The partner of a Kiwi man battling prostate cancer tells her story
MARY is the partner of John, a NZ man with metastatic prostate cancer, originally diagnosed in 2007.
Chapter 4: What Mary (Kim Cook) told the Parliamentary inquiry into prostate cancer
September 23, 2009
Thank you very much for your time and allowing me to tell our story.
My name is Kim and I am the partner of Brian, a man who was diagnosed with metastatic prostate cancer in April, 2007. A cancer which had spread to both the lymph nodes and bones at the time of diagnosis.
Prostate cancer spreads in an orderly fashion, from the gland to surrounding tissues and from there to the lymph nodes and then to the bone.
If Brian had had an early diagnosis prompted by a routine PSA test and DRE the situation may have been prevented. As it was, the initial diagnosis indicated advanced disease.
It is estimated that 50 per cent of men over the age of 50 and 70 per cent of men over the age of 70 have some form of prostate cancer. Some of these are life threatening, but the majority will grow so slowly and never be a threat to life, so more men will die with it than of it.
However, despite its reputation as an “old man’s” disease, prostate cancer can strike men in their 40s and 50s and even as young as their 30s.
I strongly believe that if there is a family history of breast or prostate cancer then screening needs to be started as early as the age of 35. For other men who are not in this risk category, screening should start at age 40.
There is absolutely no reason why in this day and age men should be getting diagnosed with advanced prostate cancer and high PSAs – such as Brian’s initial reading of 960.
Men do not need to die from this disease. If prostate cancer is caught early enough and has not penetrated the perimeter of the gland, it is very treatable, with the intent to cure.
Sadly when prostate cancer has penetrated the gland and spread to either other organs or the bones and lymph nodes – such in Brian’s case – it is incurable.
I cannot stress enough that Brian’s cancer did not just grow overnight. It took many years to manifest to this stage and could have been in his body for more than 10 years
In Brian’s case, we were also unfortunate that there were other issues that delayed the initial prognosis of metastatic prostate cancer. He suffered from kidney stones and had an atrophic right kidney.
When initially he started getting unbearable back pains, he believed it to be stemming from his kidneys.
He visited his doctor stating he had back pain, and tests were done on his kidneys, and unfortunately prostate cancer was not even thought of at the time.
Then Brian’s right leg became swollen. Again he went to see his local doctor, but he was away at the time. The locum who was filling in suggested maybe Brian had received some kind of insect bite.
It was not until that fateful day on April 14th when Brian was rushed to hospital that the swelling was finally diagnosed as lymphedema, which is a condition of localised fluid retention caused by a compromised lymphatic system – the result of his prostate cancer.
You know what I find most disturbing is, as I found out later: if you Google the words swollen right leg, lymphedema comes up as a possible cause in the first five searches.
Something the doctor obviously never thought to do. Oh well, hind-sight is a wonderful thing.
And so our journey began. And it was not a journey without obstacles thrown in the way.
I think the thing that surprised me the most was the lack of information available about prostate cancer in New Zealand.
I bought a computer and scoured the websites in New Zealand for as much information as I could glean. It was an unbelievably futile mission.
There was little to no information on any of the current websites. Places like the Prostate Cancer Foundation and the Cancer Society offered a little basic advice, but not the in-depth information I needed. I felt totally lost.
At that point it would have been very easy to have not been educated in this disease and to have just taken the advice of doctors verbatim.
The doctors back at the hospital had already told me to get our affairs in order, as Brian would have six months to live and would not see Christmas, 2007.
However, you need to know that even back then there were two things I strongly believed in.
One is that to have knowledge is to have power and the second thing is the greatest fear we have is fear of the unknown.
So I set myself the task of learning as much as I could about this awful disease. Every aspect I could and I shared all I could with Brian. I wanted him to know what this disease was. I didn’t want us to be victims of this awful disease. I wanted us both to be empowered.
I researched overseas articles. I joined a ladies prostate forum (there was no equivalent forum here in New Zealand so I joined an overseas one).
To my surprise there were already several other Kiwi women there. I spoke to and wrote to people in similar situations.
