Medical Forum / Diseases and Disorders / Prostate Cancer / January 2008
PSA still rising
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khildebrandt@casselsbrock.com - 16 Jan 2008 14:47 GMT I last posted in August as my husband's psa was on the rise. It was 1.16 in August. He had another test last week and it was 1.56. He has seen an oncologist at Mount Sinai in Toronto who has confirmed that the cancer has metastisized and they recommend that he start hormone therapy when his PSA hits around 4. He could start now but they agreed with my husband that since he's feeling great right now and is still sexually active, he can wait a bit. They also said that the hormones wouldn't really prolong his life, just help control the pain. They predict that he will feel good for another 2 years or so and then will enter a slow decline. It sounds to me like he has 4-5 years left.
On a selfish note, it's all rather gloomy and depressing. I'm 49 and having chats about funerals and cemetary plots. At least, being in Canada, money for treatment won't be an issue. My husband seems to be somewhat depressed and I think both of us should probably seek out a support group. Anyway, that's the way it is for now. Cheers, Karen in Toronto
tarhoosier@carolina.rr.com - 16 Jan 2008 15:44 GMT On Jan 16, 9:47 am, khildebra...@casselsbrock.com wrote:
> I last posted in August as my husband's psa was on the rise. It was > 1.16 in August. He had another test last week and it was 1.56. He has [quoted text clipped - 15 lines] > Cheers, > Karen in Toronto Dear Karen:
Thank you for your honest post. There is a distinction between the posts on this site by men and those by women, generally. Yours is an example of the open and emotional impact cancer has on the lives of partners and family members. I believe there is a message of hope within your husband's case. With a doubling time of more than a year, by the two dates and psa numbers you give, your husband may have years to go before he must initiate hormone therapy. And when that time comes, the most common response time is years again, ten years or more is common. This suggests that he, and you, have much more time than you calculate. Certainly no one can promise tomorrow, but the numbers in his case offer opportunity for him to benefit from treatments coming in the research world which may extend life, with quality, yet again. I know how reluctant doctors are to discuss life expectancy, and when they do, how poorly and pessimistically they perform. Trust the research and experience of many men on this. If your medical team has provided the 4-5 years that you mention, they are wrong. As one who is farther down the line than your husband I submit life is for living.
Justin Thyme - 16 Jan 2008 18:05 GMT My comment at the bottom.
>I last posted in August as my husband's psa was on the rise. It was > 1.16 in August. He had another test last week and it was 1.56. He has [quoted text clipped - 15 lines] > Cheers, > Karen in Toronto You have chosen a great group for support, help, and encouragement. Your husband's condition and concern is probably mirrored by many people here, and they're a wonderful group, believe me.
My PSA was much higher than your husbands and was detected and treated about six years ago. My urologist recommended surgery, and I trusted him. After that, I had a couple of hormone injections to reduce the PSA again, but only marginally effective. But then, I am maybe 20 years older than he is and worrying at his age (I assume at about your age) is absolutely counterproductive.
All the best to both of you,
Ken Bland
Alan Meyer - 16 Jan 2008 18:12 GMT >I last posted in August as my husband's psa was on the rise. It was > 1.16 in August. He had another test last week and it was 1.56. He has [quoted text clipped - 15 lines] > Cheers, > Karen in Toronto Karen,
I'm going to recommend something that is probably stupid, but I'm not sure there's anything to lose.
What I suggest is that your husband begin a regimen of diet and supplements that are thought to be useful against cancer. I'm suggesting that for two reasons.
One is that a friend of mine with very aggressive cancer was put on such a regimen by Charles "Snuffy" Myers, a leading prostate cancer oncologist. I don't know if it did any good. Myers is also treating him with very complicated hormone therapy, so it's impossible to separate the effects of the prescription drugs from the supplements. However, the fact that Dr. Myers thinks these things are worth doing says something to me. He is a nationally recognized expert.
The other reason is that your husband's PSA is rising relatively slowly. I think that means that the rate of tumor cell growth is only a little higher than the rate of tumor cell death. If that's true, and if the supplements promote cancer cell death ("apoptosis" is the technical term), then maybe they can tip the balance a little the other way. Just slowing down the process a little may have a much more significant effect in a slow growing cancer than slowing it down a little in a fast growing cancer.
Now the next question is what to take. Unfortunately, I don't know the answer. Dr. Myers had my friend (whose PSA reached 700 by the way) on 5 pomegranate extract capsules each day from:
http://www.lef.org/newshop/items/item00956.html
I don't know if these are better than cheaper ones from other sources, but you can look at what they contain and compare them to others.
