Medical Forum / Diseases and Disorders / Prostate Cancer / September 2007
PSA update
|
|
Thread rating:  |
BH - 17 Sep 2007 18:38 GMT After being on Casodex for just over nine months, it brought my PSA down from 0.27 to 0.10. It was at 0.10 for quarterly tests in May 2007 and August 2007. I stopped taking Casodex on August 10, 2007. My PSA went up to 0.14 from a blood draw on September 11. The numbers are still small, but a 40% increase in one month is not encouraging. I am staying off Casodex and plan to have PSA checked again in 6 weeks.
For anyone who might be interested in another bit of anecdotal information, here's a summary of the side effects I noticed while taking Casodex.
Hot flashes (flushes) was the first side effect I noticed. Initially it was very unpleasant. The heat waves seemed to diminish or I got used to them. It was not so objectionable after a while. After the heat waves diminished, I just feel hot most of the time. I notice no difference since I've stopped taking the medication. I still feel hot most of the time.
Memory problems became a significant issue for me. In addition to not being able to remember lots of things, my mind just seemed "fuzzy". This was very troubling. The memory problems and "fuzziness" went away after about three weeks being off Casodex.
The lack of energy got gradually worse and became very troubling. I knew it was bad, but I didn't realize how bad it was until I quit taking Casodex. At the end of nine months on Casodex, my energy level was so low I didn't even feel like taking a walk in the evenings. Within about three weeks after going off Casodex, my energy level was so high that I felt like starting to paint the outside of the house. (The paint job is almost finished.)
Soreness of muscles was a significant problem. My right shoulder hurt all the time. My thighs and calves were constantly sore. All this significantly diminished after about three or four weeks being off Casodex. It continues to improve. My right shoulder only hurts when I move it through certain positions.
Swelling and soreness of my breasts was more than annoying. Breasts became puffy and a lump about the size of a golf ball developed behind and to the outboard side of each nipple. These lumps became so tender and sore that any pressure at all on them caused a lot of pain. This has gradually diminished after about five weeks off Casodex and continues to improve.
I have not significant incontinence problems after surgery and radiation, but, I do need to be careful about minor leaking when in a squatting position or when I'm really tired. Casodex made this problem worse. After stopping Casodex, the problem has returned to "normal".
G.I. effects:
While taking Casodex, my stool was always in the range of very soft to almost liquid. This was unpleasant, but manageable.
Increased sensitivity of G.I. system. I quickly learned that I had to totally avoid some foods. A Costco hot dog, for example, would have me in the bathroom with diarrhea starting within about 3 or four hours. That would last for several hours.
Excessive flatulence was very noticeable. Flatulence, alone, was not a big problem. The excessive flatulence combined with the very soft / almost liquid stool was a significant problem.
My appetite while on Casodex was erratic, at best. I frequently felt the need to eat to suppress minor nausea. Sometimes I felt this need although I was not hungry at all. Since I stopped taking Casodex, my appetite is still erratic. I don't feel the need to eat to suppress nausea, though.
Weight gain was a problem. I had to try very hard to eat less and to exercise some just to be able to keep from gaining weight. Exercise was difficult with diminished enerty level. After stopping Casodex, I have lost about 5 pounds. My activity level is much greater and I'm eating better. My weight is fluctuating and I believe I can lose more weight after my activity level is more constant.
My mood and emotions were a big problem. While on Casodex I was sad and/or depressed almost all the time. Although I knew I felt sad and depressed, my wife commented, after I had been off Casodex about three weeks, about how much better my mood was.
I've been off Casodex for about five weeks and couldn't be happier about it. I'll keep an open mind about possibly going back onto ADT after the next PSA test; but, right now I'm thinking I'll pass on additional ADT. Taking medications that may extend my life by some unknown amount of time doesn't make much sense to me if I'm going to feel like hell all the time.
Best wishes to all of you! RP in 1995 RT in 2000 ADT (Casodex) 10/06 - 8/07
burney dot huff at mindspring dot com
Steve Kramer - 17 Sep 2007 20:35 GMT > My > PSA went up to 0.14 from a blood draw on September 11. Damned sorry to hear that Burney. I would love to take that step one day, but it seems it's the only thing keeping me alive.
