Background: Diagnosed 25-months ago, Stage 4 Metastatic PcA, Gleason 4+4=8, Bone mets in T8 vertebra and small spot in pelvis. Had radiation treatment in spine for pain, Lupron since diagnosis, 6 rounds of chemo (taxotere) that finished 18-months ago (Stampede).
My PSA at diagnosis was 227. The first month it dropped to 9.4 and dropped to 0.1 within 4-months. Stayed at 0.1 for about a year. Been rising slowly for 9 or so months, increasing about 0.1 each month. Leveled off for 3-months at 0.8. Jumped from last month to this month to 1.1.
When is a rise enough to raise concern that my cancer may have started to return? I'd greatly appreciate any insight you might have.
Thanks!
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JamesAtlanta
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Well clinical trials generally require PSA>2.0. So not much point in worrying before then.
You can get radium223 for bone lesions after your PSA progresses past 2.0 (as standard of care). But it might be better to get Provenge at that time, since radium can cause a decrease in PSA and then you are not eligible for Provenge till it goes up again, and they say do Provenge early. If PROSTVAC is approved by then, maybe do PROSTVAC. Or get in a clinical trial with PROSTVAC. <suggestion>Then do Radium. It's not good to have bone pain. That is a late symptom I believe. </suggestion>
<crazy> If you do Provenge, see if they will also do pleurixifor at the Red Cross. It may help clean out some cancer cells from the bone. (See Dr Pienta's trial.)</crazy>
I downloaded the app you suggested. Very helpful. My doubling time is 6.13 months or 0.51 years and my velocity is 0.01ng/ml/month. The graph on the app has a big 'hockey stick' at the end of it. What do you make of these results? My oncologist said not to worry... I'm inclined to heed his advise since I'm having all my scans at MD Anderson in early August as part of my regular monitoring. But I would really like to know when it's time to start considering next treatment options.
Appreciate any insight to have. And thanks for your earlier response.
"May have started to return"? It never left.
For example, I assume that you still have your prostate. But I do know what you mean: may be waking up. Yea that will happen eventually, but check the clinical trials. Get used to that web site. At the momentm I think the hot trial is NCT02090114. But tomorrow it could be a PSMA related interventional trial, or a combidex type of imaging trial. There are many game changing things cooking. Just try to stay well positioned for another year or two: exercise, apple/day, statin, low carb, no sugar except if someone gives it to you, and try not to die of a heart attack.
I really appreciate you taking the time to respond. 😊
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Hi hidden
I love looking at your conversation my journey is almost exactly the same as yours. Had the beast for 18 years and don't have any friends left unfortunately they all went away. My PSA is rising and I'm currently on lupron and casadex. Did you say that if you go off the cast of x that the PSA may come down.
I’m afraid hidden is hidden and will not come back...
As for me, I’m into my PCa journey for over 5-years now. Undetectable and on a holiday. I was told that if my PSA starts to rise again I would immediately go to UCLA for a PSMA PET scan. And then I’d start LU-177, perhaps in the UK or Germany.
Hang in there! Your journey has been amazing and is an inspiration to us all!
You sound like what I have been going through. High psa that dropped to 0.1 and stayed there. I also went through the Stampede trial. I was on a Lupron, Casodex maintenance program for a year when my psa suddenly went from .1 to .7 to 1.8 to 2.0. When it went to 1.8, I was taken off Casodex and applied for Provenge treatment, (approved). My last blood test a month ago showed my psa dropped to 0.5 from 2.0 as a result of a favorable Casodex withdrawal which took 2 months. So, I'm going to postpone my Provenge treatment until my psa rises once again to 2.0. My oncologist tells me that some men have a favorable Casodex withdrawal that lasts anywhere from 4 months, up to a year. I'm going to ride it out as long as I can. When, and I hope it's a long time into the future I finish up my Provenge treatment, I will probably begin ZYTIGA® (abiraterone acetate). When Zytiga runs it's course, I'm leaning towards another course of taxotere before I move on to XTANDI® (enzalutamide). My lowest psa was 0.06. My highest was 840 with 4 bone mets and numerous lymph node involvement. The way I look at it, I'm just getting started. I run 4,5 miles, 4 days a week, and lift weights the other 3. I'm 100% vegan, no sugar and take 6 different supplements. I feel great!
That makes me feel so much better. Your journey does sound a lot like mine. Other than my worrying about my rising PSA, I'm in generally good health, too. I'm riding my Pelaton bike 45 minutes a day and watching my diet carefully. But I think I'm going to change my diet even more given your comments and others.
Given the way you have laid out your potential course of treatment, are you going to one of the large specialty hospitals? I travel to MD Anderson every 6-months and also see my local oncologist every month for labs.
Thanks, again! And good luck to you on your treatment journey as well!
I go to 3 different locations. 1. University of Michigan Cancer center where the main decisions are made. 2. Karmanos Cancer Institute in Detroit where they do all that weird genomic testing stuff. I go there to allow the researchers to amuse themselves with my cells. 3. Ann Arbor veterans hospital where I get all my meds for no cost and allow the new oncologists to have a sense of self importance.
Here are the supplements I take:
Turmeric, Cayenne, Berberine, Pomegranate extract, Green tea extract, and Grape seed extract. I also take vitamins as directed. Finally I eat broccoli EVERY day!
The way I look at, someday we are all headed to the same conclusion, why waste time worrying about it? You and I have many years ahead of us, why waste time thinking about a psa number? It could be a lot worse. My brother in law went in and had a complete checkup, heart, x-rays, mri, etc, etc. They told him he was in perfect condition. Well 4 months later at age 62 he was outside working on his lawn. They say he was dead before he hit the ground, massive heart attack. At least we have a chance to say goodbye someday. When they put me in palliative care, I might get concerned. Until that day, I refuse to worry about numbers, scans, etc. Live it up!
Would love your feedback. I was diagnosed in February 2016 with two spots in the prostate. PSA 6.5, Gleason 8 which Johns Hopkins downgraded to a 7. The 3T MRI showed nothing outside the prostate. I had high dose Brachytherapy at St. Josephs Winship Cancer Center here in Atlanta. PSA has dropped to 1.0 Urologist and Oncologist said it may take 2 yrs to get really low. I don't like just sitting around know knowing what the PCA is doing if anything. I am thinking about a Axumin PET scan. Is this a good idea or should I wait and continue to see what the PSA does?
I also had Gleason 7 (4+3) and chose prostatectomy, so not sure, but I recall reading during my research in 2014 that with seeds the PSA may not go to undetectable. Perhaps it is different with the high dosage ones. Not sure if the Auxmin scan is in order, but you might want to find out at what PSA level it becomes likely to find something that is there. I had a C-11 acetate scan with a PSA of 0.2 and it showed nothing but my PSA rose to 0.3 and I started salvage treatment. Also in case you are not aware, there are multiple support groups in the Atlanta area and attending might be helpful. One serves dinner and wine (got to be some perks that come with this damn disease). Message me if you would like more information.
I recently learned about two of the support groups. I am now getting emails regarding their meetings. One near Howell Mill and the other in Johns Creek. What did your salvage treatment consist of?
I did six one month shots of Lupron and 39 sessions of IMRT (70.2 grays) over eight weeks The Lupron started 3 months before the radiation. Both finished by the middle of March this year. Now just watching to see if they did the job. As to the support groups, I attend the one that meets in the Piedmont West Building on Howell Mill Road. We would love to have you join us on the third Thursday of each month at 6:30. Please feel free to contact me at newtorunning65@gmail .com for more information.
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