New to Group: Had RALP mid 2011 <0.... - Advanced Prostate...

Advanced Prostate Cancer

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Moespy profile image
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Had RALP mid 2011 <0.1 PSA; Bio Recurrence 6/15 0.4, Radiation 9/15 <.01 PSA. Rising PSA 02/17 0.1. Doc is waiting for 0.4 to start Scans and treatment. Just wondering if anyone in a similar situation now or in the past can offer any advice regarding supplement or treatment prior to Bio Recurrence. Just started taking Pomi-T and Green Tea.

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Moespy
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pkafka profile image
pkafka

What was your Gleason score at diagnosis? Was there extra-capsular extenstion? Your timing between treatments is not something unusual for many of us. I think we all hope for the other "C" word - CURE. But unfortunately many of us are left with Management rather than Cure. I know this can be unsettling, it certainly has been for me. Make sure you stay active, exercise and eat healthy. Stay positive.

Pkafka

Rguerrero1959 profile image
Rguerrero1959 in reply topkafka

Thanks for your honesty. I am waiting on my PSA results. I'm Im getting a head start looking into advanced stage information. Bedt of luck to you

Moespy profile image
Moespy in reply toRguerrero1959

Yes that is where I am and it is pretty frightening. 20 minutes from NIH and Hopkins Branch so looking into clinical trials. Have you started on any supplements? Thanks for your response.

Moespy profile image
Moespy in reply topkafka

Hi Pfafka - Gleason was 3+4, no extra capsular extension. Just now hitting me that 2 chances are what you get for a cure (RP & Radiation) and both failed and now as you say it comes down to management. So many unknowns regarding years to live is the unsettling part. Starting to feel very sad (for mebspouse and daughter) but will be up and fighting soon. Thank you for your response.

Moespy profile image
Moespy in reply topkafka

Hi Pfafka - Gleason was 3+4, no extra capsular extension. Just now hitting me that 2 chances are what you get for a cure (RP & Radiation) and both failed and now as you say it comes down to management. So many unknowns regarding years to live is the unsettling part. Starting to feel very sad (for mebspouse and daughter) but will be up and fighting soon. Thank you for your response.

rhbishop2 profile image
rhbishop2

I had RRP followed by radiotherapy after diagnosis (Gleason 4 + 3) in 2009. My PSA did not go below 2.5 so I have been on intermittent ADT since 2010. Last year my PSA did reach its usual nadir so I went onto continuous ADT. My PSA is hovering around 4 at the moment. I have no symptoms and no mets that I know of. I don't think you have a great deal to worry about at the moment but everyone is different. I would add turmeric (better in curries than as a capsule), a small enteric coated aspirin two or three times a week, resveratrol, and at least 2000 units of Vitamin D daily. I have just discovered that chili can also be helpful.

Moespy profile image
Moespy

Wow! That is inspirational to me and I hope I follow your path. Thanks for the tumeric, resveratrol and chili tip. I am on the small aspirin daily and will up my Vitamin D. Are you avoiding dairy and eggs? Thanks very much for your reply.

in reply toMoespy

one word about food...Vegan

Billash profile image
Billash

Since you are interested in and use supplements please investigate IP-6 + inositol, very good research available online. Best of luck and keep fighting

Welcome to the club that we all reluctantly find ourselves in. I was dx'd Gleason 8 back in July of 2016. I was told that, after TURP surgery, I wasn't a candidate for prostate removal surgery. I chose HIFU over radiation. The jury is still out on that. I recommend vit K for bone health. I also take D3, CoQ10 (more for heart health), turmeric, green tea extract, B-12 (sublingual), and a multi-vitamin. Good luck on your recovery journey.

Moespy profile image
Moespy in reply to

Thank you for your reply and the information. Best wishes on your treatment!

rguerrero997 profile image
rguerrero997 in reply to

Where do you get your recommendations on what supplements to take?

AlanMeyer profile image
AlanMeyer

Moespy,

My first thought was, is your PSA really 0.1, or was it < 0.1, i.e., less than 0.1? It's always possible that someone put your blood sample through one of the standard tests instead of the "ultrasensitive" test. Also, radiation doesn't kill all of the tumor cells right away. It generally damages some so that they die over a period of time, often increasing PSA output as they're dying. This may well be the reason why your doctor doesn't want to start treatment right away. He's probably waiting to see if this PSA rise is a real indication of advancing cancer or just a blip in the testing. Maybe the chances of this aren't great, but I don't think they're zero.

If your cancer really has come back, or if you just want more info about it, you might also join the Advanced Prostate Cancer group on HealthUnlocked. There is a guy there named "pjoshea13" who strikes me as the most knowledgeable person I've met on the subject of diet and supplements for prostate cancer (and he's pretty knowledgeable on a lot of other things too.) You might search for his postings to learn more about diet and supplements.