I even wrote to two well known prostate cancer specialists, one in the States, and one in Singapore, asking the questions that no-one here in New Zealand seemed to be able to answer for us. The information at times was over-whelming.
I learnt that no man’s cancer is the same. Every case is different. I read Stephen Jay Gould’s “The median isn’t the message”…and I realised that statistical data is not always accurate.
I learnt so much my head hurt. I became stronger, but that does not mean there are not nights still when I cry myself to sleep knowing that this disease may eventually take my loved one’s life.
Unfortunately, with this new found knowledge came frustration:
• Frustration that New Zealand seems to be lagging so far behind the rest of the world in approving drugs for prostate cancer patients.
• Frustration that many medical staff here in New Zealand are reluctant to be pro-active in exploring different avenues of treatment. Avenues of treatment which have been used successfully in many cases. One example I would like to state is my endeavour to get Brian placed on a drug called Ketoconazole.
I could go into this and other issues in great details, but I realise that time is limited, and I do want to give you a chance to ask me any questions.
On closing, I would just like to say that I have never claimed to be more knowledgeable than anyone else in the field of prostate cancer.
I am simply the partner of a man who is dying from this dreadful disease and I never want it to be said that I never tried. So to re-iterate a few of the points I have made
• I strongly believe there should be a screening program available to all men here in New Zealand. Early detection saves lives. Prostate cancer is curable if caught early enough
• I believe medical professionals need to be more educated on prostate cancer. They need to be aware of all possible symptoms and they need to be open-minded enough to at least discuss all options of treatment. I would have given anything for someone to have sat down and discussed with me the pros and cons of using Ketoconazole so an informed decision could be made – not just told that doctors did not like the drug and that was that.
• New Zealand needs to get its act together. It needs to stop lagging behind other countries in approving drugs that have proven benefits and increased survival statistics.
• Finally the public needs to be educated more about prostate cancer. There needs to be more information available on the internet and there needs to be more public awareness campaigns. Things have improved in the last year or so, but so much more needs to be done.
Thank you for your time and listening to our story.
Chapter 3: We’ve run out of alternatives to chemotherapy – but all we can afford is an outdated version
August 16, 2009
Well, what an eventful week last week was.
John and I were up bright and early on Monday morning and made our way, a little apprehensively, to hospital for a meeting with one of our medical oncologist’s team to discuss the next step now that John’s PSA has risen to 26.
We were greeted by a very nice young Indian doctor, who looked over John’s information.
He advised us that although John’s testosterone was not being kept castrate by the medication he is on at the moment, it seems we have run out of any other alternative.
Both Zoladex and Lucrin have been tried and neither of these has remained effective in keeping the testosterone castrate.
This frustrates me a little, as it cannot be stated categorically that John’s prostate cancer is “castrate resistant”, but since the PSA is rising on the two medications tried we must accept the fact that is the more likely scenario and therefore move on to chemotherapy.
The subsidised chemotherapy agent is Mitoxantrone, which is given intravenously.
It is a well-established drug, but has been surpassed in effectiveness by another drug called Docetaxel, which is not subsidised for prostate cancer, and I believe costs $5000 an infusion, a price that well exceeds my bank balance.
However, the doctor says there are trials happening at the moment using either Docetaxel solely or Docetaxel and another drug I had not heard of before, called PR104.
A little researching on the net shows PR104 is used to stop the growth of the tumour cells. It does this by either stopping them dividing or killing them.
The best possible scenario would be if John is eligible for one of the trials and ends up getting the combination of Docetaxel and PR104.
We wait with bated breath to see if this comes to fruition.
In the meantime, the doctor wants John to stay on the medication he is currently on, which is Lucrin (LNRH antagonist), Bicalox (bicalutamide) and Fintral (finasteride).
On Wednesday morning, we went to another hospital to see a radiologist.
John has been experiencing burning pain down his leg and in his hips. This pain is severe enough to wake him out of a deep sleep and he ends up having to walk around at night to ease the discomfort. This has been an ongoing issue for many months.
