My Experience Since 1996 With Androgen Deprivation Side Effects
by Charles Maack
Wichita , Kansas Chapter, Us TOO Intl., Inc.
HOT FLASHES/FLUSHES....I experienced them for awhile but at the time it seemed to just be a warming coming on like when one works up a light sweat, and never that discomforting...just something I could notice. They eventually just stopped occurring.
I read a remark provided by a PC patient: “I don’t have hot flashes, I have short, private vacations in the Tropics!” (Humor is important in the healing process!) Below is information I saved wherein various of our PC friends suggested what worked for them with hot flashes/flushes: You might want to print this out and discuss with your family physician, your urologist, or your oncologist, particularly for those requiring a prescription. On the other hand, you might just want to print it out, hang it on the wall, throw a dart at it, and give the result of the dart point a try. If that doesn't work, throw another dart. Hopefully, eventually the dart will connect with the one that will work
for you. In the meantime you will be enjoying yourself so much throwing darts that you'll forget about the hot flashes/flushes!
I think this may be a “hot one” to consider: A medication prescribed for women experiencing hot flashes, Gabapentin, has been effective and I would think could be prescribed to men as well. Best to talk to your physician about this drug. Gabapentin was approved by the FDA in 1994 for the treatment of epileptic seizures. It has also been used to treat headaches and pain from shingles, as well as other medical conditions. Scientists speculate the Gabapentin may reduce hot flashes by controlling the flow of calcium in and out of cells. This is one of the methods used by the body to control temperature. Read more: http://tinyurl.com/32kgy8. And http://www.theannals.com/cgi/content/abstract/36/3/433
concludes: Hot flashes resulting from antiandrogen or GnRH analog therapy are often difficult to treat and leave many patients disabled. Gabapentin has been shown to markedly reduce the severity, frequency, and duration of these hot flashes. Controlled trials are necessary to evaluate gabapentin against other therapeutic modalities.
From a PubMed report: Effexor (Venlafaxine hydrochloride) appears to
represent an efficacious new method for alleviating hot flashes in men
undergoing androgen ablation therapy. Further evaluation of this compound
for alleviating hot flashes is indicated.
Another I found while visiting the PCRI Insights January 1999 issue
were the following recommendations for hot flashes/flushes:
Soy,
Genistein,
Megace®,
Depo-provera®,
DES,
Effexor ®
- found at
http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html
by scrolling down to near the end of Table 2a.
Entire URL regards Androgen Deprivation Syndrome, by
Stephen B. Strum, M.D., FACP, Medical Oncologist Specializing in Prostate
Cancer for the past 23 years and co-author of "A Primer on Prostate Cancer -
The Empowered Patient's Guide."
Another post: For hot flashes ask your physician about 200mg Depo Provera
injection or the use of Effexor 12.5mg twice a day or a combination (see
above regarding Effexor). If 200mg dosage for Depo Provera is insufficient, could be
increased to 400mg.
Yet another made note:Started back on 20 mg megace this week and so
far that is controlling the hot flashes .
Yet another: 0.025 estradiol patches, one per week
Another Email suggested the following that can be purchased at Costco
(probably available elsewhere as well) and did the trick:
TruNature Soy Isoflavones 50mg
200 Softgels
Take one Softgel two times daily, preferably with a meal.
Cost $15.99
Item # 485069 plus S&H
ISoy Extract (Glycine max)(bean) 125mg (Standardized to 40% (50mg)
Isoflavones)
*Daily value not established. Ingredients: Soybean Oil, Soy Bean Extract,
Gelatin, Sorbitol,
Glycerin, Water, Yellow Beeswax, Lecithin Oil, Artificial Colors (Caramel,
Titanium Dioxide)
Another Email commented that the wife found the following in a women's
magazine that worked well for him: 3 cups of sage tea daily.
