I started this Blog after being diagnosed with Prostate Cancer in 2010. I thought I was going to die! It was a way of keeping family and friends informed but then became a campaigning tool, helping to make improvements in hospitals nationally. 11 years on, after successful surgery, my PSA is still undetectable. I'm not continuing to Blog about prostate cancer, I'm hoping to leave it in the past, but this blog contains a great archive of information.
When I was diagnosed with cancer, some seven years ago, I thought I was about to say goodbye to a life I had, in the main, really enjoyed. At the time, my friend Charlie became a great support, sending many an encouraging mail. We joined the Army together as 14-year-old boys on 9thMay 1967; hard to believe when I look at kids that age now! We were bothtopof our tree when it came to athletics and a guaranteed gold medal for our unit every time we competed. We both went on to gain Regimental and British Army colours! I guess that’s why we both look at our bodies now, and think, what went wrong?
How sad I was then, a few years back, to hear that Charlie had been diagnosed with Motor Neuron Disease (MND), putting him now ahead of me in the river of life, but still not far enough ahead to hear the falls! Of course, none of us really know where we are on that river; the falls can come at a seconds notice. I may yet overtake my friend, life’s like that, and all that Charlie and I can do for now, is the same as anyone else - enjoy the river.
When we are gone, all we really leave is our reputation and how we made others feel. Charlie’s reputation is very much embedded in this letter he wrote to me recently and has given permission to publish. At a time when you might think he would be caving in, he’s thinking of those around him and making it as easy for them as possible; that’s the mark of the man!
Swim on my friend, there's many a bend yet, and I'm right behind you...
Many apologies Dan – like you I got caught up in things to do – not least building up a presentation and preparing for a Q&A session with my local Hospice – and the local CCG (Clinical Commissioning Group). I attend the Hospice once week – daycare – for a bit of light relief and a chat with a few other MND affected people as well as a few cancer patients. It is quite humorous talking about what will, in all likelihood, kill us. It is a no holds barred discussion about what is affected, the cures, the care system and end-of-life stuff – quite uplifting too. The hospice staffarea great bunch of people and it was they who wanted to know more about MND and in particular how it is affecting me. The CCGarecoming along too because they also want to know more about my experiences with the care system and how they might improve things – they want to give a presentation to the CCG Board of Directors so I took the opportunity to double up on the day. Quite looking forward to the day.
I was recently rather perplexed by the host of questions the hospice staff were asking about my mental state – they have a set of standard questions that give them a ‘score’ indicating ‘state of mind’. I had scored a ‘zero’ in all their graphic scores – not heard of before – and they thought I was maybe hiding some issues from them – but I have been tested many times and always come up with zero issues. My explanation is simple:
‘…you can sit on your RS and tune into black box of bad news (BBC etc) and rant at the perceived injustices in the world – OR – take a hold of the ‘black dog’ and screw it up tight and stuff it in the waste bin – and get on with living my life and not someone else’s…’
Seem to have done the trick. The neurologist suggested that it was OK to get angry at the way this disease gets to you – but I replied that ‘I could’ but it doesn’t help Mags – the main carer – to see me getting angry with myself or feeling sorry for myself. It is a fine line between sharing and caring. Itreadthat line with great care – but err on the side ofhumourand positivity. I think it helps her a great deal to know that I am OK with MND and whatever it will bring.
About that ‘ hereafter’ stuff: science would have us believe that matter (in whatever shape orfrom) remains constant – just gets changed – so I can see how those Roman soldiers are still ‘with us’. But thinking about that – if we are just a collection of atoms arranged in a particular way for a period of time then why not believe in ‘re-incarnation’ of atoms – so with that logic we must all have something of the past within us – and something of the universe too – star child springs to mind (Arthur C Clarke). What if we could find those ‘particular atoms’ and recreate them – hey – Frankenstein!.
Thanks for thinking about stopping or reversing MND – one day I’m sure – but just maybe not today – but I live in hope.
I still don’t hear the crash of the waterfall – but like you – I know it’s there.
Of course, while we are all busy thinking of cancer, which is relatively long-term, we can find ourselves faced with sudden emergencies that can end life even sooner, if not dealt with immediately. Would you know what to do if the person in front of you collapsed at your feet? I recently organised a 1st Aid and CPR training course kindly provided by BNH Hospital in Bangkok. Everyone left feeling far more confident that they now had some valuable skills. Ask at your local hospital to see if you can do the same.
