Monday, March 8, 2021

March 6, 2021 – End of COVID Year

Yes, it is the end of the first year that we knew about COVID, but of course it hasn’t gone away yet.  I left you last November with a rising PSA and a desire to get a PSMA PET scan to be sure that the cancer hasn’t run amok. 

I did get an Axumin PET scan at Memorial Hospital in Savannah.  It turns out that my hospital, MUSC in Charleston, does perform Axumin scans, but I couldn’t schedule a scan before my next appointment there.  Memorial Hospital was glad to oblige.  The results were essentially the same as the results from the Axumin scan of 2018 in San Diego—no new growth detected. Given what I learned at the PSMA/PET seminar about sensitivity, I shouldn’t be surprised. My PSA is now 0.20, up from 0.15 in November. This is not enough to cause any major concern. 

What To Do Next

However, the increase of PSA starts to raise the question of when I should consider a change in treatment.  There have been studies (e.g. the ARCHES trial) that show a reduction in the risk of radiographic progression from the use of Abiraterone or Enzalutamide with Androgen Deprivation Therapy (ADT) AKA Lupron versus ADT alone.  If this is the case, at what point should I be taking one of these either with or without Lupron?  My doctor continues to say it isn’t time; that there are only so many bullets to shoot at the progressing hormone-insensitive cancer and we aren’t ready to use them.  He also hinted that the side effects may impact my quality of life.  Impact on quality of life makes sense, even though the studies showed that with Enzalutamide the side effects were minimal.  Note:  Taking either Abiraterone or Enzalutamide will cost me $11,000-$15,000/year out of picket.

Cabazitaxil is another drug that is used to treat ADT resistant cancer.  It appears to yield a better result than ADT alone.  From my reading it appears to be more like Docetaxel, my chemo drug although the studies say that its side effects are comparable to ADT which, as I have described in the past, are not a walk in the park.

Other “bullets” are immune treatments, genetic treatments, radiation using PSMA to target the metastases, and focused ultrasound to also target the metastases.  Of course some of these treatments require the ability to “see” the cancer with radiographic scans or to capture cancer cells floating in the blood stream, both of which won’t work with me in my current state of the disease.  Hence my doctor is probably right in saying we aren’t ready to try anything else yet.

I’m going to look for the very latest standard of care charts to help me sort this out.

Diet

I have been having great difficulty with bowel movements—mainly hard stools.  I have tried stool softeners without impact.  I don’t think I drink enough water but drinking water has its side effects too.  Going to the bathroom every 60 minutes or even more often is not fun.  I changed from 100% Bran cereal to Fiber One which helped a little.  Both of my doctors tell me I need to eat some of the things I’ve been avoiding because of their carb content, such as beans and darkly colored vegetables and don’t worry so much about carbs in these more complex foods.  So I have been doing just that plus the water.  I’m also cutting back on artificial sweeteners and eating an occasional apple, strawberry, etc. along with drinking more water.  This has helped.  We will now see what if anything it does to my PSA.

COVID

I have had both Pfizer vaccine doses and I am waiting until April first for my wife to have her second Moderna dose.  Within a couple of weeks of 4/1, we will loosen our own travel restrictions (no travel) a little and maybe get back a little of what we have lost this past year.  I hope anyone reading this will have the same opportunity.

Later…

Thursday, November 26, 2020

November 19, 2020 - The COVID Year

Well, the February checkup went okay.  My testosterone level went back down below 30 and my PSA went up to .08.  Since then my PSA has gone up to .10 then .15 each of the remaining quarters.  Of course I was hoping for less, but I am not in a state of panic yet.  I guess I won’t be going off Lupron for the foreseeable future. 

My diet has suffered thanks to COVID, but I also have some new rules on exercising thanks to Kathe. 

