Step 5 : Provenge

I returned to Dr. Elfiky at DFCI on 22 April, by which time the PSA was now 27.08 and rising.  He had seen the scans and report from Sand Lake Imaging.

My first question was whether the offer to reduce my PSA to 1.0 for 10 years still stood.  That drew a wry smile and a shake of the head.  Oh well, worth a try...

We then looked at taking the Provenge treatment.  Put simply, this is a process whereby the white blood cells are harvested, taken away to a lab and "amped up" over a couple of days, then on the third day are returned to the body.  This is done three times.  I was told that it would beef up my immune system so that the white blood cells would be better equipped to destroy the cancer cells.  The downside was that I had to stop all Ketoconazole, Leukine and Estrogen to "flush" the body.  (By this point I had cut the Ketoconazole down as I was just too fatigued to take a full dose.)  For the first time since March 2008 I was completely unprotected.  This was somewhat scary since I knew that, left to itself, the PSA could double every 11 days as it had in the period before I met Dr. Myers.

The first harvesting took place on 20 May, and the reinfusion took place 3 days later.  It really knocked me about, and I slept for the drive to Ashland and was groggy for the train trip to Wells the following day.  Just hoped that it would do a similar number on the cancer.

The second harvesting was on 6 June and the reinfusion was 3 days later, on 9 June.  This time, as I was walking towards Lesley's car, I felt as if I had had a plaster torn from the top of my brain.  I collapsed into the car and fell asleep immediately.  The next day, she saw I was not in a fit state to take the train, and drove me back to Wells and ensured that Paula (my other health proxy) would keep an eye on me.

I was still fuzzy in the head the next evening, when I agreed to take two Masses for Sunday.  It was difficult to get up, hard to get dressed, and I struggled through both Masses in a way I had never experienced before.  Later, I drove my car to get petrol and had to sign a credit slip when the swipe didn't work, and then found I couldn't sign my name or even hold the pen.  A visit to my PCP on Monday, and scans on Tuesday, confirmed I had had an ieschemic stroke.  Further tests at Tufts NE reconfirmed this.

Sandy and my PCP were insistent that I begin physical, speech and occupational therapy immediately, and thanks to the folks at Goodall Hospital clinic I regained what I had lost.

Needless to say, I did not have the third round of Provenge!

More bad news when the June PSA result came in.

22 APR 2011  PSA   27.08
23 JUN 2011  PSA 212.05

Step 4: 3D Radiation Preparation

Soon afterwards, I went to see Dr. Myers at Earlysville and it was there that he explored further the possibility of 3D radiation (or tomography).

In the meantime I was persuaded by Sandy of Patient Advocates to give Dana Farber another try.  She had been dealing with Dr. Aymen Elfiky with some success, and he could access the Provenge treatment discussed earlier.  We met for the first time on 11 March 2011.  He asked me about my PSA and said: "If I say I can drop your PSA to 1.0 for 10 years, what would you say?"  My response was that he had my immediate attention.  We agreed that first would come the tests for 3D as that would give a good picture of where the cancer actually was.
After some negotiations with Patient Advocates, late in March 2011 I travelled to Orlando, to Sand Lake Imaging.  There, I was assured, was the equipment that could graph where the cancer was within me.  The idea was to come up with a 3D graph of the cancer, and then go to a place such as Sarassota where specialised 3D radiation could be used.  This would attack the cancers from many directions over six weeks, rather than harming healthy tissue with concentrated beams.

The radiologist spoke with me at length, describing the process and outlining the successes that he had had with Dr. Myers' patients.  If the bone lesions were 15 or less and any cancer in the lymph glands was limited to the lower abdomen, then I was a suitable candidate for 3D radiation.

Three days of scans later, I sat in front of a screen with the radiologist hoping to hear certain numbers.  After cautioning me that one test (bone scan) still had to come in, we looked at the screen.  It was eerie, seeing the cancer lesions on my pelvis, and two lymph glands affected too in the lower torso.  But the magic number was not exceeded.  I was told that the final results would be sent to Dr. Myers for him to approve for action.

Three weeks later I sat in on a conference call with Dr. Myers and my health care proxies, hosted at Patient Advocates.  Expecting good news, the bad news came quickly.  The bone scans had shown cancer lesions throughout my skeletal structure.  And as quickly as that, the idea of 3D radiation therapy went out the window.

