Where to begin? Trying to review and summarize 15 years of treatment and experiences is a daunting undertaking to say the least. If I were not such a big time procrastinator, I would have done this many years ago. I guess it is always best to start at the beginning which in my case would be mid-January, 2000 when I had a PSA test as part of a routine physical. At that time I had just turned 61 and was in excellent health, jogging regularly and playing tennis almost every day. I ran track and cross country in high school and college and would always find an afternoon jog very relaxing and refreshing. I had visions of being active for many, many years as longevity was in my genes as my father, uncle, and two aunts all lived well into their 90's. Unfortunately, my expectations of a long active life took a quick detour as my PSA was 12.39. I then had a biopsy (5 out 5 positive on the right side) and, in early July a prostatectomy. At that time, "nerve sparing" technology was not in vogue at the local AFB hospital where I had my surgery so I was basically impotent from that date. But, fortunately I experienced little, if any incontinence after the catheter was removed.
The pathology report revealed that the lymph nodes were negative but that I had a Gleason Score of 5+4 which is about as high as one can go. There was extracapsular extension and seminal vesicle involvement. The margins were positive with perineural and vascular invasion. In other words, the cancer genie had escaped and was probably traveling throughout my body. Nevertheless, in January and February of 2001, I undertook 6 weeks of 6400 rads of external beam 3-D radiation of the prostate bed with hope of destroying any cancer cells that might have remained there.
By late 2001, my PSA started to inch up a bit and by September, 2002 when it reached 1.28, I started on Lupron which quickly reduced the number to 0.14. However, it began to increase again and in September, 2003 Casodex was added. Again, there was an immediate decline but by September, 2004 my PSA was over 1.0 again and the Casodex was dropped and I started on Nilutamide. At this time I was being treated at the Eglin AFB Hospital and at Walter Reed's Center for Prostate Research. I stayed on Nilutamide until late May, 2007 when my PSA was 8.85 and I was accepted to participate in a Clinical Trial sponsored by the National Institute of Health in Bethesda, MD. I had to be free of Nilutamide for a 30 day period prior to starting the Trial and during that 30 day period my PSA jumped up to 24.5 by the time I started in early July, 2007
The Clinical Trial consisted of receiving a vaccine of inert smallpox cells with the PSA gene in the virus along with Leukine injections. Each subsequent month I received a fowl pox booster injection with more PSA gene in the virus. Ultimately, the PSA gene was to become something like Pac-man and seek out and destroy any prostate cancer cells it might discover. Unfortunately for me the Trial was unsuccessful as my PSA kept rising and I withdrew in December, 2007 when my PSA reached 36.9. I then started on Ketoconazole, but , unfortunately I was immediately put on HDK consisting of 400 mg 3 times a week rather than on an initial low dose keto with a far more tolerant 200 mg 3 times a week. As a result I was very weak and nauseous before I discovered that it is best to start with LDK of 200 mg and gradually work up to HDK. Notwithstanding my difficulties, the Keto did work and my PSA dropped to 10.0 by April, 2008 at which time I became a patient of Dr. Charles "Snuffy" Myers.
Dr. Myers kept me on Ketoconazole along with Leukine injections and estrogen patches plus numerous vitamins and supplements. Within a short time, my PSA was going down every month reaching a low of 1.01 in late November, 2009. It slowly increased, but remaining in the 2.0-3.0 range throughout 2010. In November of 2010, I went to to Sand Lake Imaging at Orlando, FL primarily to have my lymph nodes examined utilizing their enhanced MRI. They were unable to detect any cancer in the lymph nodes, but did find a lesion at the L-3 vertebrae which a subsequent biopsy confirmed as cancerous. In late December, 2010 through the middle of January, 2011 I had 19 days of 45 Gy of radiation treatment of the L-3 vertebrae. My PSA immediately dropped from 3.24 to 1.88.
Once again, however, my PSA slowly started to climb and by early April, 2012 it had reached 5.49 and I stopped the Ketoconazole and started on Zytiga. By early November, 2012 my PSA had increased to 9.57 and the Zytiga was stopped and I started on Xtandi, but with poor results as my PSA climbed to 18.6 by April, 2013 and the Xtandi was stopped. So much for the super expensive "wonder drugs". They may have worked for others, but I had no success with them. My next adventure was to complete the Provenge treatment which I did during a 3 week period between May and June, 2013.
