My story : I was diagnosed with Gleason... - Advanced Prostate...

Advanced Prostate Cancer

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My story

dmartinaog profile image
12 Replies

I was diagnosed with Gleason 9 advanced prostate cancer on August 28, 2018. I had it ripped out by the roots on October 5, 2018, no nerve sparing surgery. I was stage IV with Mets to the lymph nodes (4 of 12 positive) I took multiple blood clots to my lungs 10 days post OP and pneumonia 10 days after that. Got my first Lupron shot while in for the blood clots, that was fun. PSA was 6 at surgery, dropped to 1.0 3 weeks post OP, and undetectable at 7 weeks. I'm approaching 3 months post OP and doing well. My continence is just about back and I am back to work. I had a PET scan done last week and all clear. Now looking for the best next step for surviving this nightmare. I talked to 2 radiation oncologist. One just wanted to start cooking me and get the insurance rolling and the other (now my doc) said I may not benefit from radiation in the long term and I should wait about 5 to 6 months for healing to be completed. I'm going to MD Anderson in Houston next month for a complete evaluation and comprehensive treatment plan. My medical and radiation oncologist will work with the doctors at MD if I choose their plan. As of now things are going well. I am responding well to the Lupron and all is quite. I overhauled my diet by going to plant based, no dairy, alcohol, red meat, and roll back on sugar as much as possible. I lost 30 lbs in 2 months. It just melted off.

My feeling about all of this is a few lymph nodes caught some cancer cells that got out and I believe it stayed in the general area. I do have positive margins at the bladder neck and where everything was reattached. I believe the margins and the pelvic area should be hit with radiation as a final cleanup. Hopefully it will not startup anywhere else. I'm 57 and have a lot of living still to do.

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dmartinaog
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12 Replies
lovemydad profile image
lovemydad

With love and constant vigilance you can live and thrive. My dad was diagnosed with a Gleason 8 at 59. He had a similar procedure as you described. He did radiation 4 years later. He turns 77 in a few days and is still working with my brother. Look at some of the detail from this group. They are fantastic!

in reply to lovemydad

You and your families love are factors in his success... Happy new year..

Tall_Allen profile image
Tall_Allen

As long as you're responding so well to Lupron, there's little danger of progression. I agree that salvage radiation to the prostate bed and pelvic lymph nodes (all of them) is your best next step.

firefox12 profile image
firefox12

Wish you all the best for future and happy new year

softwaremom00 profile image
softwaremom00

Glad you are doing well. My husband has made similar changes.. he also added some weight training and I think it has helped with the side effects of Lupron. When he gets really tired I mix him a batch of the Four Sigmatic Cordyceps and Lions Mane Elixirs .. I throw in some Laird Superfood coconut creamers. (different flavors.. not necessary but yummy) This drink seems to pep him up on his down days. Not sure they help with the cancers but they do help him feel perkier.

Have a great new year and keep up the healing!

Softwaremom

in reply to softwaremom00

Perkier is great!

I’m also 57.... sounds like things are going in the right direction for you. The diet I approve and follow myself.. I don’t have the tech answers for you . But the wise shall help you soon . I welcome you to this cite... we all are rowing to stay afloat.... Find a little happiness everyday.. peace during this point of transitioning.. It “IS “ possible to stay clear for untold years... but we know PC is with us to the end of the line... an altered chemistry ....

This excerpt is from a trial of ADT and Chemotherapy given before prostate removal. The third sentence might be a talking point at your MD Anderson visit.

“This is a study for men who have locally-advanced prostate cancer and are eligible to undergo prostatectomy. Standard treatment is prostatectomy alone, but there is a chance that cancer may spread to other organs in the future, even after the prostate is removed. If this were to occur, standard treatment would be androgen deprivation therapy (ADT; hormone therapy that blocks testosterone) plus chemotherapy. Clinical trials suggest that neoadjuvant treatment (treatment given before primary therapy) may prevent a recurrence. The purpose of this research study is to assess the safety and benefit of ADT plus chemotherapy given before prostate removal.”

Gourd Dancer

CalBear74 profile image
CalBear74

I am a Gleason 8, metatstatic stage 4 (two bone mets) dx in 2012. I was on Lupron and Casodex for 3 1/2 years and then just Lupron until today, six years total. I am a boring patient for my oncologist. Last time I visited with him, he looked over my numbers, then finally said "you are looking great. I will see you in six months."

You are making a lot of good moves. As for diet changes, you will want to visit nutritionfacts.org. It has been very helpful to me after I became a vegan. You are headed in that direction and that is a very good thing. Here are some videos I wish I had seen in 2012. Also go to the youtube and watch "What the Health". Very entertaining and informative about food and diet choices in the U.S. Joseph Keon's lecture "Whitewashed" is worth viewing at youtube as well.

These are also essential videos for you to ponder:

nutritionfacts.org/video/tr...

nutritionfacts.org/video/tr...

nutritionfacts.org/video/be...

I should point out thatDr. Greger at nutritionfacts.org is essentially my health coach. I have downloaded his app "The Daily Dozen" to guide my eating.

Keep in mind that the following videos are talking about IP6 which can be purchased OTC;, Dr. Greger prefers the older terms "phytate" and "phytic acide".

nutritionfacts.org/video/ph...

nutritionfacts.org/video/ph...

nutritionfacts.org/video/ph...

These past posts of mine may contain information you will find useful:

healthunlocked.com/advanced...

healthunlocked.com/advanced...

Good luck. Message me if you have any questions after viewing these videos.

CalBear74

dmartinaog profile image
dmartinaog in reply to CalBear74

Thank so much for the links and information. I'll post what I learn from the MD Anderson trip after next month.

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

One day at a time!!! That's what my ex-wife told me.... I couldn't bear it....so puff the fire spewing magic dragon got her.... I look good in stripes and you should see me in my orange jumpsuit... I'm a knockout with the guys....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/28/2019 5:09 PM EST

dmartinaog profile image
dmartinaog

Thank you !

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