Round One to Me
I had the most terrible experience while I was there.
For my CT scan, the nice people put me into a room and told me to change clothes. I put my shirt and pants into the little paper bag and realized I needed to send Darling a text to let her know where I went, since she went wandering through the complex (we expected a five hour wait in the waiting room). I dug into the bag and pulled my shirt out. I removed my glasses from my shirt pocket and put them on my leg, then grabbed my phone and repacked the bag.
I lost my glasses. They were totally gone. I moved the chair, unpacked the bag, checked all my clothes. My glasses vanished. Not a huge problem, since they are just dollar store glasses, but they vanished!
Resigned to the loss of my glasses, I sat back down in my chair.
My glasses were on my face. I'm getting old.
~
Let's review.
Prostate cancer invaded my body, into both my lymph nodes and my bones. We learned just recently that I have what is considered "high volume" in my bones. Yeah, that's not a good thing.
My visit to the Doctor six weeks ago has the following recap:
Dr.C informed us that the "nadir" PSA, that low, low number, is a good prognosticator of my response to the cancer treatment. Oncology doctors group the nadir PSA into three groups: >4.0, 0.4-4.0, and less than 0.2. I fall into the latter group, which means that the "cancer has died in you" according to DrC.
The current plan is again to gather more information, which I approve. We need to gather "repeat scans at the time of maximum response" which is now. We will then proceed to determine the "potential ways to build on striking success we see so far."
There are two planned treatments in the immediate future.
The first is chemotherapy treatment, a set recipe of six doses once ever three weeks. The second is more hormonal treatment, though with a kinder, gentler series of medicine.
That would be great.
I detest the current Androgen Deprivation Therapy (ADT) which leaves me tired a lot with the classic hot flashes and physical problems.
I'm in pain quite a lot. My lower spine and my right leg ache often and sometimes intensely.
DrC did prescribe some pain meds for me. Yeah, those didn't really help.
Now let's review the results from the visit on Wednesday.
We saw pretty much what DrC predicted. One number concerning bone health improved, as he expected. My PSA climbed a bit, from 0.1 to 0.4. Compared to the 103 number in May, that's still fabulous.
We're looking at the same options he highlighted six weeks ago: a change in the medication for the ADT and one for chemotherapy.
He gave me some Ritilin to offset my fatigue. I started it yesterday, but today I'm jittery.
We'll talk to him about all these issues next Wednesday.
Here's the letter I sent him:
Dr. Corn,
Thanks for meeting with us today. It's all a lot to take in, so we feel continually confused.
We talked about the test results, which did not indicate any unexpected information.
You said you were pleased with the Alkaline Phosphatase results, dropping from 148 U/L on 9/7 to 87 U/L on 10/20/21. From the graph it was easy to see that the number dropped between the upper and lower limits, which is good stuff.
We concur with a little bit of concern over the PSA going from 0.1 ng/mL to 0.4 ng/mL in the same six week timespan. Though that is an increase, compared to the 103.2 ng/mL on 5/7/20, we're looking pretty good. You said we'll keep an eye on it.
We're sorry we couldn't see any of the pictures from the latest bone scan and CT. (I don't see them in the system either.) If we understood you today, the scans indicate that the soft tissue cancer mass has decreased since the last scan in June, and the bone scan showed the improvements you told us to expect.
We talked about the things that bother me the most, including memory issues, fatigue, dizziness, and my aching right femur and hip. You said those are expected side effects of the removal of testosterone from my system. That made me feel a little better. It's good to know it isn't all in my head.
Speaking of which, we mentioned my continuing migraines, but you indicated that those are likely not oncology related since I've had headaches for years and prostate cancer rarely migrates to the brain. For now, we have enough on the plate without worrying about my headaches.
Treatment Plan Going Forward
The way I understand our discussion, we really have four treatment paths:
1. No more treatment after this. That is the radical plan, but I'm not sure how that affects the lifespan estimate.
So the question for this option is what does a "no further treatment" give us? You stated the "average" lifespan for someone with my condition is about seven years. I understand it is a "best guess" and you probably hate to give that kind of information, but I'm a numbers guy, so numeric information helps me. I understand how the bell curve works. I'd like to aim for the upper end of the curve, but that's what we're doing with treatment right now anyway. So how does the "no further treatment" affect that number?
2. One of the two treatment options is the apalutamide as a T blocker for the cancer, which might give me back some quality of life.
I quit taking the bicalutamide after our visit on September 15th since we talked about it and you said I no longer needed it.
You are recommending apalutamide to block the T from feeding the cancer, but allow me to have some T in my system, which should alleviate some of my quality of life issues like the fatigue.
The fact sheet you gave us for the apalutamide indicates some serious side effects with the drug, so I have a couple questions on that. Firstly, it looks like this is the same family of drugs as the bicalutamide so can I expect the same kind of side effects? If so, the information is less scary. If not ...
Also, what is the return on investment with this treatment? Does it significantly add years to the estimated lifespan, or are we talking about months?
The Lupron is still in my system from the six month shot. How does that affect the timing of starting treatment with apalutamide if we go that route?
3. The second treatment option is the chemotherapy. I'll have to be honest, the side effects of that one scare the crap out of me. I know that they are not all likely, but ... wow. So the same question applies for the this as for the previous treatment: how does the treatment benefit me in terms of longevity? If we're talking about six shots, three weeks apart then that's about twenty weeks of potentially feeling bad. There must be some data that states you can get more than a half year extra lifespan from this.
4. Finally, do both treatments. Again, the same cost/benefit questions apply.
That's what I heard, and I guess I need some estimated numbers, best guess, to help me figure out where we go from here.
We picked up the Ritalin (methylphenidate hydrochloride) from the pharmacy this afternoon and I'll take the first one tomorrow. We should know by Monday whether it helps me significantly.
There is a trial for prostatectomy vs non for guys with my type of metastasized prostate cancer and you're looking into that. I don't know what benefit that gives me, and certainly am not a fan of the side effects of removing my prostate. I guess it depends on whether the long-term results justify the surgery. You're gathering data for us.
We never discussed immunotherapy or genetic testing for options along those lines. We totally forgot. Does any of the latest blood work go toward that kind of testing?
Again, thanks for your time and we look forward to hearing from you.
vince and marcella
Wow, if you read this far, you're a very dedicated person and I thank you for your interest.
Be kind. Be brave. Believe.
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