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 7^th 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

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

June 19, 2019 - NAD Man

Chemo Man is now “No Active Disease Man”

I was going to write that my last PSA test showed a drop back to 0.03 after my March test was a 0.04.  Of course this was very good news, even though the difference may have only been an anomaly.  I should explain that even getting a an 0.03 takes a special ultra-sensitive PSA test.  The less sensitive test can only say that the patient has a PSA of less than 0.06.  In any case 0.03 says that if there is any prostate cancer activity, it is extremely small.

Then today I underwent an Axumin™ PET scan, a new (approved by FDA on May27th) type of scan that uses and amino acid analog called fluciclovine F-18 with radioactive fluorine-18 attached.  This stuff is injected into my blood vein and the drug is taken up by the prostate cancer cells.  The fluorine-18 emits radiation that is picked up by the PET/CT scanner, which in turn uses a computer to produce a detailed image.  A few minutes ago I received the preliminary results from my oncologist, Dr. Bhangoo.  He said, “PET scan shows no evidence of active disease.  Great result.”  Quite frankly I was expecting much worse since this is a more sensitive test than anything I have had before.  It does, however, make me wonder if my doctors are disappointed to see nothing while using their brand new toy.  J

I have stuck to my regimen that I have talked about in the past.  I did introduce a turmeric/curcumin pill in my daily pile of supplements, even though Kathe does add some turmeric to our shakes.

Last month I had my yearly Medicare wellness exam.  My blood work showed everything in the normal range except for one thing.  This was my Hemoglobin A1C which was 5.9 % (normal is less than 5.7%).  This is pre-diabetic!  My primary care doctor said I should cut back on my sugar intake.  WTF?  I am on a very low carb, almost no sugar diet! It makes me wonder what I was when I was gobbling all those cookies and sucking in that pure white sugar.  No one told me I needed to do anything then!?

I talked to several doctors about this finding.  One said it could be the Lupron.  Others said it could just my getting old.  Just Great!

Now I have to work on this problem in addition to keeping up with the cancer fight.  I do know exercise is one thing I can do and I know I don’t exercise enough.  Walking the dogs several times a day is not enough. 

I am reading a good book on nutrition entitled “Beating Cancer With Nutrition” by Patrick Quillin.  I recommend it to anyone who is going through this fight.  It isn’t teaching me a whole bunch of things I didn’t know, but it is reaffirming much of what I have been doing.  It talks about four main contributors to successfully fighting cancer: (1) positive mental attitude, (2) good doctors, (3) mindful nutrition and building the immune system, and (4) exercise.  It talks a lot about mental attitude and the contribution that friends and strong beliefs can make.  This cannot be underestimated.  I’m getting into nutrition details now, but I can say that I agree 120% that the four contributors are why I am here today calling myself “NAD Man”.

So what is next?

I am going to have a DEXA (bone density ) scan soon and am also going to have genetics testing.  Stay tuned…

NAD Man

March 9, 2018 - The Truckin' Man

Truckin’ Along

I just had my quarterly Lupron shot after my labs showed that my blood work is “totally normal” according to my oncologist.  Apparently the doctors are concerned about the liver numbers in particular.  I also finally had another ultrasensitive PSA test.  Scripps now send these out, so I got the results today—0.04.  This is one hundredth of a point higher than it was on 8/29/2017.  It is not something to worry about at this point, but I want to keep monitoring using this test instead of the less accurate test the lab used since 8/29.  That test cannot detect anything below 0.06.

I am continuing on my diet and the supplements.  I also continue to talk with my peers who have more ideas than there are supplements in the world about what we all should be taking.

My oncologist talked with my contact at CureMatch, the company that performs a complete analysis of a patient’s biopsy and history of prostate cancer and comes up with potentially preferred therapies, including clinical trials.  The problem is that I don’t have a biopsy and my cancer is sleeping right now.  Last year I had a test to see if there were cancer cells floating around in my blood (‘liquid biopsy”), but none were found.  All this says is that I have to see progression of my cancer before we can take this step with CureMatch.  I could go off of Lupron, but letting the cancer grow this way is problematic at best.  Some of my peers have chosen to do this, but I guess I am too conservative for this.  I’d love to get off of Lupron and its side effects, but I don’t want to run the risk of moving up my end date.  What I have to do is something else to deal with the lack of sex drive, the loss of muscle mass, and the neuropathy.  The obvious partial answer is exercise (yuck).

I am interested in Immunotherapy, but in order to have the doctors decide whether I may be a good candidate, they need to get the DNA of some active tumors, which I apparently don’t have.  Back to the Catch 22.  Besides, Immunotherapy has not been that successful due to the nature of prostate cancer in contrast to melanoma and other fast replicating cancers that make use of a particular mechanism that the body can be made to attack.

I don’t like being on hold, so-to-speak instead of truly attacking the cancer to kill it once and for all.  I’m trying (with some success) to starve it by taking away testosterone with a combination of supplements with some history of curtailing some cancers and hoping that cancer feeds on sugar—hence a low sugar diet.  It is just that statistics show that this approach will likely go the way of most diets—only temporary curtailing of the problem child.

