It was not the greatest doc visit today. First an hour behind.. Then got a PA not the MO. Then got PSA results the same 11.79 as a month earlier. I would say Xtandi is not working but she said as long as PSA isn’t rising they consider it successful. Is that true?
This is a new to us MO office that doesn’t specialize in pCa but it’s convenient. The back up plan is to be in Minnesota for two months this summer and visit the docs we had there for second opinions.
Is there anything that can be taken with Xtandi to make it more effective? He just had an orchiectomy a week ago and his last Lupron was a 30 day dose a month ago. He has the 3 lesions in his lung scanned in January still there and I guess no way to get rid of those.
Thoughts/Ideas appreciated.
Mary
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Grumpyswife
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I'm not terrifically inspired by a doctor who sends his physician's assistant to deal with a patient that has advanced prostate cancer, nor am I very inspired by someone who has nothing more to say about a PSA level of 11.79 than that he thinks everything is cool. Frankly, I'm also very surprised that the PSA was exactly the same to four significant digits (!) one month later. Could they have just reported the results of the same test twice?
As for making the Xtandi more effective, there have been research reports that the diabetes drug, Metformin, has worked in some mice to reduce resistance to Xtandi, however I don't think there are any clinical trial reports about it yet. However I think the chances are small that a physician's assistant, or even a medical oncologist for whom prostate cancer is just one of a great many diseases he treats, will know anything about this or be interested in trying it.
There are some new drugs, apalutamide and proxalutamide, that may or may not be worth consideration - but you'll need a real PCa specialist MO to advise you on new drugs.
Now that spring has sprung, I'm thinking that maybe a trip to Minnesota will be a worthwhile journey.
Yes I noticed the coincidence. My husband is also seeing a urologist who did not tell us that he did a PSA the same day (2/26) as the first PSA after starting Xtandi. Those results were 10.4 (LabCorp) vs 11.82 from the MO office. We rely so much on the PSA so it's interesting to see the differences.
is correct about Apalutamide, but a proxalutamide trial might be worth your while. This one is promising. I can get into this trial, but logistics are very difficult for me right now.
That was an issue, but I too refused chemo and they excepted that. Give it a try!
Mary, I wish for a great recovery for your husband and nanny years together. I am not in the medical profession, just a guy who was Stage 4 PCa with mets fourteen years ago.
Why would you expect mets to dissipate by only drastically reducing the product of testosterone? Yes, T feeds metastatic lesions; however once mets are established or metastatic cells are introduced to the vascular and lymphatic systems, they continue to grow - just at a much slower pace.
Please seek out a Medical Oncologist that specializes in Prostate and Genitourlogic cancers. Preferably one who does research and academia, however a specialist none the less. This type of person is well read and knowledgeable about the fired. A generalist usually follows only what is printed in their treatment reference book. it's a time issue.
Based on my PSA and multiple scans over the years, I can state that my mets have been resolved and replaced with new bone growth. As your husband has malignant lesions in your lungs, then I am aware of only two methods to resolve the metastatic lesions - re-section of part of the lung and chemotherapy. If these are not an option, then he is faced with reducing growth, but not resolution.
BTW, a PCa specializing Medical Oncologist is equipped to deal with PCa cancer spread to the lungs. I Pray that you will gain the answers needed and that ya'll have many years together doing the fun stuff of life.
A friend at 82+who has fought this disease with RT, both External and brachytherapy, ADT, etc. was found 18 months ago to have multiple mets to his lungs. Biopsies proved extensive mets lungs only.
Was PL1 D positive. Went to trial on Keytruda for 1 year. Cleared all mets so ceased Keytruda. Still on ADT. PSA undetectable. All is well.
We are open to aggressive treatments but like you say need to find the right MO. I am somewhat guilty of lagging in finding another MO PCa specialist as we have been through travel hell for the last couple of years and it's so nice to stay put for awhile. I also have a husband who is tired of me dragging him to so many doctors.
I think this local MO is willing to do chemo but I will also get specialized MO second opinions when we travel to MN this summer. Not sure about going to Mayo again though.
Regarding dissipating nodes, I have learned not to expect anything with PCa as it has a mind of it's own. Here is an excerpt from his 29June2017 Axumin study. "the prominent nodularities in the lower left lobe seen on the prior study have nearly resolved." Miracle was mentioned and he was only on lupron injections 1.5 years prior to that scan. Of course some other lung mets showed up, too.
Gourd Dancer you have great results and some think my husband does, too. He's pushing 18 years since Dx, on hormones for just 2 years, no pain but for post-surgical, working until age 74 and good quality of life (except for being unemployed). I retired, too, as this is a full time job for me.
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Slow increase in PSA while on xtandi 
PSA rise on Xtandi
Radiation PSA, Orgovyx, Bone density Update 2/18/24
Fluctuating psa with xtandi
Was hoping for a better monthly PSA post Xtandi
