I have been fighting the beast for now 20 years. Obviously, I feel very blessed that the Lord has granted me all this time with my family in spite of having this disease. From February to May, of 2021, I had five doses of docetaxel in addition to my Ellegard.
The docetaxel absolutely beat me up, but I tried to continue my very active exercising lifestyle. From May until December, I was very encouraged that my PSA had stayed between 0.2 and 0.4. My latest PSA showed in January that it had jumped to 3.4 and 2 weeks later it was 4.1. Obviously, this is very disappointing.
I am reaching out to all of you who may have had a situation like mine and wondering what you did next and how it worked. I am scheduled to have scans in 2 weeks and my ALP has risen from 88 to 119.
Saying “ but you had those 20 years “ is “ no “ … zero … nada consolation ..is it. Clearly your species of PCa is the slow growing type …. hopefully that trait will remain dominant and you’ll be able to extend everything out for a very goodly long additional amount time too. Therze clear reason for optimism for that avenue of action IMHO.
I haven’t quite had the situation you are asking about, but I’m sending out some positive vibes and merit thoughts to you , looking forward to hearing you are “ whacking the crap “ out of this stuff and hanging around blissfully comfortable for another 30 years brother.
Is your friend in a trial of keytruda + xtandi? What’s the profile of ur friend’s PCa: mCRPC or mHSPC? I am looking into registering my father to that trial. He’s mCRPC, 83 yrs old, zytiga no longer works. I m just trying to gauge the possible effectiveness because I’ve heard mixed results from keytruda. Glad to hear ur friend has good results from Keytruda! 👏Thanks in advance!!
I would apply to a trial with Lu 177 PSMA, a systemic therapy which will treat the cancer anywhere (bone, organs, lymph nodes), it has less side effects than chemo unless there is diffuse infiltration of the bone marrow by the cancer and it has been shown to be more effective than chemo.
If clinical trials were not possible I would try to get treatment abroad in Europe, India etc. There are many places where to get the treatment, particularly in Germany which is where this therapy was initiated.
Get a hold of Dr beers team in oregon at OHSU. I am scheduled for Lu 177 soon . My psa jumped to 563 now 3.6 on combo of zytiga and xtandi. Recommended by Dr luke Nordquist in Nebraska. Scans look good no new progression, I have widespread mets. Good luck, I believe you can get another 20
I am sorry that it’s kicking off inside you .Not sure what your 29 year journey entailed . When I was diagnosed 7 years ago I had spread to lymph nodes in various parts of my body . I had docetaxl that seemed to do the trick but like you it all accelerated very fast shortly after , not dissimilar to you .
I was put on Zytega in Jan 2016 , my psa went down to 0.11 after a few months and here we are in Jan 2022 , 6 years on and my psa is still 0.11.
I know many friends for whom Zytega did nothing but for me it’s been amazing . It won’t last forever but 6 years with no other treatment I will take .
You had earlier mentioned going to see Dr. Luke in Omaha. Dr. Luke does telehealth as well but I am not sure of the first visit via telehealth. Seeing him would be a good plan as he has so many trials and ideas.
If travel is difficult maybe you can find a trial closer to home. Are you in Arizona? It might be easier to travel to California and see someone recommended by TA.
Thanks Nal:Neuropathy a little better after taking the Mega Benfotiamine and L-Arginine. The worst part of it is in the front part of my foot and especially my toes. Would love to hear about new ideas.
Just had my blood drawn for a Foundation One genic test at Mayo. Hope something comes of that. What about Jevtana? Can't wait to talk to my MO here at Mayo. Alot of people recommending LuLu 177. Any other steps you would suggest?
Yes, Zytiga worked for 3 1/2 years. After it failed I went on to xtandi which worked for 4 years. Just because one ADT drug fails, it does not mean others will not work.
Xtandi is very expensive. I was fortunate to be on a drug trial so it didn't cost me anything. You could get it from India. The brand is the same. If you need information on how to obtain it I can give you the information.
So, I’m on Eligard/Lupron since 2015. Currently switching from a failed docetaxel then Jevtana w/ Xtandi regimen to carboplatin mono therapy next Tuesday. Numerous bone, liver and lymph Mets with PSA of 534. Keeping fingers crossed.
Thanks so much NalSo the combo is R-Lipoic acid 600 mgs and Benfotimide? I will keep you posted on the Foundation.
Thanks,
Tom
• in reply to
Hi Nal:
Got my R-Lipoic acid 600 mgs and Benfotimide today. 1 pill each a day correct?
I quit taking the Benfotimide 2 weeks ago as my PSA climbed. Still rising at 5.1. going up a point a week. Got the Fountain One back but can't download it off Mayo server. I am going to get a copy next week. They said nothing appeared except the following:
"Dr. Bryce is referring you to the CHIP clinic due to your genetic test result. The results suggests that there may be a low level growth of abnormal blood cells in his marrow. This is an age related process and not in any way an urgent issue, but it has long term implications and as such why Dr. Bryce is referring you to this clinic.
CHIP= clonal hematopoiesis of indeterminate potential."
Scan next week. Feel Great - usure about next step.
I know most people on this site will be sceptical of my advice. Still, it is always worthwhile to use Artemether as a second line treatment. And if possible, Coartem: the combination of Artemether and Lumefantrine. Artemether has proven itself over and over again to clear up cancer which metastasized to the bone structure, and also to other organs. Just start reading: Artemether cures cancer. And you guys in the US have the privilege that you have the best factory of Artemether right there with you. Hepalin.com
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