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    Old 05-17-2018, 09:08 AM   #1
    ciorsdan's Avatar
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    My husband - I'm very scared


    I'm here because my husband has been diagnosed with prostate cancer which according to the scans the urologist/oncologist had him do three months ago shows that there are spots on certain bones.

    My husband tried to address this holistically because he really doesn't want chemo, etc. Even the biopsy. He has not had one and fears that if he does, the cancer could spread even more.

    He had blood tests done this week and the PSA which was already at 125 two months ago has now doubled.

    I am so afraid for him. He's my soul mate. We've been together for 35 years. I'm paralyzed with fear. He is 73 years old. He's going back to see the urologist/oncologist in ten days. At the end of November 2016, he had major heart surgery and came through it with flying colours. I thought our ordeal was done, but obviously not, because a few months later the PSA began to rise very slowly and, now, we're in this position.

    I don't know what to say, what to do. I'm so scared. I can't bear the idea of anyone suffering, let alone those I love more than anything.

    Would really appreciate some help. Thank you.

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    Old 05-18-2018, 02:57 PM   #2
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    Re: My husband - I'm very scared

    Welcome to the Board ciorsdan!

    I empathize with you and your husband. He is facing a challenging case, but there is a realistic basis for hope. Prospects for patients like your husband have improved in the past few years, and improvement is continuing. There are some world-class prostate cancer centers in Canada. I’m providing some information below that I hope will help. Becoming empowered is a great way to crowd out the fear!

    I’m going to assume that your husband does have metastatic prostate cancer. That seems likely due to the rapidly rising and high PSA with imaging that shows spots on bones, one of the likeliest sites for metastatic prostate cancer. However, without a biopsy, this is not a certainty. Do you know what kind of bone scan was done? Chances are it was what is known as a bone scan based on the element technetium. Your doctor would know. Do you mind describing the number and locations of the spots? (It can make a difference, such as in what is known as “oligometastatic prostate cancer”.)

    A half dozen years or so ago (especially before 2010) doctors did not have much to offer patients like your husband – diagnosed with what looks like distant metastatic prostate cancer and a rapidly doubling PSA, except androgen deprivation therapy (also known as hormonal blockade or hormonal therapy) which worked for perhaps a year or two in such patients, and then chemo, which also worked for a year or two. That has changed a lot since then, as has the understanding of such cases, including better knowledge of working with better forms of hormonal therapy as well as other new drugs, imaging and radiation technology. Canada has contributed substantially to that knowledge.

    Holistic approaches, unfortunately, just don’t work! We know that from research. Sometimes patients increase their jeopardy – health and financial - by relying on holistic tactics instead of moving rapidly to treatments that are effective in lengthening life, often with maintained or even improved quality of life at the price of temporary or intermittent side effects. It is a sad fact though that there are smooth-talking, lying hucksters out there eager to make a buck on the suffering of desperate patients and their loved ones. (My family went through this with my father, and I was unable to turn them away from squandering a fair amount of money.)

    While it may seem strange, your husband’s high and rapidly climbing PSA may indicate that ADT and other therapies are more likely to result in great improvement compared to other patients who don't have such high PSAs. One expert I know is convinced of that, thinking that while the PSA pattern suggests especially aggressive disease, it also suggests a disease type with an achilles heel, that can be treated with extra effectiveness. At age 73, your husband would normally be able to tolerate ADT without debilitating side effects, but his history of heart trouble increases the risk of serious side effects from ADT. That said, there are some powerful new ADT drugs that provide more options. Ideally, based on recently published clinical trials (CHAARTED, STAMPEDE, GETUG), a patient with your husband’s diagnosis would first be treated with ADT plus a course of chemotherapy right at the start instead of waiting until the ADT no longer worked before starting the chemo. That combination for patients like your husband is making quite a difference.

    Formerly, the major ADT drug was from a group of equivalent drugs such as Lupron, Zoladex, Viadur, or Trelstar. Now, a more powerful drug similar to these drugs is available; it is known as Firmagon® (generic name degarelix). Also, a broader spectrum and very potent similar drug known as Zytiga® (generic name abiraterone acetate) is available. Sometimes these drugs are combined with a class of drugs known as antiandrogens. The old mainstay is Casodex® (bicalutamide). The newer similar but far more potent drug that has been around for a few years now is known as Xtandi® (enzalutamide), and within the past few weeks it has a similar and potent sister drug known as Erleada® (apalutamide). Sometimes, where patients have trouble with the first class of drugs (like Lupron), just the antiandrogen class is used; the effectiveness against prostate cancer is not as great, but the side-effect burden that is difficult for some patients is much reduced. My own therapy included a third class of drugs – the 5-alpha reductase inhibitors, either Proscar® (finasteride) or Avodart® (dutasteride), but they may not be as needed with some of the newer drugs. In addition, a recently approved drug known as Xofigo® (alpha radin 223) is sometimes used to send very short range but potent radiation direct to bone metastasis sites where it is quite good at destroying the cancer with minimal side effects because it barely reaches healthy tissue. The main point here is that there are now many options, including combinations, and research is delivering new drugs, imaging tools, and other treatments to the clinic faster than most doctors can keep up with. So if you thought this list of options was confusing, you're not alone!