Dale S. in a post to a PC website list commented: I've been on intermittent Lupron since 04/96. Started having hot flashes soon after I started. Someone recommended a tofu/soy milk/ chocolate mix (blender), drinking a glass a day. Since starting that, I haven't had any more hot flashes. He said: I use one quart Silk Soy Milk, 12.3 oz. Mori Silken Tofu and a couple tablespoons of Nestles Chocolate milk mix. I blend the above together in a blender. This mix provides enough for one glass a morning for four days. I don't think brand name is important. I usually find the ingredients at WalMart.
Another patient posted: I have become involved in a clinical study using
acupuncture. After seven sessions I can report that the number of flashes
have been reduced, but more importantly the depth (severity) has declined.
Here is interesting information provided by Geoff Golner that could be considered:
“My alternative practitioner gave me an herbal formula for hot flashes
that has worked well for me while on ADT (Lupron & Proscar, at
present). I asked him if it would be useful for other men on ADT. He said yes and gave me a "generic" formula for the "average patient." (The proportions would probably vary a little if tailored for a specific individual.) The formula is 11 parts Dioscorea (wild yam root) powder to 18.4 parts Pueraria root (kudzu root) powder.
The dose is 2 teaspoons at once, every other day. My sources are:
Dioscorea: http://www.voigtglobal.com/herbs_botanicals_w-x.htm Item
No. 209619-51.
Pueraria root (Chinese name Ge Gen):
http://www.ancientway.com/catalog/product_info.php?products_id=1710&osCsid=d97d200481a9c159375e4b33c5dd06a8
It's taste is pretty mild when mixed with water. I've used it for more than a year with no apparent problems. When I ran out temporarily, my hot flashes returned (temporarily).”
Jim Waldenfels, a friend of mine traveling pretty much the identical path I have been on and an extremely knowledgeable fellow regarding our disease, sent the below email to a patient regarding HIS dealing with hot flashes:
“Regarding hot flashes, two non-medical approaches have worked well for the
relatively mild-to-moderate flashes and sweats I have experienced: fans,
particularly when aimed at the head and neck and to move air around my head during
the night, and zippered sweatshirts that allow for convenient adjustments to
cope with changes in temperature. I also have taken soy supplements, like
those that women take for flashes, for a long time. I am positive the fans
and sweatshirts help, and I believe the soy helps, at least in my case. By the
way, based on the research by Dr. Maha Hussain, MD, cited by Dr. Charles
Myers previously in the Prostate Forum and mentioned in his recent book, I'm now
stepping up soy supplements to 200 units per day.”
And for licorice lovers: To cool off hot flashes, nibble on the herb, licorice. It's delicious and often works better than hormonal drugs! (NOTE: Received other word saying in rare cases licorice can cause an increase in blood pressure, so, something to beware).
From the foregoing, there are obviously many methods of treating hot flashes/flushes that work well for some but not at all for others. Hopefully one day just one will be known as the “one for all, all for one.”
FATIGUE (AND MUSCLE LOSS)... yep, that definitely developed during the time I was on androgen deprivation. I must admit, however, that I should have worked against the fatigue by making a daily practice of some type of active exercise be it a daily, long walk, routine stretching and loosening exercises, etc., but at least something planned. In my younger years I was an extremely active Black Belt (Nidan) in the martial art of Kodokan Judo, so I should know better. But I only continued the routine of most retired men with my only exercise being work around the house, shopping, and the like. I believe that a regular exercise plan and the right mental outlook can counter the effects of fatigue and of muscle loss. Here is more info regarding cancer fatigue from the Cleveland Clinic:
http://www.clevelandclinic.org/health/health-info/docs/0300/0305.asp?index=5230. Also, the American Cancer Society reported the use of Ritalin to counter extreme fatigue from radiation or treatment of advanced cancer; see:
ACS :: Ritalin Helps Doctor Beat His Cancer-Related Fatigue
This article goes on to mention Alladall. In any event, it is extremely important to be very careful when prescribed these medications for fatigue. They can be habit forming and must be handled very carefully. Side effects and pre-existing conditions must be determined prior to their use.
