Ketokonizol

194 More Reasons to Hate Monday

Today we saw the oncologist to review my bone scan and the updated blood tests from Friday.
The results…worse!

My PSA climbed to 194.45 which equates to about a 20% increase within one weeks time.
The radiologist report indicated the bone scan was primarily stable. There were up ticks in existing areas, but no new tumors were identified.

The rise in PSA is very troubling and reinforces our decision that a change in treatment is required. As of tonight, I have stopped taking the Ketoconazole, in preparation for our next step. Next Monday, we will either start DES or select a trial location for Provenge. Our ability to pursue a Provenge clinical trial is dependent on us finding a location that is accepting new patients and logistically reasonable.

I’m not depressed, but just kind of bummed out at this point. I have a very busy week ahead so that will provide a lot of distraction, and leave me little time to ponder what lies ahead.

I remain pain free and even played disc golf yesterday for the first time in over a month. We’ll get through this, as we always do.

At the risk of being repetitive, please join me in a prayer to Saint Peregrine.

Prayer to Saint Peregrine ~ Patron Saint to cancer patients

O great St. Peregrine,
you have been called “The Mighty,”
“The Wonder-Worker,”
because of the numerous miracles
which you have obtained from God
for those who have had recourse to you.

For so many years
you bore in your own flesh
this cancerous disease
that destroys the very fiber of our being,
and who had recourse
to the source of all grace
when the power of man could do no more.

You were favored with the vision of Jesus
coming down from His Cross
to heal your affliction.

Ask of God and Our Lady,
the cure of the sick whom we entrust to you.
(Pause here and silently recall the names of the sick for whom you are praying)

Aided in this way by your powerful intercession,
we shall sing to God,
now and for all eternity,
a song of gratitude
for His great goodness and mercy.
Amen.

Welcome to my World(s)

Quick health update: I can feel the Keto working, seriously. Up until Tuesday I was experiencing pain where my thigh meets my right hip. While playing disc golf this last weekend I experienced mild pain when planting my front foot, a move that is very important to long drives. Anyway I started Keto Monday night I haven’t touched the Advil since! I even went out a practiced my drives last night with the bro-in-law. The result was absolutely no pain and some rather encouraging drives!
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I’m starting to get a little excited about the Disc Golf World Championships.
Here’s a story from our local Fox affiliate and several links if you want to follow along next week:

Up, up and ?

We went to the KU Cancer Center this morning for my monthly visit with Dr. V and to receive my monthly Lupron shot. We left with one of those good news/bad news stories.


Good news is they took all the correct samples etc. and we were in and out in just over two hours! No missing vials, missed tests or long waits for the pharmacy. It was efficiency at it’s finest!

On the other hand, my PSA was up, way up. It now stands at 97.04 up from 66.14 last month.
While we did agree to pay less attention to my PSA when we left MD Anderson in April, this climb has me a bit concerned. This is my highest level since September 2006.I did leave with two new prescriptions for Ketoconozale and Hydrocortizone (HDK). This combination is what I took in 2006 when my initial treatment stopped working. It worked for 16 months, then I tried Nilandron, then I did chemo. Going back to Keto + HDK is somewhat of a risk. There is a chance that it might not work at all. We decided to give it one more try before moving on to something more serious and more toxic. We can try DES (very low amounts of estrogen) but want to keep that in reserve and may end up trying that next. Until some of the newer drugs (Provenge and Abiraterone) are either approved or open new trials, my next choice is another round of chemo in combination with some sort of clinical trial.I knew my PSA was going to be higher, I just did not expect it to be such a dramatic increase.

Last month when we met with Dr. V we discussed the option of starting Keto again, as we were aware my PSA level was steadily trending upwards. I’m not sure about all this yet. Mary and I had lunch and I came back to work. My head is swimming right now with many thoughts.

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On another note, the World Disc Golf Championships are being held in Kansas City next week. Nearly 1,000 disc golfers from around the world will be competing in various age groups and divisions. I signed up to play in the ‘Advanced Masters” division. This is for non-professional men over the age of 40. We play one round on Tuesday, two on Wednesday and Thursday and one more on Friday (the leaders play again Saturday).

Several of the guys I play with (who are better than me!) are in the same division and over all about seven of use that play on Saturday’s have entered in various divisions. Here is the website: http://kcworlds.com/

Starting on Tuesday the 28th you can see how I’m doing here: http://pdga.org/tournament-results?TournID=8105 Scroll down to “Advanced Masters” and look for my name, I signed up late so I’m not showing up as registered yet.

I really have no expectations but have set a few goals for myself; I want to post no score higher than the 60’s and finish in the 75th percentile or my division. Us local guys should have a slight advantage playing these courses all the time, but we’ll see if that helps at all! Overall, I just want to have fun, meet some new people and play respectable over the four days.

Doc, are you serious?

Today was my monthly doctor appointment. I am not sure where the time went…June is nearly over.

