Why is gourd_dancer treatments no us... - Advanced Prostate...

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Why is gourd_dancer treatments no used or are they

Bob10 profile image
28 Replies

Gourd_dancer has had incredible success with prostate cancer does any one know why it not used more often or is it ty

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Bob10
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Tall_Allen profile image
Tall_Allen

Because anecdotes are not enough to change practice.

Bob10 profile image
Bob10 in reply toTall_Allen

Tall I don't understand..

in reply toBob10

Anecdote Definition: literature a short, often amusing story about an event, usually involving a particular person (dictionary.cambridge.org/us....

We all have specific experiences with our PCa treatments, we can explain to others, an anecdote, which cannot be distilled into a repeatable scientific process.

Tall_Allen profile image
Tall_Allen in reply toBob10

Just because you hear about a strange case from someone, doesn't mean it applies to you. That's why they do clinical trials on large numbers of men. There's no guarantee that the results will apply to you, but te odds are a LOT better. Also - be aware of the peculiarities of his case.

cujoe profile image
cujoe

A plan for A Plan - I like it!

I am sure you are a gifted technical writer, you have access behind the pay walls to read the study and its results. Anecdote? Hardly. Until his illness, Dr Amato had treated over 1000 men with varying degrees of success. His successes have a common denominator. He now spends his time with his duties as a Professor and Researcher. Success happened with early intervention while the body was strong and the tumor burden minimal. I charge you to critically read the multiple published papers on the subject.

While you are at it, check this out...... ASCO is listening and starting to come around in treatment recommendations. Is it a cure all? No. Can it cure a man after the cancer takes hold and weakens the body? But it can do is give hope and a chance of greater longevity.

Each course of chemotherapy lasts for 8 weeks. Patients were treated in weeks 1, 3, and 5 with doxorubicin 20 mg/m2 as a 24-hour intravenous infusion on the first day of every week in combination with ketoconazole 400 mg orally 3 times a day daily for 7 days. In weeks 2, 4, and 6, treatment consisted of paclitaxel 100 mg/m2 intravenously on the first day of every week in combination with estramustine 280 mg orally 3 times a day for 7 days. 30 mg of Prednisone everyday through the three courses of chemotherapy.

The Hypothesis: "Chemotherapy is a setting of hormone refractory prostate cancer has shown palliative benefit especially with substantial PSA decline strongly suggesting that disease modifying potential exists. Recently, chemotherapy is beginning to show a survival advantage. The stage is set for chemotherapy given earlier in a disease course. As a working hypothesis, we suspect that the transformation from an androgen-dependent to an androgen-independent phenotype is mediated by the expansion of an androgen-independent clone already present at the time of androgen deprivation. If this model is correct, then it would be desirable to bring treatment to bear on the androgen-independent component when the corresponding tumor burden is minimal. Thus, we view the androgen-independent component as analogous to “microscopic residual” or “micro-metastatic” disease for which adjuvant chemotherapy has shown to be effective.”

The Trial cohort: “Forty-six patients were enrolled, and forty-five patients were evaluable. Median progression-free survival (PFS) was 23.4 months. Median overall survival (OS) was 53.7 months.

Out of 45 patients with measurable disease, 22 patients had an objective response: 9 patients achieved a complete response; 2 patients achieved a partial response; 10 patients achieved stable disease.

Frequent grade 3 adverse events included elevated ALT (17 %), hypokalemia (13 %), and hypophosphatemia (13 %). Grade 4 adverse events were rare and included low bicarbonate (2 %), hypokalemia (2 %), leukocytopenia (2 %), and neutropenia (2 %)."

I am one of the nine. I enrolled within 45 days of confirmed metastatic disease. My thought process was simply, hit the cancer hard when first diagnosed while my body was strong and the cancer was not yet totally involved.

There are updated results of you care to find them in various medical publications.

I immediately enrolled as a guinea pig; and I am so glad and very fortunate that I did. I am still followed. Very few in this group can say that they have had over 80 PSA and another two and a half papers of lab results; plus about 24 Nuclear Bone Scans and soft tissue CT Scans. Certainly not in a world where the prevailing attitude is not to have PSA tests for fear of panic and cost. Since 2004, those of us who were diagnosed with metastatic prostate cancer after primary treatment failure are amazed that more men are finding out that they are metastatic on first diagnosis of a prostate cancer disease. Why?

