June 12th labs from MSK compared to May 6th labs had mostly encouraging information. PSA reduced from 47.13 to 13.3. Testosterone reduced from 987 to 1. Acid Phosphatase reduced to 13.3 from 38. Still high but better.
There was one negative result. Alkaline/Phosphatase rose to 149 from 82 which was up from 55 in January.
I am concerned about the increase in alkaline phosphatase, as my understanding that is a marker for cancerous growth in the bones. For the moment, I am attributing it to a variety of new elements introduced in my body over the last month. radiotracers for scans, firmagon loading dose and 1 injection 30 days later, Zytiga/prednisone for 5 days by June 6, and an escalation of vodka consumption and reduction in aerobic exercise as I struggle with the emotions of this new phase.
It is difficult to push to my elliptical machine and the gym since discovering the progression in metastatic disease. I did skip the vodka and did 1 hour 20 minutes on the elliptical last night followed by a sauna session. I slept better last night than I have in recent memory. I vow to force the exercise now. It makes me feel a lot better but I guess the reduction in testosterone changes the channel from a lifetime of aerobic exercise motivation. It pleases me that I still have good stamina once I get started.
The reason for the post is to collect thoughts about alkaline/phosphatase as a marker for cancerous growth. Is my theory on the volatility of lab results in the early days of hormonal therapy reasonable.
It seems that the doctors want me to have labs done every 2 weeks for at least a couple of months.
I am 65 and the 2 months of this treatment have been reasonably tolerable, physically. Having said that, I miss my testosterone! I am used to the competitive fire that has been part of my identity since being a little boy. Adjusting will take time.
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Philly13
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You could be having an ALP bounce after starting Zytiga, which may be followed by a PSA bounce. These bounces actually correlate with better survival. Check out this study, and don't freak out quite yet.
There will be SIX doctors from MSKCC presenting at the NYC Prostate Cancer Patient Conference on Oct 5. Please get your tickets to this now...it will sell out! Click here: eventbrite.com/e/prostate-c...
Thanks for taking the time to respond. It is very helpful. I know the vodka is not a good idea and had drastically reduced consumption until recently. I abstained last night and will continue in that direction. I have vowed to myself and now publicly to get back into exercise. It requires more effort now, but based on experience it is worth it.
Great response! Sometimes one gets flares in some biomarkers with new treatments. It sounds like you're on top of it. Great docs at MSKCC! Great too that you are sleeping better with exercise.
I did the Livestrong program at the YMCA . It made me committed to it for 12 weeks and really helped me a ton. I get the not wanting to excersice from being lethargic like never b4.
Use your left over Vodka for rubbing alcohol only. We all get down in the dumps but pick your ass up off the floor and get on the elliptical and as women use to say to me when I was younger "work it baby, work it"....(Now my wife means with the vacuum cleaner).
"I am used to the competitive fire that has been part of my identity since being a little boy."
Want competition? "BEAT FCUKING CANCER"..... And no more and, if or buts... make one for the Gipper.
Hahaha! Thanks for practical suggestion about left over vodka. Just finished a 5 mile jog outside. Really slow time but I feel great for having done it.
Beat fxxking cancer is going to be my mantra as I resume meditation after a 60 day hiatus corresponding with hearing results of PET scan.
I too am at MSK but have a different history of treatment and response over 7 years. But, I can totally relate to the effects of testosterone loss. I used to be very active. Let’s face it- it sucks. But, I am more than willing to give my my T for a longer life.
New labs as of June 27 are headed in a positive direction.
