Dr V called Friday night with the results of my CT scan. That’s right, my doctor calls patients at home on a Friday night! His news was for the most part good.
1) No, the cancer has not spread to any organs.
2) The radiologist noted a new tumor in the T5/6 vertebrae. This was new compared to the CT scan from 12 months ago, but we were made aware of this new tumor when he communicated to me the results of my last bone scan, which was last month.
3) There are three areas with enlarged lymph nodes, two nodes above my prostate, two below and two in my neck. The largest being approximately 3cm or a little more than an inch, this was near my prostate. The other areas were smaller. He recommended for now we keep an eye on these and they should go down as we treat the disease in total. In other words, get my PSA down and these could go away as well.
This news is good in the sense it just eliminated one option and made my next treatment decision a choice of two Provenge (immunotherapy – vaccine) or Abiraterone (oral – pill). Both are going to require travel, the former to the east coast, the other to the west. I’ll wait and see how things evolve but there’s a little voice saying, ‘Go west, young man’.
The event resulted in 33 players who helped us to raise nearly $2,000!!
The action begins! The final table!
Steve, Mark and David Bruce 2nd Place, Brad 1st, Rob 3rd
Thanks to a friend Jeff for this video.
Stick with it, I liked the closing lyrics best.
Happy Thanksgiving to all…..
When first diagnosed with cancer we try to come to grips with ‘Now what’? “Now what” with my life, my treatments, my family, my career and so on. The trepidation of now what does not end with the initial diagnosis, it goes on and on. With every up and down, every good test result and every bad, your mind immediately returns to the constant questioning. Now what?
I know some of you may be saying that this is no different than life in general, it’s just human nature to question the future, to wonder what lies ahead. While I have no argument to counter, I do believe that it is much different for those of us with cancer.
My journey, though a tad short of six years, is a constant journey of questioning. Every four weeks I visit my doctor to be retested. The results of these tests never lead to peace in my mind or in my heart. If the numbers are good, I question ‘For how long?’. When the numbers are bad, like they were last Monday, I wonder ‘Now what?’. The very limited number of options I have continues to be a challenge and weighs heavy on my mind. There are three or four things I can do next, but none of them really provide substantial relief for my heart or mind.
I am not writing this from a place of depression, I’m actually in a great place mentally. I’m just trying to make a point so that when you see me, or talk to me and I say ‘Oh I’m doing fine’, it’s a little more complicated than that…actually it’s much more complicated. I try my best to remain hopeful. I just wish for a little while that I could get a reprieve from the ‘Now what”!
Ain’t got no trouble in my life
No foolish dream to make me cry
I’m never frightened or worried
You know I always get by.
I heat up
I cool down
Something gets in my way I go around it
Don’t let life get me down
Gonna take it the way that I found it
~~~~~~~~~~~~~~~~~~~~~~
Through all the ups and downs of this battle, the one thing, aside from the support of Mary, family and friends, that is a constant and that is music.
For you regulars you know my taste is all over the place. When I wrote this on Wednesday I had already listened to a variety consisting on amongst others; Peter Frampton, Frank Zappa, Jason Aldean, Kenny Chesney, Dave Brubeck and Keb Mo.
It’s the escape, the flood of memories, the highs, the lows, the smiles, the tears. I never learned to play an instrument, I wish I had. No regrets becasue not being able to play has not tempered my love for music.
For those of you who have not already signed the petition, please do so by clicking the links below. If you have already signed it, I thank you for your action, but ask you to please forward this email to family, friends, and anyone who might be interested in signing it.
Help me help the PCa community and sign the online petition NOW
David
The title is a frivolous attempt at humor, but it appears we are in another holding pattern.
With all of the information that continually bombards those of us dealing with PCa, it was good to hear the doctor from Boston say this today, “You have done a remarkable job of managing your case by not panicking and constantly switching protocols. You have managed to survive longer than the average, longer than most,and in very good overall health!”. This is not the first time we have heard this. We also heard it when we visited MD Anderson in April 2009. It tends to make me puff out my chest when two of perhaps the top five Prostate Cancer researchers in the country reaffirm that we have made the right decisions throughout my treatment process. Long term, things are bad, but they could always be worse.
