This is a living document that describes Les Briney’s status as he fights prostate cancer. The following is an outline of the steps Les has gone through:
1. Had prostate cancer in 1996 and was treated with radioactive seeds at Sloan Kettering in NYC.
2. 10 years later, with urology appointments every 6 months, Les sees a rise in his PSA from a low of .1 to 1.0.
3. Treats PSA with hormone blockers and it goes back below 1.0
4. In 2014 the PSA goes above 1.5 and is again treated with hormone blockers. Les is concerned but his urologist didn’t appear to be.
5. In late 2016 Les changes urologists on his request and coincidentally his PSA rises from 1.0 to 2.89 in less than 7 months.
6. The new urologist does what the previous urologists didn’t – he orders a bone scan.
7. Les is diagnosed with Advanced Stage IV Prostate cancer which means it has spread to his bones. This should have been found much earlier.
8. Les’s oncologist is prescribing Lupron, a testosterone blocker, plus Dosetaxal chemotherapy for 18 weeks.
9. Les scheduled other doctors for second opinions and will see urologist/oncologists the week after Thanksgiving.
10. Les will start treatment after December 2 unless the second opinion suggests something different.
11. In the meantime Les is on a low sugar diet and is taking various proven supplements. He is only feeling minor back pain that may or may not be due to the cancer in his hip bones.
20 years ago Les discovered that he had prostate cancer. Being the consummate engineer, he researched treatments and ended up going to Sloan Kettering in NYC to have radioactive seeds implanted in the prostate to kill the cancer. For the whole 20 years Les went to urologists every six months for checkups. For the first 8 years his PSA scores were low as expected.
By the 10 year mark the scores started to rise, even though they were still low by most all measures. To deal with the rise to 1.26 in 2009, Les’s then urologist, Dr. Nachtsheim at Scripps, prescribed a low dosage of Finesteride for three months and this lowered the PSA to below 1.0. Then the PSA started rising again, this time to 1.20. Les was concerned at the time and when Dr. Nachtsheim retired and Les tried to get a urologist with experience with prior cancer patients. He tried to see Dr. Carol Salem, but the appointment would have been months in the future and in a private practice only loosely associated with Scripps. Scripps assigned a urologist who prescribed Casodex under the same low-dose regimen. That urologist went on to better things and Les went to his newest urologist with a PSA score of 1.0.
Les was concerned that the new urologist showed little-to-no concern about the rising PSA. As a result Les subsequently asked for Dr. Konijeti on the advice of a friend and also a patient of Dr. Konijeti. Les’s PSA when he saw Dr. Konijeti was 2.79 having almost tripled in 7 months. Dr. Konijeti gave Les orders for bone scans and made the next appointment in two months. Although Dr. Konijeti didn’t convey a particular sense of urgency for the scans, Les, feeling pressure from Kathe and from his own concerns, scheduled the bone scans that week.
Dr. Konijeti called the next day after the scans (Nov. 8th), and told Les that the bone scan showed evidence of the spread of the prostate cancer to his bones. He referred Les to the head of the Oncology Department. Les immediately called to make an appointment with Dr. Kosty only to find that the next available appointment was a month later. The scheduler asked if it would be okay to see a Fellow, Dr. Bhangoo. Of course Les said “yes” and went to see Dr. Bhangoo in two days.
Dr. Bhangoo gave Les and Kathe the bad news that the cancer had spread to Les’s skull, shoulders, chest bones, some of his vertebrae, his hips, and his knees in varying degrees for each location. He explained that prostate cancer often spreads to the bones when it metastasizes. This is termed “Stage IV Advanced Prostate Cancer”. The good news (if it can be called this) is that it generally stays in the bones. The bad news is that it ultimately destroys the bones, so it needs to be stopped. In Les’s case the bone damage has shown few symptoms. Only now can he attribute some of the aches and pains that most consider to be normal to areas that have some bone damage. For example he occasionally feels some lower back pain that may be caused by damage to bones in that area.
Note: For any of you reading this who have had prostate cancer, your urologist/oncologist should be scheduling bone scans periodically. This was not done in Les’s case, perhaps because he has had such a low PSA or just lack of experience on the part of his urologists, so Les is now paying the price. The point is that PSA number itself is a bad marker to follow. Change in the PSA appears to be a much better marker. Les should have had a bone scan in 2009 at minimum.
Dr. Bhangoo said that my case with low PSA is unusual. He has seen patients with PSA levels in the hundreds and even thousands. I didn’t get the impression that this means much in my case, but it was an interesting data point.
The standard, prescribed treatment in cases like Les’s is to stop all production of testosterone via a hormone blocker like Lupron. This is because testosterone feeds prostate cancer. This should curtail more spread, and in many cases is the only approach used. Lupron is given via a shot in one-to-three month increments, the frequency of which is determined by the testosterone levels. This is called Androgen Deprivation Therapy or ADT.
