My husband has been on "vacation" from ADT, zytiga and prednisone for a year. His PSA is tested every 3 months. Today's number is still <0.1 ng/ml. However, his T was slowly building...17, 24, 42 and now dropping to 34. Should I be worried?
Low T: My husband has been on "vacation... - Advanced Prostate...
As long as the PSA value is that low, you do not need to worry. The testosterone level varies during the day. So if you do not get the blood draws at the same time of day this could explain the variations.
42 to 34 isn’t very significant
The testosterone is still at castration levels.
Are you worried that it is not rising? The older we get the longer it takes to recover, if at all. Does he feel better off the drugs? That's all that really matters.
We would need to know more: his age, his testosterone at diagnosis (if known), how long he was on ADT before the vacation, and if this vacation is his first. Also his basic health, strength and fitness. These are all important factors.
His T may continue to rise or it may not. Neither would be unusual, but it’s nothing to be concerned about health wise. If he is looking for relief from side effects that’s a different subject.
Eventually a rise in T COULD be followed by a rise in PSA, which would indicate growth of prostate cancer cells. His prostate cancer may not be a threat for months or even years. The key is to keep an eye on the PSA, which is an indicator of growth of prostate cancer. In my own case, I had a four-year vacation from Lupron, while my T rose to over 200 and my PSA gradually grew to 35, at which time scans showed possible metastasis, and I resumed ADT. My PSA then returned to <0.1 for the past few years. But every case is different, and everyone has their own decisions to make. What I did was, in retrospect, dangerous, but so far, so good.
Are you metastatic to bones or organs?
My mets seem to go from lymph nodes to bones, (at least that is what I have felt). I treat them with my own methods and they go away, At this time I don't have any known metastases. I presume they are there but mocroscopic. None in organs.
Interested what those methods are?
I'll be happy to pass on whatever you need to know. I am doing several things and they were complex in the beginning but now they are down to more or less routine.
First is hot showers. I believe that was what eliminated the metastasis spots on my skull in 2016. I had a few spots on my skull that showed on scans. I used very hot water on my skull, during a shower, which I did not measure temperature for but now I would estimate it was in the range of 110 to 120 degrees. I have since bought thermometers but they no longer work, broken or dead batteries. The one I use lately is like a dial with a metal probe, a cooking thermometer. i understand now what it takes, and how that range of temperatures feels. It is painful, but I use the very hot shower method for short periods, so it is a bit painful, but tolerable. When I used it for skull mets, years ago, I usually used it for a count to 25. "One million, two million, three million, etc." It is not the hottest temperature on the shower valve, but I guess I can define it as very hot. It feels annoying but it does not burn. It turns my skin red for a short period, and then leaves no side effects.
Every shower valve is different but in the US, they are required by law to limit the temperature to 120 degrees F. Also the water heater at my home is set at normal. I have measured the temperature and I have pretty much learned how to make it "very hot" most of the time, without actually measuring the temperature with a thermometer.
One of the spots on my skull kept recurring, (a lymph node behind my left ear), and it caused headaches when it grew. So I used a more powerful heat method and after months of recurrences, I used a hot 2.5 pound weight from my barbell set. I put in boiling water in a frypan, then cooled it to roughly 150 F. Then I wrapped it in a kitchen towel and put under my head, on my pillow. The towel allows moderation of the heat. The objective was to get the temperature inside my skin and to the skull bone level up to 110F for an extended period of time. Often it was unbearably hot so I lifted my head for a short time and then lowered my head. The barbell weight stayed at very hot temperatures for a long time, ten minutes or so. Each time I did that, the headaches vanished and the pain disappeared...for days or weeks. But it took several attempts to eliminate it entirely. I have not had recurrence of that spot in many months, perhaps a year now. I believe it is gone, and the cancer cells have died, and that problem is solved. Just to be sure, I heat with very hot shower occasionally.
In 2022 I had two remaining pain spots on my body, side rib and spine T9 between shoulder blades, which I have treated similarly. The pains have come and gone, for years. They are deeper below the skin than the skull mets. The hot barbell weight and showers did cause their pain to go away temporarily, but they kept coming back pretty regularly every couple of weeks. In the end of 2022 I applied magnets, and they seem to have gone for good.