Six injections of OncBioMune Pharmaceuticals‘ prostate cancer vaccine ProscaVax stopped the progression of the disease in 80 percent of patients in a Phase 1 clinical trial, the company announced.
The results applied to patients who had been treated for 19 weeks. All the participants had cancer that had returned after other treatment regimens.
“All the data to date is consistent with previous study data showing ProscaVax elicits immune responses to fight tumor growth in prostate cancer,” Dr. Jonathan Head, chief executive officer of OncBioMune, said in a press release. “We are impressed that 80 percent of the patients treated with ProscaVax demonstrated stable disease” — that is, no progression.
ProscaVax immunizes patients against the protein prostate specific antigen, or PSA, high levels of which are associated with cancer. The vaccine includes PSA plus two immune system activators, interleukin-2, or IL-2, and granulocyte-macrophage colony-stimulating factor, or GM-CSF. It is designed to boost the immune response against prostate cancer cells.
The ongoing Phase 1 trial (NCT02058680) is evaluating the vaccine’s effectiveness against recurrent prostate cancer in patients whose PSA levels had increased for more than six months before the trial started. The study is also assessing the vaccine’s safety.
In the Phase 1a part of the trial, the 20 participants received vaccine shots at weeks 1, 2, 3, 7, 11, and 15.
At 19 weeks, in the first patient follow-up, researchers discovered that the cancer of 16 of the 19 patients had failed to progress. Among the four patients whose disease progressed, three had higher PSA levels. Imaging indicated that the cancer of the other had spread to the brain.
Researchers also found the vaccine to be safe. They observed no serious adverse events or dose-limiting adverse events in the 30 days after vaccination began.
OncBioMune is conducting additional analysis to determine whether the vaccine can increase patients’ immune response against PSA and decrease PSA doubling times — a measure of cancer progression.
“We look forward to continuing to follow the patients in this study to collect additional data and also to conducting a larger study to further validate the therapeutic benefit of our vaccine platform technology,” Head said.
The Phase 1b part of the trial will involve patients receiving booster shots at weeks 27, 35, and 43, along with IL-2 injections at weeks 23, 31, and 39.
The Phase 1 trial is being conducted at the University of California San Diego Medical School, with support from the U.S. Navy Cancer Vaccine Program.
Do you know how many men have died while deciding whether or not to have a PSA test? No, I don't either, but I'd be dead now if I'd listened to the 'Prostate Press'.
Have a PSA test today! That's the easy bit! They take some blood and test it for PSA. Then, and this is the part where almost everyone goes wrong.... Your doctor/nurse says to you with a smile, "Yes, that's fine, everything's OK" and you walk away thinking, everything's OK! But is it? They're professionals, aren't they? They care about me, don't they? If your result is between 0 and 4 and the medical professionals say you are within limits, and thus OK... No, no, no, no and NO! All my tests were within these limits, but my doctor spotted that there had been a doubling of PSA in about 18 months, which is a warning sign that all is not well. It doesn't mean you have cancer, but it OFTEN does!
If you're a man over 50 and you do not know your actual PSA test number (not just..." the doctor said it was ok") and have not written that down so you can compare it to the previous year, next year, then you are dicing with death!
Today, again, I was lucky! My 16th PSA test after surgery 7 years ago, and still, all clear of cancer.
For 10 years after surgery, it's like drawing a ticket every 6 months, knowing that around 30% of us will be unlucky. But 70% will be lucky, and I'm still in that group, so all I have to do is go again in May 2018, and every 6 months after that. If you make it to 10 years, the cancer rarely returns.
BUT, what if I had been in the 30% this time; the unlucky ones? How bad is it to be in that group and what should they expect now?
What is the most frightening thing about cancer? For many, it’s the chance the cancer might return after surgery. With most common cancers—colon, breast, brain, melanoma, or lung, for example—these recurrences are almost universally fatal. Prostate cancer, however, is different. You might find it hard to believe, but men with relapsed disease are more likely to die from old age than from prostate cancer.