For the past weeks I have felt the same, no new aches and pains, no need for Advil or the like. As reported, my knees hurt but Glucosamine is helping a little. I think chemo pretty much trashed my cartilage. As for cancer related pain, I really have none.

So, on to the test results. A little history; after leaving MD Anderson we agreed to pay more attention to everything going on instead of focusing primarily on PSA.

My PSA today was: 66.14
This is up from 55.13 last month. I was not at all surprised considering I am only taking Lupron at this time.

The three new tests came back looking like this:

Alkaline Phosphate (bone portion) – 6 [very low!]
Circulating Tumor Cells – 0 [excellent!!]

This was all followed by the fact they once again screwed up the forth test (the urine test). I could only ask, “Seriously?”. Doc tried to lessen the blow by saying the other markers are indicating good things. I had to just bite my tongue and move on. He promised to write out very, very specific instructions for my appointment on the 14th. I’m not holding my breath.

So then we were off to the treatment center for a shot of Lupron and Zometa [a 25 minute infusion to strengthen my bones]. Turns out someone wrote the orders for next week, so it took 45 minutes to get that straightened out and then another hour to wait for the pharmacy. I’m really finding it hard to be patient in regards to the the service at the cancer center, but I will.

In the end, the plan is this; on the 14th I will have a bone and CT scan. The following week will be my usual four week appointment on the 20th. If at that time, my PSA has continued to climb we might start High Dose Ketoconazole once again. By then it will have been 17 months since I last took Keto and it MAY work again? Like a broken record, I guess we’ll just wait and see.

….reaching back into the bag of tricks!

Happy Anniversary, my blog was three years old yesterday!!!

Friday we met with the oncologist at KU Cancer Center. For those of you in Kansas City that have been in the former Sprint headquarters building on Shawnee Mission Parkway, you would never recognize it, the place is beautiful. They did a wonderful job of renovating the building. As for the service, the disposition of the support staff was consistently warm and friendly. It was quite a refreshing experience, given the situation. The icing on the cake, while sitting in the waiting room, a volunteer pushing a serving cart approached each person and offered refreshments water, soda or juice. Additionally, she offered light conversation and a smile. They get an “A” for service!

Our appointment with Dr. V lasted well over an hour. He was again very patient and sincere. We reviewed my statistics, medications, etc., as well as the health charts Mary and I maintain. We also reviewed a matrix that Mary created that lists potential treatments, based on the research that we have done. Dr. V told us that we captured the current options and took the time to discuss the plus and delta for each option. Before I discuss what’s next, I probably need to provide some history. I’ll leave out some of the details in order to keep this slightly shorter than War and Peace!

Feb 2005: I started Lupron and Casodex. Lupron is a shot, it shuts down the production of testosterone by the testicles. Casodex is an antiantrogen and shuts down the testosterone produced by the adrenal glands. This is the “standard” treatment for advanced prostate cancer, to which I had immediate, although short lived results.

November 2005: I stopped Casodex. In some cases this can lower PSA. In mine, it lasted a few months.

September 2006: With my PSA rising into the 80’s, I started High Dose Ketoconizal with Hydrocortizone (another antiandrogen). Though I reacted well, my PSA never fell below 16. Also, because I was not in pain, we stayed on this regimen through December 2007, when my PSA rose to 30.

Now: my PSA is at 36. There is no standard ‘next step’, there is a lot of grey. Below are the primary options that make up the grey:
– DES: this was the standard treatment years ago. It is still used in cases like mine. DES comes in a pill form that is taken once a day. The issue is it is Estrogen. With that comes breast enlargement. In order to compact the breast issue, patients are given a single round of radiation across the breast bone. [please keep your comments about the ‘man-zere’ and ‘bro’ to yourselves] It also caused some cardiovascular concerns, so it is typically taken with a blood thinner.

– Chemo: the FDA approved chemo treatment for Prostate Cancer is Taxotere with Prednisone. The drug is administered interveneously once every three weeks for 8-10 treatments (depending on tolerance and reactions).

– Then there are a number of alternative treatments. I hesitate to use the word ‘alternative’. This is not witch doctors using ‘goat horn and frog tongue’. This is expert medical doctors specializing in Prostate Cancer that primarily use approved drugs in an ‘off label’ manner.

> Where we ended up. Being that I am not on an antiandrogen at this time, Dr. V recommended I try one more variation of antiandrogen. Starting today I will begin taking Nilandron. Nilandron is similar to Casodex. The anticipated side effects are minimal. We’ll give this 4 weeks +/- to see if I respond. If not, then we will search once again through the grey and decide what the next course of treatment will be.
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On an unrelated topic; have you ever experienced ‘thunder snow’? Yesterday morning we were playing disc golf. Around 9:00 AM we started hearing thunder. Next thing we know the sky is filled with lightening and it begins to produce freezing rain. As we hurriedly made our way back to our cars, the precipitation changed to the consistency of Styrofoam. It was crazy, I guess you had to be there…….