One of our friends on our site suggested we begin a new post so we can share thoughts and learnings on what to do (and when to do it) when PSA rises after initial success lowering PSA.
In my case, I have been in remission for 2-years (per my oncologist) after initially having a 227 PSA. Following Lupron and chemo, PSA reached a nadir (low point) of 0.1 for 1-year. Then began slowly going up for 1 year. Now at 1.1, having recently bounced by 0.3 points in the last month.
Since many of us will be wondering, when it happens to us, what do we do? When is it a significant enough change that remission is considered over? And how do you know what to so next? And what is the best way to collaborate with your oncologist to put a next phase treatment plan in place?
Look forward to everyone's thoughts...
Written by
JamesAtlanta
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Ten years at this so far. My oncologist looks for 2 - 3 consecutive increases or a sudden spike before he recommends treatment changes. He also discounts moves of a few tenths of a point. It takes some trust in your MedOnc not to change things when the PSA starts rising. Hopefully your meetings with him are conversations rather than one-way information.
In your case, if you have been off Lupron, then you may be looking at restarting it in the next 3 - 12 months. If you have remained on Lupron, then your next likely step is Xtandi or Zytiga, though there are other options.
I agree with YostConner, nothing to add except to make sure your testosterone level is below 20 if and when you go back on Lupron. If your T level isn't low enough, you can try a different first line ADT treatment and see if that works before moving on to Zytiga or Xtandi.
Similar results. On Lupron in 3/14. PSA rose to 2.5 end of 2015. Stayed on Lupron and added Xtandi 12/15. PSA at 0.1 ever since. Gleason 8; one met on each femur that have shrunk 40%. I trust my oncologist. She's the goto PC specialist at Kaiser; "fired" my well meaning urologist who was not "hands on."
YostConner is correct about trusting your oncologist. If you don't, find a replacement.
One other thing, celebrate today, friends and family. Cause the good doctor to worry about tomorrow on your behalf.
I'm with Oakland CA Kaiser. My doctor is Andrea Harzstark. She's both a Urologist and Oncologist who specializes in PC. Kaiser brought her in from UCSF to head up a team that stays on top of the latest PC studies, trials, etc.
This is the exact place I'm at in my path, so I'm definitely interested in following this. I have my first meeting with a medical oncologist on 7/17 so we'll see what he has to say. I had RP and radiation and have been on Lupron continuously throughout the process (since 12/15). In my last three-month checks, I went from a nadir of 0.05 in August to 0.38 in May. My T was checked last month and was still low, so the rising PSA suggests a problem. So we'll have to discuss that and see if it's time to look at new treatments. I'll share his wisdom after that appointment. I'm thinking Provenge, and probably Xtandi added to my Lupron shots? Thoughts?
I think it will depend on what your insurance will pay for. Mine declined Xtandi, but approved Zytiga. A savings of a $1000 or so.
My PSA was creeping up like yours, when I asked my Onc when I should be concerned. He said not until it doubles. A month later, he tells me I need to get imaging to check the met situation. He didn't say whether he was doing it because my PSA doubled or not. But, it obviously had. (1.1 to 2.3 in less than six months) And, does that actually constitute doubling? If I said it once, I'll say it again, I need a knew Onc. This guy has tunnel-vision.
Yeah, the other factor I forgot to mention was in May I had the Axumin PET scan, which is supposed to be the next great thing and it came back negative. So I'm kind of in the same boat, my doctors seem to be relying more on the scan I think. But I'm very vested in trying to STOP the metastasis in whatever way i can, immunotherapy seems to hold the best hope. So if I can get in a trial or whatever to do what i need to to stop the next step, I'm all for it and the sooner the better it seems to me.
I agree with going with the latest trends that apparently are working, Whether it be immunotherapy, or any of the new treatments being evaluated. When I asked my Onc about genetic testing, he said it was a waste of time. My jaw dropped. You know, you have to think outside the box nowadays. And this guy is blind to anything new. This is my third Onc in seven and a half years. My major problem with finding a new Onc is, I want to sue the big boys in the neighborhood, who are pretty much a monopoly around here. And, almost everyone is affiliated with them.
