Living with Metastatic Prostate Cancer

My story starts with a colonoscopy in 2008. A small lump was discovered on my prostate so I went to an Urologist who recommended a biopsy. My PSA at the time was 2.1. At that time I did what the doctor ordered. The biopsy was perform in his office and was extremely painful to me. I do believe that at the time, prostate cells entered my blood stream that would later be cancerous. The biopsy was inconclusive. Two years later I had another biopsy (in-patient surgery) and the biopsy indicated cancer with a Gleason score of 8 and a PSA of 7. The urology center had a surgeon employed so the doctor recommended a radical prostatectomy. There were two people at work that had the procedure and they highly recommended that I do the same. So I interviewed surgeons only, and had a radical prostatectomy in November 2010. The pathology report on my prostate indicated that the cancer did not spread outside the prostate/margins. After the surgery my PSA was 35 and a PET scan showed that the cancer had spread to my pelvic bones, spine and ribs. Since then I have been on and off Lupron. I just received my fourth Lupro shot in a row which is a record for me. This past winter (2015) my PSA started raising from 12 to 66 this month while on Lupron. I'm experiencing bone pain and taking magnesium multiple times a day as it seems to help along with Cell Forte IP-6. I went on John Hopkins this past Tuesday. Since quality of life is important to me we decided that Abiraterone (Zytiga) & Prenisone would be the next step for me. I would take this in addition to the Lupron Shots and it could be beneficially for a couple months or even a year. They took some blood to test to determine if the protocol would be effective for me. Things like Chemotheraphy, Radium 223, Provenge or Radiation did not appear to be a good alternative looking at risk/reward. They did mention trials of which one sounded hopeful which was a bone marrow transplant, of course its just a theory they have at this time. I'm also in discussion with a facility in California that says they offer non traditional therapies that may eliminate my cancer. In the near future I will have a conference call with them to try to determine the risk versus reward. Issels is the name of the facility in California where they conduct non FDA approved procedures in Mexico. If any one has any experience with this company I would be interested in hearing your experience. Traditional medicine doesn't offer much hope and I hate the side effects and the fact that many of these protocols only extend life for a couple of months on average and carry a lot of risks. On the other hand, I'm beating the odds as my doctor said five years ago he would have estimated that I would not be alive today. Other than the cancer I'm in good health and exercise when I fell good. I just turned 58 a couple of days ago. I do want to let everyone know what I have uncovered that your doctor may not want you to know. Medications like Lupron can be provide by the facility (infusion center) where the injection occurs and the facility will submit a claim to your insurance company that will be processed under your medical benefits. Or you can get a prescription and get the Lupron at a Pharmacy that will be processed under your prescription benefits. If they provide the Lupron at the infusion center my deductible is something like $1600 versus $95 under my prescription benefits. So the lesson here is to check with your insurance company to determine how to obtain your medication at the lowest cost to you. This is applicable to any drug like chemotherapy that is administered outside of a hospital.

12 Replies

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  • Skateguy,

    Glad that you found us.

    When you listed the drugs you were to consider I noticed the absence of enzaludamide (Xtandi). Is there a reason you didn't consider it because it is a possibility for you and I believe that it is a better drug?

    Also, why do you think that Zitiga will only work for a few months? It might not work at all or it could work for multiple years. There is no way to predict this type of thing.

    I am also curious how the docs at Hopkins came to the conclusion that Provenge, chemotherapy and Radium 223 would not benefit you?

    Your point about sorting through the drug cost thing is great. Thank you for sharing that.

    Joel

  • The Dr. stated that Xtandi caused most people to be lethargic where Zytiga + Prednisone had the opposite affect. Quality of life is important to me so I chose Zytiga. John Hopkins is currently testing my blood to determine if this protocol will be effective. He did state that if the test indicated that Zytiga would be effective that it may work for a month and up to a year. He did not elaborate. He said that Chemotherapy would knock my immune system down and I would also be lethargic. He did not elaborate much about Radium 223 or at least i can not remember. He said that he did not see any measurable benefits with Provenge in reducing tumor size or PSA. I hope that helps. Another experience I observed is that small operations where the doctor is also an owner tends to prescribe protocols based on profit margin. It's most likely untrue in most cases, but something to be aware of.

  • Yes, What the doctor said is true, but you should also ask him about the potential side effects of the prednisone you will have to take along with the Zytiga. There are also possible survival differences between Zytiga and Xtandi.

    Today's advanced prostate cancer blog post talks about why I believe that Xtandi is superior to Zytiga

    advancedprostatecancer.net/...

