Discussion about self-prescribed lab results

[Philly13]

I have taken blood tests in the last week from LabCorp that I bought on sale at LifeExtension. I plan on discussing the results with my oncologist on Thursday when I see him before my weekly treatment. Thursdays come around so fast these days. It seems to me like Thursdays are multiplying.

1. On 4/14/21 they collected samples for Testosterone Serum <3 (264-916), Free Testosterone (direct) = .3 (6.6-18.1), DHEA-Sulfate = 24.2 (30.9-295.6), Estradiol= <5.0 (7.6-42.6). All are LOW. LabCorp normal range is in parentheses.

2. On 4/14/21 PSA was 72.6 from Labcorp. I went back on 4/21/21 and PSA was 90.3. I test frequently and the resultant swings are sometimes large. The trend is not my friend.

11/28/2020 16.6Quest

12/3/2020 34.4Jefferson

2/8/2021 67Jefferson (After no treatment 4 weeks COVID positive)

2/23/2021 63.5Quest

3/8/2021 64.12Main Line Health (Annual Physical)

3/11/2021 75.3Jefferson

3/20/2021 76.3Quest

4/6/2021 98.1Jefferson

4/14/2021 72.6Labcorp (wish I knew why this happened)

4/21/2021 90.3LabCorp

3. On 4/27/21 I went for ALP Bone Specific. = 63.5 (7.6-25.1). There is a note that says **Results verified by repeat testings** ALP at Jefferson Weekly Infusion labs on 4/29/21 was 181. On 4/22/21 ALP was 223. On 4/15/2021 ALP was 185.

4. Nuclear Whole Body Bone Scans, and Pelvic and Cervical CT on 2/8/21 and 4/5/21 were stable. 2/8/21 showed progress in metastases from 12/3/20.

AMG509 dosage was increased from .03 to 1.0 on April 8. Jefferson will have put a PSA tube in with my weekly labs prior to infusion on Thursday this week.

There is a lot of data I am looking at but have not been able to turn it into much useful information yet. The DHEA, Estradiol, and Testosterone were an inexpensive package of labs from Life Extension that I bought on sale a while back. It had expired but they were good about renewing the requisitions. I just read about the ALP bone-specific on the forum. It was on sale but still expensive at $149.

I will be discussing it with my oncologist this week. I will bring it in because I find that sending information through the portal is a black hole. I think his team doesn't pass anything along they don't understand. I would get an answer if I emailed him directly, but I would prefer to look at him as we discuss it.

My quest to learn things I wish I didn't have to learn continues.

The dose escalation seems to have stabilized things. I remain optimistic and hope that there will be another increase soon. In a weird way, I sometimes think I feel too good for my magic potion 509 to be working.

Time will tell.

Philly

[noahware]

I'm not sure I understand what use you plan to make of such frequent PSA testing. You are going to get a good idea of how you are trending by doing labs once a month, I would think.

[Philly13 in reply to noahware]

While I will admit to be a compulsive data gatherer, that is not what is going on this time. Sometimes I buy labs on sale which come in packages. I have done monthly PSA since diagnosis. The clinical trial is checking PSA monthly and I didn't use the ones I had in inventory. When the numbers started escalating rapidly I used tests I had already bought to check the trends. I am concerned and want to stay involved and prepare for Plan B. Also, one of the tests came with a package. Then LabCorp came back with a 72 shortly after Jefferson's reading was 98. I was hoping for a continued drop, but that did not happen.

Thursdays are Infusion day. Jefferson will report PSA in the next couple of days from today's draw as they do the first Thursday each month.

While I doubt it has much value for most people, it helps me to test more than might be constructive for others.

My oncologist was not too interested in my new tests. He doesn't think it is the right time to be discussing androgens or estrogens. I am not surprised that he didn't want to engage on the subject for a variety of reasons. For him, it came out of the clear blue sky. The information is in his database now.

I will read more before deciding whether to ask him to engage further.

Best,

Philly

[noahware in reply to Philly13]

I understand. Nothing wrong with "too much information" as long as it doesn't drive you crazy trying to figure out what it might mean. I think docs prefer as little info as absolutely needed, frankly.

I started transdermal E2 and my doc is not at all interested in testing E2 levels! He just wants to see T, to know if I'm at a castrate level. I want to see the E2 out of curiosity more than anything actionable. But sometimes I think docs have too many patients to have a lot of intellectual curiosity about what's happening with each and every one.

I regret not insisting on monthly labs with my bicalutamide monotherapy, because I would have caught its failure more quickly than I did with the 3-month lab intervals. After insurance, my cost is $30-40 for labs including PSA, T, comp. metabolic and CBC + diff., and I have no prob shelling that out every month.

[BluesmanNick]

My quest to learn things I wish I didn't have to learn continues. 😉👍

[dockam]

Hi, I've used privatemdlabs.com/ since 2010 to order PSA via LabCorp . Had a 4.7 in 2010, and didn't restest til 10/2014 and that result was 552.2. It was probably PCa in 2010, but I thought being a marathoner, at 53 years old, and eating a mostly plant based diet thought that I was protected:-). So, in 2015 had mets to L side ureter lymph nodes!I still do privatemdlabs and get PSAs at a nearby LabCorp. I get my results the next day and I have access to all that I have done.

Fight on

Randy