I had a visit with Dr. Sunkara's team today, and it reinforced my sense of urgency to find (and start!) another treatment plan very soon.
My PSA has jumped to 659. That doesn't have an impact on me by itself -- it just means I have a lot of cancer floating around my system. What worries me is my low (and dropping) red blood cell and platelet counts. I'm coming in to the doctor's office to have them tested every week or so; when they drop below a specified level, I'll need to get a blood transfusion to boost my red blood cells. This will actually be great, as I am starting to feel very weak in the afternoons because of the anemia.
I definitely want my next treatment to get started before I get stuck in some hospital hooked up to a machine. As long as I'm ambulatory and independent, there are things I can do to put the cancer in check.
Showing posts with label tests. Show all posts
Showing posts with label tests. Show all posts
Monday, March 2, 2009
Tuesday, January 20, 2009
reality check with Dr. Swift
(black dots are tumors; click picture to enlarge)
I had a bracing talk this morning with Dr. Swift, my radiation oncologist (I'm not getting any radiation, but he's the resident prostate cancer expert at Alta Bates).
When I got a copy of the film at the bone scan last Tuesday, I knew it was bad...but I could only stand looking at it for a little while and I filed it away. My coping mechanism was to immediately dive into researching what my next treatment would be (a process I actually enjoy -- it gives me hope, a sense that possibilities actually do exist out there, and it's something over which I exercise partial control).
Talking to Dr. Swift today reminded me in stark terms exactly what I'm facing. The worst metastases are in the pelvis, which have developed dramatically since my last scan six months ago. I also have many, many new metastases -- mostly on vertebrae, but also a few on my ribs and scapula.
So where do things go from here if the cancer keeps progressing? The bones where the metastases are will become weaker and weaker, and eventually break. A break in my pelvis means pain, six months of being bedridden, and a big, big hit to my mental state. A break in one of my vertebrae might mean partial or complete paralysis.
Needless to say, this is a HUGE motivator for me to find a more effective treatment than what I've been on. It's also a giant challenge not to think about dreadful possibilities all the time. This is the strongest challenge to my cheerfulness and equilibrium that I think I have ever encountered. Fortunately I'm still upbeat most days -- going to the ashram for chanting or meditation really helps, and Liz is being a peach!
Monday, October 20, 2008
Ruh-roh!
First of all, there *is* a Plan B. My oncologist has put me on ketoconazole (the main ingredient of dandruff shampoo!), which supposedly has a similar effect to Lupron and works for a while even after the Lupron has become ineffective.
Secondly, I am *so* happy to say goodbye to the Lupron. Other than the body blow to my late, lamented libido, it's also been responsible for hot flashes, mental confusion, and occasionally pretty severe depression. Not gonna miss any of that, uh-uh!
Lastly, I'm not as nervous about high PSA scores as I used to be. I've been told that guys can often live for five years with scores this high, as the free-floating PSA doesn't map directly into physical deterioration. And I'm undertaking other, completely unrelated measures (the ayurvedic work) to build up my health -- which is a completely different paradigm than "battling the cancer".
Friday, May 16, 2008
Tale of Two Graphs
I just got my latest PSA score, and it's 9.4. Not good at all, and it's headed in the wrong direction (it was 7.8 last month.) "Normal" scores are below 4 (some people like them to be even lower), and anything above 10 is bad, bad, bad. Astronomical scores in the hundreds like I had last year are an indication that the cancer is metastasizing and out of control.
To get some perspective on where I stand, I decided to make two graphs of my PSA. (you can click on the pictures below to enlarge them) The first graph is every PSA reading since I was first diagnosed last July -- and it shows the remarkable plunge in my PSA score since starting both my supplement therapy in August and my treatment with Dr. Thaller in September.
The 2nd graph is a close-up of every PSA reading since last August. This is the territory I need to manage, and I really want to stay below 10 on the chart.
What this tells me is that I need to make some adjustments in my treatment -- I'm not currently doing enough to battle the cancer. More on the specifics of what I have in mind in a subsequent post.
To get some perspective on where I stand, I decided to make two graphs of my PSA. (you can click on the pictures below to enlarge them) The first graph is every PSA reading since I was first diagnosed last July -- and it shows the remarkable plunge in my PSA score since starting both my supplement therapy in August and my treatment with Dr. Thaller in September.
The 2nd graph is a close-up of every PSA reading since last August. This is the territory I need to manage, and I really want to stay below 10 on the chart.
What this tells me is that I need to make some adjustments in my treatment -- I'm not currently doing enough to battle the cancer. More on the specifics of what I have in mind in a subsequent post.
Thursday, March 6, 2008
Dang!