He's also taking megadoses of vitamin C, but I don't know the specific dosage.
Other things that people have suggested include: lycopene, EGCG (green tea), vitamin D, and maybe other things. A low fat diet, with lots of fruits and vegetables is also often recommended. If you search the archives of the newsgroup you'll see recommendations from others who know more than I do about this.
I don't see how this can hurt.
Finally, I'll make a few remarks about hormone therapy.
The "two years" that the oncologist predicted may stretch considerably longer than that. Steve Kramer, a stalwart contributor to this group, began hormone therapy in July, 2003. Four and a half years later, his PSA is still undetectable.
Steve started HT early, while his PSA was still below 1.0. But it's working well for him. Since your husband's PSA growth seems reasonably slow, HT may work very well for him too.
Hormone therapy does eventually fail, but that's not quite yet the end of the line. There is "second line" hormone therapy (ketoconazole and/or estrogen patches) that works well for some men. Then there is chemotherapy. There are also a number of new therapies in clinical trials that may add more months or years and may be available by the time other therapies stop working for your husband.
I know that, psychologically, all of this is very, very difficult. It's necessary to be realistic and not live on false hopes. But I think it's also important not to give up on life. There are at least a few very good years ahead, and a few years with problems. Even the years with problems can be good years.
I was on a cruise to Alaska once and sat at dinner with a lady in a wheel chair and her husband. It turned out that she was dying of cancer and had only a short time to live, but she had always wanted to see Alaska. I was impressed by the lady's good spirits, by how much interest she took in the conversations at dinner, by how fine a relationship she enjoyed with her husband, and by how much she seemed to enjoy the scenery in Alaska. I learned something about how to live from her.
Best of luck to you both.
Alan
khildebrandt@casselsbrock.com - 16 Jan 2008 19:07 GMT > <khildebra...@casselsbrock.com> wrote in message > [quoted text clipped - 107 lines] > > - Show quoted text - Thanks for your responses Alan - I should add that my husband has already had a Prostatectomy, Radiation and began seeing a nutritionist and taking supplements as soon as he found out he had prostate cancer, which was about 7 years ago(at age 41). I believe the doctors came to their conclusions because of his gleason 8 (3 +5) and path report. However, as you point out, there is always hope and new developments coming down the road...
Alan Meyer - 16 Jan 2008 22:23 GMT ...
> Thanks for your responses Alan - I should add that my husband > has already had a Prostatectomy, Radiation and began seeing a [quoted text clipped - 4 lines] > there is always hope and new developments coming down the > road... 41 is so young to have cancer. If he were 75 when he was diagnosed, his treatment, which controlled his cancer for 7 years, would probably have been considered a success.
If you want to see what kinds of experimental treatments are available, here are the primary U.S. websites for searching. I believe they include many trials offered in Canada.
http://www.cancer.gov/clinicaltrials/search or http://clinicaltrials.gov
Here's a website that might be a starting place in Canada:
http://www.cancer.ca/ccs/internet/standard/0,3182,3172_14039__langId-en,00.html
Again, I wish the best to you and your family.
Alan
callalily - 17 Jan 2008 03:09 GMT Dear Karen,
I am so sorry you find yourself in this situation. I am about the same age as you, and it hurts when you are hit with this (relatively) young. The one thing I would do is add Vitamin D to your husband's diet. I am not big on supplements: all my husband takes is pom juice and pills. However, I've been following some of the research on Vitamin D, and I think it could have a positive impact without affecting your husband's QOL. There was an article in July in the NEJM, which I read. It verified the powerful benefits of Vitamin D for various conditions. And you can take very high levels without incurring toxicity.
I had my husband's D3 levels tested by his internist recently, and he came up short: a "20" -- normal range is 20-100. A friend sent me Dr. Myers' recommended regimen. I am going to up his D3 intake from 1,000 IU/day to 9,000 for starters. However, he will have to be monitored by a doctor periodically. And the next step is to find a doc who will do this. Maybe a med onc.
Am happy to share any of this info with you.
Also, I saw a post in PPML (PC group run by acor.org) where they are always talking about this subject. Somebody cited recommended levels of Vitamin D for men with PC, as stated by several oncologists. The fact that prestigious, mainstream oncs, like Donald Trump of Roswell Cancer Center, recommend higher intake of Vitamin D, makes me take this seriously,
Best of luck.