Pandemic

Right after I wrote my last blog entry, we started to learn about the coronavirus.  We were scheduled to go on a cruise in early March.  We decided to take our chances when we heard the cruise line was taking precautions.  We were screened verbally, our temperatures were taken before boarding and were told to be very careful about hand washing, getting close to people, etc.  The cruise line and most passengers were taking it seriously.  We were on board when the president had his first major press conference showing his reaction to the virus (that it was like the flu and was totally under control).  I immediately knew the country was in trouble.  I was expecting the more typical reaction of past presidents which would have been throwing all available resources at this serious potential public health problem.  We left the ship on March 15th after cruising the Caribbean, expecting some screening at Customs and Immigration.  There was no screening whatsoever.  We headed home from Ft. Lauderdale, stopping at Costco on the way wearing our masks.  There was an armed guard at the door and people were social distancing.  There was no toilet paper!

We totally isolated ourselves for the next two weeks.  Since then have gone out no more than twice per week to pick up supplies.  In the early days we did curbside pickups and then, out of frustration because the pickers couldn’t read our minds for things like substitutions, I have been going off-hours to Walmart to do the shopping while always wearing a mask. It has been like that for the past 7 months.  We have had very occasional outdoor social distance gatherings with the neighbors we see as treating this seriously, while avoiding those that seem to think they are invincible.  We do walk the dog regularly.  We now only have one dog, having lost our Winky in September to what we think was a stroke.

In April I had some congestion, so I had a COVID test.  It was negative, so I chalked it up to allergies. That said, I have a belief that one of the things we always take when we think we might be exposed to people with colds or flu has given us a small level of protection against the virus.  This is Grapefruit Seed Extract (GSE) which has properties that help fortify the immune system.  We take 10 drops in water once or twice per day.  We do this especially when we travel.  As a result we seldom get the dreaded “travel cold”.  You might want to check this out.

Diet and Exercise

With spending so much time inside it has been tough to stay on the no sugar/low carb diet.  I crave more snacks than normal and there is so little I can eat that is low carb.  I end up eating way too much containing sugar substitutes and way too many processed foods.  To make matters more challenging, Kathe is on a diet that is way too high in carbs, so I am fending for myself a lot. I know this has not helped my fight against rising PSA.  The good news for Kathe is that she has lost 15 pounds since the beginning of the year.

In past posts I had mentioned my chest pains that no one seemed to be able to explain, even after a stress test and other attempts at diagnosis.  I also had another problem with being “regular” as well. On a positive note, thanks to my primary care doctor, I took him up on a suggestion to eat 100% bran cereal instead of oatmeal for breakfast.  Both problems have seemed to go away, so I think it may have been a combination of constipation and heartburn that led to chest pains.  100% bran is great!

As for exercise, Kathe and I now have a rule that we can’t watch TV unless we have exercised that day.  This has forced both of us to exercise more.  I am doing weight-bearing exercises and stretching and she is doing aerobics.  I also walk the dog at least an hour per day.  We have had our days without TV, however.

UTI

In April I had an experience I had in the past.  I had a blockage in my urinary tract that was excruciatingly painful.  I tried to get an emergency appointment with a local urologist without success, then with my primary care doctor without success, so I ended up in the emergency room where thankfully I passed a clot.  This relieved the pressure and pain.  The diagnosis was a Urinary Tract Infection (UTI).  I started a course of Bactrim antibiotic with that stuff that turns urine into major staining agent (Cystex).  I finally got an appointment with my primary care doctor and he switched the Bactrim antibiotic with one he said was much stronger (levofloxacin).  After about 4 levofoxacin pills I very painfully pulled a tendon in my left arch while walking.  Only then did I read that insert that came with the levofloxacin .  It warned against tendon pulls!  I immediately stopped the levofloxacin and went back to Bactrim.

Anyway, I was hoping that my May PSA rise in May was connected to the UTI.  When my PSA went up in November, I ruled the UTI out.

What’s Next?

I have to get back to a better diet.  At the same time it is becoming time to get a new PET/CT scan to see if anything is happening with my metastases.  I know I have a low PSA, but because I have always had a low PSA, things could be happening in there.  I have been having some strange pains recently in my cranium and chest where I know I have mets.