I just got a call from Dr. Shimkus' office (my oncologist). I have to come in *tomorrow* for another hormone blockage shot (Trelstar) -- my PSA has gone up to 5.8.
Dang, dang, dang!
Last month it was 2.6. Dr. Shimkus said I would need to go back on the Trelstar if my PSA rose above 4.0. This is much higher than that.
Another important measure of prostate cancer is "doubling time" -- that is, how long it takes for your PSA to double. In my case my PSA *more* than doubled in just 1 month -- not a very good sign. The increased PSA is a direct indication that there's increased cancer activity in my prostate. (And especially given my recent widespread bone metastases, it might extend even further than that, although I'm fervently hoping that this isn't the case!)
In the larger scheme of things, a 5.8 PSA is still manageable -- doctors often tell their patients not to worry too much until it gets over 10. And after all, in the first couple of months that I was diagnosed, my PSA was as high as 222.
But still.
Dang.
Dang, dang, dang!
Last month it was 2.6. Dr. Shimkus said I would need to go back on the Trelstar if my PSA rose above 4.0. This is much higher than that.
Another important measure of prostate cancer is "doubling time" -- that is, how long it takes for your PSA to double. In my case my PSA *more* than doubled in just 1 month -- not a very good sign. The increased PSA is a direct indication that there's increased cancer activity in my prostate. (And especially given my recent widespread bone metastases, it might extend even further than that, although I'm fervently hoping that this isn't the case!)
In the larger scheme of things, a 5.8 PSA is still manageable -- doctors often tell their patients not to worry too much until it gets over 10. And after all, in the first couple of months that I was diagnosed, my PSA was as high as 222.
But still.
Dang.
Tuesday, January 29, 2008
On the Right Track!
Good news from the oncologist today. My bone scan from a couple of weeks ago came back, and most of the bone metastases have retreated considerably! My normally reserved oncologist broke into a rare use of positive phrases: "it's remarkable -- we almost never see the metastases diminish."
Also, at the end of December my PSA had declined again, to 1.6 (*almost* normal!)
Apparently most of the time, the "standard" treatment I'm on (the hormone blockage therapy that zeroes out my testosterone) merely slows the metastases down. (Or in the best case, brings it to a halt). The bone scan instead shows that the spots have almost disappeared -- the doctor says that some of what's left is evidence of arthritis rather than cancer (I'll take that choice any day!)
This confirms what the technician said a couple of weeks ago when she printed out the film of my scan and exclaimed -- 'wow, we never see that happen!"
Apparently all the effort (and expense) that we went to to get to Germany for the treatments by Dr. Thaller have paid off handsomely -- what he did had an amazing effect! Thanks to all of you who contributed for making this possible!
Now comes the hard part, which is keeping these gains intact, and continuing to work on the cancer that remains. Today is the start of my enzyme therapy treatment, which is a *lot* more labor-intensive, but reportedly very effective! (More on that in a later post.)
Also, at the end of December my PSA had declined again, to 1.6 (*almost* normal!)
Apparently most of the time, the "standard" treatment I'm on (the hormone blockage therapy that zeroes out my testosterone) merely slows the metastases down. (Or in the best case, brings it to a halt). The bone scan instead shows that the spots have almost disappeared -- the doctor says that some of what's left is evidence of arthritis rather than cancer (I'll take that choice any day!)
This confirms what the technician said a couple of weeks ago when she printed out the film of my scan and exclaimed -- 'wow, we never see that happen!"
Apparently all the effort (and expense) that we went to to get to Germany for the treatments by Dr. Thaller have paid off handsomely -- what he did had an amazing effect! Thanks to all of you who contributed for making this possible!
Now comes the hard part, which is keeping these gains intact, and continuing to work on the cancer that remains. Today is the start of my enzyme therapy treatment, which is a *lot* more labor-intensive, but reportedly very effective! (More on that in a later post.)
Saturday, October 6, 2007
Back Home Again...Sheesh!
Today I go for my monthly visit to Lone Star Oncology, where I get an IV drip of Zometa (a bisphosphonate that will strengthen my bones, which are weakened both by the metastasizing prostate cancer, and the hormone therapy that I'm on).
I also talk with Dr. Shimkus about the results from my CT scan last month. (amazingly, just like with my bone scan a couple of months ago, there are *no visuals* provided with this scan -- even though the test itself consists of taking a picture! All that's provided is a very technical description of the my internal situation, which someone has painstakingly constructed from the picture itself. The visual scan (which would clearly show how serious a pattern of cancer is, and already exists in a file somewhere) would be an extra charge! My doctor in Germany is astounded at this practice and considers it unethical.)