After reviewing my chart and discussing my case for 15-20 minutes, the doctor informed us that I am not currently a candidate for XL 184 (A requirement for the trial is that lymph node and/or organ involvement would need to be present in addition to the bone metastasis). Believe it or not, I was not discouraged, mostly because of the doctor’s words and presence. He was unbelievably gracious and supportive. He encouraged us to stay in touch and invited us to confer with him again before we make any treatment changes in the future. He also reminded us that clinical trials change and my condition might change as well.
I obviously am not a doctor, but my experience with this journey tells me this, because my treatment options are limited, I have to get the most out of each treatment. When making the decision regarding when it is the best time to alter treatments, I believe it is a combination of considering quality medical advice, PSA doubling times, scan results the patient’s overall health and how he is feeling and then following your personal instincts. That has been our approach, and so far, so good!
With XL 184, we were just trying to line up another option. XL 184 is targeted directly to the bone tumors, which peaked our interest in this relatively new treatment option. When the time comes to choose the next treatment regimen, we plan to have two or three options lined up, Provenge, Abiraterone, or maybe this newer drug XL 184. It is truly a luxury for an advanced prostate cancer patient to have treatment options after being diagnosed almost 6 years ago.
The good news, and this is sometimes hard for me convey in words, is that unlike when I started this journey,there are more options. Five years ago my next step would have been to try chemotherapy again. Since it didn’t work as well as we had hoped the first time, the chances of it working a second time are not very good. Now, in late 2010, I find myself with three potential treatments. It will be a difficult decision, but it won’t have to be made until sometime in the future. Once again I find myself sleeping well and remaining encouraged that in the midst of my chaotic life, things are very encouraging!
Friday was both my monthly appointment with my oncologist and a periodic bone scan. This translated into an entire day at the cancer center. We left the house a little before nine and we didn’t get back home until nearly six.
It provided a chance for a lot of together time for Mary and I, as well as time for a lot of people watching. NOTE: I swear Lady Gaga walked into the Starbuck’s on the Country Club Plaza! We both got a laugh from this one! We also observed the typical jackass at the cancer center. This is the type of patient that visibly expresses their fear and concern through one of those permanent pissed off looks on their face. They follow that up with harsh words for the poor lady at check in and the cherry on top is when they make comments that clearly articulate the fact they certainly didn’t listen to a word of the instructions they were provided explaining the CT scan process. The prime example is the statement he rudely yelled at the admin person behind the desk, “No I haven’t received any liquids to drink, I’m here for a CAT scan, why would I have to drink anything?”. OK Einstein, I’m going to speak real slow so you can follow along…..you must drink the liquid in order for the scan to capture the pictures of your insides!
Sorry, but sometimes rude, ignorant people just get to me. Back to the matter at hand, my status update….
Every time I have a bone scan Mary patiently waits in the reception area and when I come out she asks me ‘what did you see? How did it look?’ Usually there is not much to report, and there didn’t seem to be this time either. However, after having radiation treatments back in June, I had expected much less visible activity on the monitor than I began to see as the scan was about half way over. There was a clearly visible spot on one of my hips. I’m not sure that it is more or less than March, but as I said, it was more than I expected to see.
Dr. V then provided this update; my hips and legs are ‘stable’ when compared to the last scan in March. I was hoping they were better after having radiation treatments in June but stable beats the alternative! My PSA however was at 35.08, up from 28.69 last month. Not too much of an increase, but not lower.
We spent considerable time discussing a new trial that was recommended by Dr. Simons of the Prostate Cancer Foundation. When I was in Washington, DC he mentioned that I should look into the trial and discuss it with my local Oncologist. There are three sites he recommended; San Francisco, Ann Arbor and Boston. At this point we are leaning towards Boston and hope to connect with the doctor there this week. Dr. Simons was kind enough to provide us with the contact information for all three centers. We have selected Boston and have sent an email requesting to be considered for the current trial. The drug is called ‘XL 184’ and is specifically being used to target cancers that have metastasized in the bone.
I’ll post again as soon as we talk with the doctor from Boston.
