Letter about Communication between PCNG- ers
Sue Stanton sent to Tom Young and some other members a powerful letter which is here reproduced

…. at the meeting on Wednesday, January 30), several people told me that they had no idea that Fran had died on December 18until the newsletter came, and they wished that they had known at the time so that they could have attended the visitation or service. I have two ideas for solving this communication problem.  

    The first is to create an online group through Yahoo Groups.  Whoever decides to be the "owner" of the group would go to Yahoo Groups and follow the steps to create a new group.  The category would be "health and wellness", then "Men's," then "prostate cancer".  It is quite easy.  I set up a group for the St. James Episcopal Church Prayer Chain.  I am the one who adds or subtracts members.  Someone who desires a prayer request to be sent to the about 40 members just sends it to StJamesEpicopalChurchPrayerChain@yahoo groups.com (which is nicknamed "Prayer" in my address book) and it goes to the whole group.  This has worked extremely well for us over the past many years. 
   In the case of PCNG, members could send out updates on their treatments or other aspects of their lives, such as moving to a new address, etc.  For instance, if Morita Marmo so desired, she could send out a message to the whole group about Mike's going under Hospice care at home. I would envision this as a way to share personal information rather than share articles or info about prostate cancer in general.  
   The second idea is to use One Call Now, a phone notification system, in which one or two people in the group would be authorized to send a phone message which would automatically go to all of the members in the group.  This is a useful since many of the PCNG members do not use E-mail.  Our church uses this to notify members of the congregation in a timely manner about a death and funeral arrangements, or a change in a service time, or a reminder about an important upcoming event.  It is overwhelmingly successful and easy.  Go to onecallnow.com for details.
   In both of these methods, members can opt out of the group at any time.  
   I think that one or preferably both of these methods of helping everyone keep up with their fellow members and friends would serve a crucial need. If we really believe in supporting each other, let's do it in a more complete and timely manner.  Yahoo Groups is free and One Call Now has a nominal cost, which I would like to pay at least for the first year in memory of Fran.   Fran was a huge believer in the importance of communication. 

Please share these ideas with other members and let me know what you think and any questions you may have.

Sincerely, Sue Stanton

Thanks Sue, for bringing this Communication issue to our attention.    ―In Sue’s opinion a member of our group should organize either both or one of these communication tools. I will be glad to help our new PCNG e-mail list webmaster or list owner, having had extensive experience with two e-mail lists, both free of charge and easy to use: PPML (Prostate Problems Mailing List on ACOR –without ads) and HRPCa (Hormone Refractory Prostate Cancer on Yahoo Groups –with ads).  Both on-line support lists are good, and the e-mail webmaster or list owner should make the decision which route to follow. One can expect, extrapolating from the subscription base of both support groups, that there are about 10-15 PPML subscribers and a few HRPCa-ers in the Greater Cincinnati area. An e-mail list of at least 40 or 50 subscribers appears a realistic goal.

Which persons are willing to pick up the email ball and the One Call Now ball, and run with them?