I would like to get one of the new PSMA PET/CT scans that hasn’t been FDA approved.  My doctor back in San Diego told me he thought he could get me into UCLA to have a PSMA scan, but I don’t live there anymore and there is COVID to consider.  From my research the next closest available PSMA scan would be Johns Hopkins in Baltimore.  Boy, is it hard to find things like this out!

I can get another Axumin scan which I have found by attending a seminar is in the same sensitivity ballpark as PSMA.  Unfortunately my hospital in Charleston doesn’t do Axumin scans, but I am told that a more local hospital in Savannah does do them.  The challenge will be how to get the right contacts and the prescription to get the full body scan.  I am requesting the results of my last Axumin scan from San Diego in the meantime.  Note:  The most available PET/CT scan is far too insensitive to be of use to me.

In the Axumin seminar they said that the sensitivity is such that they can reliably find mets when the PSA is above .79 and even when it is as low as .50.  Mine is .15, so there is a question as to whether, even with my classically low PSA, it is too early to be able to see anything with the scan.  I really need to talk to an expert radiologist about this.  My last scan was done when I had a PSA of .03 and the result was “no new growth”.

That’s enough for now…

Sunday, January 26, 2020

January 26, 2020 – Back on Lupron and Prolia


Except for my chemo summary, I left you in April of last year after a 6-month hiatus from Lupron, ending with my returning to Lupron (ugh).  From April to July my PSA had gone from .70 down to .11, which made me happy that the cancer was still affected by Androgen Deprivation Therapy (hormone blocking).  By July any of the positive effects of being off of Lupron such as stirring of sexual feelings had disappeared.  That’s what no testosterone will do.  At the peak of the “no Lupron” period my testosterone level went up to 345.58 from the low double digits.  It was back to 18.79 in July.

In October my PSA was down to .07 and by November it was down to .06.

Osteoporosis

In July Dr. Lilly prescribed a DEXA scan to see where I stood with osteoporosis.  Unfortunately the osteoporosis had progressed, so in October in addition to my next Lupron shot I received my first three month Prolia® (denosumab) infusion.  From now on I have to be sensitive to any side effects from denosumab.  An example is Osteonecrosis of the Jaw (ONJ)—in other words dying jaw bone.  Great!  The drug description says I need to avoid invasive dental work or any type of dental infection.  I am also supposed to get plenty of Calcium and vitamin D.  I should also do aggressive weight-bearing exercises (more on this later).

On the site “Consumer Lab” I learned a lot about Calcium and vitamin D.  First, Calcium can only be absorbed in less than 500 mg doses and it also is better absorbed with Magnesium.  Also, if vitamin D levels in the blood are above 80 ng/ml the outcomes for prostate cancer patients have been worse than those with vitamin D deficiency.  The ideal range for D in the blood is something like 50-80 ng/ml.  I was tested in October to have 84.2 mg/ml, which is not bad. 

So I put the 1000 mg Calcium pills and the high dose D3 pills aside.  Thanks to Consumer Lab and a friend of Kathe’s who waxed eloquent on the reversal of her bone density loss due to “Bone Up”, I am now taking Bone Up capsules three times per day.  Each capsule has low dose Calcium (333 mg), Magnesium (116  mg), and D3 (333 i.u.).  I was taking more than 5000 i.u. doses of D3 per day.

Chest Pains

There is something else I haven’t talked about here because I have been writing them off as minor side effects of the cancer.  I have had these pains off and on for quite a while.  This is what happens:  (1) I am in bed and I turn over on my side, (2) I feel a dull chest pain in the middle of my chest,  (3) I can’t tell if my heart is beating harder but I feel a slight constriction, (4) the pain goes away within 15 seconds, (5) I have a hot flash and go back to sleep.

