Last tests were done on 23 July when he was only on orgovyx. At the time his PSA was 1.177 , testosterone was 26 , ALP 325
Started Xtandi around 6 weeks back- for a month at 80 mg and since the last 2 weeks at 120 mg.
Latest results. - PSA 0.069 Testosterone 41 , ALP 57
PSA and ALP have come down 🙏🏻🙏🏻 but testosterone has increased from 26 to 41. Wondering why that would happen as I was expecting it to be lower than last time’s 26.
His potassium is a little high at 5.4 , BUN slightly high at 22 ( creatinine 0.8 ) and urine says trace protein - this has not happened earlier - Could it be an effect of the medicines ?
Should I increase the xtandi dose to the full 160 mg ?
Sending love to all 🤗
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Tinkudi
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Thanks for sharing the latest on your Dad Tinkudi! PSA <.07 is looking good! (Three figures of significance is nice!) And bravo tracking testosterone. I had to persuade my doctor to add it to my blood panels only this last summer. A continued success with fine-tuning your Dad's progress! ❤️
I have not ever taken Ivermectin, Tinkudi. I have read about it and it's interesting. And of course super controversial. I'm not willing to go that far yet. In terms of alternative paths either incrementally now or as a change in the future, I am interested in the results of the PATCH trial and estrogen.
One MO said due to his age give 80 mg and then we see how he does after 6 weeks. The other MO said can initially start at 80 but to scale it up to 160 soon. So I started with 80 and increased to 120 as of now. He seems to tolerate it well except some hot flashes and some muscle aches. Should I increase it to 160 ? I am scared of the seizures side effects. Do you know if it may affect kidneys - as urine report says “trace protein “ and he has never had that before.
Thanks in advance Allen 🙏🏻 I am always so glad when you respond. Btw , I had posted dad’s NGS report. Were you able to see it ?
What advantage is there to treating your father as having a worse performance status than he has? Age should not in itself be a reason to undertreat him.
No, I do not have his NGS report. It is usually inconsequential.
TA - I have tried in vain to get some science behind Xtandi dosage which would enable me to agree with your comment - maybe you can point me. The clinical trials determined that 160 was the highest dose before risking serious side effects (actually 180). But when the cancer is in remission - or at least on the way down, I cant see that 80mg is insufficient. No trace of change in PSA decline between 160, 120, and 80 in my tests. Also plenty of support from my onkologist and the MO Tinkudi refers to.
I was on 160mg for 2 months which took a rapidly increasing PSA down from 4.7 to 0.61, then I was on 120 for 8 months and a PSA of 0.14 before starting on 80mg. All this time there was a continuous predictable decline which tells me that the rate of sucess of the Xtandi dose did not change. Been on 80mg for 10 months befoe a gradual rise set in at a much lower rate than before.
Your oncologist does not seem to have a proper understanding of the natural history of cancer. Consider switching oncologists before it's too late. PSA is not your cancer, It is only a biomarker. When metastatic patients only take ADT, PSA may become undetectable. However, when an ARSi and docetaxel is added, the patient lives longer - much longer.
1. It may aid your understanding if you think of cancer as a bacterial infection, in part. Just like bacteria, cancer cells multiply rapidly. This enables it to evolve rapidly to gain resistance to whatever you throw at it. As with bacteria where you must take a full dose of antibiotics for the required amount of time, or else you will cause an antibiotic-resistant infection, cancer cells will evolve into a resistant-type faster if you take lower dose or start and stop after too short a time.
2. With bacteria, it is often only necessary to render the infection bacteriostatic - the bacteria can no longer replicate. At that point, the immune system takes over and eliminates the rest of the infection. With cancer, the immune system recognizes the cancer as "self" and fails to eliminate it. This is particularly true of prostate cancer, which is known to be "immune cold," meaning most immune therapies don't work at all or work only poorly.
3. Cancer-killing therapies must be sustained at maximum- tolerable dosage to keep the cancer cells from replicating as much as possible. However, they drive the cancer into a self-protective state called "senescence" where they continue to evolve but do not replicate. Tumors do not expand and proliferate and PSA may decline - you call it remission, I prefer to think of it as the cancer preparing to grow and becoming resistant. It is necessary to avoid senescence as much as possible. This is why triplet therapy works so well.
Thankyou so much for that input TA - I see your point. Yes my understanding of remission is not that the cancer is gone - but that it is reduced to a minimal size and is just biding its time to mutate and grow again. I understand also that triplet therapy makes sense when the cancer is growing, but I also thought that docetaxel only works on rapidly growing tumours so it shouldnt be a part of the therapy in resistant cancer until the scans show some growth. My oncologist tells me that docetaxel is next but we wait for psa to reach over 2. I assume docetaxel is just 6 sessions and not continuous like the ADT and Xtandi that I am on at present.
Seems sensible to do research into the therapies that flag the cancer so the immune system recognises it. (I have a strong immune system). I still wonder if the avoidance of senescence is best using the "as much as tolerated" path, or whether the "enough to do the job" is a factor when the cancer is in remission. I am thinking of going back to 160mg for three months to see if it affects the PSA curve, which for me is smooth and predictable and slowly rising. This will tell me if 160mg is doing a better job than 80mg which may be more than enough to keep the cancer in check.
No - I have a strong immune system but its not much help against PCa (see TA response to me). I dont think the MO fraternity have much to go on as regards dosage - the standard seems to be - as much as tolerated with 160mg being a max - but they seem very willing to drop the dosage to 120 or 80mg if patients complain about the side effects. There is a lot we dont know about this. (I am not sure that big pharma would be so interested in clinical trials to find out if there is a lesser dose which is more than enough to do the job compared with the maximum tolerated dose)
" I still wonder if the avoidance of senescence is best using the "as much as tolerated" path, or whether the "enough to do the job" is a factor when the cancer is in remission."
