My father just hit the 6 month mark today of being on the lupron and zytiga. His PSA came back less than 0.02 and I am so happy about that. But a PET/CT scan he had done a few days ago came up that he has 3 osseus lesions in his bones. A bone scan that was done shortly before that came back negative.
I know that there are some types of prostate cancer that give off very low PSA, but is it possible that those lesions aren't actually cancer?
What can my father do about fatigue? He said today that most days he just wants to sit in the chair all day. He keeps pushing himself everyday however. Yesterday he dug up the whole front yard, planted flowers, and we did some painting and wall papering. He just seems exhausted. I ordered him ginseng and he is now own 2000mg of of American ginseng. This is what was given to cancer patients in a study that i read and it improved their fatigue by 20 points on a 100 point scale compared to the placebo.
Any input I would be very thankful for.
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BarronS
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Thank you for the reply. They are very small spots, so i recommended he talk to his Onc about radiation. He gave him the option but was convinced not to do it because his PSA was so low and he's afraid of the side effects of the radiation.
I want him to get it done because I fear that this spots aren't giving off PSA and harbor cancer that is castrate resistant. Maybe that's all pseudo-intellectualism, but that's what i'm worried about.
I tried explaining today but we got into it over the radiation. So I don't think he's going to be open for that right now.
I agree with our friend, Nalakrats - radiation like this has no significant side effects. When I was going through radiation I kept working full time.
I’m on ADT + Zytiga and prednisone. It definitely causes fatigue. The main way to combat this is with exercise. Walking and weightlifting helps a lot! Sounds like he’s getting some exercise in spurts. Perhaps a regular, consistent routine that is not just centered around chores will work better. When I retired I started going to the YMCA almost every day - I do the elliptical one day and weightlifting for 45 minutes the next. Nothing too hard. Just do as much as you can. Definitely helped my energy level...
Hope he feels better. I’m sure others on our site will have great suggestions, too!
Congratulations to your father on the 0.02 PSA. That's an outstanding number and indicates an excellent response to the therapy.
Tiredness is a problem with all androgen deprivation therapies. As I understand it, the best treatment for it is a mix of regular exercise as JamesAtlanta recommended, and an hour or two of extra sleep each day. It worked for me.
I did a little searching for testing for neuroendocrine cancer and found that there different ways to look for the disease. One way is to biopsy the lesions and examine the cells under a microscope. I suspect that that would require a pretty good pathologist to find and recognize this uncommon cell type. A possibly easier way, at least initially, might be to look for proteins in the blood that are indicative of neuroendocrine type cancers. See: ncbi.nlm.nih.gov/pmc/articl... for a heavily cited article on neuroendocrine PCa.
That article lists some of the blood markers. I searched for one, "chromogranin" and found labs that provide testing for it. See for example: labtestsonline.org/tests/ch... .
If your Dad does have neuroendocrine disease it may or may not be in the lesions identified in the last scan, and radiating those lesions may or may not help much. You'll need someone with a lot more knowledge than I have to advise you on that. You might consider a second opinion from a doctor, perhaps a radiation oncologist, at a research hospital where they stay up to date with the latest research. See: cancer.gov/research/nci-rol... .
Your father was unlucky to develop cancer but he lucked out in having an energetic daughter working on his behalf.
Not a Dr, but I don’t think osseous lesions are necessarily PC mets. I would ask your MO or Onc about a PSMA scan. Mine identified a bone lesion at T10, but it was not cancerous. On tiredness, I would recommend exercising early in the morning before the first pill when T is probably the highest.
At those PSA levels after such a short duration one might conclude the lesions to be dying cells...or false positive....neuroendocrine disease creeps along soft tissue as I understand things....but one must always temper reason with the 'one man, one cancer' caveat.
I have MS hubby has prostate cancer - so we both have fatigue issues - and the best thing for it is exercise. We make the gym a priority - on Monday, Wednesday and Friday he walks the track with me then does a light weight routine while I stretch, Tuesday and Thursday are my water aerobics and since he is not a water baby, he does higher impact stuff and heavy weights that I don't do well, and on Saturday and Sunday we let all those weekend chores count - unless we can find a way to put them off - like a stroll at the zoo Mainly it helps to have a cheerleader - and by doing these things together (while making sure we both have time for the stuff we like) we have developed a pretty good system that does help with fatigue.
I have taken similar PC meds and found that Acupuncture relieved almost all of my tiredness so that I have had 75-80% of my former energy!
the energy was a constant thing; it seemed that as long as I had the appropriate acupuncturist who understood PC, etc. the energy lasted. I saw her 1-2 times per week along with taking herbs I got from her. (Lucy Postolov in West LA; search her and you'll see her qualifications.) Hope that helps you too!
(previously, my energy level was probably 10% of my regular energy)
Hello, " Super Dad seems to be doing very well, great news about his PSA. I guess that he has always been active, that's why he continues as before. We all of us who are on this treatment must remember that it changes our body, so we are perhaps not as strong as before.
JamesAtlanta was absolutely correct, exercise is best, it helps rebuild your stamina.
I was flaked initially on a similar treatment, however I didn't pack up either, but since I have been on Zytiga, the PSA dropped through the floor and I am definitely better energy wise.
Keep supporting Dad, but he will fight this his own way and eventually reach an equilibrium.
Good pain meds, lots of food he likes. Me it’s pie and ice cream. I know what he is going thru, my father at 87 gets up eats breakfast and then lays back down. I have to force him to get up and go with me, we go somewhere every morning just for something to get him out of the house.
He is doing the right thing to keep moving. Fatique may get better over time. Ill go good for a week then bam... it will hit me for a day or two. All part of new normal.
Excellent PSA! I too had a PET/Axumin that showed one o. lesion on my spine, the same site as two prior surgeries. It was still there after chemo. Second PET/Axumin lit it up. I agree with my friends on this site: I had it irradiated (along with some lymph nodes). No real side effects; maybe some fatigue.
Exercise is ALWAYS good. Do it even when it's tough. The hardest part is getting started. Push yourself through the first set and it will get easier. Trust me on this.
Ginseng helps for me, but isn't 100%. I've had spot radiation for bone pain. Worked great and no side effects.
Apropos of nothing, I had my PSMA scan for the Lu-177 clinical trial Monday. Gallium-86 and they put a Geiger counter on me afterwards and I was radioactive! Spiderman got his super powers from being bitten by a radioactive spider. If I get super powers, I pledge to always use them for Good.
Attitude is everything; there's a new day coming tomorrow!
Dextroamphetamine works for me. It's been 18 years since diagnosed with Gleason 9. I've done intermittent antiandrogen and 25 years ago I self diagnosed myself with attention deficit disorder went to a psychiatrist with symptoms he gave me test which confirms ADD. Bingo dextroamphetamine will get you going and when it drops you it is sudden.
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Mainly it helps to have a cheerleader - and by doing these things together (while making sure we both have time for the stuff we like) we have developed a pretty good system that does help with fatigue. 
Update on my fathers 1st Lu-177-PSMA-617 treatment 
Simple Prostatectomy
looking for input regarding my father‘s situation