Dr. Myers gave the suggestion that I should try again to get Provenge, and for that I needed to revisit Dr. Elfiky at DFCI.

In the meantime, my PSA more than doubled.  Oops!

22 APR 2011  PSA  27.08

Step 3: A new approach.

Thanks to the research of Sandy Coulter - case worker for Patient Advocates - and funding from the diocese of Portland, I had an appointment with Dr. Myers of Earlysville VA on 1 July 2008.  By that point my PSA was an estimated 80 and doubling every 11 days.  Before the appointment I had tests for PSA, testosterone, DHT and Vitamin D.

Dr. Myers started with the most thorough physical examination of my life, and then listened to my story.  I asked him if he could help me deal with the cancer using some means other than Lupron, which I insisted was not an option.



Dr. Myers with me at his clinic

He left the room for a period, saying later that he was trying to work out how it was that I - with no family history of prostate cancer - had acquired it, and why the Lupron had failed.  He looked at the recent test results and saw that my dihydrotestosterone (DHT) was very high.  Since prostate cancer's preferred fuel is DHT over testosterone by a factor of 10, he considered that the Lupron blockade of testosterone was defeated by the availability of DHT in my system.

He returned with a protocol for me to follow.  It was a three-fold combination of Estrogen, Ketoconazole and Leukine.  He went through each in detail, saying what they did and how they were to be used, and promised that the combination would give me a net increase in energy over the Lupron protocol.  He also recommended certain supplements and a Mediterranean Light diet.  He promised that he had many arrows in his quiver and this would turn out to be the case as he did his best to drive down my PSA.

The protocol was not easy, it was expensive (covered thanks to my diocese) and required great discipline as the Ketoconazole needed to be taken at precise 8 hour intervals.  It also required me to inject Leukine each night.  I had nausea 2-3 times a week from the Leukine until I learned a better way of dealing with it, and at times was very ill with SJS symptoms.  There were menopause-like symptoms too, but not as severe as with the Lupron.  On the other hand, I had two great years full of energy and creativity.  The diet also helped my blood pressure so I was able to go off the pills I had needed to keep the BP down.

In July 2007 I met with Dr. Oh to arrange for staging scans.  He was totally unamused that I had seen Dr. Myers.  He demanded: "Who is in charge of this ship?"  He grudgingly authorised the tests, and I have not seen him since.  I had a lot of difficulty getting the scan results and finally I was put through to a flunky who said the scans were clear (I hae me doots!).  He asked what my PSA was and when he was told 1.1 he said it was impossible.  My reply was that it certainly was for Dr. Oh.

One last call came from DFCI, but from dieticians who were interested in the supplements and diet that Dr. Myers had recommended.  A comment I got was that the oncologists were in love with their drugs and did not have much time for the thought that there could be a dietary component to good health.

I did get a little obsessive over the monthly blood draws (the chart below shows this!) as the PSA plummeted down to 0.1 and then there was the gritty fight to get it down to remission at 0.01 but sadly I only went as far as 0.04 by August 2009.  At that time he put me on a 9 month holiday from Ketoconazole and Leukine, trying to manage the cancer with Estrogen and supplements until the PSA was 1.82 and then the Ketoconazole and Leukine was resumed.  Unfortunately this had little effect and the PSA inexorably rose even when the dosage was increased in September 2010.

In the meantime, my control of my plumbing was lost.  I met again with Dr. Hu, who suggested that I see Dr. Mourtzinos at Lahey Clinic.  He was able to add a valve to stop unwanted leaks.  This surgery was successful and stopped embarrassing moments.

Dr. Myers mentioned that Provenge was now available and I met with the "gatekeeper" for it at Lahey Clinic.  It was an incredible appointment.  I will not mention his name, but he came into the room and exploded in anger because I had come from Dr. Myers and was there at his suggestion.  He expressed his reservations about Provenge and its approval by the FDA (and he may have been spot on with those comments as subsequent matters unfolded).  He also refused to meet with me again unless I abandoned Dr. Myer's therapy.  We did not meet again.

Meanwhile, I could not tolerate the increased dosage even though I had managed it a year earlier.  I became very fatigued and my judgement became impaired - especially my driving.  I tried to keep at my work as a priest but seemed to be running on empty.  By January 2011 I had been unable to take my turn at the Sunday Masses for 3 of 4 weeks, and at that point I asked for sick leave from my parish.