Supplements For Cancer Patients

    This month we will watch Dr. Myers talk about supplements he advises his patients to take. Dr. Myers likes supplements if they were successful in clinical trials. Unfortunately, clinical trials for prostate cancer patients using OTC (over-the-counter) medications are few and far between. But that does not stop patients considering “complimentary medicine” In a recent article in the NYT (published January 27, 2008) Dr. Jerome Groopman wrote that “in his work as a specialist in cancer, blood diseases and AIDS, hardly a week goes by when patients do not bring up the above interventions, as well as Buddhist meditation, qigong, acupuncture, megavitamins and macrobiotic
diets.”
    “In “The Cure Within,” her splendid history of mind-body medicine, Anne Harrington tries to explain why we draw connections between emotions and illness, and helps trace how today’s myriad alternative and complementary treatments came to be….. Some 60 million Americans use these therapies in the effort to combat serious diseases like cancer and AIDS, as well as the normal physiology of aging. In the United States, office visits to providers of complementary and alternative medicine now outnumber visits to primary care physicians. The costs of such care approach $40 billion dollars a year. Books, talk shows and Web sites present riveting testimonials of clinical benefits from Eastern breathing techniques, dietary supplements, positive thinking and prayer. … “
    “Sometimes, of course, standard treatments don’t work or simply don’t exist. And sometimes tests fail to uncover any physical cause for a patient’s suffering at all. But such failures, Harrington argues, explain only part of the widespread dissatisfaction with mainstream medicine. Of equal or greater import, she writes, is medicine’s failure to address the “existential” aspect of illness, to answer the questions “Why me? Why now? What next?” Doctors usually frame their answers to such questions in language that forgoes any meaning for the individual. Whether cancer will return is a matter of statistical likelihoods derived from the study of large groups of patients — or, in lay terms, “bad luck.” There is no meaning in randomness, and for the patient no sense of control.”
    “Hans Selye, a Czech physician and biochemist at the University of Montreal, took these ideas further, introducing the term “stress” (borrowed from metallurgy) to describe the way trauma caused overactivity of the adrenal gland, and with it a disruption of bodily equilibrium. …. Selye’s work prompted further research on the impact of family dynamics, interpersonal relationships and community ties on health. Most of this work initially focused on the heart and hypertension, prominent in the public mind following President Eisenhower’s cardiac crisis. Later, scrutiny was extended to the emotional dimensions of the other great specter of the time, cancer. If stress lay at the root of so many modern maladies, Harrington writes, then “healing ties” might be the prophylactic, if not the cure, for cancer as well.”
    “In 1989, David Spiegel, a psychiatrist at Stanford, published a widely reported study of 86 women with advanced breast cancer, all receiving conventional medical therapies. Some were randomly assigned to weekly support groups, where they spoke openly about their fears and hopes and were taught self-hypnosis to manage pain and stress, while others were simply given routine care. Spiegel reported that the women in group therapy lived twice as long, 36.6 months, as those in the control group, who lived 18.9 months. …”
    “In one of the most poignant moments in her book, Harrington visits a group of women in a follow-up study designed to replicate Spiegel’s stunning data. <Dr. Spiegel has recently released the results of this subsequent study, showing that the initial results were a fluke>…During her visit, Harrington asks the women whether they thought Spiegel’s group therapy was helping them live longer. “A silent snort went around the table,” she writes. “No, they said, they did not believe the premise of the study — not really. Why not? I asked. Their answer was clear: the evidence was not there for them; they had seen too many people in their group die.” But then one woman surprises Harrington, and the reader, by saying she doesn’t care about Spiegel’s hypothesis. “I don’t think it matters to me at all,” she says. “That’s not why I joined the group.” Why, then, did she stick with it? To learn “how to live better with cancer and how to die better from cancer, something that they could learn nowhere else in their culture.”
    Tara Parker-Pope wrote in the NYT of February 6, 2008, about vitamins popular with cancer patients, despite risks. “Researchers … found that 64 percent to 81 percent of cancer survivors overall reported taking extra vitamins or minerals (excluding multivitamins). In the general population, only 50 percent of American adults reported taking dietary supplements.”
    “The American Cancer Society says use of vitamins and supplements during cancer treatments should be avoided. A 2005 report cites several studies that show the use of vitamins by cancer patients doesn’t help and may even cause harm. For instance, two randomized trials of patients with advanced cancer found no benefit from vitamin C supplements and suggested that survival may have been worse in the vitamin group. Two large trials of smokers and former smokers found that beta carotene supplements appeared to increase lung cancer risk. A 2004 study in The Lancet found that antioxidants didn’t prevent gastrointestinal cancers and may have increased mortality risk. A 2002 study of early-stage breast-cancer patients undergoing treatment was inconclusive, but it suggested survival may be worse in the antioxidant users. …”
    “ ‘While supplement use may be beneficial for some patients, such as those who cannot eat a balanced diet, research suggests that certain supplements may actually interfere with treatment or even accelerate cancer growth,’ said senior author Cornelia Ulrich… Survivors of breast cancer reported the highest use of supplements, ranging from 75 percent to 87 percent, whereas prostate cancer survivors reported the least, with 26 percent to 35 percent taking supplements. …”
    This is not the impression we have from our members: the majority takes supplements, perhaps because they are more involved with prostate cancer than non-members. Taking supplements should also be considered because there is one excellent clinical trial showing that one type of supplement lowers the PSA doubling time. This clinical trial was randomized, double-blind, placebo controlled and a cross-over study. With other words, a Cadillac among clinical trials! But a small one.
    49 patients, all with cancer recurring after RP (radical prostatectomy) or radiotherapy, had their PSA doubling time increased from 445 days in the placebo group to 1150 days in the supplement group (p=0.041), a 2.6 fold increase.   
    The supplement consisted of soy, isoflavones, lycopene, silymarin, and antioxidants as main ingredients. Detailed information about the composition of supplement and placebo can be seen here. Few men were involved in this study because the reduction of the PSA or a slower growth of the PSA does not necessarily imply that the tumor is getting smaller. Suramin, for example, lowers the PSA but not the tumor. Correlating changes in the PSA with changes in tumor mass may lead to the conclusion that supplements are indeed effective in treating recurring prostate cancer. In that case clinical trials with many more patients would be warranted.
    The results of clinical trials are not always easy to interpret. Many of us take vitamin E, perhaps because we read that a Finnish study showed a significant reduction of prostate cancer incidence. But this reduction was not confirmed with a long-term follow-up!
    Probably the best thing we can do is to listen carefully to Dr. Myers, who has a great knowledge of clinical trials and extensive experience with prostate cancer patients.