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Advanced Prostate Cancer
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Is Provenge working for me?

I completed the Provenge regimen in early November 2017. PSA measure on 120517 was 15.36 approximately double six months from six months earlier and before the Provenge. CT scan also revealed lymph node involvement. On 040918, CT scan lymph node involvement still present at approximately the same level. PSA was measured at 65.6. I understand that PSA generally increases following Provenge, but thought I should expect a decline six months later. Doctor has now ordered a bone scan and talks of adding Zytiga or Xtandi to current meds of Lupron every three months and daily Bicalutamide. Interested in learning of experience with Provenge. My doctor says it might still be working. I am skeptical. I was first diagnosed in 2010 followed by robotic surgery, pelvic radiation, and then Lupron. I am still vertical, but with low energy and pain.

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We get used to judging how well medications work by their effect in reducing PSA. As you are learning, that is not necessarily the case. The only way to know if provenge is working is you live longer (an impossible thing to know). Provenge combines well with docetaxel or radiation, at least theoretically.

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One fact for sure the Lupron is not working with PSA going from 15 to 65...you now have crPCa....with Provenge PSA usually does not decrease but I never heard of PSA going from 15 at the start of Provenge and 65 6 months later.

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Thanks. I will have more questions for my Doctors. There are times when I feel that I am on a journey without a map and sometimes I think the Doctors are in the same situation. They remain optimistic and point out the aggressive nature of my cancer. Perhaps that is because of the Agent Orange exposure in Vietnam. My Doctors show disappointment with unexpected results, but are quick to point out that I am still vertical and active. This I appreciate. I do wonder if PCa from Agent Orange exposure behaves differently from a heritage DNA source? Meanwhile I am thankful for the support of each person on this site and will continue to take "pictures" along the way.

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Are you currently taking Bicalutamide? If so stopping should help. It has helped me for one year and counting.

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Still on Bicalutamide. My team will make next step decision after a bone scan and chest x-ray. Why would stopping Becalutamide help?

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PSA has now risen to 166. Bone scan/CT show mets in lymph nodes, pelvic area, and ribs. Consulted with radiation oncologist. He set me up for Xofigo. Then a week later cancelled because there were tumors at 5cm and his guideline from clinical studies limited the size to 3cm for treatment. Then, a week later he calls to say that maybe we could do it, but Medicare may not pay for it. Said there was initial approval, but his experience was that when the bills are submitted for payment they reject them. The Doctor is not offering me any solid advice; instead he says it is up to me to decide. I am curious if anyone has experience with Xofigo for tumors in the 5cm range? For the time being, I have been taken off Bicalutamide and Prolia. Replaced with Xtandi and Xgeva. I have a stomach ache (endoscopy found mild irritation), fatigue, leg pain, and poor appetite. I am still working on my ranch, but going slow. Next step will likely be external beam radiation which I question how effective that will be. I had 43 IMRT treatments six years ago and the cancer grew. Any advice?

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When I was on the provenge treatment my PSA stabilized but did not go down. The nodules in my lungs shunk.

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My husband just finished his Provenge regimen this past Thurs 04-12-2018. I didn't realize the Provenge can make your PSA level rise so maybe that could explain why my husbands PSA went from 90 on Feb 8th 2018 pre Provenge treatment to 250 on March 28th 2018 after one treatment with Provenge on March 15th 2018. My husband was diagnosed in 2005 with PSA of 7 and had radiation and Eligard hormone shots which brought it down actually below 0 and he had the Eligard every 6 months His PSA was very low for years but then it started climbing slowly. Then Nov 2016 they did scans and found it in his bones and he was started on 7 rounds of chemo Docetaxel from Dec 2016 to April 2017 which brought PSA down to 9. But then only a couple months later it shot back up to 176 so he was started on Zytiga and prednisone in Aug 2017 which dropped it drastically down to like 10 but then once again in Nov it was 20 then Jan it was 60 and Feb it had climbed back up to 90 so they took him off Zytiga and Prednisone.

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Thank you for responding. I understand that the PSA score is not an accurate measure of our health. I am with many others who would like to have some lab measurement to judge where we are on "the path." At some point perhaps the most meaningful measurements are qualitative. Do I feel better today or maybe about the same? I plan to feel better tomorrow and work a little more on fun projects. Now in my 8th year, I have found that my goals change with time. I accept that there is no cure for me. Even so, I am still subscribing to magazines and will be planting a garden. I expect to follow my teams recommendations and will have interest in the various values that tests produce. However, I will not live my life by those numbers. I will do what I feel I can do as long as I can do it. When that later time comes, I have planned for it, but will continue to work here on the ranch each day that I can. Wishing us all many good days!

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Update: PSA peaked at 166.9 seven months after Provenge. Then began to decline. I began Xstandi eight months after completing Provenge. Now over 13 months after Provenge and five months of Xtandi PSA is 21.5. Tumors on lymph nodes are 50% smaller and no rib pain from the bone mets. l do not know where the credit show be awarded, but I have renewed energy and have lost 20 pounds. My Doctor says says the Provenge made the Xtandi more effective. I accept that explanation. Now he wants me to do Xofigo to finish off the bone mets. Have not decided on that just yet.

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