As for the magnet method, I taped five 3/4" diameter refrigerator magnets together to make a sort of patch, which I taped on the rib lesion. It seems that after two days the magnets somehow kill the cancer cells. This is a bit complex. One must use the north-pointing face of the magnets against the skin. I hang the magnets with a string in a doorway and the south face points north. That is important. Apply the south face to the skin. (S=skin) The size of the magnet patch must be greater than the size of the tumor.
As for lycopenes, I also drink a quarter cup of low sodium V8 juice every morning, sometimes more frequently. And I have lycopene pills that I empty in cooking pretty much once every day. Those pills are 20 mg I believe. I beieve I am keeping my blood lycopene level up, with about 50 mg per day total. I also eat a lot of spaghetti, tacos, shrimp sauce, and catsup.
I am also taking lupron injections quarterly, and that deserves due credit. My PSA has been constant, <0.1, for almost 3 years. It had risen to 36 after a four year vacation from lupron three years ago. I was taking Lupron intermittently starting in 2012 when I was first diagnosed with "advanced" PC. At that time I had two sore spots, near the location of the biopsy, tailbone and rectum. They disappeared after using Lupron and lycopene consumption, for about a month. I believe that by augmenting the Lupron with other modes of attack, cancer cells and tumors can be eliminated permanently.
Your comments helped me.I'm at 4 years on Eligard, based my oncologist if I my go on a vacation. He said no vacation "yet".
Let us know the extent/degree of of his adverse side effects during ADT? Is the severity of side effects the reason for his vacation? If the answer is "no", why the vacatioon?
The longer on ADT the slower testosterone (TET) recovers. Pre sRT (salvage radiation) I was on for 6 months, stopped and my TET shot back up in 4 months to 275. Then I had to go back on ADT for 15 months. Now after waiting 4 months my ADT is only 3; it’s not coming back as fast. 2/3 of men take two years to recover n 9% never recover their TET so the odds n his progression are favorable.
Here is a podcast that explains all aspects of testosterone treatment or replacement therapy (TTh n TrT). At Min 4:24 a list of TET treatments are given. There is a lot more as well on the growing use of TET with PCa (cancer) treatment at Min 14:23. Hopefully ur husband won’t ever need to worry about this.
If he has not done so he should start to think about ED. The longer he waits to act the more damage is done to his anatomy. U can see my experience w this in my post on timing for a IPP (prosthesis). Good luck.
Is it best to wean yourself off ADT, or go cold turkey? I'm planning to do a Zytiga vacation while continuing with Lupron. Thoughts? Thoughts on how long a vacation should last? Plan to continue getting a PSA count at least every three months.
PSA doubling time is more important than PSA level. See this. If I could go back I would not have done Lupron for 21 months. It killed my arousal response n my TET is not coming back as fast. BAT treatment is what is up n coming. See same podcast at Min 17:59. Staying on ADT longer than 6 months will cause permanent damage to ur Penile tissue n ur ability to make TET naturally . But it’s effective at delaying BCR n PCa progression.
Damage to a man's ability to again produce T after ADT can be underestimated by patients and, perhaps, understated by physicians. Going into treatment with a natural T level of 750, I am just over 200 now. There should be some way to suppress PSA , perhaps by intermittent ADT? Lupron is ancient and is clinically chemical castration.
It took me (72 at time) 2 yrs. to go from 10 to 330 T. Unfortunately, my PSA went from >0.1 to 7.3 with many mets. Then went back on Lupron & Erleada, which failed after 6 months. So, be careful as to what you do?
In a word...NO.
I guess my expectation was that as long as he was not in ADT treatment, his Testosterone would continue to build. We will be meeting with the oncologist soon, so should have some clarity. Just happy PSA remains stable.
Sometimes it takes a long time to come back to baseline. Sometimes it never does.
Thanks...I suspect it never will. The hope was that it would make him feel stronger. However, we're dealing with aging as well as cancer. 83! I must keep my expectations in line.
It makes vacations problematic - if he isn't making enough T to feel better, why risk a vacation? Some men use hCG or clomid to encourage natural production of T.
TA, since T apparently recovers faster after Orgovyx, do you think there might be any benefit to switching from Lupron to Orgovyx in the third year of ADT, if one is hoping to vacation at the 3 year mark?
Yes, if cost and compliance are not issues.
Thank you, TA