LOSS OF HAIR...my underarm and chest hair disappeared, and there seemed to be less arm and leg hair. No effect on head, face, or pubic hair.
BREAST ENLARGEMENT (Gynecomastia)...this occurred in my case and occurred because of the failure of the urologist to recommend that I receive a low dosage of 300-400 cGy (3-4 Gy) radiation per day for four days to the chest area prior to the initiation of androgen deprivation therapy. Certain estrogen receptor modulator medications such as tamoxifen and clomiphene can also often be used. Aromatase inhibitors such as Arimidex (anastrozole) or Aromasin (exemestane) are another treatment option, although they are not universally approved for the treatment of gynecomastia. A patient commented that Dostinex (Cabergoline) at 0.5mg twice-a-week was prescribed that stopped most pain occasionally experienced early on with ADT, but had no effect on growth. Although stopping GnRH analogs and anti-androgens can lead to regression of the gynecomastia, surgery is sometimes necessary to eliminate the condition. Vigorous exercises that toughen and muscle up the chest area could possibly at least lessen the appearance of the enlargement. I only learned of the radiation procedure when I began studying treatment and side effects. Too many urologists as well as oncologists fail to advise patients of breast enlargement preventive measures before beginning the administration of GnRH analogs and anti-androgens. You might consider chest area exercises. It would be wise to first clear any exercise plans with your family physician. To "muscle up" the "pecs" with weight exercises designed for chest muscle strengthening (to possibly reduce the otherwise loose hanging breast tissue), here are some ideas. One exercise to try at home would be to stand in your kitchen, somewhat back from a counter so that when you reach out and place both hands on the edge of the counter your body will be straightened out and leaning with your weight on the arms. You can now do "push ups" from that position. You will be able to feel the exercise placed on the breast area muscles (the "pectorals") (CAUTION: be careful not to let your hands or feet slip and you end up banging your face/nose/whatever down on the counter!). Now, if you want to get REALLY serious, here is a URL that provides a whole slew of exercises (shown for the gals, but works the same for the guys): http://www.womenfitness.net/pectoral.htm. And, of course, you can access the internet and find many exercise routines. I believe it important to recognize your strength and age limitations and to begin these exercises lightly, slowly, and with caution so as not to over-extend or cause yourself harm.
LOSS OF LIBIDO…A definite effect of the loss of androgen/testosterone as the result of androgen deprivation therapy. Frustrating? Obviously, yet it is NOT the end of intimacy. Surprisingly, many men and their spouses/partners discover that there is much more to intimacy than only sexual intercourse. It is important that we men continue to recognize the needs of our spouses/partners, and understanding what intimacy is all about can keep that alive. A visit to the following website can be the beginning of learning more about intimacy than you ever imagined:
www.renewintimacy.org.
Anatole Broyard, a literary critic for the NY
Times (died about 1990), wrote a book about his experience with PC:
"Intoxicated By My Illness". Some people have criticized the author's
near-rhapsodizing about his fascinating "journey" with cancer, but Mr. B. is entitled to
his opinions. Many people have found his book to be original and uplifting.
About PC and sex Broyard writes,
*When I heard that the cancer might affect my sexuality, my "mind became
immediately erect".*
MEMORY...I never experienced any less memory capability than I would expect being part of aging. I think it important that even without any medication issues as regards memory, that everyone should work at retaining and improving memory through regular reading, working puzzles that challenge the memory, broadening one's knowledge and memory development through researching and studying areas they might not normally pursue (thoroughly educating oneself about everything dealing with prostate cancer research, treatment, and advocacy, for example). Another example is that joining a Prostate Cancer support group and actively participating is not only known to enhance one’s longevity, but also helps generate the thought processes. That being said, I do know men who regularly remark that they have more memory loss issues 'because of' their treatment.' I'm just not certain that the treatment is the major issue. Aging is known to effect the memory of many. And failure to exercise the 'memory banks' likely can have an effect on one's memory capability.