Leah
> <khildebra...@casselsbrock.com> wrote in message > [quoted text clipped - 107 lines] > > - Show quoted text - I.P. Freely - 17 Jan 2008 23:23 GMT >> they recommend that he start hormone >> therapy when his PSA hits around 4. He could start now but they >> agreed with my husband that since he's feeling great right now and is >> still sexually active, he can wait a bit. They also said that the >> hormones wouldn't really prolong his life, just help control the >> pain. Support for that general position is widespread in the research and the books, and there's a lot to be said for higher QOL for several years vs a few months' extra heartbeat. I plan to delay ADT when my G-8 PC returns until some significant new evidence changes that paradigm and convinces me ADT will make my life significantly BETTER rather than significantly worse.
I.P.
Steve Kramer - 16 Jan 2008 22:41 GMT >I last posted in August as my husband's psa was on the rise. It was > 1.16 in August. He had another test last week and it was 1.56. He has [quoted text clipped - 13 lines] > somewhat depressed and I think both of us should probably seek out a > support group. Anyway, that's the way it is for now. I am so sorry, Karen. Your husband (you've never told us his name) and I were both diagnosed in 2000, both young (he 41 and me 46), both T3, and both with PSAs in the mid-teens (he 13 and me 16). We both went with RRP and both ended up doing radiation. For a long time, he did much better than me. I chose ADT in 2003 after my PSA registered 0.32. His didn't get that high until February 2007.
Personally, I thought ADT should have started then. It has done me good so far. But, I have no mets.
My prayers go out to you.
 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, <0.04 10/11/07 Non Illegitimi Carborundum
kh - 17 Jan 2008 00:10 GMT On Jan 16, 9:47 am, khildebra...@casselsbrock.com wrote:
> ... They predict that he will feel good for another 2 years or so > and then will enter a slow decline. It sounds to me like he has 4-5 > years left. My opinion is that opinion might be wrong. I straight out asked my docs and was told that no one knows.
Their words, "we've tried to predict what will happen but have not been able to do that in individual cases."
Find the most expert medical oncologists you can, work with them, live your life to the fullest.
-kh you know what to do.
Gourd Dancer - 17 Jan 2008 03:56 GMT Karen, I am not a Doctor, just a Patient. You might read the following as I started this trial in July 2004 two months after my first Lupron (PSA was at 32.0 and start of chemo 3.0; plus I had two mets to the spine):
Trial of Chemotherapy plus Hormonal Therapy as Initial Treatment for Unresectable / Metastatic Adenocarcinoma of the Prostate H. Henary, R.J. Amato; The Methodist Hospital/The Methodist Hospital Research Institute/Genitourinary Program, Houston, TX
Background: Chemotherapy is a setting of hormone refractory prostate cancer has shown palliative benefit especially with substantial PSA decline strongly suggesting that disease modifying potential exists. Recently, chemotherapy is beginning to show a survival advantage. The stage is set for chemotherapy given earlier in a disease course. As a working hypothesis, we suspect that the transformation from an androgen-dependent to an androgen-independent phenotype is mediated by the expansion of an androgen-independent clone already present at the time of androgen deprivation. If this model is correct, then it would be desirable to bring treatment to bear on the androgen-independent component when the corresponding tumor burden is minimal. Thus, we view the androgen-independent component as analogous to "microscopic residual" or "micro-metastatic" disease for which adjuvant chemotherapy has shown to be effective in other contexts.
Methods: Each course of chemotherapy lasts for 8 weeks. Patients were treated in weeks 1, 3, and 5 with doxorubicin 20 mg/m2 as a 24-hour intravenous infusion on the first day of every week in combination with ketoconazole 400 mg orally 3 times a day daily for 7 days. In weeks 2, 4, and 6, treatment consisted of paclitaxel 100 mg/m2 intravenously on the first day of every week in combination with estramustine 280 mg orally 3 times a day for 7 days. After completion of 3 courses of chemotherapy, hormone management [medical castration plus casodex (at the completion of chemotherapy)] is initiated at the start of chemotherapy and for a total of 24 months.
Results: Nineteen men have been enrolled with a median age of 63 (48-76). Fifty percent of the men had no prior local therapy, while the other 50% either failed surgery, radiation therapy, or surgery plus radiation therapy. Fifty-nine percent of the men had Gleason 7, 12%/8, 24%/9, and 5%/10. Thirty-five patients presented with bone metastasis and 50% presented with nodal involvement. The median PSA reduction to date has been 95.6%.
Conclusion: Enrollment is ongoing. Further information regarding PSA response, associated radiographic response, and toxicity will be presented.
Karen, note that I am still undetectible and the two mets are gone.
Gourd Dancer
>I last posted in August as my husband's psa was on the rise. It was > 1.16 in August. He had another test last week and it was 1.56. He has [quoted text clipped - 15 lines] > Cheers, > Karen in Toronto
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