castrate resistent therapy

looking for information on castrate resistant therapy.....first hand or background knowledge

longwaytogo: castrate resistance is a long way in your future--or maybe never. ADT "chemically castrates", and castrate resistance happens if, after a long time on ADT the cancer starts up again in spite of it.

Not an issue for you today.

JNF .....that's exactly what I was thinking. That's why I asked what other therapies might be available........just trying to make myself as knowledgeable as possible. My primary is going to send test results and imaging after all are done next Friday to friend of his who is a top urologic oncologist at Sylvester Center at the University of Miami.

Longway,

As I mentioned before some of ADT uses blockade drugs like Zytiga. This is very common when PCa becomes castrate resistant and simply lowering testosterone no longer works. Cytotoxic chemotherapy drugs may also be introduced, most commonly taxotere, but are generally less effective with PCa as compared to other cancers. A few other chemo drugs are also used.

Immunotherapy can also be introduced. Provenge is a form that teaches segments of the immune system to be more effective. Our friend Todd1963 used it successfully. 15 years ago he was dx with widespread metastatic PCa with PSA of 3,216. He is doing well, a true medical miracle. A new combination that may have promise combines opdivo and ipilimumab. One other member on the board is using the combination. Keytruda has been used by a very few as it is only indicated in very limited situations. A good oncologist should include testing you appropriately. If you have the BRCA gene mutations, there are other drugs that may be effective. This is a very rare condition, but could be investigated. Also small cell neuroendocrine PCa would indicate chemo as ADT is generally less effective.

There are more than what I have listed and you can learn more online. Good places to start would be www.pcf.org. Just keep googling advanced prostate cancer, metastatic prostate cancer, hormone resistant metastatic prostate cancer and the like. You will find a lot.

I encourage good open-minded research and strongly discourage any type of self diagnosis or developing any types of treatment bias from what you read. Most important next step is to find a specialist medical oncologist that has treated men in your situation or worse. If a doctor can not demonstrate treatment in men in your situation then move on to someone that has.

You have received great insight from JNF. I agree ---- good to research, good to learn options, good to gain background --- but don't cross the bridge until you get to the river.

Your medical team will guide you. But --- you want to have some background knowledge, so you can ask informed and cogent questions. My doctor KNOWS I will ask questions, every time I see him.

I had two doctors who didn't have enough insight to lead the way. They are no longer on my team.

In metastatic cases, time is of the essence, and you need the best and the brightest.

My current doctors have my case memorized. They are outstanding --- and we have a bond ---- teamwork.

My thoughts are considered & valued with every approach we take ---- and my respect for them and their expertise is beyond words.

With a PSA of 800, you will likely need to get the battle started, as I did. I know diagnostics need to come first, of course.

Even though your testosterone is low, my oncologist worked to get mine lower to help control PSA flares. We tried other types of ADT shots, and my testosterone stays consistently below 7 now. Do all that you can to bring that PSA down.

Unfortunately, residual testosterone was creating spikes and flares in my PSA, and my oncologist worked to find ways to level it off. It's like trying to get a fire-breathing dragon to go into hibernation, by taking away his food source --- in this case, testosterone.

I have been on ADT for over 7 years. I did chemotherapy infusions, as soon as they were offered after new clinical studies, about 6 years ago. I have been on ZYTIGA for over 5 years. A few years ago, I also did 9 weeks of radiation, after Dr. Kwon at Mayo Clinic recommended it. Every one of these treatments has helped me maintain my health goals.

All of these treatments worked together, in tandem. Each step was carefully planned by my doctors. Each case is different, but that is my story.

It was a major milestone, just reaching my 50th birthday some years ago. I am still adding candles to each year's birthday cake.

I remain active, I continue working full-time, and I just got back from walking a few miles today at one of my favorite lakes on this winter's day. That's the hope I want to share with you today.

I am mindful of my blessings --- my family, friends, and faith --- and the wisdom and compassion of my doctors who continue to lead me forward in my healthcare. My PSA at Christmas time was listed as undetectable. Best Christmas present I could ever ask for!

Rely on your doctors --- form a team together--- make decisions once your tests and diagnostics are finished.

Meanwhile ---dust off those boxing gloves --- and get ready to enter that boxing ring. If warranted, pending test results, you will then be READY!

Keep pushing forward ---- give it everything you've got!
CYCLONE - # Iowa State University

Longway, you also need to look into your insurance to see whether you need referrals and network issues. You say your are age 64. When do you turn 65? At that time you can go on Medicare with a Supplement and you will have no network or referral restrictions.

For the most part to see any doctor, like Kwan, just call or email them. Often they have an online registration you can use to link the information you have. In addition to Dr. Kwan, Also look at Dr. Sartor at Tulane, not a far distance from you. He came to some fame several years ago when he treated a man for about 12 years that first presented with a PSA of over 4,000 and extensive metastasis. And this was before many of the drugs we have today.

Longway, I am still troubled by your very low T and very high PSA. You are reporting castrate levels of T without being medicated. Severe hypogonadism usually measures total T in the 60-100 range from studies at have been reading. You are reporting far below that.

Please be sure your T test is reporting in nanograms per deciliter or ng/dL. This is the general measurement in the US and produces a normal range generally between 250-750 or so. Using this measurement it is generally accepted that under 30 is clearly castrate level. Many PCa oncologists like to get under 10 when treating high risk and advanced PCa as evidenced by Cyclone’s comments. During my three years on ADT my doc kept me under 10 using Lupron/Eligard and Avodart (reduces DHT).

However, a few times my T test came back with a different measurement that appeared to be about 8-10% of the ng/dl method. I understand the different measurement is more common in Europe and was confusing to me until my doctor clarified the two different methods. Please be double sure what you are reading in your T report.

If, you are at such a low T you surely have been suffering with various common side effects of very low T. These include hot flashes, loss of libido, ED, fatigue, weakness, low muscle mass, weight gain, body hair loss, shrunken testes and sometimes depression. These are what we often experience when on ADT to treat PCa. Is that the case with you? When were you first presented with the T test results? Is this your first PSA test? What prompted the PSA test?

My last testosterone level after being off TRT was 25 after 54 day's since my last injection.
Opioid induced hypogndal disorder stopped my body from making testosterone then TRT made me more dependant on external replacement

I will continue TRT because my life is a wreck without it.

Awsre of the risks and controversy

Glen