Advanced Prostate Cancer

Multidimensional Treatment for advanced prostate cancer

Just came across this article:

elsevier.com/about/press-re...

The idea is to incorporate local therapies with systemic. I am actively looking into this. I know Patrick had a post the other day about this as well, but I thought I should share it with the community.

Has anyone looked into this?

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I was diagnosed February 2016, PSA 286, Gleason 9 and with pelvic and abdominal node involvement at age 46. In June of 2016 I did 6 rounds of Docetaxel while on Lupron.

I was considered inoperable by several doctors I had seen. Through my own research I found information on the benefits of localized treatment and using a multimodal approach. On this site I found a video posted of Mayo's Eugene Kwon treating metastatic disease with a curative intent. I made a phone call to their Urology Department and it was decided I might be a candidate for surgery . I bought a plane ticket and they gave me a chance when no others would.

December 2016 I received a prostatectomy with an extended lymphadenectomy and as of December 2017 my PSA is <0.01 and no evidence of disease. I am doing 2 years post operative HT.

I am convinced my PSA would not have hit that mark unless I had surgery.

Ron

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Ron-

Thank you for your inspiring post. I’m glad that the surgery worked so well, and hope it stays that way for decades to cone. I am definitely going to pursue this route.

Did you have any side effects due to the surgery?

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Open surgery was done by Dr. Jeffrey Karnes at Mayo Clinic in Rochester MN. I had no incontinence issues and nerve sparring done on one side. ED is an issue but hoping after HT is done I will get some of that back. Nobody is getting out of a stage 4 cancer diagnosis unscathed and with 3 daughters that's a price worth paying to see them grow up.

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Great story, Ron, I hope it lasts a lot longer for you.

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Ron, you have made a very wise and bold decision taking the reins into your hands.

Great achievement and a great post to read!

May God bless you for long years of cancer free survival!

Enjoy the Christmas with your daughters. Happy New Year too!

Sisira

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Thank you for sharing, Ron. This gives me hope. At the time of my prostatectomy, my PSA was 24.3 and my Gleason score was 9 (4+5). My path report also indicated invasion of the seminal vesicles, the perineural nerves, the vascular system, the bladder neck and 10 of 28 lymph nodes that were removed during surgery. I am going to receive chemo and hormone therapy in addition to radiotherapy to attempt a curative treatment. While the odds of a cure are against me, this may at the very least extend my life, allowing me to spend more time with my loved ones and giving researchers more time to find a cure. There are other promising treatments on the horizon too. One particularly successful treatment involves killing the cancer cells with testosterone. Yep, that's right. In a clinical trial they used hormone therapy to halt the body's natural testosterone producing abilities and then they administered high doses of testosterone every 28 days to "shock" the cancer cells.

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Thank you for providing the link. Hope the paradigm will shift soon enough so that we need not have to use the word 'Potential' before Cure! .... I am sure it will happen and a "Cure" will come soon.

Sisira

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I was diagnosed in March 2014 with G9, stage 4 PCa, mets in spine, pelvis, ribs, sternum and nodes. Underwent aggressive "multidimensional " treatment including triple ADT and Metformin, radiated my prostate (aka mothership) and several affected nodes, underwent chemo per CHAARTED and several rounds of Leukine as a patient of Dr. Myers.

My PSA has been undetectable for 3 years, most recent Axumin scans show no active disease. I remain on triple ADT - Lupron, Xtandi, Avodart, but have cut Xtandi dose in half which has reduced some of the ADT side effects.

Am I cured? Probably not, but I don't think I'd be where I'm at without this aggressive approach. Dr. Myers was said to me that getting my prostate radiated was one of the best things I could have done and chalked my status up to the "multidimensional " approach we took - his words.

Ed

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Ed-

This is just fantastic news. Your story and stories of others provide strong anecdotal evidence for the multidimensional approach. Granted, not established in large clinical trials, but my question would be : why not do it? That’s what I’m trying to figure out. Are comorbidities and side effects so bad?

Thank you for sharing your story. My best wishes for your continued success.

Happy holidays

Shayan

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Thanks Shayan, I'm glad I didn't listen to the naysayers back when I was considering radiation treatment, I had a couple of docs who thought it was too risky and it could damage other organs. But I had a very skilled radonc who felt it would be very beneficial without some of the risks of surgery. Glad I listened to him.

I'd be remiss if I didn't include the power of prayer as a large part of that "multidimensional " approach too.

Merry Christmas

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Ed that is wonderful news. Did you work with Dr. Charles Myers?

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I was a patient of Snuffy's

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I am probably an example of the article snoraste. At least I pray so, and will find out shortly.

I had a great surgeon, he got everything he could that was there, took the 4 closest nodes though the scans were clean---we knew before the surgery that escape into the blood of Pca cells had occurred, but we could not find anyplace they landed. My surgeon went after a positive margin, and to use his words he cauterized the bastards. So we flipped a coin bypassed any Radiation, as my PSA after surgery was too high indicating what we already knew that escape into the blood had occurred--or they call it micro-metastasis.

So we had the buggers where we wanted them assuming the aggressive resection was near perfect. In the blood they would meet up quickly with the ADT-6 program that I co-developed with one Doc. And at 22 months having a PSA of undetectability, except for the first 2 months, when the attack began--we/I am ready to fly solo. We are choosing a date to start in the next 6 weeks as my Luten agent is implanted in my arm---so we have to surgically remove---when we pick a date--we have to be coordinated--with MedOnc. Urology, Geneticist, and RadOnc. As if anything goes wrong, my team and I will have to react

PSA monitoring may be every 2 weeks--going to 4 weeks---maximum allowable PSA, that will be acceptable will be 1. Stand allowable doubling time will be used also. At the same time a visit to John Hopkins is being prepared before stopping to discuss the possible later use of using TRT---My Research Prostate Medical Oncologist, at the Levine Cancer Institute, will defer to J. Hopkins, If and when I might be able to use TRT, if at all. I might not even be a good subject for BAT, as an Intermittent therapy, let alone using T down the road to restore me to normal levels if I remain PSA stable for a minimum of 6-12 months.

My concern is that all of these studies never break out their successes or failures using the type pathology, and mutated genes profiles of each patient. As my Geneticist and I agree--the plausibility of singular, or multiple treatment modalities fail or have success, based on the types of Pathology, and Mutated Genes each man has.

So in about 6 weeks, I will be asking for lots of prayer.

Nalakrats

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That’s just it. You’re going hard at an aggressive beast. If I understood you correctly, you did RP first, and supplemented it with your ADT-6 (not sure what kind of ADT this is, perhaps described in your blogs?).

I’m not exactly sure what you’re doing at J Hopkins. If this is going well, why not continue?

I have a BRCA2 mutation as well, and definitely agree with your last paragraph. There needs to be better classifications of treatments and responses based on mutated genes in patients.

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Nalakrats, You have done your homework and sounds like the battle lines have clearly been drawn. It is very admirable how you make things happen for yourself not only relying solely on what doctors tell you. There is strength in prayer and you will be added in mine. Hope all goes well for you.

So the ol saying goes...."In the end we only regret the chances we didn't take"

Happy Holidays,

Ron

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Amen!

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