STRESS…Stress because of concern regarding one’s condition can lead to depression, and may also have an effect on cancer cell growth. I have included below the results of a lab study at Ohio University on cancer cells from a head and neck cancer. It validates findings in ovarian cancer and may apply generally. Interestingly, a beta-blocker slowed progression of the stress hormone stimulated cells. This study supports the importance of avoiding stress and depression
”Stress Hormones May Play New Role In Speeding Up Cancer Growth
November 1, 2006. Hormones produced during periods of stress may
increase the growth rate of cancer. A new study shows that an
increase in norepinephrin, a stress hormone, can stimulate tumor
cells to produce two compounds. These compounds can break down the
tissue around tumor cells and allow the cells to more easily move
into the bloodstream. From there, they can travel to another location
in the body to form additional tumors, a process called metastasis.
The research also suggests that the same hormone, norepinephrin, can
also stimulate the tumor cells to release another compound that can
aid in the growth of new blood vessels that feed cancer cells,
hastening the growth and spread of the disease. The work was reported
in the latest issue of the journal Cancer Research ....
The target adrenergic receptors for these hormones are well-known to
clinicians dealing with high-blood-pressure patients. Typically, such
patients are given a class of drugs known as beta-blockers which lead
to a lowering of blood pressure levels.
Glaser and Yang wanted to see how these same drugs affected these
tumor cells. They added propanol, a beta-blocker, to the tumor cells
and then exposed them to both norepinepherine and epinephrine. With
the drug present, the levels of MMP-2, MMP-9 and VEGF didn't
increase.
"This suggests a new approach to possibly fight some cancers - the
prescribing of beta-blocker-type drugs that would block these
receptors and perhaps slow the progression of the disease," Glaser
said.”
And here is yet more supporting evidence that stress stimulating an uptake of epinephrine can consequently stimulate cancer cell growth:
http://www.onlinenews.com.pk:80/details.php?id=110849
DEPRESSION...I recognize that many people get depressed by the effects of many things...family, environment, work, inactivity, illness, and the list can likely go on and on. And here, again, it is my opinion that with determination to fight the onset of depression and immediately attacking the reason for the developing depression, either in discussion with close friends or your family physician, you can combat this effect. I'm probably downplaying depression because I have been fortunate to be able to suppress it, so I'll just say that those who get depressed while on a treatment medication are likely those who get depressed about the many other things that can also cause depression. So, does it happen with androgen deprivation? I'm sure for those I've just described it does.
As scientist Steven Wright, a man of many words of dubious wisdom, notes: “Depression is merely anger without enthusiasm.” However, are a few things for consideration:
Karen L. Swartz, M.D., Director of the Johns Hopkins Mood Disorders Center, provides six practical exercise tips to help your ease depression or anxiety with exercise.
Exercise tip 1: Exercise now…and again. Research shows that a 10- minute walk can improve your mood for two hours. Another study demonstrates that 10 minutes of pedaling on a stationery bike is enough to make you feel better, at least temporarily. The key to sustaining mood benefits is to exercise regularly -- stop exercising, and the psychological lift will disappear. The converse is also true: If you’re used to regular physical activity, your mood will suffer if you take an exercise vacation.
Exercise tip 2: Choose activities that are moderately intense. Aerobic exercise, such as walking and swimming, undoubtedly has mental health benefits, but you don’t need to sweat strenuously to see results.
Exercise tip 3: Find exercises that are continuous and rhythmic (rather than intermittent). Walking, swimming, dancing, stationery biking, and yoga are good choices.
Exercise tip 4: Be wary of competitive sports. Exercise that pits people head-to-head with opponents may be too stressful, leading to a bad mood in the face of defeat. If you’re the type whose competitive spirit may get the better of you, choose a physical activity that you enjoy and that allows you to de-stress.
Exercise tip 5: Add a mind-body element. Activities such as yoga and tai chi rest your mind and pump up your energy. But if you don’t want to do yoga or the like, you can add a meditative element to walking or swimming by repeating a mantra (a word or phrase) as you move.