My best advice is to share treatment protocol and published technical writings with their Genitourinary Medical Oncologist. Perhaps they won’t find it a short, often amusing story about an event.

Gourd Dancer

in reply to

Your post is amazing, but you know PCa cases are so specific to individual biology, I did not know when diagnosed from my Urologist surgeon, that he had the hammer approach for surgery. Genitourinary Medical Oncologist was not offered, unless you are here, finding this site.

We all here to help each other, no narcissistic type is welcomed, we are humble, PCa is not ideology driven, please folks reject adversity posts, just read it all and apply it and challenge your docs.

The research oncologists are in a fog, they do know how to treat us, they are lost like us, is not our time in the universe...

Bob10 profile image
Bob10 in reply to

So using docetaxel early is really important

in reply toBob10

Bob, I think so. However, I am not a doctor although there are four RNs with Bacholars and one with a Masters in my family. Everybody is different in scope of disease. I watch my father die from Colon Cancer which was probably metastatized PCa at 58. I stopped going to my long time Urologist when he diagnosed me and schedule surgery. I put the breaks on and researched. I went to a Radiation Oncologist with 3000 seed procedures under his belt. The plan was to chase with 25 sessions of IMRT with a different Radiation Oncologist. One was in private practice the other in academia. My PSA never really came down. When PSA rose to 32.3, I had another set of scans and took my first Lupron injection.

Both told me that anyone could inject Lupron -it was the standard of care - to prolong until the inevitable. I asked each a question with a follow up. If they were in my shoes, if they were me, what would they do. Both thought a minute and gave the same answer. “I’d find the best Medical Oncologist around who specialized in Prostates and Prostates only. Not one who treated all cancers. I would find a real specialist.”

Follow up question. “Do you know one?” The private practice RO did not. The RO in academia did. By the time I got home, I received a call tell me that the MO wanted to see me in the morning. I spent almost two and a half hours with him. In 2004, my research told me that I had 2-4 years, maybe 5 left. I immediately enrolled and had a port put in. I followed his instructions to the T. Those who took short cuts for varying reasons, are gone. In short, I am a faithful guinea pig who has been most fortunate.

He took me off of a Lupron in 2010. I asked won’t the PSA rise. His reply was “I can’t find any cancer in your body. If I am wrong, then back on the Lupron. Besides there are silver bullets being developed every year. To fall back on.” Being a realist, I always thought that cancer would come back, until November 2016 when my scans came back normal.

When I think about my journey, I remember what Dr. A told me. “Researchers found the cure for cancer in 1978. The only problem was that chemo killed the patients first. The reason, dosage. I think I hav3 it down. Every way I slice and dice the rat, I can kill it. If your body can withstand the ravages of the poison and the tumor burden I’d minimal.”

Almost all trials take patients with varying degree of disease. Some on their last legs..... no one is only taking patients who have just metastized for clinical trials. What has come out of my trial is a rethinking of chemotherapy as a first line, and even then, 21 days apart of only one agent. SAFETY....... Look at my treatment schedule. Alternating infusions with orals for six weeks. Two weeks off. Then two more six week courses for a total of six months. There is no doubt that the men with disease that is further along can not withstand the regime.

I pray that early Stage 4 can find a Researcher in academia, as they can offer different treatment plans approved by the government gurus that a standard MO can not. This is my story. True and accurate. My only purpose is to give hope and have serious sit downs with your doctor.

BTW, I turned down a half dozen preminium employment opportunities only because at this point in time I was where I needed to be.

GD

Jdbnord profile image
Jdbnord in reply to

sammamish

Blueslover profile image
Blueslover in reply to

Extremely interesting and encouraging.

Being treated at Duke, and have been on ADT for almost a year. PSA back to undetectable, and the 5 abdominal nodes with mets have shrunk to normal size, so androgen still dependant at the moment.

Are you saying to use early Docetaxel now, or when/if becomes castrate resistant?