Dr. Shimkus appears to be a bit surprised that I am going to change my hormone therapy by substituting the herbal compound Prostasol* for the Eligard shot that I am due to receive again this month. He gently tries to dissuade me from making the switch, but I am insistent (it will have fewer side effects -- specifically, less night sweating).
I ask a few more questions of him (such as, are there any therapies that I should be considering that I'm not on now?), and at some point after our meeting passes the 15-minute point, he appears to become a little impatient and tells me point blank: "You know, you are *always* going to be dealing with these bone metastases."
I'm slightly taken aback by this, but it isn't until later that I process what he was trying to convey to me: "hey, you've got inoperable cancer, there's nothing we can do about it -- get used to it!!"
Now don't get me wrong, I'm not in denial: I know I've got very serious advanced metastatic prostate cancer, and "statistically" my prognosis is poor. But I also know that there are *many* examples of people who have gone into remission from where I stand, and that there are also many fruitful lines of treatment that lie completely outside what the official "statistics" measure. So I refuse to be categorized by any kind of "get used to it!" diagnosis.
Even beyond this, the reason I get angry at attitudes like this is that there's simply no need for doctors to discourage their patients with this kind of framing. Take the example of Dr. Thaller: his stated *intention* to me is that "the tumor must vanish!" He of course gives me the necessary caveats that he can guarantee no such thing. But I walk away from that conversation with confidence, and a knowledge that my caregiver is fighting for me.
Conversely, when someone tells me to "get used to it", I'm discouraged, and it tells me only that my doctor wants to *manage* me. It honestly takes me four or five days to readjust my attitude after this encounter.
Sadly, I see this attitude everywhere in the States. Even the billboards for Proposition 15 (a Lance Armstrong-backed cancer research initiative) feature a bald cancer patient. That doesn't tell me that "we intend to cure cancer" -- that tells me that "all cancer patients look like death warmed over because we give them chemotherapy."
Don't vote for Proposition 15 -- it will just give more money to the same pharmaceutical and insurance giants that already poison people with chemotherapy and radiation.
------
* I'll be taking the Dutch version of Prostasol -- the American version was found to be tainted with estrogen.
I also talk with Dr. Shimkus about the results from my CT scan last month. (amazingly, just like with my bone scan a couple of months ago, there are *no visuals* provided with this scan -- even though the test itself consists of taking a picture! All that's provided is a very technical description of the my internal situation, which someone has painstakingly constructed from the picture itself. The visual scan (which would clearly show how serious a pattern of cancer is, and already exists in a file somewhere) would be an extra charge! My doctor in Germany is astounded at this practice and considers it unethical.)
Dr. Shimkus appears to be a bit surprised that I am going to change my hormone therapy by substituting the herbal compound Prostasol* for the Eligard shot that I am due to receive again this month. He gently tries to dissuade me from making the switch, but I am insistent (it will have fewer side effects -- specifically, less night sweating).
I ask a few more questions of him (such as, are there any therapies that I should be considering that I'm not on now?), and at some point after our meeting passes the 15-minute point, he appears to become a little impatient and tells me point blank: "You know, you are *always* going to be dealing with these bone metastases."
I'm slightly taken aback by this, but it isn't until later that I process what he was trying to convey to me: "hey, you've got inoperable cancer, there's nothing we can do about it -- get used to it!!"
Now don't get me wrong, I'm not in denial: I know I've got very serious advanced metastatic prostate cancer, and "statistically" my prognosis is poor. But I also know that there are *many* examples of people who have gone into remission from where I stand, and that there are also many fruitful lines of treatment that lie completely outside what the official "statistics" measure. So I refuse to be categorized by any kind of "get used to it!" diagnosis.
Even beyond this, the reason I get angry at attitudes like this is that there's simply no need for doctors to discourage their patients with this kind of framing. Take the example of Dr. Thaller: his stated *intention* to me is that "the tumor must vanish!" He of course gives me the necessary caveats that he can guarantee no such thing. But I walk away from that conversation with confidence, and a knowledge that my caregiver is fighting for me.
Conversely, when someone tells me to "get used to it", I'm discouraged, and it tells me only that my doctor wants to *manage* me. It honestly takes me four or five days to readjust my attitude after this encounter.
Sadly, I see this attitude everywhere in the States. Even the billboards for Proposition 15 (a Lance Armstrong-backed cancer research initiative) feature a bald cancer patient. That doesn't tell me that "we intend to cure cancer" -- that tells me that "all cancer patients look like death warmed over because we give them chemotherapy."
Don't vote for Proposition 15 -- it will just give more money to the same pharmaceutical and insurance giants that already poison people with chemotherapy and radiation.
------
* I'll be taking the Dutch version of Prostasol -- the American version was found to be tainted with estrogen.
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