> For anyone who might be interested in another bit of anecdotal > information, here's a summary of the side effects I noticed while > taking Casodex. I think we have a clear consensus that anecdotal is about all we can rely on. Thanks for your information.
> Hot flashes (flushes) > Memory problems [quoted text clipped - 8 lines] > Weight gain was a problem. > My mood and emotions were a big problem. That's quite a list you have; and great technical discussion for each. My personal experience is similar, except for the GI functions and erratic appetite.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04 (06/12/2007) Non Illegitimi Carborundum
bocacerrada@yahoo.com - 17 Sep 2007 21:08 GMT > > My > > PSA went up to 0.14 from a blood draw on September 11. [quoted text clipped - 38 lines] > PSA <0.04, <0.05, <0.04 (06/12/2007) > Non Illegitimi Carborundum I don't want to be a cheerleader for Casodex, but after two years of intermittent use - six months on and 10 weeks off - I've had little variation in PSA and no significant SE problems. I've had some breast enlargement and pain, but no lumps or major discomfort; a little muscular atrophy; some loose and dry skin; and a little fatigue. But, I'm now 75 and don't expect to feel as well as I did at 65. I exercise daily by swimming and riding a stationary bike. I eat well, drink beer and wine, and have gained no weight. My bowels are functioning normally. My last PSA was 0.01. I'm not about to add Lupron to the medication list which now includes Avodart, Celebrex and Fosamax. It has been five years since Dx and three years since my last cryo. I'm looking forward to being 80.
Jack in Phoenix
assure@nospam.net - 17 Sep 2007 21:39 GMT I wouldn't worry about being seen as a cheerleader for Casodex, Jack. I can confirm that it does work "as advertised" in getting the PSA down. And, if a person is able and willing to put up with the side effects to control the PSA, it's an effective medication.
I, also, had the loose, dry skin. The frequent and liberal use of Lubriderm essentially took care of the dryness. Another side effect I didn't mention was the change in body hair. I think that probably relates to the skin dryness. The hair on my head thinned and became finer-textured. The hair on my arms and legs was very sparce. A lot of the hairs seemed to be broken off. The "hairless" condition was sort of annoying, but not a serious problem to me. After being off Casodex for five weeks, the skin dryness is gone and my hair is well on its way to getting back to normal.
You sound like you are doing well. I'm happy for you and hope that we can both be around for me to wish you a happy 80th. I'll be 69, then.
I appreciate your information on your intermittent use of Casodex. If I go back on at all, it will probably be some sort of intermittent schedule.
Thanks and best wishes.
Burney
>I don't want to be a cheerleader for Casodex, but after two years of >intermittent use - six months on and 10 weeks off - I've had little [quoted text clipped - 10 lines] > >Jack in Phoenix Steve Kramer - 18 Sep 2007 01:19 GMT > I don't want to be a cheerleader for Casodex, but after two years of > intermittent use - six months on and 10 weeks off - I've had little [quoted text clipped - 8 lines] > Fosamax. It has been five years since Dx and three years since my > last cryo. I'm looking forward to being 80. Glad to see you drop in for a visit, Jack; especially with the PSA news. You've been fighting the bastard for five years now. With a 0.01, I cannot imagine you won't see 80 (assuming normal disclaimers of busses, meteors, and jealous husbands).
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04 (06/12/2007) Non Illegitimi Carborundum
Alan Meyer - 18 Sep 2007 19:30 GMT On Sep 17, 4:08 pm, "bocacerr...@yahoo.com" <bocacerr...@yahoo.com> wrote:
> > "BH" <ha...@nospam.com> wrote in message > [quoted text clipped - 57 lines] > > Jack in Phoenix Burney,
One interesting difference between your experience and Jack's as reported above is that Jack was on intermittent therapy, 26 weeks on and 10 weeks off. If your PSA does go up significantly, maybe that's a way to control it to a considerable degree but with fewer side effects.
Also, I know that some people in this group have taken Megace or other drugs to counteract some of the Lupron side effects. That may be helpful to you, or may not. Someone who has tried it may be able to say more.