Senescence is the cancer cells avoidance of destruction. You can't destroy more cancer cells by taking less. That only increases resistance, just as taking less antibiotic causes bacterial resistance. "Remission" is not a medical term, it is a figment of your imagination, as you grasp for straws. IDK why this is such a difficult concept for you to grasp.
"I am thinking of going back to 160mg for three months to see if it affects the PSA curve, which for me is smooth and predictable and slowly rising. This will tell me if 160mg is doing a better job than 80mg which may be more than enough to keep the cancer in check."
Just bizarre that you could still think such a thing after I just explaiined that PSA is not cancer, and how low PSA does not give you any clue as to the effectiveness of your apalutamide in slowing progression.
I give up. Your fevered imagination is no way to guide your health. Good luck!
PSA is the only indicator we have - short of scanning, and is univerally accepted as an indicator PCa progression. Yes PSA is not cancer - and some cancer can develop without showing PSA - but PSA is all we have for frequent monitoring. Would you have me on max dose of Xtandi and continuous docetaxel just in case I have non PSA tumours growing. That would surely zap any thoughts of QOL. I prefer to use PSA as an indicator and use scanning to confirm any changes. Being asymptomatic after 5 years I am not thinking of getting scans every 3 months - but I can get a PSA test every 3 months. You appear to be rubbishing the use of PSA as an indicator. why should you do that - this is SOC - and we all know PSA is not cancer.
I just explained how you can get zero PSA just with ADT alone. PSA is a just biomarker. It doesn't tell you how long it will last before the cancer progresses. We know that from randomized trials, not from any one patient's personal experience. How can you possibly know what would have happened had you taken a more effective dose? You can only know that because patients who take inadequate doses as you have progressed faster and live shorter lives. You can't know it from tracking your PSA or by any type of imaging.
"patients who take inadequate doses as you have progressed faster and live shorter lives." Now that is something I can relate to - do you have any references I can read about that?? - and thanks for not giving up - we advance our understanding through discussion.
PSA is the single best biomarker for progression. Stone Artist was abusing it to foolishly do his own n-of-1 trial. An individual's PSA does not replace the clinical trials that were done.
The testosterone increase is normal. First count was ADT only. Then you added a 2nd gen ARSI. The cancerous cells felt the squeeze and sent an SOS message to the brain. Brain summoned the pituary gland which in his turn ordered the testes to produce more. 50% to 100% increase in total T is normal when starting an ARSI. In turn, this elevates the estrogens and can cause gynaecomastia. It sounds like a paradox to get gynaecomastia when T is at castration level, but if you search the forum, like you routinely do, you will find people that went through it. There is the plausible explanation that it is the Estrogen to T ratio that counts and not the individual absolute values. Good hunting.
From my personal experience this did happen, but not overnight. It took years, not months. Naturally, in the other end of the scale, the supra physiological, that is. Ignoring a T count that can be a lab error (over 3000 - not a typo) it hovered around 2500 for more than one year. Now, it is in the range of 1500 to 1700, all endogenous. My testes are working overtime.
I am not advising you to increase, but it is more than clear that you will increase because fear mongering is working on you. Increase will probably rise T, so you will follow your MO and switch ADT (no bolts by special request).
Isn't this what Stoneartist did? But, also isn't it risky as per: "... because patients who take inadequate doses as you have progressed faster and live shorter lives". Wait for the naysayer to produce a randomised double blind peer reviewed trial where they trialed it head to head with the maximum tolerable dosage and then decide accordingly. But, it may take some time.
Curious about the T. My potassium is always borderline high or slightly high on just Lupron. Creatine gets low over time(I'm on plant based diet) unless I supplement, so I supplement with 5 or so mg per day; I can step up or ease back as needed.
Met MO today. Said to repeat T after 2 weeks and if still rising to change the ADT. Do you know why your potassium is borderline high. Dad’s is too this time
I want to briefly reply which may end up sounding offensive.
I don't care about side effects that "might" occur or even those that "will" occur with my treatment. I need the recommended treatment. We will deal with the side effects if they come up to stopping treatment if necessary.
In Oct. 2019 I was told 3 months to a year of life. If I made it to a year I might make it to 2 years. If I made it to 2 years I might make it to 5 years. I was elated when I was offered my first treatment. I thought I would be off to hospice instead. I guess a nearby expiration date makes it easier on me because I don't worry about side effects that will gradually cause more health consequences 10 years down the road. And I'm someone who before all this used to shun most prescription medicines and over the counter and always researched heavily before starting a drug treatment. Not anymore. Give it to me. Kill that cancer the way the majority of guys in the trials had it killed.
I'm doing well but I'm taking it all and enjoying my life in the moment without a lot of second guessing, distrust of science, pharma, to take up time in my life. But I always was a science person. I could never be a doctor but I was able to be a hospital corpsman in the navy and briefly a paramedic in civilian world. That could sound dumb. I don't insinuate I have credentials it's just that when I need the medical world my past experience has made me trust it and feel taken care of.
Isn't your father's condition serious enough to warrant following medical science best practices?
I need life extending treatment which has been determined by medical science. Is it perfect no. If it was perfect there would be so much more knowledge of cancer that their would be a cure no matter what stage.
I hope my rambling can be summarized by "follow the science".
No matter what I hope for the best for your father and you. You seem sharp so he's in good hands.
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