Prostate Cancer Is Different
Why is prostate cancer relapse so different? Several reasons. First, it grows and spreads far more slowly than other types of cancer. Second, medications that inactivate testosterone (hormonal blockade) are shockingly effective. Men go into remission for an average of 10 years! But what makes prostate cancer most unique is a particular type of protein produced in the prostate gland called prostate specific antigen, otherwise known as PSA.
PSA Is Amazing
Even though measuring the amount of PSA in one’s blood to screen for cancer has been seriously questioned, PSA is the gold standard for detecting relapsed disease. In fact, other types of cancer have nothing that even approaches the accuracy of PSA. PSA detects microscopic cancer. Unfortunately, other cancers can only be detected with scans, after the recurrent tumors become large enough to be seen with the naked eye.
For tumors to be visualized on a scan, they must be over a half-inch in diameter and contain at least one billion cancer cells. The PSA blood test, on the other hand, detects recurrences with as few as 100,000 cells.
PSA Doubling Time Is More Accurate Than Gleason Score
Detecting recurrence with PSA at the earliest possible stage creates an opportunity to determine the seriousness of the relapse.
With repeated, sequential testing of PSA—say with monthly blood draws—the rate of PSA increase can be accurately determined. How quickly the PSA doubles reveals the grade of relapse. This information is very important because low-grade relapses are treated very differently than high-grade relapses. Most people are familiar with the Gleason grading system, the most popular methodology for cancer grading in newly diagnosed men, that is, prior to relapse. With the Gleason system, the cancer cells are graded by a special doctor called a pathologist. The pathologist views the biopsyspecimen under a microscope and assigns a grade to the cancer. The Gleason system is the most powerful prognostic indicator for grading newly-diagnosed prostate cancer and has a very important role in determining optimal treatment for newly diagnosed men. However, in relapsed prostate cancer, the PSA doubling time easily supersedes the accuracy of the Gleason score. Knowledge of the cancer’s growth rate is the most accurate way to grade the cancer’s aggressiveness, and, luckily, the PSA determines this with unparalleled exactitude.
Once the PSA doubling time reveals the severity of the relapse, a treatment strategy is implemented.
Treatment varies drastically depending on the grade of relapse, so the optimal type of treatments for each grade of relapse is discussed below.
For descriptive purposes, three different grades of relapses can be described: low, intermediate, and high. Knowing the grade of relapse is the basis for treatment selection. Some relapses, for example, are so low-grade that no treatment at all will be required. This occurs when PSA requires more than a year to double. When the doubling time is this slow, the best approach is to withhold treatment and continue monitoring the PSA every three to six months.
Many of these patients remain off treatment indefinitely.
When men have PSA doubling times that are somewhat brisker, say in the six to 12-month range, they will usually be candidates for some form of therapy. Historically, treatment has consisted of a blind shot of radiation to the area of the body where the prostate was located prior to its removal. The area that is targeted is called the prostate fossa. Sometimes radiation used in this fashion will be curative. Studies show that cure rates are best if the radiation is initiated before the PSA rises above 0.5. Like so many types of cancer therapy, the earlier treatment is started the better it works.
If the radiation is unsuccessful, hormonal therapy is the next line of defense. The most common approach is to select an agent from a long list of active hormonal agents of more or less equal effectiveness—Lupron, Trelstar, Eligard, Firmagon, or Zoladex. These injectable medications are typically implemented as a backup if the radiation fails to control the rising PSA. Prostate cancer cells require testosterone to survive, and these medications work by lowering testosterone. Depriving the cancer cells of testosterone causes them to die. Hormonal blockade induces a sustained anticancer effect that is maintained for an average of 10 years, assuming that treatment is initiated early, that is, before the onset of bone metastases. The duration of disease control is much shorter if prostate cancer is allowed to progress into the bones before treatment is started.
To reduce the side effects from having low testosterone, periodic treatment holidays are often recommended. The usual approach is to administer Lupron for six to eight months and then take a holiday. Usually the PSA drops to less than 0.1 within six months of starting therapy. After the medication is stopped and its effects wear off, testosterone slowly recovers and the PSA begins to rise. A second cycle of Lupron is started when the PSA rises to a prespecified threshold, say between three and six. Studies prove that this intermittent approach effectively controls the cancer just as well as if the Lupron is given continuously.