Still another question that comes to my mind is, what is the dose that you were taking? It appears that it was very effective. Perhaps a significantly smaller dose would be equally effective but with fewer side effects. You and your doctor might try to find the minimum dose that gives you the PSA response you want with the least side effects that you don't want.
Finally, it is relatively unusual in the U.S. for a person to be given ADT consisting only of Casodex. Was Lupron or one of the other leuprolides tried? It has some of the same side effects, and some of its own. But maybe they aren't all the same. It might be worth discussing with your oncologist.
Best of luck.
Alan
BH - 19 Sep 2007 16:13 GMT >Still another question that comes to my mind is, what is the dose >that you were taking? I was taking one, 50 mg tablet per day. And, it was very effective!
>Finally, it is relatively unusual in the U.S. for a person to be >given ADT consisting only of Casodex. I was on Casodex, alone, because I haven't seen good evidence that a combination is significantly more effective than one and I didn't want the additional side effects for possible marginal improvements. After I see what my PSA is in another 6 weeks, I'll try to be open to re-thinking all options. Estrogen sounds like an interesting possibility. Some intermittent schedule may be better, also.
Thanks for your thoughts and good wishes.
My best to you, also.
Take care, Burney
RP in 1995 RT in 2000 ADT (Casodex) 10/06 - 8/07
burney dot huff at mindspring dot com
Alan Meyer - 20 Sep 2007 20:12 GMT > >Still another question that comes to my mind is, what is the > >dose that you were taking? > > I was taking one, 50 mg tablet per day. And, it was very > effective! I seem to recall that some people on Casodex have been prescribed 150 mg per day. If you have such effective cancer control with 50 mg, that sounds like excellent news. Your cancer may be particularly hormone sensitive which, if true, may mean that you will benefit longer than most men from HT.
So that's very good news in with the bad news about the side effects.
If and when you do go back on Casodex, maybe the doctor can consider prescribing 25 mg per day, or even less.
Again, best of luck with it.
Alan
assure@nospam.net - 17 Sep 2007 21:24 GMT >> My >> PSA went up to 0.14 from a blood draw on September 11. > >Damned sorry to hear that Burney. I would love to take that step one day, >but it seems it's the only thing keeping me alive. Thanks, Steve. I know what you mean about taking a hard step. Each of us has to decide when it's time. I sincerely hope you can stay alive a long time. Who else would keep such good records for this group? :-)
>That's quite a list you have; and great technical discussion for each. My >personal experience is similar, except for the GI functions and erratic >appetite. I had my gall bladder removed several years ago. That caused quite a change in my ability to eat anything I wanted. But, I adapted OK. Mainly, I just have to avoid eating too much grease. I think that maybe with that existing "weakness" of my stomach and intestines, the Casodex just made it worse. That's only a guess, though. Anyway, now I'm back to the condition I was in before Casodex. I'm really enjoying the occasional Costco hot dog!
Take care, Steve!
Burney
ron - 17 Sep 2007 21:51 GMT On Sep 17, 11:38 am, BH <ha...@nospam.com> wrote...snip... I'll keep an open mind about possibly going back onto ADT after the next PSA test; but, right now I'm thinking I'll pass on additional ADT. Taking medications that may extend my life by some unknown amount of time doesn't make much sense to me if I'm going to feel like hell all the time. ----------------------------------------------------------------------------------------------------------------
Hi Burney...Men who have strong SEs with traditional ADT might want to consider estrogen therapy. It is not SE free (gynecomastia), but the mental fog, bone degradation, hot flashes and many other "typical" ADT SEs are absent. Here's a link to an earlier post that lays it out a bit more clearly
http://tinyurl.com/25ol86
...best wishes and good health, ron
Heather - 17 Sep 2007 22:54 GMT Men who have strong SEs with traditional ADT might want to
> consider estrogen therapy. It is not SE free (gynecomastia), but the > mental fog, bone degradation, hot flashes and many other "typical" ADT [quoted text clipped - 4 lines] > > ...best wishes and good health, ron Hi Ron and perhaps Alan Meyer......
A while back one of you, if not both, asked me about Ron going on estrogen therapy now that he is off HT. When we went to Sunnybrook's Cancer Centre, I made a point of asking our rad oncologist (and researcher) about it and he said the following.....