Unfortunately, bone x-rays and scans have not shown the originating cause of the pain, although it has been established John’s pelvic area has many cancerous lesions and they could be contributing to the pain.
The doctor decided that John will have one treatment of radiation to the pelvic area. If the cancerous lesions are in the bone, then radiation to the bone may be very therapeutic and ease the pain John is experiencing.
If, however, the lesions are associated with the lymph nodes, then there will be no benefit from radiation to the area and it will provide no relief for the pain.
My gut feeling is that the cancer is in the lymph nodes, because John’s right leg has swollen. This leg swelling was an issue when he was first diagnosed with advanced prostate cancer, although the swelling went down substantially after a period of time.
So this is where we stand at the moment.
John will have chemotherapy, regardless of whether or not he is a candidate for the Docetaxel trials. Everything is crossed he will be accepted.
If, however, he does not meet the criteria (I am unaware of what they are). then he will be placed on Miitoxantrone, which is in six cycles over a period of three weeks.
We have not been advised, as yet, when chemotherapy will begin, but we have been made aware of all the side effects, such as nausea, bone suppression, infection, possible hair loss and possible effects to heart function.
Not a very happy picture to paint, but something we will need to deal with if and when it happens.
The next hospital appointment is scheduled for tomorrow morning. This is when John will go and discuss the radiation procedure they are going to commence on his pelvic area.
Then on Wednesday John will have the radiation treatment and then on August 25 he will have the isotope injection and x-ray that will show the progression of the cancer.
So here we are, well and truly on our way, journeying down the prostate cancer highway with still more bumps in the road to come.
CHAPTER 2: ‘So, ups and downs – some battles won, some lost’ July 10, 2009
JUNE: Well, the visit to the specialist is over and I am exhausted.
I had to come home and have a sleep before dinner as I was so brain-tired
Although this specialist is much better than the oncologist we have been dealing with, I had to fight with everything I had.
Not a nasty fight…he did listen…but we won some things and we lost some things.
Throwing ideas at a specialist in New Zealand is like throwing a ball at a target. Some balls hit the target and some miss completely.
The bad news is that it looks like Ketoconazole is off the prostate cancer menu in New Zealand.
Keto is a synthetic anti-fungal drug used to prevent fungal and skin infections. It can decrease testicular testosterone and in many cases has lowered rising PSA. It’s used as a second line of hormone therapy when first-line fails, especially in US.
NZ medical professionals don’t like to use it.
They think the side effects out-weigh the benefits. The specialist said side effects of Keto could mean John would end up in intensive care and then he wouldn’t be able to have chemotherapy anyway.
I think that showed ignorance, as far as there was no discussion of possible benefits.
I sure held my ground though. I said we should at least try low-dose Keto and if there were side effects we would stop it. The specialist said I would need to discuss that with the medical oncologist.
The problem with this is the medical oncologist is totally for chemotherapy.
The specialist said I would have a fight on my hands to get Keto, as no-one in New Zealand did it. But he said “go to the meeting, hear the medical oncologist’s reason for chemo and then mention Keto afterwards.”
By the way, to show how closed-minded medical specialists are here, I was corrected when I said Keto was second-line hormone therapy.
Here, they call it “third-line” because an LHRH/GNRH (luteinizing hormone-releasing hormone, also known as GNRH or gonadotrophin releasing hormone) agonist is classed as first-line and then a bi-calutamide (an oral, non-steroidal anti-androgen) is second-line.
No such thing as combined hormone therapy (CHT) here.
The thing with chemo is I know they want to do it now while John is well, but after chemo…well, what is there? If and when that fails, we have exhausted all options except for trials, which I am not comfortable with.
We did so well on Zoladex (a hormone therapy) for so long, but now things have sped-up 10-fold and we are heading towards the end-treatment stages.
I just felt Keto would at least give us a chance to extend John’s time before chemotherapy, but now it looks like we may not even have that.
On a good note though, I managed to convince him that the Zoladex is not working and holding the testosterone castrate.
He has agreed to change John to Lucrin (leuprolide acetate) and after a real battle – where at one stage he told me it had no beneficial effect – I finally managed to persuade him to put John on Finasteride.
