has. The docs don't have a clue. Last January when I started taxotere, the docs told me the chemo was the only thing keeping me alive. I've been off it 6 months and they were obviously wrong. The second opinion that I got was "how do you want to spend the rest of your life?" Don't allow them to write your Dad off.
Taxotere (6 infusions) drove my PSA down from 45 to 4. I'm on Xtandi now and my PSA has stayed in the 4 range. I tolerated the chemo a lot better than some of my brothers in this group have, but everyone's different and you won't know until you do it.
Courage, you are giving your father strength. Educate yourself - this group is a marvelous resource. And remember - we are with you in this fight all the way.
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