Hugh

in reply to

Wow, just wow.

dentaltwin profile image
dentaltwin in reply toBob10

I'm only an occasional visitor here, and it's likely this has already been posted--re: docetaxel to ADT in treatment of high risk (note: NON-metastatic) PC:

jamanetwork.com/journals/ja...

dentaltwin profile image
dentaltwin in reply todentaltwin

Sorry--I see that Pat posted this paper yesterday.

cesanon profile image
cesanon in reply to

Gourd Dancer, this sounds interesting. Where is Dr Amato conducting this trial? Where is the institution at which he practices?

Has any Asco publication printed anything about this? Even informally?

Any idea when and where he intends to expand the trial?

I do not appreciate you categorizing this post here as sewage, I'm here to share my experience to others, I'm a stage 4 advanced care patient, worry for my life everyday, wonder if more can be done.

I'm not from the sewage, I'm a real PCa patient that is sharing my way...

BTW, read up on Breast Cancer treatments. Breast cancer and Prostate Cancer are related. Both hormonal. My niece has breast cancer. She is being treated at Baylor College of Medicine. That is where I started! Her chemo consists of a regime of three different alternating agents. Adriamycin, Taxotere, and Cytosporin. Plus Prednisone, etc....... Her academic MO, is at the top of his game. I have no doubt that if she can tolerate treatment, she will be fine.

GD

HopingForTheBest1 profile image
HopingForTheBest1 in reply to

So important to have genetic testing to help determine course of treatment. I found out I am BRCA2 positive, and am pursuing breast cancer related treatment using PARP inhibitor Olaparib.

j-o-h-n profile image
j-o-h-n

youtube.com/watch?v=JD-pyWA...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/02/2029 12:29 AM EST

Hirsch profile image
Hirsch in reply toj-o-h-n

How do you arrange to be the last reply 😊

cesanon profile image
cesanon

Rats, what sewage exactly are you talking about?

Tall_Allen just explained the scientific method. The alternative method is well documented and inventoried at the following site: Quackwatch.com

Placebos work a certain percentage of the time, much like a broken clock is right twice a day.

You still wouldn't encourage others to rely on a broken watch to tell time, would you?

Or would you?

j-o-h-n profile image
j-o-h-n

LOL... Easy, just post after the last one. Like this...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/02/2029 10:52 AM EST

In 2011 my PCa recurred for the second time (gleason 8, RALP, IMRT). I consulted Dr. Amato but decided ADT 4 instead. I had no visible mets and the treatment Dr. Amato proposed was more extreme than I felt that I needed. The ADT worked great, I had Provenge in 2014, am currently on a low dose of Nilutamide, Avodart and Cabergoline, and my PSA is 0.006. I don't know how to attach documents, so I will just paste in the schedule that Dr. Amato proposed in 2011. The following is one cycle. After 2 cycles, the plan was to evaluate, possible restage, then move on to cycle 3.

EVEN WEEKS

DAY 18 AM Take 1 - 4 MG Dexamethasone (taxotere sensitivity) tablet ***************

Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

TIME? TAXOTERE (kills cancer cells) is infused over 60 minutes.

NOON Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

4 PM Take 1 - 4 MG Dexamethasone (taxotere sensitivity) tablet ***************

Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 28 AM Take 1 - 4 MG Dexamethasone (taxotere sensitivity) tablet ***************

Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

NOON Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

4 PM Take 1 - 4 MG Dexamethasone (taxotere sensitivity) tablet ***************

Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 38 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

NOON Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 48 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

NOON Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 58 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

NOON Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 6LABS –Results to UTP ONCOLOGY FAX: 713-512-7140

8 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

NOON Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 78 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

NOON Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 2 - 140 MG Emcyt (Estramustine - blocks cancer cell division) tablets

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

ODD WEEKS

DAY 18 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

TIME? ADRIAMYCIN (Antitumor antibiotic) is administered slowly via an

infusion pump over 24 hours.