Finasteride is used as treatment in benign prostate cancer, but is found to inhibit type 11 5-alpha reductase, the enzyme that converts testosterone to dihydro-testosterone.
God, it was a mission, but I finally produced a medical paper and he read it and agreed to try it…finally.
So starting from tomorrow, he wants John back on the bi-calutamide, as even though the PSA was rising, it was getting the testosterone lower. He has written a prescription for the Finasteride, which may take a day or two to get.
That way we can see if there is a drop in PSA caused by either of these two medications before switching to a Lucrin depot (a synthetic form of the naturally occurring gonadotropin releasing hormone, used as a form of first-line hormonal therapy).
We expect to do that in about two weeks’ time.
We also have the CAT scan on Saturday, which will determine if John needs radiation for his hip pain or go on a bi-phosphanate (a class of drug that prevents the loss of bone mass, and is used to treat osteoporosis and similar diseases).
So, ups and downs…some battles won…some lost.
At the moment, I just need all the pings I can get. “Pings”, incidentally, are hugs. It’s a term used and invented by the ladies prostate group I belong to. It isn’t really a word, but I am so used to using it. LOL.
I need them in the hope that John’s PSA may drop with the Finasteride and we can change to a LHRH agonist.
These are synthetic compounds that are chemically similar to Leutinising Hormone Releasing Hormone (LHRH), but are sufficiently different in that they suppress testicular production of testosterone by binding to the LHRH receptor in the pituitary gland.
If we get a drop in PSA, it may not be long-lasting, but at least we will get a reprieve from starting chemotherapy.
I do feel it is sad, though, that medical professionals in NZ are so scared of possible side effects from a treatment like Ketoconazole and that they refuse to even acknowledge it, even if it has been proven to be effective overseas.
I produced prostate cancer digests from people I know who have had large drops in PSA on Keto, but I was told I know only a few people and trials showing side effects have been done on thousands.
When I said I would like to see the papers on this, I was told I was not a doctor…and to this I respond “no, but I am the partner of a man with advanced cancer”.
I just wish somewhere in New Zealand there was someone willing to think outside the square. If you know of one, please let me know. Otherwise, it looks like only overseas is willing to move forward in the prostate fight and God’s own brings up the rear.
UPDATE (a few days later):
At 10:30 this morning, John and I made our way to hospital where we had an appointment to meet with one of the members of the specialist’s team.
The specialist is a medical oncologist and seems to be well-versed in hormone therapy and chemotherapy.
We were greeted by a very nice lady, who turned out to be a registrar in the medical oncologist’s team. She went through our past treatment protocol and agreed entirely that as testosterone was not being held down to castrate levels by the Zoladex, the treatment we have decided to follow was the best decision to make.
This means John will be on Lucrin (LHRH agonist), Bicalox (bi-calutamide) and Fintral (Finasteride).
Finasteride is still something that the doctors here don’t believe will have much effect on the PSA, but to me it is very important, as it stops the conversion of testosterone to the more potent DHT.
DHT stands for dihydro-testosterone, a male hormone five times more potent than testosterone, that is converted from testosterone within the prostate by the enzyme 5-alpha reductase.
So, as it has no detrimental side effects, they agreed to it.
In effect, John is now on the treatment I believe he should have been on two and a half years ago.
I don’t know if it is a case of better-late-than-never, as I do not think the medicine will be nearly as effective as it would have been initially, when I believe we would have been dealing with far more androgen-dependent cancer than independent.
However, the main goal is to try and get the testosterone down to castrate levels.
The specilaist (who did not introduce himself until towards the end of the meeting) stated that as we had previously stopped and started Bicalox a couple of times, we had no stable usage information.
He wants us to try it for at least 2 months. After three weeks we will take another PSA and see him for an appointment.
He is not an advocate for Ketoconazole and hydrocortisone being used as a third-line (second-line in the US) hormonal therapy.
Although there are cases where it has proved to be successful in getting the PSA down, it is a toxic drug and can cause serious side effects.
If John became unwell due to these side effects, chemotherapy would not be considered; the door to chemotherapy, in effect, would be closed to us.