A Milder Type of Hormone Therapy
Sometimes milder, oral forms of hormone therapy such as Casodex (bicalutamide), with or without Avodart (dutesteride), can be substituted for Lupron to reduce side effects. This type of approach might be preferred, for example, in patients who are older or frailer. The most common side effects associated with the standard injectable types of hormonal therapy—fatigue, weakness, and weight gain—tend to be less severe. However, there is one side effect that is more common with Casodex—breast growth. This problem, however, can be counteracted with an estrogen blocking pill called Femara. Alternatively, a moderate dose of radiation administered to the breast area before Casodex is initiated usually prevents breast enlargement.
Treating a High-Grade Relapse
Men with relapsing prostate cancer whose PSA doubling time is less than six months face a more daunting situation. If the disease is not kept in check with effective therapy, the cancer is likely to spread quickly and become life-threatening. Here, the most prudent therapeutic approach is to adopt an aggressive plan that relies on a combination of treatments given simultaneously, aka a multi-modality approach. The remainder of this article will address the treatment of high-grade relapses.
The first step is to use optimal scanning technology to determine where in the body the cancer is located. Presently, the best available lymph node scans (lymph nodes are usually the first site of metastases) are C11 Acetate or C11 Choline PET scans. Unfortunately, in the United States these scans are only available at Phoenix Molecular or at the Mayo Clinic. Recently, a new type of PET scan called Axumin has become more widely available. Studies comparing the relative accuracy of Axumin with C11 PET are in process. Another, newer type of PET scan called Gallium68 PSMA is now entering into clinical trials at various centers around the US.
In addition to lymph nodes, advancing prostate cancer often spreads to the bones. The importance of accurate scans to detect early disease cannot be overemphasized. Recently, bone scan technology has been greatly improved with the use of new F18PET technology. Whenever possible, F18 PET bone scans should be used rather than the older Technisium99 methodology. PET scans for prostate cancer are a revolutionary new development, enabling doctors to apply potentially curative radiation in a far more intelligent manner.
Radiation Plus Lupron Plus Casodex
Once the extent of disease has been determined by accurate scanning, assuming the number of metastases is relatively limited, (say no more than five), the first step it to initiate treatment with Lupron plus Casodex with the plan of continuing it for at least a year. Generally, a couple of months after starting Lupron, radiation is administered to the known metastatic sites (the ones that were detected by scanning) along with further “blind” radiation treatment to the prostate fossa and to the “normal” pelvic lymph nodes. These areas of the body are treated because they are the most common location for microscopic disease, and even the modern PET scans may fail to detect cancer here.
Microscopic Disease Outside the Radiation Field
Studies clearly show that when radiation is directed at known sites of disease, sterilization of the cancer at those sites is usually achieved. So, treatment failures are usually related to small amounts of microscopic disease in other parts of the body that were undetected, despite the best available scanning technology. Therefore, when dealing with these more dangerous types of prostate cancer that have very fast doubling times, using an aggressive strategy that employs systemic medications that have anticancer activity throughout the entire body makes a whole lot of sense. As was already noted above, anticancer therapy is most effective when starting treatment at an earlier stage, while the disease is still microscopic.
Multiple Medications to Eradicate Microscopic Disease
Since Lupron and Casodex can be such integral players in the treatment game, some might wonder if other types of effective anticancer therapies exist. When the question is framed this way, two medications immediately come to mind, Zytiga and Xtandi. These powerful agents have demonstrated anticancer efficacy even when treating men whose cancer has developed resistance to Lupron! Considering that they are convenient oral agents with a manageable side effect profile, it is logical to consider substituting Zytiga or Xtandi for Casodex.
What About Chemotherapy?
In addition to using a combination of medications, as was the approach outlined in the previous paragraph, reports also indicate that the addition of chemotherapy with a medication called Taxotere has the potential to further improve survival. While such conclusions are preliminary, studies evaluating the combination of Taxotere with Xtandi or Zytiga indicate that this approach may be feasible.
Men whose prostate cancer recurs after surgery cannot adopt a one-size-fits-all treatment approach. When the PSA doubling time is very slow, men can be safely watched. When the PSA doubling time is somewhat faster, radiation, Lupron, or both can effectively forestall disease progression for over a decade. Men with aggressive relapses signaled by a very fast PSA doubling time should strongly consider the prompt initiation of multiple therapies in combination.