I continued on the full therapy for two more months after I went on sick leave.  By then I was still very fatigued.  I met him in March 2011 and reviewed what had been happening.  He suggested I go to Sand Lake Imaging in Orlando FL, with the idea of trying 3D radiation therapy and that is the point where the saga will resume.

History of Dr. Myer's therapy

                           PSA         Testosterone          DHT            Vitamin D 25H      Estradiol          Estrone

Normal             0.0-4.0            241-827              30-85            32-100             <54 (M)           12-72 (M)

23 Jun             55.5                 258                      230              18                                           

01 July                       Meet Dr. Myers at Charlottesville VA.  He identifies DHT levels as why Lupron therapy failed, begin Avodart.

03 July                       Commence Estrogen patches and Ketoconazole therapy, add Leukine on 24 July

31 Jul                 4.9                     4.1                                       19.7                   268                327

29 Aug               1.1                   46                                          22.2                   306                401

29 Sep               0.4                   20                                          20.4                   487                386

29 Oct                0.1                 <10                                          18                      461                341 Stop Leukine

28 Nov               0.3                   19                                           25                     399                417

10 Dec                        Double dosage of Ketoconazole,add Resveratrol and Quercetin

24 Dec                        Double dose of Leukine, very ill with heavy cold and SJS symptoms, suspend Leukine for a fortnight.

30 Dec              0.3                                                                 33.8                   426                503

                                    During January, begin 14 day course of Thalidomide

29 Jan 09          0.1                                                                 32.8                   546                559

27 Feb             <0.1                                                                 30.4                   640                429

                                    During March, begin 14 day course of Thalidomide

27 Mar             <0.1                                                                 20.7                   589                588

29 Mar                         Very sick with heavy cold and SJS symptoms, suspend Leukine for a fortnight.

01 May              0.08                 42                      <2.0             22.7                   455                352

                                    Halve Resveratrol supplement, delete Quercetin supplement

28 May              0.06                 52                      <2.0             33.4                   328                ?

29 Jun               0.06                 68                      <2.0             26.3                   148                141

30 Jul                0.04                 44                      <2.0             22.9                     50                  41     

31 Aug              0.04                 34                      <1.0             25.6                   188                169     

09 Sep                        Stop Ketoconazole/Leukine therapy, retain Estrogen, add superbiocurcumin supplement

01 Oct               0.11                 11                      <1.0             34.5                   676                234     

30 Oct               0.15                 40                      <1.0             39.2                   821                385   

30 Nov              0.24                 16                      <1.0             50.5                   646.9             527 

30 Dec              0.28                 11                      <1.0             50.2                 1058                753     

2 Feb 2010       0.39                 11                      <1.0             60.2                   827.2             801     

1 Mar                0.47                   9                      <1.0             57.5                   704.3             471    

11Mar                          Add Nitro patches, double dosage of super biocurcumin supplement

1 Apr                  0.66                 11                      <1.0                                                                      

30 Apr                1.11                 13                      <1.0             61.7                   782.1             579    

                                     Delete Nitro patches

1 Jun                 1.82                 13                      <1.0             63.6                   517.0             328  

19 Jun                          Resume Ketoconazole/Leukine therapy at original level, stop Resveratrol supplement

1 July                 1.70               < 3                       <1.0             53.4                   187.0             129    

2 Aug                 1.92               < 3                       <1.0             36.7                   100.3             127     

10 Sep               3.04               < 3                       <1.0             30.4                   474.6             444 

16 Sep                         Increase Ketoconazole to 300mg each 8 hours, stopped Leukine for a month because of cold and SJS symptoms

8 Oct                  4.59               < 3                       <1.0             26.7                   356.6             229     

8 Nov                 4.47               < 3                       <1.0             24.2                   364.5             259    

7 Dec                 5.31               < 3                       <1.0             28.7                   469.6             482   

11 Jan 2011       7.13               < 3                       <1.0             25.8                   505.9             349    

28 Jan                         Stopped Leukine for 3 weeks because of heavy cold and SJS symptoms

10 Feb              13.12              < 3                       <1.0             27.6                    699.8             511   

10 Mar              10.82               <3                       <1.0             29.1                    615.9             390

Step 2: An unpleasant surprise - PSA rise treated with Lupron.

