Letters to PSA RISING

Concern About PSA Testing

From Laurence Mayers, January 22, 2001.

I'm very concerned about the general process of using PSA to diagnose prostate cancer. My personal experience has been that urologists often take blood for a PSA test following a vigorous digital exam, and without advising patients to abstain from orgasm for at least two days before the blood is drawn. Yet, from what I read in the latest book by Dr. Patrick C. Walsh, a leading scientist in this field, both of these stimulations of the prostate can raise PSA and free PSA considerably!

I assume that all urologists know this, which would mean that these practices are performed with the physician knowing he is actively increasing the patient's PSA level (and in turn, increasing the number of biopsy procedures and perhaps other surgeries he will perform).

If the patient's PSA is at a certain level, the physician states to the patient that he has, say, "a 28 percent chance of having prostate cancer," and should therefore have a biopsy. However, according to Dr. Walsh's new book, 30 percent of all men over 50 years old have "incidental" cancer in their prostates, which never cause a problem, and 80 percent of cancers diagnosed, regardless of PSA tests, are not metastasized tumors. So it also seems misleading for physicians simply to tell men that they have, e.g., "a 28 percent chance of having prostate cancer" when the chance that the patient has a serious condition that might someday cause him to suffer or die is perhaps less than six percent (from what I can gather from the statistics presented in Dr. Walsh's book).

I can understand why scientists wish to promote early detection of prostate cancer in the hope of reducing deaths from this disease. However, it seems to me that when practicing urologists do not assiduously collect valid PSA blood samples by advising their patients not to ejaculate beforehand, and by doing the digital exam AFTER the blood is drawn, the validity of the whole enterprise becomes highly questionable. I think that as people become aware of these discrepancies, they will not be inclined to trust urologists very much, nor to submit to painful biopsies that could cause infection, because they have insufficient reason to trust the test results.

I am writing to find out if anyone has any better insight into this problem than I have been able to gain from looking on the Internet and reading books such as the one by Dr. Walsh. He, by the way, is definitely encouraging people to get their PSAs and biopsies. Even so, I have to wonder how much sense it makes from the point of view of most patients.

Laurence Mayers

Windfall to Drug Companies

From: Syd Parlow, Nov. 3, 2001

I have sent the following to my senators. While it is a little off subject for your fine page it clearly will impact heavily on most of your subscribers. If the Wall Street Journal prints it - it must be a major concern.

I would beg that you make an effort to have your readers contact their reps to defeat this massive gift to the unneedy. Thnx, Syd Parlow

Yesterday's Wall Street Journal (Nov. 2, 2001) had an article on the front page---the 5th column, 5th article down---re the patent extension bill. This would give a MASSIVE windfall to the drug companies of $14,000,000,000. ($14 Billion!!) dollars!

Unconscionable in the extreme. This is no different than a tax increase that would fall mostly on those least able to afford it and benefit an industry that has had unlimited growth and government largesse. This while tax decreases are in the works for the most able and corporations.

This industry has very recently demonstrated it's lack of concern for the public in the matter of CIPRO.

We beg that you lead the effort to stop this giveaway of the dollars from people with real needs to companies of massive wealth.

Many thanks,
Sydney Parlow
16 Harcourt Street
Boston, MA 02116

Background to Syd's letter -- "Patent law is quite clear in that the period of time covered by a patent is 20 years from the time the patent is filed. A proposed revamping calls for a guarantee of 17 years protection after the Patent and Trademark Office grants a patent. In August 1999 legislation was introduced and passed in the House that extended patent protection for an extra 3 years for certain drugs.... In effect this revamping will grant an additional 3 years patent protection for 7 drugs in particular. The drugs that are covered under the pending legislation include Eulexin a prostate cancer drug from Schering-Plough and Penetrex a urinary tract infection drug from Rhone- Poulenc-Rorer . See Patents and Prescription Drugs

Battling prostate cancer since 1954
Sun, 1 Jul 2001 17:37:42 EDT
I have had forty radiation treatments, been on and am still on lupron. Tried pc spes, tried nizoral and hydrocortisone and am now on (chemo) taxotere. Taxotere did drop my psa from 92 to 21 but has now reached a plateau. I will now be adding gemzar in addition to taxotere. They will be given every other week.

Do you have any ideas regarding prostate cancer and what I have stated above ????

Emile

From: Reagan Houston
Subject :Vitamin C

Vitamin C is good for cancer therapy, not perfect, but good. See my web site http://www.cancertherapies.org for details, or the letter below that I sent to the local news paper.

June 15, 2001
Re: Vitamin C
The Editor
The Times News, NC

Dear Sir:

Vitamin C. I take 10,000 mg per day. The recent article on the possible hazards of vitamin C is typical but meaningless. Test tube results showed an adverse reaction of "C" toward some cells. Imagine what would happen if they had tested radiation or chemotherapy the same way.