After saying something about it to Dr. Lilly he suggested that I might want to wear a heart monitor.  He could prescribe one, but because it is not his area getting Medicare to pay might be a problem.  I decided to take it up with my new primary care doctor, Dr. Sevastos at St. Joseph’s/Candler near home.  I did this and Dr. Sevastos (telling me he didn’t think it was heart), referred me to a cardiologist just in case.  I saw the cardiologist and he said he didn’t think it was heart either, but he prescribed a stress test.  I tried on the treadmill, but couldn’t get my heartbeat to go above 115.  So the cardiologist prescribed a “nuclear” test where they inject me with something that makes my heart beat fast and they take both an ECG and take images.  I was quite nervous about this.  I had to drive to Savannah (45 minutes) to have the test and I was brave to go alone.  Bottom line:  It was a piece of cake.  Sure, it took 4 hours, but I was uncomfortable for about 5 minutes.  I was a little claustrophobic under the imaging machine and I had a stomach ache that was dealt with by drinking caffeine.  The results were that they didn’t see anything wrong with my heart and in fact my heart made an above average showing.

So what is it?  My brother read somewhere that there is a nerve in the chest that when pressured, causes similar symptoms.  With my muscle loss due to the Lupron I am sure my insides are a little more exposed.  I do plan to read up on this.

Chitosan Trial

In November I entered a trial being conducted by Dr. Lilly.  It is to test the effects of taking 1500 mg of Chitosan twice per day.  Lab tests have shown that Chitosan, in addition to some weight loss advantages, may attack proteins that are behind the growth of some forms of cancer. As for side effects, I have noticed occasional stomach aches since Chitosan apparently interrupts part of the dietary cycle.  I haven’t noticed weight loss, but Kathe has been taking Chitosan hoping that it will help in weight loss.  The worse side effect is that it disrupts my supplement schedule since I can’t take anything two hours before and after taking Chitosan.  Every month after November I have had to make the 2 hour drive to have tests for Chitosan effects.  Next week I will see if Chitosan has had any effect on my prostate cancer.

This last dose of Lupron was a 4-month dose instead of 3-month.  This puts me out of synch with the Prolia and neither Dr. Lilly nor I are really sure that the dosage is correct for the last month.  I asked that the next time we go back to the 3-month dosage.

Exercise

Both for the cancer and for the osteoporosis, I should be exercising.  I have tried from time to time to do this, but I often come up with excuses not to do it.  I do walk the dogs multiple times per day for a total of an hour, but that is not weight bearing.  So Kathe, being the good coach established a rule for both of us:  No TV without exercising!!!  I haven’t watched much TV since.  <smile>  Actually, it has made me do a lot more exercising, not that the TV is actually worth it.

On February 3rd I go back for the next checkup.  Hold your breath until then to read the next in the saga.

Les

September 28, 2019 - My Chemo Story (Summary)


I was asked by several people to summarize my experience specifically with Chemo treatments and their effects.  This is my summary.  For those of you who have followed my blog, you already know most of what I am writing in this post, so I won't be upset if you skip this post and go to the next post which will be my first post in 2020.

My Chemo Story

I was first diagnosed with Advanced Stage IV Metastatic Prostate Cancer on Nov 11, 2016.  This preceded a 22 year history of fighting PCa starting with brachytherapy in 1996.  I have always been saddled with low PSA readings, so both a urologist nearing retirement and one just entering the field did not catch the move into the metastatic phase, so I lost several years to treat it.  My PSA has never been higher than 4 but the shortening doubling time leading up to 2.89 was the clue that my then new urologist needed to get me a PET scan. 

Being one who tends toward aggressive treatments for my illnesses, after a second identical opinion I decided with my oncologist to throw everything at it, including the standard protocol, diet change, and the taking of many supplements.  The medical protocol said that I should take 6 treatments of Docetaxel followed by hormone blocking, using a blocker like Lupron.  Instead, we decided to go with both chemo and Lupron at the same time.

Before making the final decision I had started with a low sugar, low carb diet with supplements like Saw Palmetto and Stinging Nettle Root.  This lowered my  PSA by 25% in a month and a half.   I also read at least one study that showed that Modified Citrus Pectin tended to enhance the effect of the chemo on the cancer.  When chemo started, I dropped most of the supplements and took 1500 mg of MCP per day.  About halfway through the chemo treatments I also read that AHCC (mushroom derivative) was being used in Japan in conjunction with chemo to lessen the chemo side effects.  There was no evidence of negative effects on the chemo.  I then took AHCC along with the MCP.

