PSA

Unwanted, but hardly unexpected

If the past 55 months have been nothing else, they have been tumultuous. Today was just another example of the uncertainty that is my life.

My PSA number was back up, this time to 99.43

I was pretty bummed out, for about an hour. Seriously, by the time Mary and I got home I was pretty much over it. It’s a good time, if there ever was one, because I’m busy…between the preparation for the upcoming golf tournament, the reorganization going on in the office, and a few other irons I have in the fire, I have little time to slow down or dwell on my PSA number.

We did leave the doctor with this plan; on October 6th I will have follow up bone and CT scans. Aside from taking up most of a day, these don’t bother me too much. I am slightly concerned however about the total number of these I have had over the years. I should probably know this off the top of my head but I would estimate that this makes a dozen. That much radioactive dye can’t be that good for me. On the 6th I will also have a PSA, CTC and alkaline phosphate test. The combined results of these tests are what we are hoping will lead us to a new plan.

The choices for my next treatment are limited; DES (estrogen), another round of chemo (3 weeks on, 1 week off versus last time when I did 1 on 3 off) or a yet to be determined clinical trial.

So that’s the update, pretty crummy overall but we’ll get through this like we have before. Many, many thanks for all the kind thoughts and prayers!

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.

Summer time, summer time, sum-sum-summer time!

On Monday we met with Dr. V for my monthly appointment.

PSA = 39.75

This is up slightly from four weeks ago (36.16) but not significantly.
He reviewed the letter from Dr. L at MD Anderson and we discussed the recommendations at length. He is in agreement with the recommendations and he ordered the two new tests. We will use a combination of these three tests two determine when we make our next move.

I already have total alkaline phosphates measured each month as part of a standard CBC Blood panel but the first new test will break it down further. Here are some details from my friend Howard at hrpca.org:
Alkaline Phosphatase, serum Bone-specific alkaline phosphatase (BAP.) When alkaline phosphatase is measured, it is actually the sum of the bone-specific and liver-specific components (isoenzymes.) BAP can indicate excess osteoblastic cell activity which may indicate bone metastases. Metra Systems, Inc., says that Bone Alkaline Phosphatase is an osteoblast membrane-bound molecule which is involved in bone formation. Levels of this enzyme are thought to be indicative of the activity of osteoblasts.

Another description of AlkPhos is that it is an enzyme that is found on the surface of osteoblasts(the cells that build bone) and as such is used as a serum marker of increased osteoblast activity. Since bone is being added at prostate cancer bone metastases, an increased alkaline phosphatase can mean increased bone met formation. A recent paper by MR Smith et al in Urology discussed BAP and NTx in their role as predictors of skeletal complications in HRPC patients (MR Smith, et al, Urology 70: 315-319, 2007.) Their conclusion was that elevated baseline levels of BAP are associated with a greater risk of adverse skeletal outcomes – events such as shorter time to radiotherapy or shorter time to first pathologic fracture. NTx was also found to be of value in monitoring patients on bisphosphonates.

The second new test will measure the amount of CTC’s or Circulating Tumor Cells. Recent studies suggest that for men with advanced disease, measuring whether the number of cancer cells circulating (CTC) in the blood stream is rising or falling may be a more accurate method for determining response than PSA. CTC’s are found in many cancers but are most common in prostate cancer.

So we ran both tests in order to establish a baseline and I will have the tests repeated in three months along with an updated bone scan and MRI. So unless my PSA goes crazy or I develop pain somewhere, no foreseen changes for the next three months.

Not sure if you caught that, three months, as in July!!!

Woo-hoo!!!

5 hours of pain followed by 90 minutes of pleasure!

First and foremost, PSA: 36.36, down a fraction from last month.

It’s all about stability right now and this was great news. I was pretty worried before the appointment.,

Overall yesterday’s visit to the cancer center was a great big drag! As usual we arrived at 8:30 for labs, then our meeting with Dr. V, and then it was off to treatment. On a normal day we would have been done and on our way by 11:00am. Everything was proceeding as expected until I checked in at the treatment center at just before 10:00am. We waited, and waited and finally were called back at 11:40ish. One thing led to another and it turns out we didn’t leave until 1:15pm, nearly five hours later. I’m not sure what the issue was? Too many patients, too few nurses, but it was frustrating! Oh well, I’m just hoping it was an anomaly.

Mary and I were famished at that point so I agree to have lunch with her at the Blue Koi. The history on the Blue Koi is this; it was one of our favorite places to eat until last summer. We would go there for lunch everytime I had treatment or doctor appointments. However, after about my third or fourth chemo treatment, I couldn’t eat it anymore. It tasted horrible. It was a shame that the one thing chemo had to ruin was my ability to eat at one of our favorite places.
So yesterday we returned for the first time since last summer. The result? All is well, it was wonderful, again!

After lunch I returned home and finished some work for a few hours before my next appointment, my massage. Mary had given this to me for my birthday back in January. This was only the second time I had a massage. Te first was over two years ago in Tucson. This time it was quite a bit longer, but I have to tell you, the 90 minutes went by like five! Bottom line, I slept like a baby and am feeling good today!

In like a lamb…

On Monday, March 2nd, I had my monthly appointment for Zometa (bone strengthener) and Lupron (testosterone suppressor). I thought my next meeting with Dr. V was on the 30th of March, so I asked the lab to draw enough blood to run a PSA test.