Chemotherapy is his next weapon of choice, if and when the Lucrin, Bicalox and Fintral fail.
He suggests chemotherapy because John is still young and fairly healthy. Therefore, it is thought he would be strong enough to recover quickly from the chemotherapy side effects.
As with anything toxic going into your body, the immune system is compromised to a large degree.
The drug of choice – in fact, the only one available and subsidised – is Mitoxantrone, which I have not read up about yet. But I believe it is a rather old-fashioned drug in the chemotherapy world now.
The more superior drug is Docetaxel, but due to the unfathomable mentality of Pharmac, this is not subsidised for prostate cancer. The cost per injection? Well, only $5000 per dose.
There is slight hope on the horizon, though. The specialist may be able to get John onto a trial for Docetaxel and another drug.
Unfortunately, as I committed the ultimate sin and forgot my notebook this morning, I cannot remember the name of this drug. I will ask again when we have our next appointment in three weeks’ time.
So we left the meeting a lot better informed and probably feeling more comfortable than we have in a while, due in no mean part to the fact that at least we could discuss options instead of being dictated to, as in the past.
Although I’m still slightly frustrated with NZ doctors’ tendencies to err so much on the side of caution because of possible side-effects of a drug that they are not even prepared to try it – even if it has proven effective in the battle with prostate cancer overseas – I still feel that I must get over that and deal with the options available.
John’s cat scan on Saturday showed no progression of the disease and although there is disease in the lymph nodes of the pelvic area, they are less than 2mm.
He’s doing bloody well for someone who was given six months to live.
One other thing that was discussed is that John has burning pain at night in both of his hips that wakes him out of a sound sleep. When he gets out of bed and walks around it subsides.
There was no suggestion of any bone met (metastasis) on his hips, so the registrar is ordering an Xray of his back, as she thinks the pain may be originating from the spine. So we will wait to get the appointment for that in the mail.
UPDATE (a couple of weeks later):
Since the last update, we have received an appointment for the spine Xray. Hopefully, then we will know more.
My gut feeling is that John may have a met on the spine, but we will know more when we get the results.
In the meantime, nothing seems to work for the pain in the hips and legs and the longest John seems to sleep is three hours.
John’s PSA has now climbed to 20.8, but at least the progression has been slowed.
CHAPTER 1: Standing up for yourself
May 30, 2009
When many of us hear the words “you have prostate cancer” we freeze and immediately give ourselves over to doctors, oncologists, urologists, whom we trust implicitly with every aspect of our treatment from diagnosis on.
Of course, these men or women are professionals, aren’t they, and they know all aspects of your treatment and can answer every question you pose to them…can’t they? Well…can’t they?
Unfortunately, as I have found out in some cases, no, they can’t – especially if you are caught up in our national health system.
What I am going to tell you is from personal experience only and if nothing else I want it to be a lesson to all to empower yourselves with knowledge, so you can take charge of your disease and have a real input into what treatment you receive.
When my partner was diagnosed with advanced prostate cancer in 2007, I knew absolutely nothing about the disease at all.
We left hospital after he had been discharged, with a handful of clinical notes that had words longer than the Waikato river dispersed through them.
Words like lymphadenopathy and metastatic prostate adreno-carcinoma. Words that I didn’t know even existed. I would look them up on the internet and the explanation seemed to be as perplexing as the word I was looking up.
It was then I decided to join a “ladies only” prostate group that was online. I found there was nothing here in New Zealand at the time for support, apart from a prostate discussion forum on the Prostate Cancer Foundation of NZ’s web page and that – if it wasn’t being inundated with spam – had a few posts, but they were months old and not really relevant.
So I looked for something else that might offer the support I needed and I found it. In this “ladies only” forum there were women with partners who also had been diagnosed with prostate cancer, and they were at all different stages of battle with this beast.
Some had lost their partners to the disease, some were just in the initial stages of their husband being diagnosed. I had found a place to go. I had also found a place to start asking questions.
During this time my partner had been allocated specialist.