Exercise tip 6: Start slowly, and don’t overdo it. More isn’t better. Athletes who overtrain find their moods drop rather than lift. You also risk injury and boredom if you push too hard, too fast, or too far.
Posted in Depression and Anxiety on August 15, 2007
AND
Karen L. Swartz, M.D., assistant Professor of Psychiatry at Johns Hopkins, explains why the transdermal Emsam patch offers new hope for patients with depression.
In 2006 the Food and Drug Administration (FDA) approved Emsam (selegiline), the first skin (transdermal) patch for use in treating major depression. The once-a-day depression patch works by delivering selegiline, a monoamine oxidase (MAO) inhibitor, through the skin and directly into the bloodstream, without having to pass through the digestive tract first.
At its lowest strength, Emsam can be used without the dietary restrictions required for all oral MAO inhibitors, making it a far more attractive drug option for people whose depression responds best to MAO inhibitors.
MAO inhibitors, such as Nardil (phenelzine) and Parnate (tranylcypromine), increase brain levels of norepinephrine, serotonin, and dopamine by blocking the action of the enzyme MAO, which normally inactivates these three neurotransmitters. They are effective in many people with depression , especially those whose depression is accompanied by marked anxiety, panic attacks, heightened appetite, or excessive sleeping.
But, as a drug class, MAO inhibitors are typically a last choice for people with depression because of their safety risks. In the intestines, the enzyme MAO breaks down tyramine, a substance found in certain foods and beverages. Oral MAO inhibitors block the breakdown of tyramine in the intestine. This is dangerous because, if a large amount of tyramine is absorbed from the intestine, it can lead to a sudden and extreme elevation in blood pressure called “hypertensive crisis,” which is potentially life threatening and requires immediate medical treatment. Foods high in tyramine include aged cheese, aged or smoked meats, tap beer, and very ripe bananas. Nasal decongestants and cold and allergy medicines also contain tyramine.
Emsam represents a significant advance because the innovative transdermal delivery system allows the MAO inhibitor to bypass the digestive tract. At the lowest dose of the patch, which delivers 6 mg of selegiline over a 24-hour period, no dietary restrictions are necessary.
And here is even something more from Johns Hopkins to consider:
Pets really do improve our mental (and physical) health. Here’s why.
Pets are more than just furry friends and loyal companions. Yes, pets tug at our heartstrings, but they also improve our health, both mental and physical, helping us to live longer and happier lives. Studies over the past 25 years have shown that stroking a dog or cat can lower blood pressure and heart rate and boost levels of the mood-related brain chemicals serotonin and dopamine. Heart attack sufferers recover more quickly and survive longer when they have a pet at home, and children who are exposed to pets early in life may have a reduced risk of allergies and asthma.
For people with disabilities, pets can offer a lifeline to a more normal existence: guiding the blind, hearing for the deaf, and performing tasks for those who can’t do for themselves. Dogs and cats, even a tankful of fish, calm frazzled nerves and ease anxiety and depression, according to research. In one study, pets seemed to temper some of the psychological stress of being a caregiver to someone who is ill or suffering from dementia.
Dogs also act as conversation starters among strangers, a common interest, and a shared purpose. By getting their owners out of the house, dogs can also be a great stimulus for exercise and a tool for weight loss. In a 2005 study, researchers at the University of Missouri-Columbia found that people who walked a dog for 10 minutes three times a week, eventually working up to 20 minutes five times a week over the course of a year, lost an average of 14 lbs, without changing their diets.
Why do pets make us feel better? One reason is that pets alter our behavior. When they are near, we tend to calm down and speak more slowly and softly. All types of pets offer distractions from the worries of the day, because we naturally shift our attention to them when they are around. Pets also provide an opportunity to touch and stroke another living thing, which has been shown to be of value to our mental and physical health.
