Tuesday, August 14, 2018

August 14, 2018 - NAD Man to Remission Man

So what should I call myself now?  I was “No Active Disease (NAD) Man” in June.  At about the time that I wrote my last post, I received “PSA undetectable and no radiographic disease so we can say cancer is in remission!” from my doctor.  Am I “Remission Man”?  Perhaps for the time-being I’ll take that name!  It is certainly much better than “Chemo Man”, where I started.

In my last post I said that I was going to have a DEXA bone scan for osteoporosis, thanks to the possible side effect of taking Lupron, the hormone-blocker.  It took my persistent doctor at least twice to figure out how to code the DEXA scan so my insurance would cover it.  Apparently prostate cancer is not enough—the code must have had to point to signs of it or a strong propensity for those without testosterone to get osteoporosis.  The latter doesn’t seem to be a secret, as demonstrated by the technician who performed the scan.  As I went through the waiting room full of women (not one man) the tech asked me what brought me there.  I said the word “Lupron” and she said, “Ohhh, I heard about that…”.

Anyway, I had the scan on July 16th.  I haven’t received the official results but my doctor wrote “The scan looks at the bone density of the lumbar spine and left/right femur and compares against age-expected bone density. While the lumbar spine shows mild bone thinning, the femurs do meet criteria for osteoporosis.”  Great!  The good news is the “mild bone thinning in the spine” which means I am still 6’1” tall.  This also means slightly less risk of bone breakage since my femurs are generally strong.  However, it also means I need to commence on a more active attack on the osteoporosis.

The doctor went on to say, “It is good we are aware of this as there are several proactive things we can do to improve the bone density. Weight bearing exercise, calcium/vitamin D (I believe you are already doing this).

I am taking vitamin D3 at a rate of 5000 IU per day but I have not been taking Calcium, other than the small amount in a multivitamin.  I recently learned that in order for the D to be absorbed, it is best that I also take vitamin K2.  So, now I am taking D3, K2, and Calcium in addition  to the other 20 or so supplement pills.  I am taking between 5000 IU and 10,000 IU of D3, 90-180 mcg of K3, and 1800 mcg of Calcium.  The reason for the range is that I am torn.  The amount of D drives the other amounts.  5000 IU is recommended, but I have had friends that reversed their osteoporosis with higher doses of D3. I may take the higher dose for a month and get my D level tested.  I also heard that oatmeal (my regular breakfast) negates the effect of vitamin D, so I have to take the D at night.

I am also taking a dose of CBD oil at night.  I am taking CBD because some people have experienced stronger bones after taking CBD.  I figure I would try it and see.  I am actually taking a 30:1 concentration of CBD to THC.  THC is the stuff that can make you high, but at this concentration it doesn’t.  I feel nothing when I take it.  I was talked into the low level THC by the argument that the small amount of THC can help in the treatment.  I do think there is suppression of good news about both CBD and THC, which is an added reason to take it.  It was $90 for a 30-day supply.  Subsequently I have found it for less.

For the exercise, I am also doing between 30 and 60 squats plus other upper body weight-bearing exercises per day.  I can and should do more, but I really dislike exercising.

I also am having my DNA analyzed.  I am eligible for insurance coverage because of my extensive family history of cancer (dad, mother, brother, sister, and cousins).  At first I had thought that this would lead to true personalized medicine, but for that I would need the DNA of the cancer itself to be analyzed.  Of course with my cancer “undetected” this is not possible.  I am getting my DNA analyzed for three reasons:

1. Do I have the proclivity toward any other cancers in addition to prostate cancer?
2. Should other family members get their DNA analyzed because I have particular markers?
3. Do I have particular markers that might make me more likely to respond to specialized future treatments?

I gave the blood to Ambry Genetics and just today heard that all of the 32 markers they checked came out negative.  I guess this is good.  It means I don’t have a genetic proclivity toward any other cancer.  It also decreases the odds that other family members could have other markers.  In fact the geneticist said that I should talk my sister and niece on brother’s side into having their  DNA analyzed.  This is apparently because ovarian cancer in families is very rare.  I don’t think I am going to talk either into this in any case.

I see my oncologist in early September.  That is when I am due for my next Lupron shot.  I am going to talk to him about the possibility of skipping one dose.  It may be risky but taking the Lupron is having these less-than-desirable side effects.  We’ll see what he says, although I do see him as wanting to stick with the prescribed program, which says to take Lupron for the rest of my life.  This is to prevent the possibility that any cancer I may have may mutate into the androgen deprivation resistant form (also with the cute name “Castrate Resistant Prostate Cancer”).  We don’t want that because it is essentially untreatable in the long run.  The strategy is to delay until they find something that stops “CRPCa”.

Onward and upward to the next month!

Remission Man