Advanced Prostate Cancer

Results are in!

Starting point in july 2017 age 55

PSA 11,

spine bone mets too many to count

Soft tissue tumor on spine

Extensive nodal involvement

Bone marrow involvement

Back nerve pain so bad i had to be initially hospitalized for 7 days.

Well, today after 10 rounds of chemo my PSA is still undetectable. New bone marrow biopsy is clear. MO says tumor markers are undetectable. And latest CT scan no longer shows visible sign of cancer!!!! This is an exceptional result that i realize not everyone achieves - but wanted to share as a bright spot of hope.

I meet with MO again next week to plan out my continued check ins. I am stopping chemo, but will of course stay on lupron, and zometa continues as well.

For those of you coming off chemo (but still on lupron) - does fatigue get better after chemo? Or just continue as same from lupron? Any issues coming off of prednisone? Ive been on it 6 months now.

Also, i never planned on prostate removal since i started stage 4. Would it make sense now?

I feel good.

35 Replies
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Great results. Since I am still on Chemo i can't tell you much about coming off. I understand you need to come off prednisone slowly so be careful about that. I suggest you keep up the Lupron for a long time. Keep up the great effort.

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I Love good stories. Congratulations, BigM62! They will step you off prednisone. Shouldn’t be a problem. Way to go!

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You definitely have a lot to be happy about. Awesome achievement!! I felt a lot better after chemo, my legs were like lead weights towards the end. It was exhausting and I consider myself in pretty good shape. I was grateful to let my body finally bounce back.

As far as prostate removal with Stage IV it seems to be gaining momentum all the time. I cant speak for bone mets but had great results with mets to nodes using first HT and chemo and then a prostatectomy. I am an advocate for a multi modal approach with advanced disease. Even if cancer still exists it could add years to your life by eliminating cells the could turn castrate resistant first.

Good information posted a few days ago about this. healthunlocked.com/advanced...

Ron

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Where did you get yours done?

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Mayo Clinic in Rochester, MN and contact the Urology Department.

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Regarding removal - I recall one of my former students...who was completing his MD at Loma Linda back in 2002 -telling me despite physicians/urologists being against a radical, that without the TUMOR LOAD, I'd survive longer. I believe this was correct, even though I ultimately failed, and am going through radiation now.

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Prostate removal would have been my first move to get rid of the mother load! IMO.

Nalakrats

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Here are a couple of articles about prostate removal (either with surgery or radiation) after metastases. Nothing definitive, but certainly worth exploring:

pcnrv.blogspot.com/2016/08/...

pcnrv.blogspot.com/2016/08/...

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Those results seem to indicate a benefit to debulking.

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"Seem to" or "suggest" are good words to use. As you can see in the most recent update: "After correcting for patient risk characteristics, they found that prostate-directed treatment (radiation or surgery) was only associated with increased survival among those with locally advanced prostate cancer, but not among those with metastatic prostate cancer."

The problem is that retrospective studies are plagued by "selection bias"; i.e. those who had prostate-directed therapy were specifically chosen for it because they were more likely to benefit from it; and conversely, those who did NOT get the therapy, did not get it because they were too far gone to benefit from it. Until we see the results of a randomized clinical trial, it's hard to know whether there is any real benefit.

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Those are fantastic results!

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That’s great! We all celebrate a great report! I have not done chemo yet myself. I commend you..

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In time the fatigue got better for me on lupron. My problem was and still is depession. I have been through every drug in the book. Xanti is got me a little tired but im coming around.

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WooHoo BigM62!!! Awesome news!!! So happy for your great news!!!

🌼Jackie🌻

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Unfortunately, prostate removal is not an option for you anymore. Your oncologist should have told you that already.

Ralph

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That is no longer the case. See my direct reply to original post.

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I had 8 months of chemo without fatigue. Only noticeable change after coming off was discovering I have a brain! Took 2 months to adjust.

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Great news!!

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I’m here asking for my husband who is also in this battle. He has his stage 4 diagnosis 4 months ago and doing his last round of chemo, about to step into radiotherapy the next 2 months. Can i ask that, when you say no more visible sign of cancer, do you mention the mets to ? the bone mets hv gone too ?

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On the CT there is no sign of bone mets or enlarged lymph nodes. Of course a CT scan is not the most sensitive for bone. But before they were quite visible on CT. Bone scan also did not show activity. It possible though that an MRI would still show something. The point isnt that im cured - im not. But its a great chemo response and im hopeful that lupron will keep me in check for a long time instead of a swift PSA rise after chemo.

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Great results!! I completed 6 rounds of taxotere. My fatigue was mostly gone after 1 month. Leg and feet fluid retention went away in 2 weeks. My memory and brain fog improved as well after 1 month. I still have neuropathy in my feet which they said could last for several months.

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My husband's fatigue decreased significantly after chemo. What great results for you!!

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There is a school of thought that believes debulking of the cancer can lead to better results, even after metastatic spread. Article below:

pcnrv.blogspot.com/2016/08/...

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Great results! I am similar but completed chemo in September with re-scans in late October. The chemo about got the best of me fatigue wise. As time passed and I got back into daily routines, the fatigue lessened. I still easily get winded. My results weren't as good as yours and I had more mets remaining after chemo which continued to grow on hormone therapy rendering me CRPC so now on to Zytiga. My doctor prescribed me venlafaxine 37.5 mg, to help fight the fatigue and frame of mind so to speak. I'm not sure this is a drug given at your stage, but it has helped me feel better about the whole situation and certainly given me more energy. I started taking it about 2 weeks before the Zytiga as I'm sure the prednisone has helped with the fatigue as well. In hopes you never have the need for Zytiga or Xtandi.

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My husband also takes Venlafaxine (Effexor) to manage hot flashes and mood. Very effective for him!

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Does it help with flashes? My wife is on effexor for anxiety. I do think i need to possibly get treated for anger flashes which might be depression but not sure. Im open to medicating but not experienced like my wife is.

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It has certainly helped my husband, both with hot flashes and mood swings, but each guy's body chemistry is a little different. Might be worth having a conversation with your doctor!

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Just realized my wifealready takes effexor for anxiety. What dosedo you take?

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RALP 2008, recurrence, MIRT 2009, recurrence 2011. I found during my six years on various strengths of Lupron that the monthly dose (3.75 mg) resulted in no side effects. I also take Nilutamide, Avodart, Metformin, Dostinex, Prolia and vitamin D3. After Provenge in 2014, I stopped Lupron in 2016, but remain on the other meds. PSA is currently 0.006 and T is 73. Good Luck in your treatment.

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Nice to hear!

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to BigM62:

Good Luck and Good Health.

j-o-h-n Tuesday 02/27/2018 1:25 PM EST

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Great result m8 may it continue

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Stage 4 here August 16. About the same mix of issues. 6 rounds of chemo. Yes the fatigue does get better, helped me to get out and walk as the meds settled in my hips after sitting to long.

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Fantastic results. Keep it up!

I’m 52 with stage 4. I’m doing RP in April. I consulted with a few centers (MSK, Dana farber, Weill Cornell, mount sinai) and the general consensus is that if your body can tolerate it, there’s certainly no harm in it.

As other members have pointed out, and offered links, there’s a growing body or research that argued for the benefits of the surgery. You can just search online for articles, or watch dr. Kwon’s videos from Mayo.

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Well done on such a great response. I have no idea why some like you respond so well, while others like me don't respond at all? Best of luck for the future.

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