Early in the chemo treatments I started losing my hair, my nails turned yellow, and I had bouts of shooting pain seemingly all over my body.  Each pain attack would be in one specific area.  I lost my energy and started losing muscle mass.  I didn’t have the nausea that many have had.  When I added the AHCC, the side effects seemed to fade.  I lost less hair and the pain attacks seemed less frequent.  For this reason I tell those going through chemo to consider taking AHCC with the chemo to reduce side effects.  I’ll never know whether AHCC might have headed off some of the side effects like hair loss, but I suspect that it might have.

Within a few months my PSA dropped to .06, then to .03 with a more sensitive test.  At about the 18 month mark, I had another PET scan with a new isotope and there were no signs of new growth.  At that point, because the side effects from Lupron are nearly as bad as chemo, I decided to hold off on the Lupron injections to see if my natural supplements and diet could hold the cancer off.  6 months later I was tested and my PSA rose from .04 to .7 with a doubling time of about 4 months.  Unfortunately my regimen wasn’t holding the cancer at bay.  I went back on Lupron three months ago and will be tested in a week.

All this time my symptoms have been pretty tolerable.  In spite of my low sugar diet, my glucose levels are pre-diabetic, so I am taking Metformin, both to lower sugar levels and for its off-label use to help treat some cancers.  Lupron made me lose muscle mass, lose ALL sex drive, gave me neuropathy in my feet, gave me osteoporosis, and, according to my wife, has affected my brain function somewhat.  I do hate taking Lupron but I don’t want to die just now.

I have to thank Dr. Ramdev Konijeti at Scripps, La Jolla for ordering the PET scan and Dr. Munveer Bhangoo at Scripps for working with me on the treatment.

Les Briney

Friday, April 5, 2019

April 5, 2019 - Setback Time


I left you in October of last year.  Much has happened since.  First, Kathe and I moved from the San Diego area to the Hilton Head, South Carolina area.  The move was extremely stressful as we (1) got rid of lots of stuff, (2) packed 400 boxes, (3) finally sold our house in San Diego, (4) sold one of our cars, (5) had Mayflower truck our stuff to South Carolina, (6) carried the dogs on the plane, and (7) unpacked, trying to get rid of stuff in the process.  In the meantime I am still off of Lupron and continuing my diet and supplement regimen. 

It has been somewhat difficult to get an oncologist here since they are in short supply in this part of South Carolina.  Several new friends have said that the locals call this the “Low Country” which is a geographic term, but a better description would be to call it the “Slow Country” because things don’t move at the expected pace.  Such is the case for the staff for one oncologist I tried to connect with.  Out of frustration and also because of good reputation, I finally contacted the Oncology Department of the Medical University of South Carolina in Charleston, a 2-hour drive away.  The staff there acted much like Scripps in California—professional and to the point.  I was assigned to Dr. Michael Lilly who heads the Prostate Cancer Oncology group.  Dr. Lilly was educated in San Diego and worked at UC Irvine for many years so he understands my accent (kidding).

First South Carolina examination – I went through the usual blood tests and received some not-so-happy results.  My PSA has risen from .08 in December to 0.70 in the last 3 months.  This translates to a doubling time of about 4 months, predicting that 0.70 would go to 1.40 in that time.  My Testosterone level went from 42 ng/dl to 345 ng/dl.  The rest of my tests were pretty much normal.  So much for going without Lupron.  Of course Dr. Lilly would prefer to have more readings (wait for 4 months), but since the cancer was invading my whole body with a PSA of 1.6 in the past, I don’t like to mess around and give it a chance to grow.  Going from 0.08 to 0.70 is an 8.75 times increase and the same with testosterone.  I had hoped that things would move much more slowly with my diet and supplements, but now I will be back on Lupron next week.