By early August, 2013 my PSA had increased to 40.25 and I once again started back on Zytiga which held my PSA in check for a few months, but by early January, 2014 it had reached 60.7. By February, 2014 it was 76.52 at which time 5 mg daily of Revlimid was added to my regimen and during the next two months my PSA dropped 30 points down to 45.5. Revlimid, I might add, is basically an oral chemo drug used primarily for Multiple Myeloma. After my initial success, the damnable PSA once again began to climb reaching 60.0 in early July, 2014 at which time 0.05 mg of Dichloroacetate (DCA) was added to the Zytiga and Revlimid but with poor results as my PSA increased to 102.4 by late August, 2014 and the Revlimid and DCA were dropped. At that time my next step would be chemo, specifically, Taxotere. But my Platelet count was far too low to start chemo and I had to wait until late October before I could start on Taxotere. During that period of time, my PSA raced out of control increasing to 214.5 by 9 October and to 360.0 by 23 October, a jump of more than 240 in 14 days---or 10 points a day!!
While waitin for my platelet level to increase to a satisfactory level, I had a lung biopsy in September, 2014 and had the results sent to Caris Life Sciences to develop a genetic molecular profile of my cancer which could then determine which medications or therapies might have potential benefit and those with little or no benefit in combatting my specific prostate cancer. The molecular profile will assist in selecting those therapies and medications which have the highest potential for success in combatting my specific, unique cancer. Fortunately, among those with high potential benefit was Taxotere.
Finally on 29 October I was able to start on Taxotere. Considering that another 9 days had elaped from my last PSA, my "estimated" PSA at the start of chemo was approximately 420 and climbing 10 points a day. By the end of the 1st month, my PSA was 510, which although high represented a slowing of the the PSA. By the end of the 2nd month, it was down to 290, then 180, and finally 110 for the past two months. Presently I am finishing up my initially planned 6 months of chemo treatment. I have been taking the 38 mgs of Taxotere once per week for 3 consecutive weeks followed by one week off and then repeat the cycle for 6 weeks which provides 18 treatments. Thus far I have been quite successful as I experienced only minor hair loss and rarely was I nauseous although I was prepared with several anti-nausea pills, including Marinol, an artificial marijuana pill. My greatest problem with the chemo has been the total fatigue and tiredness that I have encountered, plus swollen ankles, and severe worsening of my prior existing peripheral neuropathy of my feet and ankles which now necessitate the use of a cane for ease of walking. Hopefully, the neuropathy will improve once I take a break from the the chemo.
My next appointment with Dr. Myers is on 8 April 2015 shortly after I finish my first 6 months of chemo. Hopefully he will be able to pull a magic rabbit from the hat and come up with something that will provide me with a break from the chemo as I am just run down and would like to go 4-6 months or so without chemo. Once I resume, I suspect that I shall be on Cabazitaxel (Jevtana). This more or less brings me up to date, but I suspect the omissions are numerous and let me quickly try to address some.
First, the matter of scans. Over the years I have had numerous bone scans, CT scans, MRI's, PET/CT's, and X-rays and remarkably, with two exceptions, all of my scans have been "clean" over these many years. The only item to appear on a bone scan was the lesion at L-3 which I mentioned earlier. Although radiated back in 2011, it continues to show up on subsequent scans making one wonder if the cancer has returned or if the scan is just picking up old scaring tissue. In any case, I just had a bone scan yesterday and should receive the results next week.
As for CT and PET/CT scans, tiny lung nodules were picked up as early as 2007. Over the years the nodules increased in size and number but repeated lung biopsies were unsuccessful until December of 2013 when a lung biopsy tested positive for Metatatic Prostate Adenocarcinoma. By that time the largest nodule was measured between 25-30 mm and they were too large and too many to safely radiate or attempt to remove them by surgery. In other words, my only hope would be to shrink them either by ADT or chemotherapy. I had a CT scan last week, after 5 weeks of chemo, and amazingly, the scan appears to show that the nodules have actually shrunk with the largest now measuring 18 x 19 mm and all appear less solid than before. Other than the lung nodules, all of my CT scans over the years have all been "clean" just like my bone scans. Makes one wonder where the cancer has been hiding and why the scans were unable to detect their location especially when my PSA topped 100.
