Prostate Cancer Activist/Mentor

Prostate Cancer Activist/Mentor

Reminding all subscribers that I am "Always as close as the other end of your computer to help address any prostate cancer concerns."

If interested in my prostate cancer, advocacy, and mentoring background, (my “credentials” if you may) please visit the following theprostateadvocate.com where you can also click on the menu word "Observations" and access over 225 papers I have either authored, compiled, or posted from medical friends regarding prostate cancer, recurring prostate cancer, treatment options, treatment of the side effects that often accompany most all treatment options, and more.

Charles (Chuck) Maack

maack1@cox.net

14 Replies

oldestnewest
  • We are so lucky to have you as our activist, mentor and advocate. And I hope that the rest of our group can navigate this new site. I had troubles at first, but am getting more used to it.

    And I thank Darryl for his efforts to find us a new home before Yahoo Groups finally collapses. While I've had some problems and have complained, I was so used to our Malecare format---I have such difficulty adjusting to changes on the computer, and get easily frustrated and stressed over some of the settings.

    CERICWIN

  • Yes, we are blessed to have him and I totally know that it's difficult to change and it causes some anxiety for you me and maybe some others ;-)

  • Glad that you stuck with it and we have you aboard in this new format.

  • Wouldn't have it any other way, Joel! Have to stick with those of you who have become good friends and have the same care for others.

  • Hi Chuck

    Good to see you here too

    Tom

  • There you are! I've missed you!

  • Well, new on this list, but available wherever!

  • As a guy who has been diagnosed with early Prostate Cancer I'm trying to choose the best approach to this issue. I've been lead to believe that radiation "seeds" are the best way to go. My concern is the long term effects of that approach and any side effects it may present. I'm 65 yrs old.... I have a 3+4 Gleason and only had signs of cancer in 2 of 8 cores. My PSA was a 3.1 and rose to a 5.2 in the last 4 months...

    There is a family history of PC and my uncles and older brother have dealt with it...My older brother seems to be managing his with diet and exercise...He's very active while I'm very sedentary....so I'm not sure I can hold my PSA down like he has.

    I'm looking for advice or personal experiences for others.

  • I would appreciate if you would email me maack1@cox.net with what the pathology report told you from the biopsy (Gleason Score, PSA levels leading up to biopsy, and I will elaborate further once received). Do not be rushed into a decision since you do have at least a couple months to study and understand your status the form of treatment with which you may be most comfortable. Very important is the experience of the treating physician and how often he performs the type of treatment being suggested.

  • Chuck Maack,

    Thanks for being here for us. I am an 85 year old male who was diagnosed 10 days ago with metatastic prostate cancer. It has metastisized down my right leg bone, from the groin to my knee, and also they found an image (PET scan) of a black mass in my back mid-section associated with lymph nodes (between the stomach wall and my spine). They biopsied this black mass for the diagnosis of prostate cancer.

    Today I had a brief consult with the oncologist. He said basically that chemo and/or radiation was not appropriate for my status, but that they would recommend hormonal therapy. This would slow down the progression of the cancer activity, reduce my PSA score to normal limits, but not "cure" the cancer. He said my cancer was "incurable."

    Twenty-five years ago my PSA score was 4.4. Over the years it slowly rose to 25.3 a year ago. Since I have started my regimen as outlined below, the PSA score has dropped to 21.1. I am hoping that decrease will continue going forward.

    I have applied to the Health Department in the District of Columbia for certification of my eligibility to purchase and use cannabinoid as medicine. I am awaiting my certificate which is expected in a few days. I have purchased some liposomal Vitamin C and have been taking 24,000 mg daily in the form of 2,000 mg per hour round the clock. I take 2000 mg of beta glucan daily to boost my immune system. I have been consuming Essiac tea regularly twice a day. I have been following the Budwig Protocol each day for the past 10 years (since July 2006), and eliminated sugar and other refined carbohydrates from my diet as well as all wheat. I eat a little meat in the form of bison burgers, fish (mainly wild salmon or sardines), and grass raised chicken, but mostly eating vegetables and some small amount of fruit. I have green smoothies daily (mostly kale or spinach with avocado and pomegranite juice, frozen strawberries and blueberries, along with spirolina, chlorela, fenugreek, kelp, D-Ribose, chia seeds and tumeric).

    I do lots of walking around town. A former long distance runner (marathon at age 72), my doctors advised me to stop due to advancing peripheral neuropathy a dozen years ago.

    So Chuck, what am I doing wrong? What am I not doing that I should be doing?

  • What comes to light with your explanation is that all that you have been doing that may have extended your life, apparently had little to no effect on your being diagnosed with prostate cancer, and with that cancer so highly developed that it had already extended to bone. If you noticed steady PSA elevation over the past years, you should have been seeing a Urologist when began elevation over that 4.4ng/ml 25 years ago. You definitely need early attention to attempting to rein in your prostate cancer. If you are in generally good health, I would expect chemotherapy would likely be the best "hit" now along with the medications to be prescribed for androgen deprivation therapy/ADT (shutting down testicular production of testosterone. If the physician sees your overall health, and he/she is likely taking your age into consideration, may be why chemo is being discouraged. It is toxic and the physician is likely not wanting to put your through that. Immediate ADT should be started and not as monotherapy wth only a single drug prescribed to just shut down testosterone production. Many Urologists are starting their patients out on the GnRH antagonist Firmagon/degarelix for one month since this drug does not cause a flare of testosterone production with the injection as do LHRH agonists like Lupron, Zoladex, Eligard, or Trelstar, but then after that one month the Urologists are then switching the patient over to one of the foregoing identified agonists. Firmagon has to be administered monthly whereas these agonists can be administered in doses that last anywhere from one to six months, so you don't have to keep coming in monthly. How, in addition to this testosterone inactivating medication you should also be prescribed the antiandrogen bicalutamide/generic of Casodex, since this medication blocks the multitude of androgen receptors on every cancer cell from testosterone access that can also come from that testosterone producted by the adrenal glands. So, at least these two medications should be administered in near time. Please email me at maack1@cox.net since there is more I need to rela to you to discuss with your treating physician. If you are still seeing a Urologist or Radiation Oncologist, I would highly recommend you move to a Medical Oncologist since with your advanced, metastatic disease, this is the physician who specializes in treating such advanced disease. Urologists for for surgery, Radiation Oncoogists are for radiation, and Medical Oncologists are for the appropriate medications necessary for treating advanced, metastasized prostate cancer.

