March 23, 2022 – Back on Track

Well, I have much good news and some clarification.

Kidney Stones

I had the kidney stone operation and it was successful.  Aside from the catheter that I had to wear for two weeks, the urethroscope and laser didn’t change my urinary flow rate.  The journey they took through my wounded prostate (from Brachytherapy and a TURP) only had a little bleeding.

Not to be undone, the after-surgery CAT scan showed that I have five more stones lurking in both kidneys.  This resulted in the urologist performing a lithotripsy (ultrasound) to remove two of them on the other kidney.  None of these were blocking the ureter, so no pain.  No pain = no more lithotripsy.  Now I wait until one of these 2-7 mm stones gets into the ureter. Wonderful.  Note:  Waiting plus 64 ounces of water per day is the treatment prescribed by two urologists.  I changed urologists after the last lithotripsy because my new urologist has a relationship with my oncologist.

This blog isn’t about kidney stones so I will stop to say that I need to drink more, drink lemonade or cider vinegar, and avoid nuts—especially almonds.  All I can say about this is %$^&*%!

What about the diverticulitis?  I’ve heard not a word about that and I feel no pain, so I conclude that diverticulitis was a miss-diagnosis.  This is good news!

PSA

In my November and February checkups I discovered that the Casodex did its thing.  My PSA has returned to less than 0.1 ng/ml and stayed there.  Casodex for the time being is my friend, as it has been in the distant past.  My testosterone level is 9, so I continue to feel tired at times and have to fight the loss of muscle mass.

Because I am having to take Prolia for the osteoporosis caused by the hormone blockers, I had to consult with my doctor before having a root canal on tooth #18.  I have been told not to have any major dental work that might start an infection that could lead to the death of my jaw bone.  I did have the root canal and all appears to be good. 

Life is good as travel restrictions lift so that boosted me and boosted Kathe can do some local and distant travelling.  It is back for a visit to San Diego in the fall.

Next Steps

Many steps to the bathroom to get rid of my 64 ounces!  The best news is that constipation is no longer a problem.

Until next time…

Les

 

 

 

Aug 27, 2021 – Rising PSA

Since my last post many things have changed. The main thing is that my PSA has increased from 0.22 to 0.30 in one quarter which means that doubling time is 6 months. This concerns me and concerns my doctor so I have now added Casodex to my drugs. I have no other symptoms of course and I did have that Axumen PET scan that showed no growth but the concern is still there because of the rising PSA levels.

To add insult to injury, I also have had a rough time with diverticulitis. I don't know what started the flare-up but I suspect that it's my heavily-weighted nut diet. On one night just before my flare-up I remember I had three cups of nuts.

The pain of diverticulosis is incredible. Almost as bad as the diverticulosis itself was trying to get an appointment with my primary care doctor.  I ended up having to go to Urgent Care.  When I finally did get an appointment with my primary care doctor, I discovered that the Urgent Care doctor prescribed a drug that actually made my condition worse. When I finally did get to see my primary care doctor I was able to also get an appointment to get a CT scan.

Unfortunately the CT scan identified a 7 mm kidney stone.  This raised the question, “What was causing the pain?  …Diverticulosis or the kidney stone?  My primary care doctor only gave ma the message to see my urologist and so didn’t help answer this.  Frustratingly I couldn’t get to talk to him about it because of the wall of staff built around him. 

Miraculously I was able to set up a same day appointment with my urologist!  My urologist informed me that this had to be fixed and that the only way it was going to be fixed would be using a ureteroscope through my urethra and bladder to my ureter, where the stone is.  There, using a laser he will break up the stone and bring it back out.  He wanted to perform the procedure the next day!  Fortunately for me, I have very little pain, so we don’t have to go off half-cocked. Normally this would be messy but because of my scar tissue due to the radiation it increases the risk that my sphincter muscle gets damaged.

This is not to mention the risk of going to the hospital when all of the hospitals in the area are filled with Covid patients. I'm scheduled in a week to have the operation and I'm hoping maybe we can at least try to use ultrasound to break up the stone. I don't think my urologist is going to say that is a good strategy because of the size of the stone.

I will admit that I have some fears about what's going to happen next week 

What To Do Next

Of course the next step is to get rid of the kidney stone.  While dealing with that, I will take the Casodex and see what effect that will have on my rising PSA.

Until then I look forward to some relaxation of the pressure Covid is putting on all of us.

Les

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…

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 15^th 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…

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 3^rd 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

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.