Now that my brief journey with prostate cancer was over, there was only the PSA test to confirm it.  In mid-May the PSA came back at 30.55 and a second test a week later scored 31.5 - the cancer was still present and very active!  I was now assigned an oncologist at the adjoining Dana Farber (DFCI), initially Dr. Taplin for two meetings and then Dr. Oh.

A battery of tests - MRI, CT and bone scans followed.  I discovered that when the cancer is thought to be confined to the prostate, there are many options; once it is loose in the body, there is only the bitter cup of hormone therapy.  A suggestion from one oncologist was that I have radiation to the lower abdomen as a way of dealing with any residual cancer there.  Dr. Hu appeared to take it as an affront to his surgical skills, that he had gotten all the cancer at the site and it was now in micrometastasis in the bloodstream.  I did not have the radiation.

I began hormone therapy at B&WH with a Lupron shot on 20 July 2007 by which the PSA was now 55.  From my readings I was very nervous about this drug and its side effects.  It has a mechanism of shutting down testosterone production in the testes.  I refused the drug Casodex which shuts down testosterone production in the adrenal glands.  I was upset to learn that I had received a 3-month shot instead of the 1-month shot I had requested, and was in a poor frame of mind when I met Dr. Oh shortly afterwards. That night an intense headache began that is still with me to this day.

Other side effects followed the headache.  I had intense mood swings and felt like there was a burning rage trying to burst out of me, hot flushes & perspiration, and at times it felt like my internal thermometer was broken.  There were many moments of fatigue and poor concentration.  I couldn't look people in the face and they seemed like objects.  Worst of the lot were suicidal thoughts.

In the meantime one side effect of robotic surgery began to appear.  Frequent #2's meant lots of trouble with bleeding from haemorrhoids, and I saw a surgeon at Tufts NE to band the veins that he could reach.  As time went along it appeared surgery would be inevitable.

Despite the side effects, the Lupron was working.  The PSA dropped, first to 16.5, then 8 and a slow trip through 4.8 to 4.6 to 4.4 to 4.25 and in January 2008 Dr. Oh pointed out that additional help was required to get the PSA down through first the 4 and then the 1 barriers.  I noticed that the testosterone levels were 30+ and accepted his advice to take the Casodex.

On 27 March 2008 the PSA rose to 7.0 but the testosterone levels were up too.  Dr. Hu told me to stop the Casodex, but I refused the next Lupron shot as well.  As far as I was concerned it had failed, and the side effects were now so intense that I could not tolerate them.  Dr. Hu then broached for the first time the option of castration, and perhaps did not sell it well by suggesting that it would have the same effect as the Lupron.  No way did I want to swap a temporary miserable state for a permanent one!

In March I had PPH surgery at Tufts.  The best way I can describe it is as an "internal bum-lift".  It is certainly easier than the traditional "slash and tie" surgery I had back in 1987 which helped me redefine pain.  This dealt with the haemorrhoids in a fairly comprehensive fashion.

Without the Lupron I started to get my head together.  In a brief oasis for this journey I had a short period of time in which I felt "normal" or whatever now passes for that!  No more mood swings, no thoughts of suicide, renewed energy - it was great!  The headache was still there but at a lesser intensity.  I feared Lupron and if that was the only other choice I was prepared to accept death.  At least I would be me. 

At this point my health plan (Patient Advocates) began casting about for other options. 

History of Lupron therapy:

                 PSA                 Testosterone     DHT           

Normal      0.0-4.0             241-827           30-85              

20 Jul 07   53.8  

                         Commence Lupron with Dr. Hu at B&WH under supervision of Dr. Oh. Immediate headaches and fatigue.

Sep           16.5

Nov             4.8

Dec             4.4

Jan 08        4.25

                          Added Cadodex as Dr. Oh concerned PSA drop had reached plateau. Need to get <4.0 and then <1.0

Feb             4.25

Mar             7.0  

                          Refused next Lupron shot and stopped Casodex. Symptoms diminished as testosterone returned

23 Jun      55.5                 258                    230 

Step 1: The start of the journey - diagnosis, prostate surgery and recovery.

In early December 2006, I had been in Lahey Clinic for a routine colonoscopy.  The doctor conducting the examination said that my prostate was enlarged on one side and that I should see my doctor as soon as possible.

