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Old 05-07-2012, 02:03 PM   #1
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Talking Low-dose thalidomide extending my vacation from ADT3 for prostate cancer, again!

I'm posting to report unexpected additional success in extending my vacation period using the intermittent approach for triple androgen deprivation therapy (ADT) for prostate cancer.

Background: In brief, I was diagnosed with a challenging case of prostate cancer in December 1999: baseline PSA 113.6; flare to 125 after Lupron; Gleason score 4+3=7 (reviewed by Epstein); all cores positive - most 100% cancer; perineural invasion; stage 3; prognosis of three good years and two declining years from two respected surgeons focused on prostate cancer; but bone, CT and ProstaScint scans essentially negative, with one questionable area.

Treatment: My sole treatment has been intermittent androgen deprivation therapy, plus important supporting drugs and lifestyle tactics. During 2000 the ADT evolved into triple ADT (ADT3), including Lupron, Casodex (now available as generic bicalutamide), and Proscar (now available as generic finasteride), plus Fosamax (now available as generic alendronate). During the "off-therapy" vacation phase I continued finasteride and either Fosamax or Boniva, though I took a vacation from these bone density drugs starting with the third vacation period. Lifestyle tactics I've used have included a Mediterranean diet, various promising supplements, aerobic and strength exercise, and stress reduction, plus 20 mg of simvastatin (the generic version of Zocor) to lower cholesterol (for cardio health and combating prostate cancer). The full ADT treatment drove my PSA to <0.01 on my first two rounds of ADT3, and my vacations from ADT for these first two rounds lasted for 34 months after the first round of 31 months of ADT3, and for 21 months after 19 months of my second round of ADT3.

Both times my oncologist and I used a PSA of about 10 during each vacation, with continued finasteride and Fosamax during the vacation, as the trigger for a thalidomide (Thalomid) booster to extend the vacation. The objective was to halt or reverse the PSA rise, and I was able to do that successfully both times, gaining an added 6 1/2 months for the first vacation and 8 months for the second vacation. Each time my PSA again started rising fairly rapidly during the final month.

For the third cycle of ADT, I was on Lupron, Casodex/bicalutamide, and 10 mg of finasteride daily (with Boniva in support) for 19 months, ending with a PSA low-point of 0.03, which declined further to 0.02 shortly after ceasing bicalutamide at the time the Lupron ran out in mid April 2010.

Third vacation period: At about the fifteen month point of my third vacation period, with my PSA approaching 10 and continuing to rise briskly, I again started taking 50 mg of thalidomide daily. I continued taking an 81 mg aspirin, important at that point to minimize the risk of blood clots, a known risk with thalidomide, plus 300 mg of vitamin B6 to minimize the risk of peripheral neuropathy, a substantial risk of thalidomide at higher doses.

However, this time my oncologists and I had decided I would switch from finasteride to Avodart if my DHT was not below 5, and that I would add 200 mg of Celebrex twice daily if my PSA hit around 10 with a rising pattern. My oncologists and I were not sure this would help, but the approach looked promising and we considered it worth a try. I made the switch to Avodart on 10/13/11 after my DHT tested at 8 (now at <5), and on 11/22, a week after my PSA rose 3.42 points in a month to 11.70, I started taking Celebrex. My wife and I were holding our breath, hoping the PSA would go down.

Look what happened, picking up PSA tracking from a few months before starting thalidomide:

3/3/11 PSA 4.99 (PSA doubling time - PSADT - 2.78 months)

5/6/11 PSA 7.29 (PSADT 3.24 months)

6/2/11 PSA 8.52 (PSADT 3.94 months)

6/22/11 PSA 9.76 (PSADT 3.35 months)

7/7/11 Started thalidomide/low-dose aspirin/vitamin B6

7/26/11 PSA 10.97 (PSADT 6.63 months; psa still rising, but taking twice the time to double! )

8/8/11 PSA 9.48 (YES! )

9/3/11 PSA 8.8

10/5/11 PSA 8.38

10/13/11 Switched from finasteride to Avodart, about three months after starting thalidomide. Started resveratrol about this time.

11/14/11 PSA 11.70 (doubt this was due to the switch away from finasteride and to Avodart, but possible, or from starting resveratrol)

11/21 11 PSA 11.57 (confirming PSA)

11/22/11 Started Celebrex

12/14/11 PSA 9.44

1/17/12 PSA 9.54

2/16/12 PSA 9.53

3/12/12 PSA 10.23

4/6/12 PSA 9.51

5/3/12 PSA 9.69

Recent very sensitive and specific scans indicate that I have no metastases. (I have posted about those scans on other threads.)

By the way, I normally get PSA tests every 2 to 4 months, depending on where I am in the intermittent therapy program. We are checking monthly as, in the past for me, PSA can start climbing fast when thalidomide loses its effectivenes.

