Since Provenge - II

5/18/2005

Hi Everyone:

In the fall of 2001 I learned about Dendreon's Phase III trial of Provenge. It came at the right time for me. After three years of holding my PCa in check, Cytadren showed signs of losing effectiveness, and I had tried PC-SPES (I knew several men personally who'd had good success with this) as well as AHCC and GCP. None of these seemed to do me any good, so I interviewed for the trial and was accepted.

I was willing to go on the trial because I was feeling pretty good physically, and if I was put on the placebo (33% chance) and progressed, I would be able to get the "real" vaccine made up from my cells that would be saved for the purpose.

12/18/01 PSA 44.1 (by my oncologist)

During the trial I continued on Lupron, but had no other treatment from my oncologist in Dayton)

Baseline for trial (Ohio site is Riverside Methodist Hospital in Columbus):

12/27/01 PSA 42.8 (Covance: the trial lab)

BONE SCAN: 2 metastatic lesions, one on left scapula (which I had since 1/93), and one at T7

CT & X-rays: no evidence of soft tissue involvement. Therefore, during the trial I would just have bonescan follow ups, and blood tests (but only rarely for PSA -- Dendreon relies mainly on the scans)

2/19/02 PSA 47.7 (Dayton)

2/28: -- 1st follow up tests after receiving the vaccine (or placebo):

BONE SCAN: "No new areas noted to indicate progression"

4/23 PSA 70.2

5/15 BONE SCAN: "Increased activity in two areas previously identified."

PSA 125.8 (Covance)

6/25: PSA 98.3 (Dayton)

7/8: BONE SCAN "Improvement in left scapula; no change in T7"

8/27: PSA 135.5 (Dayton)

9/4: BONE SCAN "Progression in left scapula; T7 stable; new lesion @ left 9th rib"

PSA 179.0 (Covance)

11/25: BONE SCAN "Previously noted lesions probably represent stable metastatic disease; new focus in right scapula or underlying right 6th rib."

12/10: PSA 190.6 (Dayton)

2/10/03: BONE SCAN "Left scapula, T7, and new focus on 4th posterior rib, probably metastatic." Dendreon broke blind, and I found I did receive the placebo. This bone scan was then used for a new baseline.

2/14: PSA 319.5 (Covance -- new PSA baseline)

3/11: PSA 249.8 (Dayton)

4/30: BONE SCAN for follow-up trial after receiving vaccine. "Avid uptake at left scapula, T7, 4th rib, right scapula or underlying right 6th rib, plus new spots at right 9th rib and T3." This represented progression after receiving actual vaccine, and ended my participation in the trial.

We had a couple of previously scheduled trips to Colorado and Gatlinburg, so I didn't see my oncologist again until June 17. We had discussed my returning to Cytadren, which might work again after a 2 year layoff (a principle I learned from the HRPC list). She wanted me to hold off for a bit, and started me on Zometa along with continuing Lupron.

6/17: PSA 309.1

6/24: First Zometa infusion

8/10: PSA 190.2 9/15: PSA 243.2 10/13: PSA 339.8

10/24: BONE SCAN Uptakes noted on left & right scapula, T7, C5, 4th posterior rib on right, & right

9th rib. Slight progression noted when compared to previous (Dayton) scan on 4/23/01.

11/10: PSA 316.3 12/11: PSA 290.6

12/16: Re-start Cytadren + Hydrocortisone

1/8/04: PSA 453.7 2/23: PSA 302.9 4/7: PSA 393.5 5/10: PSA 355.5

6/7: PSA 268.3 7/6: PSA 302.8

8/10: PSA 184.0 BONE SCAN (Pretty much a repeat of 10/24 except no mention of 4th & 9th ribs)

9/7: PSA 113.2 10/5: 320.2 11/1: PSA 248.7 12/7: PSA 206.5

1/4/05: PSA 309.5

2/3: BONE SCAN Widespread metastatic disease with some progression.

2/8: PSA 362.9 This is where we decided to stop the Cytadren. My objective was, as always, to try the least aggressive treatment that might work, and maybe DES would fit. List members were very helpful in providing guidance in seeking a compounding pharmacist, and this information helped me find 3 potential local sources. If none of these work out, there are also others that list members have had actual experience with. Thank you!

I did stop the Cytadren right away, but had to taper off the hydrocortisone over six weeks. I know I could have done it faster, but decided to follow my oncologist's schedule. We were off for a month in Florida, anyway, and I had cataract surgery scheduled for April 8 on our return.

On April 12 my PSA was actually down to 261.1 -- with no treatment except continuing Lupron, not even the Zometa, since February 10. Zometa was resumed on 4/14.

On May 10, my PSA again, to 167.3. My next PSA will be on June 7, so I will have results by the time we get to the conference.

I know that my approach will seem quite leisurely to many on this list, but my QOL is quite good, I would say about 85-90% for someone in my age group. I'm not taking any pain medication (except my daily 81mg aspirin, and Celebrex, which I'm really doing for whatever anti-cancer activity it may have), I'm able to play tennis and table tennis regularly, and of course I'm tailoring my nutrition & supplements pretty much along Myers guidelines. Plus I have upbeat music on most all of the time at home -- particularly the Traditional Jazz that I'm addicted to, and we find reasons to laugh a lot.

My tea tag today says: "The man who removes a mountain begins by carrying away small stones."

Best to all,

/jack

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Jack M. Beaven

Dayton, Ohio 12 year PCa survivor

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