OSTEOPOROSIS...We know that osteoporosis is also an effect of aging. To determine whether or not osteopenia or osteoporosis is occurring is best determined by receiving a Quantitative Computerized Tomography (QCT) Bone Mineral Density (BMD) scan as well as a Pyrilinks-D Dpd deoxypridinolene urine test to determine bone resorption. The QCT BMD is preferred over the normally used DEXA scan for the following reasoning provided by internationally renown Medical Oncologist specializing specifically in prostate cancer research and treatment, Stephen B. Strum:
<Stephen B. Strum, MD>
In my opinion, the use of DXA scanning in the context of men with prostate
cancer who most commonly have osteoarthritis as well as vascular
calcifications is a reflection of a lack of understanding of the confounding
influence of these issues on the accuracy of the DXA scan. Osteoarthritis
and/or vascular calcifications will increase the bone mineral density of the
DXA scan and result in a false sense of bone density and a lack of need for
any treatment to either correct abnormally low bone density or to prevent
further bone loss due to medical treatment such as ADT. Moreover, the QCT
bone mineral density test evaluates the trabecular bone, which is 5 times
more metabolically active than the cortical bone which is evaluated by the
DXA scan.”
We also know that, for medical reasons I obviously still don't understand, that by the time a man is diagnosed with prostate cancer, he likely also already has bone density issues. Since the majority of men are diagnosed with PC after 60 years of age, osteoporosis presence at that time can very well be the result of aging rather than the presence of PC. But now we add to the bone issue the medications used in treatment with androgen deprivation. And we do know that the reduction and near absence of testosterone caused by those medications has a direct effect on bone density. And since we know the cause of osteoporosis can come from both aging and medication, we are either medically prescribed bisphosphonates to counter the effects of the medication, or the physician or ourselves suggest/self-prescribe the addition of supplements to similarly prevent and repair the loss of bone density. (Important to note: If you are to be prescribed bisphosphonate injections – Zometa or Aredia, for example – FIRST make an appointment with your dentist and get all necessary dental issues corrected before that first injection. Extractions, root canals, implants MUST NOT be performed while on bisphosphonates since these medications can weaken bone structure in the jaw. Jaw bone structure disturbed by dental procedures may not heal because of osteonecrosis of the jaw, though very rare, resulting from bisphosphonate medications. Also Important to note: If you are prescribed bisphosphonate injections - INSIST that the initially administered dose be at the lowest dosage possible and administered over a half-hour or so rather than the usual fifteen minutes. This can permit the system to tolerate the drug as well as prevent an effect known as Acute Phase Response (APR) which, if not prevented, can result in unnecessary discomfort and possible bone pain. Subsequent injection dosage level can be raised until reaching the normally administered level).
Since osteopenia and osteoporosis are know threats to men with prostate cancer, particularly those receiving androgen deprivation therapy, the below information gives some recommendations to act against this ailment.
Exercise, osteopenia and men
According to the National Osteoporosis Foundation, osteoporosis affects more than 2 million men in the United States and nearly 12 million more have osteopenia - clinically significant low bone density that is less severe than osteoporosis.
http://www.news-medical.net/?id=31348
I just realized in describing the effects that can be the result of androgen deprivation that I have just written a possible "ADT EFFECTS 101." Yet, in my description I hope you are recognizing that I have also explained that in and of itself, the side effects on an individual receiving androgen deprivation therapy can either be countered with appropriate thinking and acting, or with appropriate medications. There is no question that the health issues we encounter merely because of our aging - or in the case of prostate cancer, our gender - can really challenge our bodies and our mentality. I have found that one of the best treatments we have at our disposal to fight these many issues is OPTIMISM. When we let negativism into our lives we have chosen the path that only goes downhill and will begin an early lead to our demise that could have been prevented by our own will. (And now it appears I have become a philosopher)
I hope I haven't burst the bubble of anyone regarding androgen deprivation therapy. If your medical needs come to ADT as the option to keep you alive, it isn't such a bad option as those who don't understand it make it out to be.