The result?

Down to 36.41 or almost two points lower! Not a big decrease (considered statistically stable), but a move in the right direction none the less…We’ll take it!

It turned out we did have an appointment with Dr. V, but it was brief. He was going to provide feedback from a conference the week before, be he was not able to attend. We were going to provide him an update on our potential decision on next steps, but we were not yet prepared to make that decision.

Later that Monday, we were able to consult with a medical expert who shared with us his personal opinion of the best option for us to treat my specific condition. In considering where the treatments are offered, we may be headed back down to MD Anderson. We will probably pursue a clinical trial that offers bone targeted therapy. Given that my specific cancer is thriving off the tumors in my bones, we think it makes sense to find a treatment that targets the bone metastasis. We will make arrangements to meet with a doctor down at MD Anderson and ask for their second opinion regarding the next treatment.

That’s all I have to report for now. I’ll post further updates as the details unfold. In the mean time, taking it one day at a time!

apprehension and ambiguity

Here area a few thoughts I jotted down on Monday in the moments before my appointment:

What if:
– it’s good news
– it’s not
– this never happened
– my response had been ‘average’
– I wasn’t surrounded by love
– I was silent
– I was still fat
– I ate a big thick cheeseburger

My thought immediately after the appointment was more like this:
– God I hate ambiguity!

My PSA is stable at: 38.16

I was hoping, as always, for a decrease, and although it is good news that the PSA level did not rise significantly, this just leaves us hanging. We agreed with Dr. V to take no action for the immediate future. The main reason is that although my PSA remains high, I’m not in pain, and if my upcoming bone scan results are consistent with previous scans, showing no upticks in bone involvement, it was recommended we not rush to a decision.

Furthermore, our next decision is a big one, therefore we are going to seek additional medical opinions. We are going to have my file reviewed by another medical oncologist, who will recommend where we should go for a second opinion. As the treatment options become increasingly limited, it is even more important that we chose the right treatment sequence. So our medical team will expand yet again. This is a good thing and we are grateful to all the doctors that have supported us and continue to support us through this journey.

We have files and x-rays to collect and send and we probably won’t have an indication of our options for at least a week, more likely two, so I won’t say a whole lot more right now. In the interim, we will try our best to maintain a positive attitude (admittedly, some days are easier than others!) and of course, continue to pray for God’s continued blessings and guidance.

Ramblings

I have nothing specific to report today, so here are some random things that come to mind.

Have you heard the new Darrius Rucker CD, “Learn to Live“? In case you don’t know, he is the lead singer of Hootie and the Blowfish. The genre is supposedly country, but I would consider most of the songs more rock. Regardless, I still like the CD overall.

I started a new TV series via the iPod. Last week on Monday night after treatment I needed something new while I was awake all night. The show is “Brotherhood” and is currently in season three on Showtime. Since I can never start a new series in the middle I got season one from NetFlix. After four episodes it’s better than average but I’m still not sure. It’s really the story of Cain and Able. The good brother is the city councilman and bad brother a small time gangster, with a conscious.

We are deep in the throws of winter this week in Kansas City, overnight temperatures tonight well below zero. It is supposed to be short lived and rumor has it we might see the fifties by the weekend. Hmmmm, can you say disc golf?

The foundation, www.flhw.org has a few events that are coming up in the first half of 2009. On Fat Tuesday, February 24th, we will be having another Texas Hold ‘Em event. Details will be available soon. On Saturday May 9th we will be having our second annual disc golf tournament, again details will be available soon. We are also contemplating a dinner/wine tasting but have a long way to go with this possible event.

Finally, I am looking forward to Monday January 26th with trepidation. On one hand, it will be the end of chemo. On the other hand the ominous ‘what next’ lies ahead. God will guide us in our decision, but all decisions from this point on are compounded in their significance. We’ll see what happens when we get there…..

What’s up with you? Don’t ask me…..

It’s my PSA, up to 39.97 (from 31.18)

What the hell?  
Yesterday’s post was 100% dead on regarding my feeling better than I have in weeks, so where does this come from?
Dr. V tried to put a positive spin on it “… it’s only one data point, PSA can go up and down..” blah, blah, etc.
I appreciate his comments, but as you know, we were looking for it to go in the other direction, looking for the downward trend to continue.
So we just keep on keeping on; I am minutes away from Chemo # 9 (of 12). Two treatments from now, when we come in on January 5th, we will make, or come close to making a decision about what will be the next treatment after we have completed this regimen.  The likely choice will be DES. DES is an oral pill taken once daily. It is basically women’s estrogen.
Before beginning DES I will have to have one treatment of radiation across my breast bone. This is to help alleviate one of the potential side effects, breast enlargement.
Yeah, that’s right, it just keeps getting better and better!
Before making this decision, we obviously have a little research to do. There are a few other clinical trials we might consider, including Provenge. 
It’s all so crazy, unpredictable; I feel great, my bone scan was stable but……
A MUSIC UPDATE: I haven’t included any musical suggestions in quite some time.
Last night I downloaded Darius Rucker’s new album. If you don’t recognize the name, he is/was the front man for “Hootie and the Blowfish”. Well it seems Darius went a little country! I just listened to it in the lobby, it’s really good. His strong voice come through loud clear all without too much ‘twang’! It’s a keeper, I give it two thumbs up!