    Whatever ADT drugs might be used for your husband, it is important that you and he learn how to minimize side-effects. There are some well-established ways to do that, but, most unfortunately, many doctors have not paid attention to this part of care for ADT patients. If you do not have a medical team that provides good advice on this, you need to dig it out for yourself.

    Regarding biopsies for prostate cancer, research has proven that they do NOT spread cancer except in extremely rare cases.

    Regarding your husband’s fear of chemo, I’m sure many of us understand that well. However, the facts for prostate cancer patients are more encouraging than for some of the other cancers treated with chemo, and more is known about how to prevent or eliminate side effects. For instance, while I was never on chemo myself, I’ve heard experts say that the first round of chemo for prostate cancer patients is fairly tolerable. These days nausea and vomiting are controllable with drugs. Hair and nail loss can be reduced or even prevented by use of cold packs and special gloves that keep the scalp and nails cold while the chemo is being administered, thereby keeping most of the chemo away from the hair and nails and helping to preserve them. Also, the older chemo – docetaxel, while still used a lot, now has a newer competitor - Jevtana® (cabazataxel), and the newer drug is considered by some to be more effective and more tolerable.

    There are also some non-chemo alternatives emerging, especially in the immune system drug type. One, Provenge (sipuleucel-T) has been approved since around 2010 as I recall. Another, Yervoy® (ipilimumab) just missed being approved for prostate cancer, but was approved for other cancers and is sometimes prescribed “off-label” for prostate cancer patients. Some doctors are also using the other new immune system drugs (Opdivo®, Keytruda®) for prostate cancer patients (also “off-label).

    I'm sure the foregoing is too much to absorb, but I hope it will give you and your husband hope.

    Good luck!

    Last edited by Administrator; 05-18-2018 at 03:08 PM.

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    Old 05-19-2018, 04:31 PM   #3
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    Re: My husband - I'm very scared

    If your husband is refusing a biopsy, he may be in denial. He doesn't want to know that he has prostate cancer. But the longer he waits to begin treatment, the more it will spread.

    My husband is 74 and has Stage 4 Prostate Cancer with mets to the bones. His biopsy results were Gleason 9. He is being treated with Lupron and Zytiga (started on Casodex to reduce testosterone flare). After 3 months, his testosterone is now close to zero and his PSA is < .05. The side effects are bearable.

    He chose to forego chemo because our oncologist said that it would only increase survival by another 6 months--and in his view, that is not worth 5 months of chemo. We are optimistic that my husband will live another two-three years without deleterious side effects. Instead of thinking 2-3 years, I think 730 to 1,095 days. It helps us stay grounded in the present.

    Last edited by Moderator1; 05-19-2018 at 06:32 PM.

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    Old 05-26-2018, 02:17 PM   #4
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    Re: My husband - I'm very scared

    Hi ciorsdan and BSN100 (and welcome to the Board! ),

    We are all somewhat in the same territory cancer wise, though mine was 18 ½ years ago now. My initial PSA was 113.6, which rose to 125 two weeks later, probably because of a mixed effect of flare from the Lupron and growth of the cancer due to what seems to have been a fairly short PSA doubling time. My oncologist’s office still lists me as starting out with Stage 4 because of a doubtful single spot in an unlikely location per a ProstaScint scan in early 2000, but I have always thought that was probably an artificial result, and my course since then makes it a stronger likelihood that I was never Stage 4 (but definitely Stage 3). I believe that if I had waited to get that first ever PSA for another 3 to 4 months my PSA would then have been 250, and probably I then would really have had Stage 4 disease.

    It appears I am now an older man than either of your husbands as I will be 75 next month, but obviously we are all just about the same age, and I know that territory well too.

    I am really surprised, BSN100, that your oncologist told you what he did, for a couple of reasons. First, in just the past couple of years we have had those good results, especially from the CHAARTED clinical trial, which demonstrated that chemo started early, concurrent with hormonal therapy (the Lupron and Zytiga® in your husband’s case) instead of waiting until hormonal therapy was no longer controlling the cancer, led to substantially longer survival than waiting to start chemo later. This is a fairly recent result, and it takes a while for very busy doctors to catch up with the latest key developments, but this was touted widely as a “practice changing” result.