NOON Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

BEDTIME Take 1 – 1 MG Coumadin (anticoagulant)

DAY 28 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

NOON Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

BEDTIME Take 1 – 1 MG Coumadin (anticoagulant)

DAY 38 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

NOON Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

BEDTIME Take 1 – 1 MG Coumadin (anticoagulant)

DAY 48 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

NOON Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

BEDTIME Take 1 – 1 MG Coumadin (anticoagulant)

DAY 58 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

NOON Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

BEDTIME Take 1 – 1 MG Coumadin (anticoagulant)

DAY 6LABS –Results to UTP ONCOLOGY FAX: 713-512-7140

8 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

NOON Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

BEDTIME Take 1 – 1 MG Coumadin (anticoagulant)

DAY 78 AM Take 2 - 10 MG Hydrocortisone (antihistimine) tablets

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

Take 1 - 4 MG Dexamethasone (taxotere sensitivity) tablet ***********

NOON Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

4 PM Take 1 - 10 MG Hydrocortisone (antihistimine) tablet

Take 1 - 250 MG Vitamin C tablet 5 minutes before Ketoconazole

Take 2 - 200 MG Ketoconazole (blocks adrenal T) tablets

Take 1 - 4 MG Dexamethasone (taxotere sensitivity) tablet ************

BEDTIME Take 1 – 1 MG Coumadin (anticoagulant)

WEEK SEVEN

DAY 18 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 28 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 38 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 48 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 58 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 6LABS –Results to UTP ONCOLOGY FAX: 713-512-7140

8 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 78 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

WEEK EIGHTDAY 18 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

Office visit.4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 28 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 38 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 48 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 58 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 6LABS –Results to UTP ONCOLOGY FAX: 713-512-7140

8 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

DAY 78 AM Take 2 - 10 MG Hydrocortisone (glucocorticoid) tablets

4 PM Take 1 - 10 MG Hydrocortisone (glucocorticoid) tablet

BEDTIME Take 1 - 1 MG Coumadin (anticoagulant)

LeeLiam profile image
LeeLiam

gourd_dancer, is there any similarity between Dr. Amato's treatment and Dr. Robert Leibowitz (Compassionate Oncology)? I know Dr. Bob advocates chemo before castrate resistant cancer.

Cmdrdata profile image
Cmdrdata

FYI, I too have been Dr. Amato’s patient since 2010 and have followed the same regiment of treatment series as part of his study. I had G7, PSA 15. This treatment in late 2016/early 2017 was SBRT at UT Southwestern (clinical study Ph.2). It failed to bring down my PSA (got as low as 5.3 and went back up to 15). I then consulted several MO At the Univ. of Colorado and UT Soutwestern. They basically do not want to risk out of the box treatment and only recommended Standard of Care, I.e. ADT. As GD said, I wanted more, so I ended up with Dr. A. He immediately ordered scans and found that my pelvic lymph node is enlarged again, and I have a new met at L3 spine. Dr. A prescribed similar chemo cycles augmented by ADT (Lupron+Casodex t the end of 5 chemo cycles.

L3 met was gone by the first chemo cycle, lymph has been normal since and PSA was good for a couple of years. However, each time my T rises after Lupron effect dissipated, PSA goes back up with it. So in my case, I am perhaps one of those that failed this study because my strain of PC is somewhat different than GD’s. in late 2017, I reached CRPC state. No detectable mets by several different scans. I was then switched to Eligard and Zytiga in early 2018. Had two back to back Eligard for January and February of 2018, and only Zytiga+prednisone since then. My PSA is currently less than 0.1 (Feb 2019) and T remains at less than 2. When my PSA start to rise again someday, I will seek another MO that is active in PC research, because I am not sure that Dr. A will return to see his patients due to his own illness. As of now I am still commuting to Houston every 3 months for checkups in his office and seeing temporary substitute doctor(s).

jdm3 profile image
jdm3 in reply toCmdrdata

Sorry to hear about Dr. Amato's own health problems. I hope he will be okay. Sounds like an interesting doc who has made a positive difference in the lives of many. Please keep us posted periodically if you don't mind. I am interested in all researchers who are willing to consider out-of-the-box treatments and especially interested in the protocols Dr. Amato's colleagues pursue. Thanks.

NPfisherman profile image
NPfisherman

Exactly...a lot of sewage....9 of 45 with complete remission...20%-- outstanding results...it wasn't SOC, but if I am one of the 9--sheer happiness. To take the beast to task, gotta get out of the box...

henukit profile image
henukit

Thanks for the update. It shows that we are all different and what worked well for one won't necessarily work for another. I was also looking for similar aggressive protocol, but Dr. Amato's clinic wouldn't do the same treatment at this time and he himself doesn't see new patients any longer. So I went with local UT SW MO. Good luck fighting on the beast!

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