We do NOT use it because it causes heart problems at 5 mg. We tried lowering it to 3 mg. and no change.
However, there were less heart problems at 1 mg. BUT was it really working all that well with regard to PCa.
I had said I knew the researchers were not in favour of it, but wasn't sure why. Now I know their thinking. YMMV.
Heather
ron - 18 Sep 2007 00:46 GMT > Men who have strong SEs with traditional ADT might want to > [quoted text clipped - 24 lines] > > Heather Hi Heather...Was your doc talking about oral or transdermal administration? This is an important distinction. Oral is what was practiced back in the 40s-50s and did have a small, but significant percentage, of adverse cardio events. The transdermal route is free of these events (see my link and the work of Beer and Ockrim), but still works well at treating PCa. I know you work with Klotz and can't believe he would have said this about the transdermal route...Best wishes and good health, ron
Heather - 18 Sep 2007 02:07 GMT >> "ron" <oit...@yahoo.com> wrote in message >> [quoted text clipped - 25 lines] > can't believe he would have said this about the transdermal > route...Best wishes and good health, ron I honestly didn't think to ask Dr.Loblaw, but would assume it was the patch. I just ran a Google search for Canada and nowhere did Klotz recommend it over conventional HT. But I did find a meeting in the Netherlands in July of 2006 and one of the other doctors had this to say.....(Klotz was Chair for this meeting)
quote.... There is renewed interest in the use of estrogen therapy, Professor Akakura noted, saying that it could produce testosterone suppression without significant bone loss and was associated with high PSA response rates in androgen-independent disease. Early use of estrogen therapy is limited, however, as it is associated with significant cardiovascular effects (myocardial infarction, stroke, pulmonary embolism). unquote...... http://www.prostateline.com/prostatelinehcp/9370_22111___.aspx
Dr. Klotz does work with Drs. Morton and Loblaw, but he is Head of Urology and my guys are the brachytherapy wizards. Sunnybrook Health Sciences is a very large hospital and their Cancer Care Centre is not in the same building as the Urology Unit. It was Dr. Loblaw that told me this re estrogen 4 weeks ago and he had mentioned it a year or two ago. His opinion is (to my thinking) that there are more effective methods out there.
Dr. Klotz has the study going on *watchful waiting* and today there was another 8 page section in the largest Toronto newspaper on prostate cancer. One of his articles was in there. No mention of estrogen anywhere in those 8 pages. But "J" cpvered it pretty well a couple of days ago. Unfortunately it will probably take about 20 years for results. 8-((
http://www.thestar.com/article/256376
Sorry I couldn't answer more fully, but I did ask and I do remember Dr. Loblaw mentioning ketaconazole and 2 others that escape me now as being more effective.
Cheers......Heather
BH - 17 Sep 2007 23:26 GMT Thanks, Ron. I appreciate the suggestion. I will check it out and keep it in mind to discuss as a possibility after I get the results of the next PSA test. Gynecomastia would be undesirable, but alone would not be overwhelming. It was the accumulation of all the side effects of ADT that made it unacceptable for me.
Thanks, again, and best wishes to you, too.
Burney
>On Sep 17, 11:38 am, BH <ha...@nospam.com> wrote...snip... >I'll keep an open mind about possibly going back onto ADT after the [quoted text clipped - 13 lines] > >...best wishes and good health, ron RP in 1995 RT in 2000 ADT (Casodex) 10/06 - 8/07
burney dot huff at mindspring dot com
ron - 18 Sep 2007 00:56 GMT > Thanks, Ron. I appreciate the suggestion. I will check it out and > keep it in mind to discuss as a possibility after I get the results of [quoted text clipped - 31 lines] > > - Show quoted text - Hi Burney...Here's an excerpt related to gynecomastia from one of Beer's papers. It doesn't happen all the time, and appears to be relatively moderate in terms of severity...ron
"In our phase II study with transdermal estrogen, grade 1 and 2 gynecomastia occurred in 58% of patients. There was no grade 3/4 breast toxicity. Prophylactic breast irradiation reduced the incidence of grade 2 breast toxicity from 27.3 to 15.4%; however this was not statistically significant."
|
|
|