Finally, I'll say that I've known a number of men who have lived more than 20 years after diagnosis and failed treatment, and most of that time was in an era when the most advanced drugs we have today were non-existent. There are also a lot of new treatments in the pipeline. I'm especially encouraged by progress in immunotherapy that trains the body's immune system to attack the cancer, but hormone therapies and chemotherapies are also advancing with significant new developments. I think you have a decent chance to be one of those guys who lives with a controlled cancer rather than dies from an out of control cancer and, who knows, some of these new therapies could turn out to be cures.

So exercise, eat right, do the best you can with supplements, and keep up your spirits and don't stop making plans for the future.

Best of luck.

Alan

Moespy profile image
Moespy in reply toAlanMeyer

Thanks Alan for the insightful and encouraging words. Very helpful information and I will follow your referral to "pjoshea13" at Advanced Prostate Cancer group. Really appreciate the reply.

AlanMeyer profile image
AlanMeyer in reply toMoespy

Here's another thing, not for now but for later if it turns out that your cancer has indeed returned.

Cancer specialists in many different types of cancer have been discovering that combination therapies are often greater than the sum of their parts. In prostate cancer, recent studies (Google for "chaarted" (note "aa") and "stampede" and "prostate cancer") appear to show that combination hormone therapy and chemotherapy provide significantly longer survival than taking hormone therapy alone, then switching to chemotherapy after the hormone therapy fails. I have read the same thing about hormone therapy combined with immunotherapy.

If you do have a recurrence then I think this is something you would want to discuss with your doctor. And the doctor him or herself should be, if possible, a medical oncologist specializing in prostate cancer rather than a urologist or a radiation oncologist. Medical oncologists who specialize in prostate cancer will know about these studies.

Good luck.

Alan

rguerrero997 profile image
rguerrero997 in reply toAlanMeyer

Thanks for the time you and others here take to inform and encourage others. I'm leaning heavily on this group for future insight on treatment options

Egerdes profile image
Egerdes

Look into Dr. Greger

( How not to die ) reducing radiation damage with ginger lemon balm before , during and after radiation.

Include your diet with organic :

All the vegetables and fruits you can take.

-Tomatoes (cooked with olive oil)

Broccoli, Kale, spinach ,brussel sprouts,

Mushrooms, onions, garlic , parsley,

Nuts:(almonds, walnuts, Brazilian nuts )

turmeric (with a little black pepper)

Cayenne peppers, greens tea , lemons,

Eat only wild seafood especially wilde salmon.

Keep out of your diet :

Farmed seafood and GMO food. Dairy, sugar, process food, meat, cold cuts meats , white rice, white bread , junk food, eggs, chicken, soda, fruit juice,

Drink at least 6 glasses of filtered water.

Keep your body alkaline and stay positive, happy and close to God. Leave the results to God.

God bless you and good luck.

Know you are not alone.

rguerrero997 profile image
rguerrero997 in reply toEgerdes

Im dealing with the possibility of a PCa diagnosis and instead of sticking my head in the sand have sought out this group to listen to, learn from, and get encouragement from. Thank you for taking the time to share with some of us that don't know what to do, where to go, and what questions to ask our doctors...God Bless

Moespy profile image
Moespy in reply toEgerdes

Thank you for your reply, I have some changes to make. Appreciate it!

Moespy profile image
Moespy

Thank you!

Research "A phase II trial of androgen deprivation therapy (ADT) plus chemotherapy as initial treatment for local failures or advanced prostate cancer" Add, "Robert Amato"

Published in Cancer Chemother Pharmacol. 2013 Jun;71(6):1629-34. doi: 10.1007/s00280-013-2163-4. Epub 2013 Apr 21.

"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 %)."

As a Gleason 7 (4+3), PSA 32.4 with two mets to my spine, I was very fortunate to be one the complete responses 13 years ago and today remain undetectable with no sign of cancer in my body.

If you want to go the alternative medicine route and chase a pipe dream, it's your decision, but expect poor results. Alan Meyer gives great advice in the ten years that we have communicated. BTW, Dr Amato also has a trial going on with adjunctive chemo along with primary treatment for those with a like hood of reoccurrence.

Godspeed Brother,

Gourd Dancer

Moespy profile image
Moespy in reply to

Gourd Dancer, Thank you very much for the information. Do you recommend I move into adjunctive chemo along with primary treatment at this time? This time identified as my second biochemical failure (1st after RP and now after 38 sessions of Radiation 15 months ago). Current PSA is 0.1. Appreciate the help.

I have no idea, but certainly worth research and a consult. Robert Amato may have an early paper out on adjunctive chemotherapy.

Moespy profile image
Moespy

Ok Thanks again!

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