    It is possible that I am misunderstanding what your doctor said and his/her understanding, as all of the patients in the CHAARTED trial had metastatic cancer, and the trial showed that the substantial benefit occurred for those with more extensive metastases but not for those with less extensive metastases, which might be the reverse of what you would expect to happen. Basically, those with “minor” metastases did so relatively well without the early chemo that there wasn’t’ much if any advantage to be seen. However, the fact that your oncologist is giving you a rather short-term prognosis leads me to suspect that your husband might be one of those who would benefit from early chemo. Even though he wouldn’t be starting chemo at the beginning of hormonal therapy, he would be starting it well within the time that the hormonal therapy is still working extremely well (PSA <0.05 – that’s great, and what you want!). Many oncologists treating us prostate cancer patients also treat many other types of cancer, which means they have a lot to keep up with and are not specialists who see a large proportion of prostate cancer patients, which motivates them to focus on prostate cancer developments. In fact one of the leading medical oncologist/researchers specializing in prostate cancer in the US, and a leader of many clinical trials, stated in the fall of 2016 that he is disturbed that too many oncologists are not using the insights from CHAARTED in their practices. I’m suspecting your husband’s oncologist may be a very good doctor but does not have a lot of metastatic prostate cancer patients, a fairly small group, these days even in an oncologist’s practice.

    You can check results from various papers about the CHAARTED trial for yourself by going to, courtesy of our US tax dollars hard at work, and use a search string like - prostate cancer AND CHAARTED . I just did that and got 43 hits after clicking on the filter on the left to drop any papers that did not have abstracts. By clicking on the blue hypertext you can view the abstract, and sometimes there is a link to a free copy of the complete paper (with a filter on the left for that too). Too me the results are rather eye-popping: for paper number 6 on the list (lead author Gravis, ), the two key studies showed that early chemo improved the average overall survival for patients with “high volume” disease from about 35 months for hormonal therapy (also known as ADT, for Androgen Deprivation Therapy) to an average of 51 months for the CHAARTED trial (which was a superior trial for a number of reasons) to 40 months for the GETUG trial. I can help interpret these abstracts/papers if you need help; when you start out in this game, it’s really confusing, but I’ve been at it now for 18 ½ years. I’m also suspecting that your doctor said that chemo would only improve results by about 6 months because he was looking at early data from the GETUG trial and was unaware of the tremendously significant results from CHAARTED. (It's just possible your husband's oncologist has information showing your husband to be a "lower-volume" metastatic patient, in which case he would not likely benefit from early chemo, and in which case you can extend my apology to him on my behalf.)

    Finally, and this is really important, clinical trial results are designed to get a result of only a few months improvement, because that means the approach is likely to win FDA approval but can be accomplished without a much longer trial, which would add a lot of expense. What this means to us patients is that these approaches, in the hands and minds of skilled oncologists, are very likely to work much better than they do in the trials! For instance, in the trial the hormonal therapy consisted of just a Lupron® type drug, or Firmagon®, or surgical castration. In your husband’s case, he is already on Lupron® plus Zytiga®, which is a far more potent drug than Lupron®, with the combination likely being even more potent. Moreover, the chemo drug Jevtana®/cabazataxel appears to be superior to the docetaxel chemo that was used in the CHAARTED trial. I strongly suspect that leading doctors are already using early chemo with Zytiga®, and probably also with a Lupron®/Zytiag® combo.

    I’m also disturbed that in 2018 your husband’s doctor gave you what looks like a fairly short prognosis. (Actually it sounds a lot like mine in 2000: 3 good years and 2 declining years). Perhaps a half dozen years ago I would not have been disturbed, but progress in prostate cancer has taken a rather amazing turn for the better for Stage 4 patients. Prior to 2010 almost no new drugs had been approved for years, but starting then the floodgates opened; a handful of new drugs have been approved since then, with more in the pipeline, as well as repurposing of older drugs (like early use of chemo, like metformin for prostate cancer patients), much better radiation technology (including Xofigo®/radium 223 for bone only disease), really superb and ever improving imaging and testing (such as genetic) – which leads to superior individualization of treatment rather than a more one-size-fits-all approach, better understanding (effective treatment of oligometastatic – meaning few metastases – cancer), and a much improved research/drug approval pipeline system. Leading oncologists are busy finding out the best ways to sequence and combine all these marvelous new tools. I like your way of stretching out the time, but you may be able to really stretch the actual time, potentially to the point of your husband’s being able to put prostate cancer on the back burner and “succeeding” in dying of something else many years from now!

    As a side topic, did the oncologist go over how to minimize the side-effects of hormonal therapy, especially including maintaining bone density while on hormonal therapy? This is also really important!

    I know there are outstanding medical resources in your area, and I believe you and your husband should seek a second opinion.

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    Old 06-08-2018, 12:30 PM   #5
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    Re: My husband - I'm very scared

    Hello ciosdarn,
    I am sorry for the bad news, but I think that you are at the rick place with the deep knowledge and the experience of Jim and all the people in the board.
    Just to help you to feel hope my father was also diagnosed with metastatic prostate cancer in 2011 at age 72, he was on bicalutamide until the psa rised again and then off and so on until 2016, now he is on enzalutamide and his PSA keeps controled, it is not very low but it is in the normal frame. So keep hope and good luck.
    Warm regards a bit hug

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