In any case, I’m just reporting that all is good and I still have no significant symptoms that can be pointed directly at the cancer.

Again, thank you all for your incredible support.

Les, Truckin’ Man

January 14, 2018 – Happy New Year

Since my last post much has happened, but not too much on the health score.  I had my next checkup on December 6^th which was accompanied by another Lupron shot.  I actually had a scare with my PSA, which, when I looked at the results I saw 0.06, which is double that of my previous 0.03.  When my oncologist said that I was doing very well with an “unmeasurable” PSA I asked how that was, since it was 0.06??  He said, “Didn’t you see the < sign before the 0.06?”  So the result was <0.06 or less than 0.06, not 0.06.  Whew!

So why was this test termed unmeasurable at less than 0.06 when they were able to measure 0.03 before?  The obvious explanation is that the lab used a less sensitive assay.  This is annoying to an engineer.  Don’t mess with the tests!  I would hope to have the same test assay as I had before the next time so I have the best measure.

My testosterone was 58, which is higher than my oncologist would like it to be.  It may be because I was two weeks overdue for the Lupron shot, but now the he wants to see me in two weeks to check testosterone in the middle of the 3-month cycle.  Lord knows I don’t want my testosterone to be lower from a side effects standpoint, but I also want to starve the cancer!

My trip to Washington D.C.  On December 14^th I went to Reston, VA to be on a panel for one of the Congressionally Directed Medical Research Programs under the auspices of the Department of Defense.  The program in which I was chosen to contribute was the Prostate Cancer Research Program. Through a very rigorous two-tier process, this program chooses which research facilities, from of a large number of proposals, will get funding toward finding a cure for prostate cancer. My panel was comprised of leading scientists, clinicians and fellow consumer reviewers (prostate cancer survivors).  The consumer reviewers were asked to assess proposals in the light of potential patient impact and also provide a sense of reality to the scientists, many of whom had never met a real prostate cancer survivor.  The experience was very tedious, with several weeks of proposal reading and review preparation, but it was also fascinating.  It is incredible what we do know about the stages of prostate cancer and equally incredible what we don’t know. 

I learned a few little tidbits that were eye-openers for me.  For example, I knew that prostate cancer tends to be a slow-growing disease (with exceptions of course).  Because of this, unlike other faster-growing diseases, prostate cancer mouse studies are difficult because the life span of lab mice is around 2 years and lab rats 3 or so years.  In other words, unlike studies of fast-growing viruses the “patients” most often die before advanced stages of prostate cancer can develop naturally.  This means that scientists have to resort to all kinds of unnatural methods to speed up or slow down processes.  This also means that with prostate cancer one of the last steps before human trials can be problematic.

I also learned that in practice the typical PET scans are less effective after androgen deprivation treatment (Lupron) because the uptake of glucose is less and can lead to missed tumors.

Most important to me personally was that some patients with certain genetic markers have responded well to specific genetic therapies.  Since I have a family history of prostate cancer that goes back several generations, it is time for me to get some genetic testing.  The possibility that I may have favorable genetic markers that could lead to successful treatment alone makes my trip to D.C. worthwhile.

As for my contribution to the panel, I hope I did help to ensure that our tax dollars go to very worthwhile research projects that will ultimately lead to a cure for prostate cancer.

If you are interested, this is a brochure on the program:   CDMRP DoD Brochure.pdf

Next steps.  I am hoping to get my genome sequenced to see if there is any other treatment that might be better than the Lupron.  The “problem” with this is that it does appear that my cancer is responding to the Lupron, so the doctors may not want to okay any other treatment.  This brings up the subject of Protocol.  Apparently every disease has a treatment protocol that doctors follow (often somewhat blindly) and insurance companies expect to pay for.  For prostate cancer at my stage the protocol is to treat with Lupron or similar androgen deprivation drug and if that shows a drop in the PSA, continue.  If the PSA drop is sluggish or there are painful side effects of the cancer in the bones, chemo is called for.  After chemo when the cancer stops responding to the androgen deprivation therapy Lupron or similar drug (Castrate Resistant Prostate Cancer), then there are some drugs that are called for.  These deal mainly with the side effects since at this point there is no cure.  Fortunately in my case I am not there yet.  I believe this is (1) because we broke protocol and went with chemo and Lupron out of the gate, (2) my general health was pretty good going into it, (3) I made dietary and supplement changes, (3) I’ve maintained a positive attitude, thanks in large part to a wonderful support network of family, friends, doctors, fellow church members, and God’s help.

So, since I am doing well, there will be a desire on the part of the doctors to stick to protocol and not try anything new.  I don’t agree.  I think at the least I have to prepare for the next phase.  Hence I will be pushing to get my genome sequenced to see if I might be a candidate for other treatment.  That’s my next step.

In the meantime, I thank all who read this for your support.

Les, Supplement Eater Extraordinaire