Advanced Prostate Cancer
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GOOD NEWS - NEW TREATMENT APPROACH

Hi friends! Just returned from a visit at MD Anderson and had good news I wanted to share in case it helps someone else here.

My case is a bit unique - I have advanced prostate cancer, but the only place I have any sign of metastatic disease is in the T8 vertebra. (I’ll leave the rest of my history at the bottom of the post).

After having the third CT scan and bone scan in the last 18-months, I again showed no change. My PSA has gone from 227 in 2015 to undetectable for a year and slowly rising now, bouncing around a bit, to 1.6.

So my doctor hypothesized that I may have no other metastatic disease. She confirmed this by ordering a PET scan and a prostate MRI. To address the slowly rising PSA, she is adding Zytiga and Prednisone to my Lupron therapy. But she also wants me to have either radiation to the prostate, a prostatectomy or both. The theory being that perhaps they can significantly slow the growth of the cancer or kill it. If this works, she hopes to give me an ADT holiday in about a year (assuming my PSA goes to 0 or stays very low and stable), or, best case, with ongoing monitoring, stop it forever.

She stressed this is not the conventional approach (I have read about others on this site talking about it). Happy to see that they are treating me, with my personal disease circumstance, and not just doing what ‘the protocol’ suggests.

Whatever I choose (radiation and/or prostatectomy), I’ll keep everyone posted on my results in case it helps others.

Here’s my history: PSA 227, diagnosed in May 2015, Lupron since diagnosis, PSA went to 0 in 4-months, stayed there for a year. Had radiation at diagnosis to T8 vertebra and had 6 rounds of chemo in the fall of 2015. Gleason 4+4 . PSA now 1.6 after slowly rising for 18-months.

Have a nice weekend! My wife and I are! First good news in a long time! 😊 As one of our friends on this site always says, “never give in!”

James

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Hi James

A very welcome news and I celebrate with you on your journey. This has been my 10th day using doxycycline and vitamin c. Yesterday I taxed my prostate system so I will enhance my treatment adding omega 3 fish oil 2x1500 mg on Tuesday, Thursday and Saturday. I have so far managed to survive 10 days with my treatment without any adverse effects.

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Alan, I am almost done with 24 cycles of radiation to prostate and to the multiple mets in the pelvic area, Having some digestive side effects , but hopeful we can knock it back a whole lot after all this time (11.5 years) I will keep the group posted how this turns out. Your post sounds very hopeful, I am happy for you. Have a great weekend. NGI

Dan

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Good luck with your treatments. I am hopeful you get a tremendous response and that the digestive issues are very manageable and temporary. Please keep us posted! And thanks for the well wishes. We are very optimistic with the new approach they are going to take.

Happy holidays!

James

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Hi James

I seem to be in a similar position to you with only one locatable met outside the prostate, in my case in T10. This was in fact there right from initial diagnosis but it was assumed to be some other kind of bone lesion. I have had a prostatectomy and radiation of the prostate bed without much effect on PSA. ADT kept it down for a few years but it had started to rise again. I have now had radiotherapy using Cyberknife to T10 and this had a marked effect on PSA, getting it down from 6.75 to 1.7. Unfortunately I think it is now starting to rise again but await the next blood test for confirmation of this.

Hope this is helpful.

Bob

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Very helpful and thank you for sharing. Best of luck in your journey!

All the best,

James

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I have similar symptoms to yours. When I asked about radiation or removal of the prostate my Oncologist said "the horse is already out of the barn" so either option would be moot. I asked him to check with his radiologists. The radiologist agreed with my oncologist that it would be moot. I find this strange. Why not attack the mother ship? I'm going to get another opinion. I like the direction your doctors are moving in. Please keep us posted on the results. Good luck!

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I received the same analogy when I was diagnosed. Which is why I received no radiation to the prostate and was also not considered for a prostatectomy when I was diagnosed. This is emerging thinking that it might make sense to go against the conventional approach followed for many, many years. There is no formal studies yet to suggest that this approach will actually work. I like that the doctors are starting to question conventional wisdom - in case the conventional wisdom is wrong. It’s at least worth questioning as we all meet with our doctors.