Linus Pauling's cancer patients lived four times as long (12 months vs. 3 months) as the controls. Dr. Abram Hoffer, "Vitamin C and Cancer" got even better results with 12,000 mg/day and other supplements.

Naturally vitamin C is untested. The cancer community prefers to study genes, radiation and chemotherapy. The closest that the cancer community came to testing vitamin C was by C. G. Moertel in the New England Journal of Medicine, 1985. He was asked to feed 10,000 mg/day of vitamin C as long as the patients lived. Arbitrarily, he chose to feed the vitamin for only 2 1/2 months even though most of his vitamin and control patients lived 11 months. He didn't test Pauling's method. However, most of the medical profession and the press believe that vitamin C is useless for cancer.

As for me and my cancer, I will continue vitamin C at 10,000 mg/day.

Very truly yours,

Reagan "Rick" Houston
http://www.cancertherapies.org

From: Clyde Smiley
Subject: RP
Date sent: Thu, 28 Sep 2000

In March 1995 my GP found a growth on the prostate. He immediately did a PSA and the results was 22.5. I got an appointment with Dr. Michael Koch and Vandy hospital Nashville Tn. He did a biopsy and the results showed PC. In August 1995 he did a RP. My gleason was 8. Bone scans and MRI showed no cancer in the body other than the prostate.

In August, 1995 Dr. Koch did a RP. Three months later my PSA went up to 01.00. Dr Koch ordered thirty-five external-beam radiation treatments. My PSA went down to the lowest reading that could be read at that time. It stayed there until August 1998 at which time it went up to 00.10. In August 1999 it went up to 00.16.

None of this was alarming but did show that the PSA was on the rise. In August 1999 I started taking Vitamin C, Vitamin E. and 12 ounces of tomato juice daily and 2 quarts of magnetized water each day. In August of 2000 my PSA was 00.02.

I have had no problems associated with RP except impotence, which was caused by the radiation. Dr. Koch is now at University of Indiana. I would highly recommend him.

Clyde Smiley
Mayfield, Kentucky

Subject: Soy - Lycopene
From: Gus Galloway
Date sent: Thu, 21 Sep 2000

I had a prostatic biopsy about four months ago since my psa jumped from 2 to 4 and an exam showed some enlargement. My urologist said there were some abnormal cells that indicated another biopsy should be done within six months. His comment was that there was a fifty fifty chance of my prostate becoming cancerous.

I mentioned my concern to my massage therapist who said perhaps I should learn something about lycopene and turning to the 'web' I did just that.

What I learned was that lycopene has a definite potential for protection and perhaps prevention of prostatic cancer.I began to drink two glasses of a tomato based juice a day and taking a lycopene supplement from my local health food store.

Then I found a book written by Bob Arnot, M.D.concerning prevention of prostatic cancer and learned that soy protein was also beneficial. I have consumed one and sometimes two soy protein milkshakes of my own making for the last three months.

My most recent general physical by my primary care physician included blood work which showed a drop in psa to 1.14.A fringe benefit was also a drop in cholesterol and triglycerides.

I don't know how this is going to play out but for sure I am going to continue my practice of lycopene and soy intake. This may be of benefit to some or not - I would like to hear of others who may or may not have had similar success.

Gus Galloway

Subject: Rain Tasters
From: "Roger Brady"
Date sent: Tue, 25 Jul 2000

I just had the distinct privilege of reading the poems Molly Sugarman put together under the title "Rain Tasters". I cried! I am 52 and had a RRP last April. I know the shell, the indifference and the hurt you describe and I can't tell you how to break through.... my wife has tried and failed.... maybe it's me that has really failed her (married 31 years next month)...... but thank you Molly for the feelings and sensitivity you showed me this afternoon.... Roger

From: unista
Subject: radiation
Date sent: Sun, 16 Jul 2000

i had radiation treatment at johns hopkins. 2 years later after 3 operations to repair radiation damage i find it didn't work. they may be famous for their surgery, otherwise they are way behind. the only place i would have confidence in after reading everything i can find is memorial sloan kettering.

From: Ralph Valle
Subject: Exisulind Follow Up
Date sent: Sun, 25 Jun 2000

I figured that someone was going to react to my comments. In the first place I am very aware of the sulfide metabolite of sulindac. It is interesting to note that Dr. Lange is troubled by the fact that I did not mentioned the sulfide metabolite. Since we were talking about Exisulind and Sulindac metabolizes to a sulfone form which is equivalent to Exisulind, as well as the sulfide form, I just mentioned THAT metabolite because it was the same compound as Aptosyn.. My viewpoint as a patient and survivor is that if this sulfone metabolite can help patients, those fighting for their lives should give the existing drug a try.