  • Chuck,

    Thank you for being here for the "brotherhood of PCa". I have been getting your email Ice balls since diagnosed in 2008. Information you post is helpful and at times reassuring when it seems I have no other advocate.

    PeteG

  • Maack:  Thank you for your message about being there for patients and care givers.  I am the wife of Jon and his care giver.  I signed up on this support group to help me with answers.  Jon is right now in a tremendous funk, hopelessness and suffering with major fatigue.  He is now in a wheel chair due to L3Tumor on spine.  Surgery happened in September but grew back and radiated in December 2015, but cannot walk as left leg is useless.  Started Jevtana chemo which seemed to work as onc stated the treatments are working, however, Jon was in the hospital for 12 days due to neutropenic fever after second treatment.  Bombarded with antibiotics which totally kicked his butt, since then he has struggled with ileus (now under control) and mainly major fatigue, no appetite.  Lot's of drugs being thrown at him, Reglan, Megestrol,  Ritalin and Dexemethesone to try and spark him back up.  The more depressed he gets the worse he feels.  I am feeling very depressed myself seeing the love of my life suffer so.  Suicide has been talked about by him and I got scared and had all of his guns removed from the house.  His onc is on vacation until April 6 and did not want to proceed with chemo (Jevtana) until he returned from vacation.  I am aware all of these drugs cause side effects and fatigue is one of them.  I am at my wits end and hate seeing Jon this way.  Do you have any words of encouragement for me and Jon?  I would truly appreciate whatever you can give me.  Thank you  Dena, Jon's wife.

  • Hello Dena,

    I had typed a great deal of information as a reply, but then somehow it all disappeared, so trying again.

    You mention that Jon was prescribed megestrol (aka Megace). 

    Megace/megestrl is a “no-no” for prostate cancer patients.

    As noted by Medical Oncologist Stephen Strum, a specialist specifically in the treatment of recurring as well as advanced, high grade prostate cancer: “I am not a user of Megace since it is metabolized to DHEA and then to androstenedione and then to testosterone.

    Adding to NOT prescribing Megace is this commentary by Dr. A. Oliver Sartor, another physician who specializes in research and treatment of recurring and advanced prostate cancer: “"Megace® is used at times for patients who have hot flashes, and at times for patients to boost their appetite. But in prostate cancer, Megace may interact with the androgen receptor, particularly mutants, and cause excessive cancer growth. And you can actually get responses by withdrawing Megace. I do not prescribe the use of Megace in prostate cancer patients.

    I feel bad for Jon (and you!) that because of prostate cancer metastasizing to the spine Jon has lost use of one of his legs and his only mobility is with a wheel chair.  And as a result of all the treatment, reaction to Jevtana/cabazitaxel, and this issue with his spine, he has pretty much resigned himself to depression.  This bothers me and the following should be considered:

    This very important consideration from a caregiver who is an RN for a psychiatrist commenting on what other caregivers are reporting as to the obvious depression of their husband/partner prostate cancer patient:

    About depression......

    "I think it is important here to distinguish between being depressed, which we all feel from time to time based upon the changing circumstances in our lives, and clinical depression, which is a psychiatric condition caused by an imbalance of neurotransmitters in the brain and central nervous system. They are not the same thing. When you start reading about men who have withdrawn from their relationships, who have no energy or pleasure in anything anymore, who maybe eat too much or too little, sleep whenever they can, and have been acting like this for six months or more......a complete personality change...... now you're talking about a medical condition that won't very likely resolve on its own without medication. Counseling helps, too. Because clinical depression is often a manifestation of long term anger and pain." 

    This certainly sounds like Jon and you should talk to Jon's treating physician(s) to encourage him to visit with a psychiatrist for counseling that will help him not only understand why he so depressed, but methods in which to overcome what has become a serious case of depression.  At the same time, Dena, in accompanying Jon to a psychiatrist you could bring up that though not experiencing the same depression as that of Jon, you, too, are experiencing more a fatigue depression for caring for Jon and the many issues he has been facing.

    New subject:  In that it appears Jon may require the use of a wheelchair for mobility, and if his health care is Medicare, he would qualify at no cost for a battery operated/rechargeable vehicle like a Hoveround or similar such vehicle to be used both inside and outside.  I expect having to move about with the wheelchair just adds to his discomfort and fatigue.  The mobility of a battery operated vehicle would give him so much easier mobility and the freedom to get around both inside and outside; this could be a good boost out of his depression. 

    Important, Dena, is to look to your own health.  Do your best to remain upbeat and optimistic - it really helps one's system.

    For further exchanges, please email me directly at maack1@cox.net.  I will "Always be as close as the other end of your computer to help address any prostate cancer concerns."

You may also like...