We were in the system, we didn’t have the money to go private (or so I thought), so we were resigned to accept who we were given and at the time be terribly grateful. After all, beggars could not be choosers, as my mother always taught me.
He advised us that he was going to place my partner on a drug called “Zoladex” to lower his testosterone.
Now, although I knew very little about prostate cancer at the time, I had learnt from being in the “ladies only” group that it was better to use a combination therapy at the earliest possible stage to try and lower the testosterone down as low as possible, which in turn should bring the PSA down to a nadir (lowest point).
This combination therapy usually consisted of using a LHRH (leutinizing hormone releasing hormone) agonist like Zoladex and a bicalutamide/ The function of the bicalutamide was to bind to the androgen receptors, thus preventing testosterone from attaching to them. I thought this was a logical choice.
However, the specialist did not agree. His reasoning was that this combined hormone therapy was not proven and that the side effects with mono-therapy (Zoladex alone) were far less than with combined therapy, something I disagree with to this day.
But, at that stage I was neither educated enough nor strong enough in my convictions to argue the point.
Being naive, I hadn’t learnt enough to disagree with a professional. After all, hadn’t he done years of training and wasn’t he the expert in prostate cancer? Who was I to argue? I hadn’t gone to university. I didn’t have a degree (I had University Entrance, but never took it further).
So, I put my tail between my legs and retreated. That was then…let me tell you about now.
A month ago, after John had been on mono-therapy for two years, Zoladex started to fail, probably because my partner’s cancer had more androgen-independent cells than androgen-dependent. Androgen-dependent cells react to hormone treatment and androgen independent cells have a mind of their own.
It was when my partner’s PSA started shooting up (doubling time was < 2 months) the specialist finally decided to place him on a bicalutamide.
And guess what? It failed.
Not only had it failed, but my partner was also showing signs of osteoporosis, because the same oncologist had never placed him on any medication for his bones, even though it was already ascertained the cancer had spread to his bones and the hormone therapy he was on was known to weaken the bones.
So an appointment was made to see this specialist. Now I must admit in the past I had not gone to many appointments with my partner, mainly because of the initial disagreement I had with him over mono-therapy and also because it was not always easy for me to get time off work.
My partner had seen this man about every four months – about six to eight times in two years. He was usually in the appointment about 15 minutes and handed a renewal script for Zoladex and that was that.
But this time was going to be different. Not only was I going to go with him, but I also had gained so much knowledge in the year and a half since I had last seen him.
I had been with the ladies prostate group for two years, I had studied articles and some books, I had checked the Pharmac site to see what drugs were available in New Zealand. I had written to one of the top prostate specialists in the world and asked questions.
I had learnt and was learning all the time about this prostate cancer. I felt empowered and I felt never again would this doctor tell my partner what treatment he should have or shouldn’t have without discussing it with us first.
So we both went to the appointment. As was mentioned previously, my partner did not have the wanted reaction to bicalutamide. The doctor said he was hormone refractory and was to go on chemotherapy.
That is when I disagreed. I said there are second line hormonal treatments for men who have failed first line hormonal therapy. Keto-conazole and hydro-cortizone (both available here in NZ) have given many men an extension of life. Some men have been on this therapy successfully for years.
The doctor advised me this type of therapy was not proven. I said: “Excuse me, but I have proof” and produced from under my folder some printed out statistics from trials proving the success of this particular second line hormone therapy. Not only that, but I had corresponded with men still on this treatment.
He said: “I’ll refer you to a medical oncologist then, to discuss this further” and I said “Yes, you do that.”
I now believe we should have been given a medical oncologist from the start. Here is the definition of a medical oncologist: “A doctor who specializes in diagnosing and treating cancer using chemotherapy, hormonal therapy, and biological therapy. A medical oncologist often is the main health care provider for someone who has cancer. A medical oncologist also gives supportive care and may co-ordinate treatment given by other specialists.”
This makes me wonder: what if I had never empowered myself with knowledge? What if I hadn’t argued the point?
There was also the issue of my partner’s osteoporosis. We were told a bone density test here in NZ has a waiting list of up to a year and the specialist was not prepared to give my partner anything until he had seen the results of the test. He could give him radiation for any pain in his hips, so offered to get him an x-ray that day.