My intent was not to deprecate the value of Aptosyn, but to offer information to those that might want to try Sulindac without having to wait for Aptosyn to be approved. If an existing medication can help someone at a modest cost, why not mention it? It is also interesting to note that Dr. Lange ignores the fact that sulindac sulfide is both a COX-1 and COX-2 nonspecific inhibitor and as such is very much involved in interfering with arachidonic acid metabolites such as PGE-2. Besides, the possible gastric side effects of this medication might be pale compared to advanced cancer side effects...

When sulindac and exisulind were tested in liver cancer, both proved to be equally effective in promoting apoptosis and slowing things down, so it might be worth trying sulindac in prostate cancer as well. Aptosym seems to be effective against PCa so there is a good chance that sulindac will slow things down also in spite of the potential gastric side effects.

Source:

Rahman MA et al. Sulindac and exisulind exhibit a significant antiproliferative effect and induce apoptosis in human hepatocellular carcinoma cell lines. Cancer Res 2000 Apr 15;60(8):2085-9.

Godspeed,

Ralph

From: Art Lange
To: [email protected]
Subject: Article on Exisulind in PSA Rising
Date sent: Thu, 8 Jun

Thank you for the nice article about Exisulind, which describes the results of the prostate clinical trial for Aptosyn.

I was a bit troubled by the comments of Ralph Valle who was quoted in the sidebar and who seems to miss the point that Sulindac has two metabolites. One is Sulindac Sulphone - Exisulind (Aptosyn) and the other is Sulindac sulfide which he does not mention. The compound Sulindac sulfide has the NSAID activity with its COX-1 inhibitor activity, and according to Merck, is the active ingredient of Sulindac (Clinoril). Unfortunately for most patients on Sulindac, there are usually severe gastric distress side effects from long term use of Clinoril because of the Sulindac sulfide COX-1 inhibitor metabolite. The excitement about Aptosyn is that it can be taken for long periods of time with no gastric side effects. If the off-patent Sulindac which is available for low cost turns out to be too toxic to the patient, then the patient can take Aptosyn (after FDA approval). Cell Pathways has publicly stated that the patient cost for Aptosyn will be around $2000 to $2500 per year.

Arthur F. Lange, Ph. D.

From: J Kureczka
Date sent: Thu, 8 Jun
Subject: Regarding Exisulind

Dear Editors,

Regarding your article on exisulind and the remarks by Ralph Valle, exisulind is NOT the same thing as sulindac. Yes, sulindac is metabolized into 2 molecules, one of which is sulindac sulfone or exisulind. But it is the other molecule, sulindac sulfide that is the NSAID and responsible for the gastrointestinal side effects associated with long-term sulindac therapy. Sulindac sulfide acts on COX I and II and inhibits prostaglandin synthesis. Exisulind, on the other hand, has NO effect on these targets but through its effect on a novel cGMP-PDE-5 that is found in abnormal cells triggers the death of those cells. In FAP patients who have been on exisulind for 3 years, investigators have seen none of the serious gastrointestinal side-effects associated with sulindac therapy. So indeed, exisulind is a new molecule and the first of a new family of compounds.

Sincerely yours,
Joan Kureczka

Re: Gary Elgort's story -- I was enthralled and couldn't stop reading. My Dad has PCa, he's 62, has had a course of external beam radiation therapy, and has since had a reccurrence. But it is extremely early stages and has not gone beyond the capsule, so here's hoping and praying and so on...
      I could relate to your story, the emotions that you are faced with and the sheer helplessness and absolute impact "Cancer" has on you and your loved ones.
      Well done and more power to you.
regards from Australia ...Cheers from Down Under  Pene

Gary Elgort on PSA-R It is beautiful, just beautiful. -- p

Hi Jacquie and Dave, I know you both from the Circle. What special people you both are. You Jacquie for maintaining this helpful interesting site and you David for sharing your great talents with us. I feel so fortunate for meeting people like you. I wish my husband and love of my life didn't have Pca BUT I am happy I met the likes of you! I can't explain this Circle of friends I belong to to my non-circle friends, they think I am sort of weird. But I know you both understand the strength we get and give to one another. Gratefully,   Mary

As a 47-year-old PCa survivor who recently underwent an RP, I disagree with Mario Menelly's proposed PCa Disclosure Legislation.
      Is this really necessary? What doctor wouldn't take the time to discuss treatment alternatives -- in plain English -- with his patients?
      Furthermore, Mr. Menelly said his proposal is based on his experiences and on conversations he's had with hundreds of people. With all due respect, that's not rigorous research; it's not scientific enough to warrant such legislation.
      We should focus our efforts on finding a cure for this terrible disease, not trying to impose more legislation and red tape. The medical community is already on our side here.
Jim Acton, Collegeville, Pennsylvania