1.I took a PSA test on my own as local comprehensive tests ordered by Jefferson did not include PSA on June 27. The result is 6.8. Last few momths history:
1/23/20192.8quest
4/3/20195.3 quest
4/12/20196.3Penn
at time of Fluciclovine PET showing numberous METS
5/3/201941.3Quest
5/6/201947.16MSKTestosterone = 987
6/4/201911.4Quest
approximately 30 days of Firmagon a few days of Zytiga
6/12/201913.3MSKTestosterone = 1
6/27/20196.8Quest
I test often because I don’t want to lose time when it goes in the wrong direction. My Pca is aggressive and seems to get worse quickly. Doctors and insurance companies are not interested in testing PSA as often as me. I asked them to add lipids to the metabolic test and was rebuffed there too
2.The values of the comprehensive labs seem fine. Alkaline Phosphatase, in particular, was reduced from 149 on June 12 at MSK to 110 on June 27 at Quest. 115 is the top of normal for this measurement. I understand that different labs can provide different results, but the trend is good.
3.Carbon Dioxide from the comprehensive labs is the only value above the range. The value is 34 where they have 32 as the top of the range. This does not seem like a big deal and is likely related to all the new medications I am taking.
At least that is what the clinical nurse practice assistant to my local Doctor says.
At this time the trend is a friend.
I am getting used to the way I feel. I am less tired and significantly less depressed.
PSA as a marker seems to be a volatile and mysterious indicator. I have a friend who is 7 years in. Had the surgery, his PSA went to 60 he felt fine, and nothing showed up on what ever tests he took. West Coast of Florida Doctor told him not to focus on PSA and worked on diet and supplements. He started to feel lousy a couple of years later. No stamina, shortness of breath, back pain, and big ugly spots on his skin. Changed doctors and finally got a new PSA. The result was 3500. He is being treated with Xtandi and Zometa. He feels much better, scans show regression in Mets but his PSA is still 400 or so. He was on his way to play golf last time we spoke and very up beat. They are watching closely but he says they advise no change as long as test results are positive.
I don't know what to make of his experience even ignoring the nutritional advice portion of this, which was ridiculous. He ate nothing but red grapes of an extended period of time.
Now that he is on medication that has reversed Mets, that is great, but I can't help but wonder why his Doctors don't seem more concerned about the relatively high levels of PSA.
There are many posts wondering what to make of PSA results and comparisons. Sharing these anecdotes might add to uncertainty. A tentative personal conclusion pending more information is that PSA is one indication of cancerous growth that should be accompanied by additional medical analysis with experts supervision from trusted Doctors.
Pro tip. Red grapes taste good, IMHO, but don't bet your life on their therapeutic value.
Responses to my original post were all very valuable.
Thanks again to all who share.
Philly13
PS from a basketball junkie. The action in the NBA free agent market this week has been mindblowing. Go Sixers!
As a result of some of the helpful comments from fellow warriors I began tracking the blood levels below in addition to my compulsive monthly focus on PSA. The oncologist has had me getting a comprehensive metabolic test every 2 weeks for the first 3 months on Zytiga to see how it affects the kidneys and liver.
I am interpreting these numbers as good indications that cancerous growth has stalled and may even be reversing. There is a part of me that doesn't trust good news as it relates to my experience with this disease.
I reported the data to my family last night as all good news. My 30-year-old son responded by saying that he knows me well enough to figure that I am skeptical sometimes but I should remember to celebrate the wins.
He is a perceptive young man. It is wise advice. Celebrating good progress is what I will do.
Name 6/6/2018 4/12/2019 5/6/2019 6/12/20197/25/20198/9/2019
Alk/Pho 56 55 84 149 84 79
38 - 126 U/L
ALT 24 14 19 29 16 17
17 - 63 U/L
AST 26 15 19 24 15 20
15 - 41 U/L
Glucose 101 92 90 96 99 96
70 - 99 mg/dL
LD120-150 U/L 198 170 119
PSA 5.8 47.6 13.3 6.3 6.4
There are a lot of people on this site to thank for helping me in every way.
The words Thank You always seem inadequate, but it is all I got.
Damn, the formating didn't survive the post. I don't think I can edit it and the dates aren't as important as the trends. June 12 ALK/phos was 149. August 9 it is now 79.
LD was 198 on May 6, 170 on June 12, and 119 on July 25.
PSA has stalled in the low 6's. Tom67inMA predicted it might.
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ALKALINE PHOSPHATASE NUMBER HIGHER