This was a surprise.  The last annual physical had seen a PSA of 1.15 and there was then no indication that there was an enlargement, nor had I experienced any discomfort.  In January 2007 the new PSA reading was 13.5 (oops!).  Sandy Coulter (of Patient Advocates, my health plan) arranged an appointment at Brigham and Womens Hospital (B&WH) with urologist Dr. Hu, a pioneer in Boston of robotic surgery.  He confirmed after biopsy that I had prostate cancer and my Gleeson Score was 3+4=7.

With the initial diagnosis of prostate cancer, there are so many options: 2 types of surgery, a number of forms of radiation therapy, hormone therapy and then some more exotic stuff - the patient is expected to do a lot of reading!  I counted 17 different choices (and they were all different types of bad!) but chose robotic surgery because:

1. My surgeon was confident that the cancer was confined to the prostate;
2. If the cancer was only in the organ, removal of the prostate meant I would be cancer-free (i.e. cured!);
3. Robotic surgery offered a quick physical recovery and return to work.  I understood though that there would be work required on my part to restore urinary control.

Da Vinci robotic surgery

Surgery took place on 12 April at B&WH and I understand that there was unexpected and heavy bleeding due to the unusual siting of my abdominal blood vessels.  I awoke in recovery with a thick lip on the top RHS from the intubation.  The staff seemed to be in a hurry to get Lesley, my health proxy, to go home.  Once on my own they said that I may have had some form of stroke and wanted to conduct some tests to rule it out.  My later thought is that the fat lip from the intubation may have given me the appearance of Bell's palsy, and I suspect that they were having trouble with my Australian accent...

So, a battery of tests followed, MRA and CT scans among them.  Eventually, around 9.00 pm, Dr. Hu came in and wanted to know why I was still in recovery.  I didn't hear all the conversation but I did hear Dr. Hu say: "He's Australian, he speaks funny anyway.  Get him out of here."  So up to a ward I went, but by now I was ravenous and had had nothing to eat.  It was too late for a meal, but a very kind nurse gave me some snacks that she purchased from a vending machine.

A quick inspection in the morning showed I was hooked up to a saline drip IV and a catheter, and had some sort of drain in the lower abdomen.  The drain was removed, and I soon was able to take a series of walks around the ward to stretch the legs and get some exercise.  Later in the morning I received instructions on how to deal with and live with the catheter, and was released with a follow-up appointment for 6 days time at Dr. Hu's office.

The next week went in what was in the early days a pain-filled blur.  I managed the catheter reasonably well, emptying the bag at the appropriate times and only once caught it on something.  (It only happens once!  The pain is a great teacher.)  I discovered it was best to put the bag in a bucket by the side of the bed at night, and place a pillow against my back to stop any turning in my sleep.  During the day I would strap a small bag onto my leg and connect to the catheter so I could go for walks and keep up the exercise.

The surgery caused my body's control of the bowel to go out of whack, and ever since I have had to keep a close eye for the nearest available bathroom.  From what had been a normal pattern of 1-2 visits a day, suddenly it was 8-10 visits that were terribly urgent.  I learned later that this was an unappreciated side effect - certainly my surgeon did not refer to it before the operation, but he did a few years later when he wrote a study on robotic surgery and its unanticipated effects on continence.  "Never pass a bathroom without passing!" became my mantra.

At last I had my appointment with Dr. Hu, but humiliation came when a nurse emptied the catheter bag and then used the catheter line to put a litre of water back in my bladder.  At that point she removed the catheter and I had to hold everything by willpower alone.  Next I had to demonstrate that I could start and stop on demand.  I passed!  Then Dr. Hu advised me on maintenance issues and asked me to have a PSA test a month later because he had revised my Gleeson score to 4+4=8.  (Uh-oh!  I might not have had that surgery at GS 8...)

Another week or so followed as I worked on kegel exercises and dealt with new realities.  Heavy lifting was out for a good while, but every sneeze or cough became a moment of leakage.  (Control was progressive: I had immediate control in the mornings, then it took a month or so to have it through to about 3.00 pm, and it was only after a few months more that I had full control through the entire day.  But not always...)

Finally it was time to return to work.  I was pretty happy with myself for the shape I was in after the surgery.  It took a little while to learn to pace myself back in the parish, as tiredness would lead to mishaps with the personal plumbing.  All in all, things were good.  The cancer was gone and all I needed to do to confirm it was a PSA test.