My uro told me that we could do genetic testing, but at the present time, he wouldn't be able to do anything with the information learned. We would know what genetic defects existed in me, but would not know what treatments apply to those defects. That made sense to me. And while they are learning new things all of the time, my cancer is changing all of the time too. So, I think the ideal time to get tested is when there is enough cancer cell volume to test the NEW tumor, not the original one. At least that is the conclusion I came to on my own. Still, there is a slight chance I have BRCA-2, which actually has seen a successful treatment plan.
My husband's med/onc at Johns Hopkins referred him for genetic testing due to family history. It came back positive for the PALB2 gene. His m/o called to tell him this and said it was actually good news (if there can be good news with this disease) as they would know which line of treatment to start if/when his PSA starts to rise. We will be asking about the treatment when we meet with him in August.
My oncologist a couple of years ago said they did not know at that time how to use the genetic testing to effect treatment. But he told me that is all changing now and can be an important part of a treatment plan. He just came back from a PcA conference and was excited about the new treatments in the horizon and the promising new developments
My 2 cents, my insurance ( Medicare and Federal Blue cross wouldn't approve Provenge until my psa rose to 2.0 from a nadir of 0.06. So.....once it did they fully approved with zero co-pay. But....lo and behold my Casodex withdrawal brought my psa down to 0.5 where it remains. Therefore I'm going to ride the casodex withdrawal until my psa again rises to 2.0 and then begin Provenge. Once the Provenge treatment is over I will probably begin Zytiga.
First, I wish you well in kicking this bastard. Fourteen years ago at initial diagnosis, I dumped my Urologist in favor of two Radiation Oncologist. One for Brachytherapy, the other for IMRT. Just short of a year, mets appeared and PSA quadrupled, they both recommended that I see a Medical Oncologist who specializes in only Prostate Cancer and Research. I did and after a six month Chemo/Hormone therapy trial, remain cancer free after thirteen years. Lupron injections were stopped over seven years ago. Today I continued to be followed by the Medical Oncologist three times a year. For six years, I have used 4mg of testosterone gel to maintain T at about 400. Heck, I even hear from the Radiation Oncologists checking up on me.
I have zero experience with other treatments and new Silver bullets. Maybe on day, I will........
Gourd Dancer
• in reply to
Wow, just, wow! I'm looking for the same type of Doc.
Thanks. I have my primary care oncologist in Atlanta , but he teams up with my oncologist at MD Anderson. I visit MD Anderson every 6 months for scans and a consult. I'll be in Houston at MDA in early August. Both said not to worry about a 'blip' in my PSA (the rise from 0.8 to 1.1) and that we wait until we see a trend of 3 consecutive months or so it if it doubles.
I'll let everyone know what they say when I come back from MDA in case they have any useful insight that might help others.
I think that others are right that it is not urgent to switch to a new treatment just yet. However it does seem to me to be a good idea to start reviewing options for the future.
A common next step is, as you said, to go to Zytiga or Xtandi. Before those drugs existed, the most common next step was probably to add Casodex, and possibly Avodart, to the Lupron. That approach is not out of the question.
Nowadays some other next steps that are starting to become popular are to try a combination therapy - hormone therapy plus docetaxel or immunotherapy, or to do genetic testing and, if a useful target is found, try the appropriate targeted therapy. Since you are working with a top notch cancer hospital (M.D. Anderson) and probably have an oncologist who keep up with the latest research, these are all things you can discuss with him.
Also, think about your own goals. Are you fairly young(ish) and strong? Maybe you can handle a very aggressive regimen in hopes of getting some extra time. Are you older and/or have other health problems, maybe you're looking for minimal side effects.
Best of luck.
Alan
Here is what I am doing - BAT at JH. [Trial=NCT02090114]
Did CHAARTED at Dx. My PSA went up from nadir 1.8 to near 3, so I did Provenge over the Christmas holidays. My bone mets seem to be resolving.
Today started BAT treatment at Johns Hopkins because of the rising PSA, now 4. Dr Denmeade recently opened an arm to see if moving BAT up earlier worked better. I am quite happy to delay abiraterone. My guess is that the trial will result in a 1 year delay in progression, for about $500 before insurance. A good bargain, and a nice option.
But we will see. At worst, it won't.
Did they talk about BAT at the recent ASCO conference?? Or Prostvac??
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