One important note - my doctors don’t think this would work if a patient has more than a few mets. Also, they point out that they used the most sensitive test (PET scan) to look for any additional cancer presence, which they described as the best technology available today. But it is no guarantee it will turn out like they hope. But we are all optimistic.

Best of luck in your journey.

James

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My Uro was also of the mindset that there is benefits to taking out all the cancer that can be found. Before my RRP, the scans showed some suspect lymph nodes. He took 19 nodes out along with the prostate. The nodes turned out to be normal, but I ended up having adjuvant radiation anyway from the bad pathology

Brook

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Hi James,

You certainly seem like the ideal patient for oligometastatic treatment.

The old idea was that if you had one observable met, it was nonetheless "everywhere" & you needed a systemic treatment. But a minority of patients don't get mets "everywhere". Oligo means "few" & one met at T8 qualifies.

I had surgery & salvage radiation 13 years ago, & radiation on L5 3 years ago.

Regarding your prostate, you do need to treat it if T8 is to be zapped. There will be morbidity, unfortunately.

If you go for surgery, that leaves radiation as an option if another met appear (many years ahead) in the region.

Best, -Patrick

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Thanks, Patrick, for the insight. You made this much clearer than even the doctor. 😊

And congratulations on the success you have had on your long journey. That’s amazing!

Also, thanks for helping keep us all informed. I really appreciate your posts.

Have a great day!

James

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James I like the approach. I would want to personally get that dirtbag Prostate--there are things we cannot see, even with the most sensitive of scans. De-bulking the original cause, even though there is no evidence, and killing the Pca in your T8--is IMO, the way to go. Whether Radiation, or RP, is an age thing in my mind---When I given the choice of either, at the age of 71--now working on 74---I had to problem to take the Dirtbag out--my Great Surgeon, was able to do it and preserve my sex nerves--but while on ADT5 what difference did it make to me---I had a lifetime of great Sex, by age 45---so I wanted immediate debulking--which turned out to be the right move, as my Pca had already escaped into the blood, before surgery, and considered to be micro-metastatic. Much easier to fight it in the blood, than if it had landed. Today even with Circulating Tumor Cell Blood Tests, we cannot find any alive. As this test can pick up a couple of cells, if they were active.

Later stage RP,or Radiation, with Proton, or Ciberknife, in the past was almost never done--now there is a recognition, of benefit, and a better OS.

Happy Holidays,

Nalakrats

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Nakakrats, thanks for the thoughtful response. Appreciate the encouragement and advice.

Also, as I told Patrick earlier, I also wanted to thank you for your insightful posts. They are very helpful to all of us.

Happy Holidays!

James

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James it seems if going for a cure with Stage IV prostate cancer the guys that have fared best have worked with doctors that use unconventional methods. These are the doctors that are blazing the path for treating this disease. It blows my mind the amount of men who do not seek treatment options outside of the normal prostate cancer protocol. I went through a few doctors before finding one that would do surgery on me because I had advanced disease. He looked at me as an individual and not as a statistic. I started this venture with a PSA at 286, Gleason 9 and pelvic and abdominal nodes involved. I had surgery a year ago and currently <0.01 with clean scans.

I chose a prostatectomy over radiation in my situation because I wanted to save the RT card in case it is needed later. Also being in my 40's I didn't want to do any more damage down there than what was already done. I have no incontinence issues but am dealing with ED hoping after HT is done that may get better as nerve sparring was done on one side. My doctor and I decided to follow up with 2 years of hormone therapy after surgery to aid in wiping out any remaining cancer. I have 1 year left if numbers remain undetectable.

Sounds like your in great hands and stay strong whatever direction you take.

Ron

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Ron, appreciate your response and encouragement. Seems like the prevailing opinion I’m hearing is to do what you did - get the prostate removed and save RT as a later option. Very helpful advice when I meet with the doctor to discuss.

Best of luck with your journey, too. Praying your PSA remains very low so you can get an ADT holiday! I’m hoping for the same thing soon!

Happy Holidays!

James

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That's our mantra....Never ever give in!

God bless and have a great break.

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Awesome news, James. Happy for you. Go celebrate. :)

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I am considering going to md Anderson for a second opinion can you tell me the name of your doctor there. Thanks

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