I was just dumbfounded: A YEAR!!! What is wrong with our system? So in the meantime, my partner has nothing for his worsening condition. It’s unbelievable
I can tell you, I just about ran out of his clinic. I raced home to check my meagre bank balance and said: “Right, we are contacting a private specialist for a second opinion.”
I had been corresponding for about a week with the secretary of a specialist I had found on the net and she had quoted an initial consulting fee which was pretty reasonable, although I may have to tighten the budget for a while.
So that’s where we are at the moment…waiting for June 9, when we have an appointment with a specialist. And this specialist knows I know what I’m talking about, because he rang John to get his national health number and told him that.
If anything is to be learned from this situation, it is that you need to empower yourself by learning all you can about this disease called Prostate Cancer.
Your expectations of a medical professional should be to discuss your treatment with you and to guide you in to making a decision, but not to dictate to you what you should do. Learn from this story and take control of your life and this disease.
Mary, May 23, when she joined the US prostate website, NEW PROSTATE CANCER INFO-LINK:
Hello :-) I’m just someone wanting to learn all I can about this disease so I can be empowered enough to make informed decisions on further treatment for my partner.
One day we may lose this battle with the beast but I’ll be damned if we don’t go down fighting and it will never be said I we didn’t try.
My partner diagnosed with metastatic prostate cancer that had spread to both bones and lymph nodes.
Original PSA was 930. Placed on mono-therapy (GNRH antagonist-Zoladex) and PSA dropped continually for just under two years until it reached a nadir of 2.8. Then it began to rise rather rapidly, with a doubling time of < 2 months.
Bicalutamide was prescribed a month and a half ago, but PSA continued to rise. Very unhappy with treatment plan so far, so we will be seeing a new specialist in the near future.
Sitemaster Mike: Hi Mary. I am really sorry to hear that your partner has been diagnosed with metastatic disease. Has he started hormone therapy? How widespread are the metastases? What was his PSA level at diagnosis? What can we do to help you?
Later: Your partner basically has two choices: chemotherapy with some form of docetaxel-based regimen or experimental treatment of some type (sipuleucel-T, abiraterone acetate, MDV-3100).
Unfortunately, I have a strong suspicion that access to these investigational drugs is probably very limited in New Zealand, which may make some form of docetaxel-based chemotherapy your only realistic option.
A prior trial of abiraterone acetate was recruiting patients at hospitals in Australia, and a new trial of this drug is being started in patients who meet criteria that seem similar to those you describe for your partner (see trial description on this link).
This trial only just started a few weeks ago, but I would expect it to start recruiting patients in Australia within a few months. It is possible that some centre in New Zealand could also ask to recruit patients to this trial. You can only get abiraterone within clinical trials at the present time.
To be fair to the physician who has been treating your partner to date, the treatments you describe are standard therapy for a man with your partner’s clinical condition, as you describe it. He or she may well have been doing the best that they could. I realise that that is cold comfort and I wish that I could offer you a wider range of choices.
Mary: I am not sure I feel that John is hormone refractory [beyond standard hormone treatment] yet. I personally would rather try second-line hormonal therapy, such as keto-cozonole and hydro-cortizone before moving on to chemotherapy.
I have read papers which suggest it has been very successful as a second line treatment. What is your opinion of this?
I feel that John should have been on combined hormone therapy (CHT) from the start of his therapy, not mono-therapy.
Although treatment may have again only lasted successfully for two years with combined therapy, we may have stopped the testosterone that binds to the androgen receptors from an early stage and we may have achieved a lower nadir.
…I personally think we should have had a medical oncologist from the start.
Mike: Keto does work well for a while in some patients. It’s pretty much of a “suck it and see” option. Estramustine on its own (at low doses) can also work well for a while in some patients, but should NOT be used if your partner has any history of heart disease.
There are arguments in favor of CHT from the start and even for what is known as ADT3 (LHRH + anti-androgen + 5-alpha-reductase inhibitor). However, none of these options has ever been categorically proven to extend survival compared to any other option.
