October 23, 2017 – What’s Happening Inside Me?

I did see my oncologist on 8/31 as promised.  I also had my Lupron (androgen deprivation or hormone blocker) shot right after the appointment.  My oncologist said I looked good and my labs were also generally good.  My PSA is still at 0.03 but my testosterone was higher than he would have liked.  [That just shows that you can’t keep the old boy down, even with hormone-blockers.] 

My oncologist is operating under the theory that testosterone feeds prostate cancer.  Hence he would like to see it below 25.  On 8/29 mine was 53.  This could have been because I had chosen to get the Lupron shot two weeks after the 90 day mark.  It could also be that some of the supplements have had the effect of raising my testosterone level.  BTW 53 is pretty low, since men my age usually have around 278 ng/dl.  I used to have 450+.  Those were the good old days.

I have gotten back into my exercise program, doing push-ups at night and going to the gym to do strength exercises.  I think this is helping my stamina and posture.  I don’t go overboard because I am afraid to end up like Arnold Schwarzenegger.

I have become more active in UsToo, an online organization of men fighting prostate cancer.  I have learned quite a bit just by hearing other stories.  I also learned about a doctor at the Mayo Clinic in Rochester who is going for the cure in patients with Advanced Stage IV Metastatic Prostate Cancer like me.  More on Dr. Kwon later.

Palliative vs. Curative.  Let me explain that my treatment and the treatment of practically all patients at my stage of the disease is palliative, which means that the doctors try to keep it at bay with the expectation that it can’t be beaten in the long run.  Curative is treatment designed to rid the body of the cancer once and for all.  The problem is that curative treatment still has relatively low win odds and the patients often go through more aggressive, invasive treatments while the doctors attempt to kill all of the cancer.

Do metastases replicate the same cancer throughout the body?  In the past it was thought that this was the case.  If so, if one is able to kill one cancer, it would be possible to kill them all.  Unfortunately perfect replication is not the case.  As cancers spread, they tend to mutate into different forms.  As a result, either draconian treatments have to be given to kill everything that grows (chemotherapy), or multiple different treatments are called for to get rid of all of the now different cancers.

Dr. Kwon.  Going with a curative approach Dr. Eugene Kwon at Mayo uses a different type of PET scan to find tumors.  It is a C11 Choline Pet scan.  My hospital doesn’t do C11 PET scans.  Dr. Kwon says C11 scans are more accurate in finding small tumors.  As I understand his process, once he sees that there aren’t too many tumors, he then tries to gather information about each tumor, either by biopsies or other means.  He then develops treatment plans for every tumor.  The treatment may be radiation, chemo, or anything else.  He has had some real successes with this multi-treatment approach, but he admits to having failures as well.

The question is whether I should subject myself to Mayo.  At one point I was ready to jump on a plane, but I’m a little reluctant now, in small part because of Kathe’s and our schedule and in greater part because I am doing pretty well now.  Of course catching this early as possible would be best.  At the same time I don’t particularly want to find out that I am not a candidate.  In any case I have ordered copies of my reports and scans to be ready to go.

My schedule.  I have been fortunate enough to have been nominated and then chosen to be on a team that will be evaluating research proposals applying for grants from the Department of Defense in the area of prostate cancer.  It is called the DoD Prostate Cancer Research Panel - Cell Biology.  I am the lay consumer on the panel.  I will be going to Reston, VA in the end of December.  It will be interesting being a lay panel member surrounded by renowned medical scientists.  I have been included because the DoD wants to make sure that the grant choices take into account the patients who might be recipients of the research.  I’ll have to write my critique of each of the applications.

Sugar feed cancer?  While I was corresponding with several others with the same cancer as I have, I mentioned my avoidance of sugar and carbs as part of my dealing with my disease.  I was pointed to an article on the Memorial Sloan Kettering website that said that it is not true that sugar feeds cancer.  The article said that people have falsely concluded that because cancer attracts the glucose in the radioactive cocktail taken for PET scans, glucose must be what cancer thrives on.  Well, needless to say, I would like to believe this and eat some cookies that I have craved for a solid year, but based on all of my other reading I can’t accept this anywhere near 100%.  What MSK does say is that sugar and carbs lead to obesity and obesity in turn does seem to increase cancer growth.  I’m not gaining weight but I do think a low sugar, low carb diet is good for me, no matter what.

So, what is happening inside me?  This I truly want to know.  The doctors say that the only indicator of growth is PSA.  This makes me want to get a PSA test every few weeks, but my doctor and my insurance provider have something to say about this.  The other possible indicators are secondary effects of cancer in my bones.  As a result I am concerned with every ache and pain that it is the result of growing cancer.  My aches and pains don’t seem to be getting worse in general.  I do feel dull pain in my chest when I first lay down on my side, but this goes away.  This could be due to my exercise to some extent.  I also feel sharp pains different places in my legs from time to time, but this may be Lupron side effects.  Recently I was feeling a little dizzy and had a slight headache.  The headache could possibly be the cancer in my cranium, but the pain seems to have subsided.  The dizziness is likely due to the Lupron.  I’d like to get more PET scans, but I heard that the doctors are reluctant to do this because of that glucose attraction mentioned above.  Of course the cost might be the real reason.  It may just be true that there isn’t much of a change, but I want feedback to help me know if the diet, supplements, and exercise is helping stem the disease.  This lack of data is quite frustrating!

Les, Chemo Man