David's page [Living in the Nanosecond] is a beautiful piece of writing. I too have been living with PCa, now for 7 years. I am glad that the science has progressed so far in this time. I did one thing that David might not have done - a cell study in the character of the cancer cells. Mine was diploid; with this knowledge I was armed to fight the disease. Three years ago I was told by a urologist that I had 6 months to a year. Went to MD Anderson and got on trials. Saw my PSA go from 500+ to 20. This year my PSA hit 1649; now only 385. Soon I start another trial on anti-angiogenesis. I am pain free and work every day. Life is good. This year I've been to Spain and Mexico. Just waiting to start the next trial. It feels good to contribute to the body of knowledge in the fight. Doug Morgan

My subject plays on the "milk of human kindness". Was Monsanto bereft of it in procuring the FDA's approval of its bovine growth hormone, now present in a large fraction of our (U.S.) milk supply. "Procuring" may indeed be the right word to describe why the FDA. placed BST (the short name for the hormone) on the fast-track for approval. Our Washington-protector of the food supply (presumptive) read only the summary of research by (guess whom?) Monsanto, rather than all the data.
      FDA. won't answer any questions about its approval procedure now that questions have been raised by Canadian health authorities and by American public interest groups. Even ABC News has failed to penetrate the F.D.A. bureacracy.
     Question: Since the BST with its risks for prostate and breast cancer ... and other unwholesome developments is already in our milk (and possibly in our tissues), is it reasonable to believe that by avoiding the fatty component of milk, one might reduce further absorption of Monsanto's boon?
     It is my understanding that hormones attact themselves to fatty tissues preferentially. Should one turn to non-fat, dry milk as a way of reducing intake of BST?
Alvin D. Hofer Gainesville FL

As far as the debate on color of the ribbon ... to me it is more a symbol for getting out of the closet and realizing that the fear of being recognized as a PCa sufferer has been overcome.... There are a lot of people out there ... who are afraid (they say they do not care) to join the groups, be counted, and be supportive for searching of a cure. (I believe strongly that one will be found, someday). I try some approach to touch them, but they withdraw like a snail in their shell.
AV, Baltimore

PSA Rising is an excellent addition to the patient-directed literature on prostate cancer ... and I wish you well in your endeavors. Sincerely
Mike Scott
The Prostate Cancer InfoLink http://comed.com/Prostate

What a powerful piece [by Fred Mills]. Thanks for sharing.
Virginia N, Orange Park, Fl

Thanks, Fred, for the article you wrote. I can relate.
Barry Johnson in San Diego

Thanks, George, for the sobering article about the tea pickers in Indonesia. Another reason to remember our interconnectedness and to be thankful and appreciative for the many unseen ways in which we all serve one another. It was also nice to see the photo's of both you and Gigi!
Fred Mills, Salem, Oregon

My husband is a PCa survivor. I subscribe to everything and from time to time I visit my favorite sites..... I wish I could do something of the sort on my own country, but even the statistics on PCa deaths here are unreliable, let alone sensibility to awareness programs or action.
MC, Brasilia, Brazil

Stopped by - waiting for my wife to return from aerobics... Very impressed - you've put a lot in to this - while coping with a lot other things!
Wayne Tesmer, Fargo ND

Your article on the cut-back from Sen. Ted Stevens' committee's recommendation of $175 Million for prostate research does not mention:
1. Who the negotiators were;
2. Where the money went;
3. How much was finally approved.
By contrast, your article on Lupron gives a great deal of detail. Why the difference in emphasis? ....Americans need to learn from the anti-war movement of the sixties how to pressure the establishment for benefits from the taxes they pay. Without strong advocacy by ordinary people, marches, petitions, rallies, picketing, the tax dollars will continue to go to the military industries, aerospace ventures, and bail-outs to rescue speculators. I don't know where the teach-ins should be held, on the campuses or street-corners, but they are needed. We now have 43 million Americans without health insurance. Prescription drugs are unregulated and uncompensated by Medicare and by most other insurers....
Alvin D. Hofer Gainesville FL

You have started a good program with this thread.... A few years ago, when I joined a local US TOO chapter, it had a "High Risers" subgroup that met on its own once a month. The originator of that group had tried CHT and later many forms of chemo that eventually did not work and he passed on but lives in our memory as the chapter was named after him.
I believe we could trade info among ourselves that could be helpful in future treatments. For example, at what point in a rising PSA do we decide to take preventive action, and what are the possible options? Can we find out what others are doing? I'd be glad to tell of my own "progress" in this scenario. My best to all.
"First Timer"

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