Another problem I encountered, which I might refer to as "collateral damage", was that a CT in December, 2013 detected a constriction in my right ureter caused by the radiation to the lesion at the L-3 vertebrae. The blockage caused the urine to back up into the right kidney and basically killing it. I had a stent placed in the ureter from the the kidney to the bladder monitoring the functioning of the right kidney, but too much damage had been done as the testing revealed no activity. Rather than have the kidney removed, I opted to just leave it in place and see what might happen. This could have been avoided if the constriction could have been detected earlier, but, during that time my CT scans were primarily of the chest, monitoring my lung nodules, and the abdomen and pelvic area was neglected for too long a period.
I might add that over the years I also had several bone density tests. Initially the results showed signs of osteopenia but with the steady use of estrogen patches over the years, my bone density became stronger and stronger and the osteopenia disappeared. The use of Lupron has been interesting. I took it steadily from September, 2002 until November of 2009 at which time my T and DHT started to permanently test at less than 3 for Testosterone and less than 1 for the DHT which is as low as LabCorp apparently tested. After another year of consistent low T and DHT readings, I quit taking Lupron sometime during 2011 and ever since then my T and DHT have never increased from the low of less than 3 for T and less than 1 for T.
To bring my rather long summary to a close, I should add that having been a young officer in Vietnam during the mid-60's my prostate cancer is covered by VA for Agent Orange involvement resulting in a 100% disability. At the present time, in addition to receiving taxotere each week, I also have continued with Leukine injections, estrogen patches but at a reduced amount, and I take 500 mg of Metformin twice each day plus numerous vitamins and supplements. Although the body has taken a beating over the years, considering my high Gleason score of 5-4, I guess I am fortunate to be writing this summary. Who knows, maybe I shall be adding updates for several more years before either the cancer or other health issues overtake me. My first update, of course, will be the results of my last bone scan which I had earlier this week and to address any other omissions that I might have overlooked. Please excuse any spelling errors as I was unable to find a "spell check" button. [Sorry, there isn't one...]
I have just recently completed 6 months of chemotherapy (Taxotere). Other than the side effects from the chemo, namely, complete tiredness and weakness, I am doing well as my last CT scan and Bone scan, except for the lungs and L-3 of the vertebrae, were both "clean". Also, my PSA test of 6 April showed a drop from 110 to 74.
I have just started on a 4-6 break from chemo. Since I was a Zytiga and Xtandi failure, I am trying Ketoconazole again as it kept my PSA more or less under control from late 2007 until 2012. Whether it will be successful again remains to be seen.
So far in my 15 year adventure I started with a prostatectomy followed by external beam radiation of the prostate bed, then came Lupron, Casodex, Flutamide, Nilutamide, Ketoconazole, Zytiga, Xtandi, Provenge, Taxotere, as well as Metformin, Revlimid, daily Leukine injections, estrogen patches, and a NIH clinical trial in 2007. As long as my cancer remains in the lungs and is responsive to chemotherapy, I should be around long enough to take advantage of some of the newer medications (Galeterone, Maraviroc, VT-464, and ARN-509) which are now being tested in clinical trials.
My next entry will be in 3-4 months when I find out whether the Keto has worked. I certainly hope so as Keto, which must be taken every 8 hours and tends to create nausea, at least in me, is not an easy medication to take.
Unfortunately the Keto did not work. I started on low dose for the months of April and May with little success as the PSA increased so in June I started on high dose Keto. Immediately I encountered constant nausea and not withstanding using the anti-nausea pills that were left over from my chemo treatment, I threw up several times during the month. And, this was from a medication that I had previously taken for over 4 years with great success. I received my PSA results on 1 July and to my my dismay it increased from 59 to 120 in one month. Definitely time to drop the damn Keto!
My problem is that I have used all of the current hormonal medications. Upon discussing this dilemma with my local oncologist we decided to give Xtandi another try. During the 5 months that I was on it before my PSA nearly doubled, but a 5 month doubling time is certainly better than the one month doubling time I encountered last month with Ketoconazole. If this does not work, it is back to chemo. Rather than do Taxotere again, my oncologist recommended Mitoxantrone as it will have less effect on my neuropathy which was worsened by the Taxotere. Hopefully the Xtandi can give me a few more months as I have not yet fully recovered from the side effects of my 6 months of Taxotere.
One encouraging aspect of my situation is that my cancer has remained confined to the lungs and it appears that as my PSA goes up the lung nodules increase in size and density and as the PSA goes down the nodules diminish in size. As long as the cancer remains confined to the lungs, hopefully I shall be around for enough time for me to make 20 years which is a goal of mine. I'll let you know in a month or two whether the Xtandi worked.
