hrpca

Like Atlas

The news of late on one hand is weighing heavily on me, but on the other, we have been here before so I face the day with a smile and try to put the fear behind me. As we revisit this ‘place’ on our journey, I was recently reminded that Faith, Love and Hope are once again those attributes that we must lean on and call on to get through this period.

I try not to speak here as some sort of self-appointed expert on cancer. I just try to share what I know, what I feel about living with advanced, metastasized, hormone refractory Prostate Cancer. Right now it is the unknown that is most concerning. Fear is a particularly distracting emotion. It’s there, right there below the surface, sometimes deeper than others. This will all be behind us once we make a decision. Next week I will either prepare to start a clinical trial or begin a new treatment. Time is of the essence.

If I start the new treatment we will know within a few weeks if it’s working. However, what we will not know is how well and for how long. Another thing that concerns us (re: more fear) is if we pursue this treatment (DES), it will require radiation to my chest to avoid gynecomastia (think man boobs or ‘moobs’). It’s only a one time shot of radiation, but it’s still radiation. We must focus on the fact that there have been a lot of good results with this treatment. That is encouraging.

If we decide to pursue a clinical trial, I’ll have three more weeks when I have to remain off one aspect of my past treatment regime. This is sure to cause my PSA to go even higher. This thought is very concerning as well, again with the fear. The clinical trial is not looking too promising. We might even have a final answer later today. It is going to require some travel, but hopefully just three trips over a month’s time.

It is my burden, but it’s also hers and his. We will get through this together. So after a brief period of self pity and being somewhat consumed by the fear, I am moving on to more positive thoughts, feeling and attitudes. It’s not the final round in this fight, more like the 10th and I just got knocked down, but not knocked out!

One Thousand Eight Hundred and Forty Six Days

Time for a post that is a bit more reflective, if I can muster the emotion, the strength, to dig deep and find the courage to share.

In one sense, the last five years are a blur. I can remember bits and pieces, but lately as I go back and review some of my early blog posts, I find myself emotionally drained. At times perhaps I suffer from a little bit of denial. I really don’t think this is a bad thing, the denial. What other choice do I have? Do I focus on this really lousy diagnosis? Not a chance, that’s just not me.

On the other hand, during this review my mind is flooded with the memories, both good and bad, from the past five years. The memories are for the most part good ones. The human mind is a funny, tricky thing.

So today I’m driving to work, my drive is five miles, straight as an arrow south to north. As I leave our subdivision a small flock of ducks catches my eye. Like me they are headed north. I interpret this as a true sign of spring. As I cross each major intersection more and more birds join the flock. As a group they remain above me, growing and growing as we head north. By the time I reached my turn the flock must have reached a thousand. It was a good sign.

So you must be wondering where the heck I am going with this? The flock represented the Prostate Cancer community.We keep growing and growing, unfortunately. Like the interworkings of the flock, the lead bird is ever changing. There is no full time leader.

I know, a little deep, a bit silly, but sometimes I can be deep and silly!

Time keeps on slippin….

Some times days go by, fly by, and I just plain forget about posting here.

First, my dad is great. He was sent home from the hospital in less than 48 hours. He still has to wait for a few test results, but it initially looks promising.
Another milestone slipped by over the weekend. February 21, 2005
Ironic that the title is ‘Without Comment” and I haven’t really shut up about
it for five years!
We already had received the official news back from the doctor on February 11th. This was confirmation ofthe severity, the grave totality of the situation. If you read the post you might get a glimpse of what I believed has gotten me this far and provides me the strength to continue this battle day after day.
That first weekend was filled with faith, love of family and friends which in turn provided the hope required to win the battle. I refer to those words so often, but those words mean something.

They are far more than just words that I type into my computer.
Five years…so many wonderful memories, so many new friendships, so much more to look forward to in the years ahead. February 21, 2005 was truly the bottom. I wonder what’s next?

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!!!