Metformin – So I have been taking 500 mg Metformin for the past several months.  I am doing this because I am pre-diabetic in spite of my low sugar diet.  There is something about the diet that impacts my glucose levels.  I am taking it also because of an off-label use to slow cancer growth.  So what has it done?  I don’t know--other than make me lose weight.  I don’t want to lose weight so I eat more.  My glucose levels are lower, but I don’t know if it is having any impact on the cancer.

Otherwise I am not feeling any side effects I would consider to be from the cancer itself.  I do have lots of somewhat normal aches and pains and some residual from the chemo like nasty toenails.  For that I went to a podiatrist for the first time.  My toes are looking much better now.

We’ll see what’s next for the now Ex-Remission Man.


Tuesday, October 23, 2018

October 23, 2018 – Follow-up, no Lupron

“Remission Man Gets Checked” was the headline in the local paper.  Okay, it didn’t make the papers because it wasn’t that exciting.  In my September 7th checkup I had asked to stop the Lupron injections to see what might happen.  My oncologist agreed, as long as we watch my PSA and testosterone levels in 6 weeks.  Today was my 6-week appointment.

I had the labs the day before and unfortunately the ultra-sensitive PSA results take several days because they send the sample out.  In the meantime all of my other results were extremely normal.  My testosterone level is 17, which says the Lupron is still affecting me.  I am now chaffing at the bit to know what my PSA is.

During this period I have been taking my supplements, watching my diet to cut down on sugar, and doing some exercising.  I need to exercise more!  I feel I am wasting away, although I have only lost three or so pounds.  I just feel skinny, seeming that my muscles are smaller and I am not as strong.

During this period I also considered the Care Oncology Centers protocol, mainly because of a post in UsToo! from a guy with the same Stage IV cancer who went on the COC protocol and, without Lupron, experienced tumor shrinkage. The Care Oncology protocol is:  Oral atorvastatin up to 80mg once per day, oral metformin up to 1000mg once  per day, increased to bid, oral doxycycline 100mg once per day, oral Mebendazole 100mg once per day.  It is managed by a tele-doctor and my labs on a quarterly basis.  The initial tele consult costs $800, the meds cost $60/month, and quarterly consults cost $295.  Of course none is covered by insurance.

I talked to a COC specialist and he recognized that some of what I have been doing with my supplements constitutes a metabolic treatment (affecting cell growth).  The COC protocol is essentially metabolic treatment.  He talked about the advantages of metabolic treatment and how safe their particular treatment is.  He added that he thought in my case the treatment would stave off the cancer growth and, using doxycycline in particular will help stop calcium from leaching into the bloodstream.

I discussed this with my oncologist, Dr. Bhangoo.  He said the protocol could possibly help, but that there was so little evidence that it would help in the case of prostate cancer.  I thought a lot about what he said, what the COC doctor said, and read as much as I could find on COC.  I came to the conclusion that I would just continue my “metabolic” treatment with the supplements that some evidence has shown have reduced cancer cell production and see what happens without the Lupron.  I’ll reserve COC for later.

That said, I had read that metformin, which is used to treat diabetic conditions, may be a true anti-cancer drug.  This was first based on anecdotal evidence that diabetics being treated with metformin had a reduced risk of cancer and improved cancer outcomes.  Since this discovery, preclinical studies have shown that metformin impairs cellular metabolism and suppresses oncogenic signaling pathways.  In other words it could slow cancer cell division.  Metformin also has few side effects, the major one being diarrhea. 

I talked with Dr. Bhangoo about my desire to try metformin to go with my supplements that are also trying to also slow or stop cancer cell division.  He said he could prescribe it for me and we could start with a low dosage.  I am very much looking forward to getting my prescription.  I am less concerned about diarrhea because I am having the opposite problem recently.  I am blaming my problem on the Modified Citrus Pectin or some other supplement I am taking.  Being constipated is no fun!  My oatmeal and veggie smoothies aren’t doing the trick.

So, next we will (1) find out what my PSA reading is and (2) see what happens when I take metformin.

Signing off for now,

Remission Man

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