Progress Stalled , what to do ?

Hi all, DX in oct of 2016, Gleason 9 or 8 in all 8 samples from detailed 3D MRI guided biopsy. Grade of T3b l1 m0 , considered inoperable due to size & seminal vesicle involvement as well as Hydronephrosis in right Kidney. PSA at DX was 7.3, started 50mg Casodex immediately & then Eligard shots. Dec 2016 PSA was 1.16, 30 days later dropped to .97, then to .77, today reading was .74. I have also had 45 IMRT treatments and was expecting better results. Radiation finished in march of 17. I am under care of a local urologist and the teton cancer center in Idaho Falls, ID. My question is should I have better results (lower PSA) relief of hydronephrosis. Blood work shows little or no change to creatinine clearance rate or level. Oncologist had hoped that what is being done would relieve pressure on ureter blockage causing hydronephrosis. Fatigue is extreme bot no other real problems. Flomax keeps things flowing. I am big into supplements and am taking 7grams of IP6 + Inosital daily. Also considering Modified citrus Pectin, Had Gal-3 test to determine dose, reading was in the low range. My original nuclear scan was clean. I am considering going to one of the larger regional clinics for a 2nd opinion, we are close to Huntsman or one of the university centers in Washington or Oregon. Thanks for any suggestions or advice. I read every day and this blog is my support center

Billash

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  • I had a very similar Dx and treatments to yours starting in 2012. You are in a very physically uncomfortable and uncertain period following your initial treatments for inoperable PC. You will feel better in the next few months.

    The effects of radiation peak about a month after your last treatment, and it takes a few more months for your body and mind to calm down. Exercise, even physical therapy, is really important to help your body clear the debris from your radiation. Your supplements will help a lot, too.

    And your radiation caused dis-ease is occurring on top of your the ramp up in side effects from your ADT/HRT that sets in after about six to eight months.

    Your .7 PSA nadir after radiation treatment is in a middle range. PSA never goes to undetectable after first round ADT and radiation, and it is much more of a concern for recurrence when it is over 1. I think you are wise to go to a regional cancer now, and your primary cancer doctor should be a medical oncologist specializing in drug treatments rather than a urologist.

    You just cannot know the future path of your cancer yet. You may not have a PSA reoccurrence, but you also may have one. It is great that you have no bone mets now. Being free of bone mets means much more than your exact PSA nadir.

    Please know that whatever path your cancer takes or does not take, there are many good treatments available. Many men including me live many enjoyable years starting out with "inoperable" PC, through persistence, ingenuity, and good medical care. You will, too. All the best.

  • Thanks Bob For the quick reply, My medical oncologist is my primary but I keep the urologist close as I may need a stent in my ureter. I really appreciate your advise.

  • There are some Urologists that might have attempted surgery. I do not know if you got second opinions. Having the Rating of disease you have--if it was me, I would have tried to take care of it surgically, with the need for stents done at the same time. High Doses of both Avodart and Proscar, may have shrunk the Prostate to make it more operable.

    When you are staged where you are, with probably an agressive pathology, which you did not mention, you really want to get the mother load out asap. This is all conjecture on my part. There are some Urologists now doing surgery after Radiation, which use to not be done.

    In my case I had Seminal Vesicle involvement, the same staging as you, and considered a little old for surgery. But I had a wild country Urologist who has removed 2,000 Prostates, and he said if I wanted to take a chance he was also. My wife an Operating Room Nurse for 40 years made the decision for all of us---she said, "Get that thing out". And we did and found it had escaped the capsule, had 4 nodes removed, and he went as far as he could with the positive margins, nerve invasion etc. So the end of the story 4 months after surgery I get to undetectable PSA, and have been there a long time.

    As to Modified Citrus Pectin, I am a fan---and have been using now 15 months---beside the Galectin-3 issue, even though your numbers are mid low, Pca cells will make more when they are ready to go for angiogenesis. Also, reports from Trials indicate Apoptosis, occurs with MCP---the mechanism of cell death not fully understood--some researches indicate the MCP, can clog receptors of Pca cells---Whatever. Above is IMO only. I am not a Doctor, but a patient, like you.

    Nalakrats

  • Thanks Nalakrats, I was diagnosed by a urologist who used the 3D assisted MRI in Sarasota, Dr Scianti who is a prostate cancer specialist, said that the combination of my age(77) and the size and complication caused by the Cancer having pushed everything out of shape advised against surgery. I returned home and my local Urologist agreed as well as my medical oncologist. I have gotten resistance from my Oncologist to avodart so I continue with Life extension's Prostate formula and extra Boron. I have also had Quad Bypass in 2010 which may have influenced the recommendation.I really appreciate all your contributions about supplements,I am a huge believer. I was a GNC franchise operator for 25 years. The reason I havn't pulled the trigger on the MCP is that I already take 3 powders and to add another 3x a day might be difficult, I guess I could combine them. I now take D-ribose, argenine and IP-6 & Inositol in powder form.

    Thanks again and continued success with your treatment

    Billash

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