The only possible problem with using keto is that it would absolutely make sure that your partner is NOT eligible for the abiraterone trials (at the present time) but that option may not even be available to you anyway.
You definitely need to be seeing a med/onc that this stage. I just don’t think you should feel bad about the prior treatment regimen or your choice of that doctor. I suspect he was really doing what he believed to be the best thing.
Mary: Thank you for your advice, Mike. The other problem is we are also now seeing the onset of osteoporosis, which the (specialist) will not do anything about until he has seen the bone density test, which although requested a month ago may take a year (as advised by the specialist) to obtain.
John has pain in his hips and the (specialist) has offered palliative radiation therapy for this.
But…and this is a big but…he has placed John back on the bicalutamide (bicalox) and said “see you in two months”. We don’t even know if this bicalutamide may be feeding the cancer. We also have nothing for the bones in the meantime. And to complicate matters more, John has mild kidney disease.
So, nothing is straight-forward, not even the keto and hydro-cortizone option. It may not be an option, but this is what I need to discuss. I’m not averse to chemotherapy, but I should like to rule out all prior possibilities beforehand.
Luckily, the specialist we are going to see is versed in kidney disease, as well.
Mike: Hmmm…I am a little surprised that John is “back on the bicalutamide”. It is normal to stop the bicalutamide when the PSA rises; see if the PSA falls; and then try a different anti-androgen (eg, flutamide) or something else entirely.
I have no idea why it would take a year to get a BMD test done, unless that’s just the way the NZ health system works. They get done within days or weeks here in the USA – and John should almost certainly be on Zometa or similar to help with the osteoporosis.
The kidney disease does complicate things. At this stage, probably best to see what the med/onc has to say, because I am just speculating based on what little I am aware of. Lemme know when you have more info!
May 24: Mike: LHRH mono-therapy is a perfectly reasonable form of treatment for men with metastatic disease and an elevated PSA. Ideally it should drop the PSA level to <0.1 ng/ml.
There are fervent believers in combined androgen deprivation or CHT (e.g., an LHRH agonist + an antiandrogen) and in ADT3 (an LHRH agonist + an antiandrogen + a 5-alpha-reductase inhibitor) but in all truth there are very limited data to support the idea that such therapy offers a meaningful clinical benefit in terms of either palliation or extension of survival.
A new therapeutic option is the LHRH antagonist degarelix. This is now available in the USA and in Europe. Whether it is yet available in NZ I have no idea. This drug has all the benefits (and most of the side effects) of an LHRH agonist, but drops the testosterone level faster and does not induce the initial “flare reaction” caused by the LHRH agonists. In time it may become first-line hormone therapy for prostate cancer (if no unexpected side effects become apparent in day-to-day use).
Rick (contributor to site): You have pointed out the fallacy of the LHRH monotherapy: the T — even more important, the DHT — that is not stopped by the shutting down of the T from the testes. Long ago Dr. Lebrie established that approximately 45% of the DHT is still available for uptake to the PCa cells after shutting down the testicular production of T. It therefore falls to the androgen blockers like Casodex and Eulexin to keep this DHT from reaching the PCa cells. You are absolutely right in wanting both the LHRH and the blockers as the maximum interdiction of the “food” of PCa.
Unfortunately, Mike being guided by the “evidence-based medicine” dictate, can’t seem to satisfy that evidence need when it comes to the DHT availability as above. And no logic is allowed to intrude. However, if one grants European studies validity, there is evidence that LHRH + blockers delivers superior therapy results. Most literature search will bring these up, if an open mind will allow the reading
As a matter of fact, in Europe a different monotherapy is practiced: blockers (Casodex/Eulexin) without any T interdiction. This approach is easier on the body and eliminates many of the side effects of the more tradition approach. It simply relies on the blockers to keep the androgen receptors from allowing the DHT through. A simple logic.The Netherlands seem to be the hotbed of such innovative treatments. A friend long living in France is facing the need for resuming some form of treatment and is opting for this “other” monotherapy. You might do some searches on this.
Mary and John’s names have been changed.