For Les the second prescribed attack is on the cancer itself via chemotherapy, using the drug Docetaxel, which gained FDA approval in 2012. This is normally used when the Lupron doesn’t work, but in Les’s case Dr. Bhangoo said that the combination has extended the life of patients at least a year. Docetaxel is taken every three weeks over 18 weeks. It is administered in an infusion center for three hours. It has the typical side effects like hair loss that other chemotherapies have.
Aside from the above treatments, there are several other treatments that are most often used if the ADT and Docetaxel hormone treatments don’t work. They are as follows:
1. Additional Hormonal Therapy - In some cases where ADT doesn’t work, additional hormone treatment can be prescribed. This is using drugs like Abiraterone and Enzalutamide that further interrupt the hormone/cancer growth cycle. Side effects can be significant.
2. Radiopharmaceuticals – Medicines that contain radiation that systemically seek out the cancer and destroy it. (Metastron or Xofigo)
3. Vaccines and immunotherapy – Based on the patient’s own blood that is taken and enhanced so that it uses your immune system to kill the cancer. This is somewhat experimental and has mixed results. (Sipuleucel-T)
4. Bisphosphonates and Denosumab – When and if the cancer affects the bone function itself (called Skeletal-Related Events or SRE’s) these drugs can be used to both to bring calcium levels down and/or to reduce the risk of more SRE’s.
5. Natural Remedies – All of the above are the approaches that are prescribed by the traditional medical community. Largely outside of the medical community there are many therapies that have demonstrated success in less rigorous trials. The medical community mostly discounts these therapies with the one possible exception being diet.
a. No sugar diet – It is well known that sugar feeds cancer growth, so the thinking is to cut off the sugar source. This is done by cutting sugar out of the diet. This can be done by juicing non-starchy (high carbohydrate) vegetables and avoiding all kind sweeteners. To avoid excess weight loss, protein and fat levels need to be increased.
b. No processed foods – It is thought that the chemicals in processed foods contribute to cancer, so like sugar, the diet would cut out all processed foods and contain only organic foods.
c. Saw Palmetto & Stinging Nettle Root – Trials have shown that this combination reduces testosterone levels and attacks cancer cells.
d. Modified Citrus Pectin – This is apparently from the white stuff between the sections in your citrus fruits. It has shown in trials to inhibit cancer growth by intercepting the communication between cancer cells.
e. Lycopene – Most of the literature points to this as a prostate cancer preventative but some feel it has some cancer reducing properties.
f. Active hexose correlated compound (AHCC) is an extract of mushrooms from the Basidiomycete class, including shiitake mushrooms - Has immunomodulatory and anticancer effects. Large human studies are lacking, but it shows that it can improve the response of the immune system in mice with chemotherapy-weakened immune systems. AHCC is used extensively in Japan with medicine to improve immune response.
Other therapies not applicable when the cancer has spread to multiple locations:
6. External Radiation – If the cancer is localized, radiation is applied directly to the site. This is done externally through many methods including proton beam and 3d conformal beams. Les is not a candidate for this because the cancer is all over the place.
7. Ablation techniques - Use a needle to destroy tumors with heat, cold, or electric currents.
Les wants to make sure that his treatment is the best possible choice for his particular situation. He is interested in all therapies, including natural remedies. Actually he would like to find a program that is integrative, in that it considers all therapies in prescribing treatment, but this is not easy to find.
At this point (11/23/2016) Les is chafing at the bit to see doctors at UC San Diego to get another opinion for treatment. He has postponed treatment during this period in case a better treatment fit is prescribed. For instance, for immunotherapy, the patient must not have started any other treatment. UCSD has several clinical trials that center around some of the alternative therapies, so Les hopes that their program is more integrative. The earliest appointments that he could get were on December 2nd. He is seeing both an oncologist and a palliative specialist. Palliative specialists tend to view the situation more holistically. Scripps also has palliative specialists, so if Les decides to continue treatment at Scripps, he would enlist the aid of a Scripps palliative specialist.
In the meantime, thanks to Kathe’s research, Kathe and Les are on a low-to-no sugar diet and are eating organic foods. The no sugar diet is tough for us sugar-eaters! Les is also taking Saw Palmetto, Stinging Nettle Root, and Modified Citrus Pectin. The good news for Les is that he has lost 6 pounds, but he doesn’t want to lose any more. Also, after less than three weeks of just the Saw Palmetto and the Stinging Nettle (before the diet change), his PSA dropped from 2.79 to 2.51. Of course that could be due to other factors. It will be interesting to see the numbers next week, after more than a month of the diet and supplements.