Here are some other points that may be important. I've added two nutritional tactics that may be supporting this success in achieving a long vacation period: resveratrol from a well-regarded source and Super BioCurcumin, a highly absorbable curcumin formulation. I tolerate the latter well, and a dose of 10 per day was recommended to me by a leading oncologist who did a thorough review of my case, with tests and exam. I started the resveratrol on 10/7/11, and adjusted the dose of Super BioCurcumin slightly downward to 10 daily in late September after working up from a dose of 5 per day in May.

I have also succeeded in reducing my weight substantially (and gradually); in short, I've lost about 15 pounds compared to my weight on ADT, and, contrary to my first two vacations during the thalidomide phase, I've managed to keep the weight off. I have good control of my weight at this time and am aiming to lose a few more pounds. Apparently excess abdominal fat can act almost like another organ, one that produces hormones that foster prostate cancer growth, so keeping weight low may be very important.

This use of low-dose thalidomide and Celebrex has worked for me, but I'm just offering my experience for thought for those on intermittent ADT. My impression as a layman survivor (with no medical credentials) is that this approach would not be appropriate for some of us. Among the relevant issues, there is a concern with Celebrex about cardio risks, which seem a concern mainly for patients who already have cardio issues. For thalidomide, in addition to some risk of blood clots and peripheral neuropathy - both potentially serious developments, and some other "adverse events" as the doctors term them, there are other potential side effects from thalidomide. I plan to post about my experience with these.

My impression is that use of thalidomide to extend ADT off-therapy periods is quite unusual. I first became aware of the tactic from an informal article written by Drs. Robert Leibowitz and Stephen Tucker, who had used it in their practice. I am not aware of any formal paper that discusses such use, though Drs. Leibowitz and Tucker did have a letter about such use published in a major journal. However, thalidomide is commonly used, especially as one element in drug combinations, for more advanced prostate cancer, though my impression is that Revlimid is taking over this role.

The bottom line for me is that the addition of Celebrex looks like the key to stabilizing my PSA during this third thalidomide phase of my ADT3 vacation. These tactics are giving me additional months of vacation from the heavier duty ADT drugs and time to research a try at curative therapy, based on the recent findings of no mets. I have now enjoyed a total of 25 months of vacation, with the aid of thalidomide for 10 of those months and Celebrex for the past 5 1/2 months. This is clearly the best I have done on thalidomide. The more expensive and advanced cousin of thalidomide, Revlimid, would likely also have worked.

At a time when some doctors are still telling patients with recurrences after primary therapy that ADT only is effective for about 2 years, I'm smiling because my current ADT vacation period has by itself been longer than that, and I've been doing well on IADT3 as sole therapy for a challenging case for well over 12 years! Finally, my impression is that many of the hundreds (perhaps a thousand or more) of men on IADT3 are doing as well as I have or better!

Jim

Last edited by IADT3since2000; 05-07-2012 at 02:23 PM. Reason: Typos and minor changes.

 
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Old 05-13-2012, 02:05 PM   #2
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Re: Low-dose thalidomide extending my vacation from ADT3 for prostate cancer, again!

I met with my oncologist last week, and we decided I would extend my PSA testing interval from one month to two months, both of us gaining some confidence that my PSA has truly stabilized around the 9.5 mark, thanks to low-dose thalidomide, Celebrex, and the rest of my current regimen. However, now that I may be staying on this regimen for an extended period, I am less willing to put up with some of the side effects.

I was willing to put up with the sluggishness I was experiencing from thalidomide during the cold weather months and while anticipating I would be going off the drug in about 6 to 8 months, but I was becoming more and more frustrated with that side effect. On the one hand, I have been able to cope well with the sluggishness by getting some extra sleep and by typically taking a half hour to hour nap in the afternoon; my days have been pleasant enough, and I have nearly always slept soundly. However, on the other hand, during the months since starting thalidomide until last week, I have lost at least an hour a day of time during which I felt energetic enough to reach out beyond my normal daily routine. That loss has reduced my interactions with others, including involvement with prostate cancer research and communication, such as participation on this board.

Therefore, for the past week I've added extra caffeine, and that seems to be working. I would have tried adding coffee months earlier, but my memory was that it had not helped in the past. Now I'm drinking about two cups of coffee early in the day. I overdid it one day and could not get to sleep at night for more than an hour - rare for me when I'm taking thalidomide; I ndeeded a long nap the next day. Sticking strictly to two cups of coffee, I feel I have moved closer to a normal schedule, and my wife has also noticed improvement. Here's hoping the extra caffeine works until I stop taking thalidomide.

In another development that may affect this thalidomide, Celebrex, etc., regimen, there was some news about Celebrex and aspirin last week that got my attention because I'm counting on daily low-dose (81 mg) aspirin to minimize the risk of blood clots while on thalidomide. The news was about preliminary research, in animals as I recall it, that aspirin might lose its anti-clotting capability if Celebrex was also being taken. I'm continuing with both the aspirin and the Celebrex, but I'll be keeping an eye on this.

Here's hoping for continued success.

Jim

 
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