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