    There are a number of other posts about both drugs which you might want to read.

    As far as Provenge, again the doctor is correct, you should not expect to see an immediate positive changes in tumors or PSA as Provenge does not work in the same way the other drugs work. Provenge takes time to work which is why it is better taken as early as possible. The entire course of the drug is only one month, a time period a person with a lower PSA can afford to allow the PSA to increase. Think of it as an investment in a savings account that delivers compounding interest.

    There are also numberous posts on the blog about Provenge and how it works. Go to the blog at advancedprostatecancer.net and search for Provenge.

    Joel

  • Thank you for the information. My PSA in November was 26 and just a week ago it was 66. I'm experiencing bone pain. I have found that taking magnesium and lifting weights (squats) actually helps to eliminate the pain. I appreciate the info on the drugs. I'm therefore undecided about which one to start with first. Zytiga or Xtandi. I will discuss side effects and irreversible/reversible damage for both with the doctor. The provenge article suggests to me that I would not be a good candidate as my PSA is high and rising. Thanks again for the information. I will continue to read your articles.

  • Joel...why does xtandi and zytiga have to be either or....Dr. Myers has patients on both which he says increases the chances the cancer will not develop resistance

  • Good question without an answer. Dr. Meyers has a lot of experiences and is an individual who thinks out of the box, but I am not aware of any data that would show that combining the two as opposed to sequencing them provides any life extension.

    From a practical point combining them is pretty much impossible for most men, do to insurance restrictions. Both of these drugs are beyond expensive, most men could not afford them and their insurance companies most likely will not pay for them together without evidence of survival advantages.

    As a matter of fact CVS just announced that they will be removing Xtandi from their formulary, or not making it available to their subscribers!!!!!

    advancedprostatecancer.net/...

    Joel

  • I am so saddened to hear your story, which has parallels to my own. I had a radical prostatectomy in 2010, following failed brachytherapy in 2004. I have spent much of my life on hormone-ablating drugs since 2004 (Lupron, Androcur, Stilboestrol), with no end in sight. Last year, when I took a break from all drugs between June and December, by cancer having apparently become resistant to them, my PSA rocketed from 17–343 ng/ml. I did not even know such a doubling time, which had to be in weeks, was possible. However, I am lucky, I guess, that I am not showing any signs of bone metastases.

    For me the biggest mental issue is my wife, who feels so utterly powerless in the face of this thing. Here on Trinidad there is scant psychiatric support for either the patient or the carer. Thankfully, the university here has just started a support group for its staff with cancer. I am eager to find out what it has to offer -- though I suspect it might have problems with somebody who has been fighting cancer for the past 12 years.

    I hope all goes well for you. By the way, I am not taking Abiraterone as the cost here is prohibitive.

  • You are lucky not to have any bone metastases as it is painful. I have gone on and off Lupron the last five and a half years and lately on for the past 10 months. I'm lucky to have employer offered health insurance as the Abiraterone would be very cost effective, I believe less then $50 /month. If you read my stuff above and you have health insurance you should call your insurance company to find out the difference in cost to you if the medication is processed under your health benefits versus your prescription benefits.

  • Hello Skateguy,

    After reading your posting I'd like to first congratulate you on going to Johns Hopkins. Hopkins is one of the top cancer hospitals in the world and is known especially for their prostate cancer expertise.

    Secondly, I'd like to warn you NOT to go to Mexico to Issels. Here's an article about them from the prestigious Cancer Research UK organization.

    cancerresearchuk.org/about-...

    Their criticism is mild but I suspect that's because, as a UK government agency, they aren't allowed to express personal opinions or any opinions for which they can't provide clear proof. So instead of saying something like "This doesn't work, period", they say something like "There is no evidence for this". And of course they can't say "We think these guys are a bunch of quacks and thieves."

    However, reading between the lines, and looking at the rather ridiculous "treatments" that Issels offers, I would say that their true expertise is in extracting money from patients' bank accounts. The very old papers that they provide to prove that their therapy works contain strange concoctions of treatments, many of which are now known not to work. Furthermore, they claim results for every type of cancer when, in fact, cancer is many different diseases. They also claim results with immunotherapy that is nothing like the new immunotherapies that have shown some limited efficacy (Provenge and Prostvac) which work by sensitizing the patient's immune system to specific molecules found only in prostate cancer cells, not ordinary prostate or other cells.

    In my personal view, the arguments they make in their papers are based on vague speculations from researchers in the 1930s to 1960s, when we knew very little about cancer. Today, I don't think any reputable scientists would put much or any credence in any of those speculations.