In my last update, I mentioned that I was having problems with Ketoconazole as not only was I having difficult nausea problems, but during my first month on Keto my PSA doubled, going from 59.4 to 120 during June. So, we (my oncologist and me) decided to dump the Keto and order Xtandi. Unfortunately it took over 15 days to obtain the Xtandi so I continued with the Keto plus I added Revlimid as I had one month's supply left over from my last usage. The Xtandi arrived on the July 14 and I stopped the Keto and started on Xtandi along with the Revlimid.
My PSA for July remained exactly the same as it was in June, 120 but the Xtandi was giving me worse nausea problems than before and I had to reduce the dosage from four 40 mg tablets to three. It helped a bit, but not too much as I was not feeling very good during the whole month of August. I received August's PSA results on 1 September which was on Xtandi alone as I only had a 28 day supply of Revlimid which ran out on the end of July.
What I saw was unbelievable as my PSA leaped to 750, an increase of 630 points or 20 points a day!!! This happened while not only was I on Xtandi but I was still using Metformin, estrogen patches, and daily leukine injections plus my Testosterone remained less than 3 and my DHT remained less than 1. I was almost in a complete state of shock!! This can't be right I said to my oncologist, but sadly it was. Needless to say we decided to drop the worthless (at least to me) Xtandi and immediately return to chemotherapy.
During my last update I mentioned that I was going to try Mitoxantrone as it would have less effect on my neuropathy problems, but due to the big jump in PSA we decided to return to Taxotere due my earlier success with it. So this morning I had my first dosage of Taxotere. I am following the same regimen as before--3 weeks on and one week off. How long I'll be able to stay with it depends on my neuropathy and when I will become too weak and tired to adequately function. Hopefully I can complete 6 months as before.
Also in my last update I mentioned that my goal was 5 more years. I am afraid I am now taking it month by month. Since my cancer has proven to be completly resistant to all the standard treatments, I worry about what I shall do after I complete the Taxotere treatment. Plus I worry whether it will be nearly as effective as last time. What do I do next if it fails? Such problems!! Let's hope that my next update will bring good news as right now I am not feeling too chipper as I have not recovered from the blow of the big PSA increase.
Great news, my Taxotere treatment is off to an impressive start. As you might recall my PSA had jumped up over 600 points or 20 points a day in August up to 750. I promptly returned to chemotherapy on 2 September. After 3 weekly treatments of Taxotere, I had my blood work for September done on 28 September. In that 26 day period, not only did the Taxotere stop the PSA increase of 20 points a day, it actually reduced the PSA 300 points all the way down to 450.
Rarely would anyone be pleased with a PSA of 450, but I was delighted. After my failure this summer with Ketoconazole and then Xtandi, I was quite concerned whether Taxotere would work again much less work as well as it did the first time. Remarkably it has worked better. Now I have to hope it can continue zapping the cancer cells and reducing the size of my various cancerous lung nodules before the side effects catch up with me and I am forced to stop. Last time I was able to get 6 months of treatment completed and I hope to do so again this time.
Also, I had a bone scan done of 21 September. Basically the results were the same as my last scan except for a mild uptake on the posterior side of the right 8th rib. Due to the small size, the radiologist recommends that I monitor the area over the next few months and perhaps employ another type of scan to make sure it does not increase in size. Perhaps a biopsy might be helpful. My oncologist did not seem too concerned and suggested we wait a while before doing anything.
My troublesome area at L3, which I had radiation therapy for a metastasis back in 2011, again "lit up" but it has not increased in size and the radiologist is quite confident that uptake was due to a spinal compression fracture rather than cancer. This was good news as my back has been sore all summer. I quickly contacted my family health provider, received some pain medications (Ultram and Robaxin) and some anesthetic patches (Lidocaine) to be placed over the area. He also referred me to a pain management specialist.
I saw the pain management specialist on Wednesday, September 30. Upon requesting X-Rays to confirm the bone scan's finding of a spinal compression fracture, he initially injected a pain blocker in the area and scheduled me for Kyphoplasty surgery for the week of the 5th-9th of October. This is a procedure that injects bone cement into the damaged vertebrae to correct the deformity and hopefully relieve the pain. Who knows, if it works maybe I can do away with my cane which I have been using all summer. Ken
[Sadly, we were informed that Ken passed away on November 30, 2015 from causes other than PCa. His friend Bernard Mitchell reported that Ken was a mentor, and his passing is very sad since he was a great fighter and helped us all with the clear account on the YANA site of his progress over the years.]