    I also have doubts about their statistical claims. If these claims are true, and not just falsified data, why weren't they submitted to the FDA? Why weren't clinical trials registered and more results submitted? Why did they go to Mexico instead of getting approval for their treatments in the U.S. or Germany (where Dr. Issels appears to have come from?)

    I predict that, if you go to see them, you'll get a smiling glad hand, a big bill that you will have to pay in advance (because you may not pay them once you find out how useless the treatment was), with no insurance allowed (because no insurance company would pay for unproven treatments), a set of injections of a dubious hodge-podge of chemicals, and then be sent home. When you start to get really sick and call them again, you'll get a brush off. They won't want to hear from you unless, of course, you are prepared to give them another big pile of money.

    That's the general pattern in these quack "cancer centers".

    When my time comes, I'll see what help I can get from the best experts I can reach, and after that I'll give what money I have to my wife and children, not to unscrupulous quacks.

    I'm sorry to be so blunt, but I would hate to see you waste time and money on something that I believe is dishonest and isn't going to work.

    Best of luck.

    Alan

  • Not sure I totally agree with Alan's analysis. Some clinic in Germany and one or two in Mexico are providing alternative treatments that are saving a significant number of patients who are approaching the terminal stage of the disease.

    Big Pharma rules the roost and the FDA calls the same tune. Treatments based on natural therapies are NOT patentable and the millions required to under clinical trials are just not available . Thus, these treatments continue to be regarded as quackery, some of which don't deserve this title.

    My brother is likely to attend one of these clinics later this year.

  • The US medical system is so structured with protocols, probably dictated by the pharmaceutical company's, that I am skeptical of the US health system (FDA) and medical institutions outside the USA. Money is a great motivator. You have to decide based on available information, experiences of people in your situation and your own experiences. Our system is so structured that if patient has A and B, the doctor can only prescribe Y, but if the patient has A, B & E the doctor can prescribe Y & Z. If he/she prescribes anything in addition, that is a violation of what it means to be "practicing medicine" and the doctor can lose their license. I have found that taking magnesium helps manage bone pain for me but when I tell a doctor it goes in one ear and out the other. No doctor will share information from one patient to another, even with full disclosure that they do not endorse it. Who would spend money getting the FDA to approve magnesium for bone pain? No one. And I'm not saying it will work for everyone. I like to take all information I can gain from medical experts, people in my position and my own experiences in deciding what to do. I am my own best advocate and cannot rely on one doctors/persons perspective. I would be interested in hearing about your bothers experience.

  • AlanLawrenson and Skateguy,

    I hear and agree with your criticisms of big pharma.  And there are too many doctors in business for the money who aren't too picky about what they do to get it, or too concerned about the health of their patients.  I also agree that the financial incentives to doctors and drug companies don't align well with the health requirements of patients.  As you say, cheap, non-patentable solutions to health problems don't attract much in the way of pharma funded research or clinical trials - though it's not true that there are NO trials of such treatments because there is funding by U.S., Canadian, UK, and other governments of some trials for which no pharmaceutical money is available.

    I guess much of the criticism I have of the "alternative" cancer clinics is not that I love the established and legally regulated cancer clinics in the U.S. and other countries, but that it seems to me that the "alternative" clinics are even MORE money motivated and unscrupulous than the legally regulated clinics.  The legally regulated clinics must employ licensed doctors who have passed all the coursework, exams, internships, residencies, and continuing education courses required by law.  They must use drugs and treatments that have passed safety and effectiveness tests established by law.  They are at least minimally accountable to professional licensing boards.  They must carry liability insurance, and are subject to lawsuits if they violate the law or their legal responsibilities.  "Alternative" clinics go to third world or other countries precisely so that they can escape all of those restrictions.

    If you decide you still want to visit one of these clinics, then be at least as skeptical as you would be with any doctor.  Ask for explanations of the treatments.  Get written material when possible.  Lookup their proposed treatments on the Internet, looking especially at reports by non-profit, non-commercial centers of expertise such as the National Cancer Institute and the equivalent institutes in the UK, Canada, and other advanced countries.  Be very concerned if a treatment is proposed that the NCI or someone else evaluated and found to be of no benefit.

    Most of all, be aware that some of the things you are told may be outright lies!  There are people who will look you in the eye and say with great sincerity that they think can cure your cancer when, in fact, they haven't a clue about what to do and only really care about the fat fee they can extract from you before you die.

    Best of luck.

        Alan

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