April 29, 2025 – Chemo Start

 So the first round of chemo started on April 28, 2025.  It is a long time coming due to the time it took for the pathology report and the time to get Medicare approval for the treatment.  Before starting the treatment, the local St. Joseph’s infusion center has an education session to prepare the patient.  Kathe and I listened to the nurse as she started on the list of possible side effects.  Within a few minutes my brain couldn’t handle the huge number of potential side effects so I started to feel faint.  I laid down on the floor, much to the surprise of the nurse and Kathe.  For the rest of the one hour session I was on my back, listening to a how this could cause every side effect known to man and a preparation list that rivaled one to climb Mt. Everest.  I admit that all of this has scared me rather than making me comfortable with the whole process.  I’m sure I will settle down as soon as the infusions start.  That said, this is going to be a real ordeal for the next year or two.

What about the prostate cancer?

There is a risk that both bladder cancer and prostate cancer are active.  If we knew this for sure, the therapy might be the same chemo I had before, but it would be less effective in treating the bladder cancer.  The strategy is to go for the one that is known to be aggressive and monitor everything with frequent CT scans and blood analysis.  The good news is that the PSA is still less and 0.1 so hopefully it is still asleep.

The Infusion

It wasn’t so bad.  All the staff was friendly and competent.  It took a total of 4 hours, not including the doctor visit.  First I got a shot of anti-nausea meds, then Keytruda.  The nurses said it doesn’t cause a reaction.  This was true.  Then a 30 minute wait time and then the PADCEV, which has had reactions.  In my case I didn’t have any reaction except for a stomach ache, which could have been the Rita’s frozen custard Kathe got me.  I should explain that the hospital room has a view of Rita’s below.  We waited 30 minutes and I was released.  Kathe stayed with me the whole time, doing work on her computer.

So far the next day I have not had any reactions except for being a little tired.  I also have small aches and pains which are probably in my head.

I just feel good that we are finally attacking this cancer.  My next appointment is next Monday.  I think it is going to be two weeks on, then one week off, then repeat for 1-2 years.  I will have scans and blood work to monitor progress.

Plumbing Problems

I mentioned being left incontinent, thanks to the surgery.  Well, a related problem is irritation in the groin area.  This is really painful and because it is wet there almost all the time, treating it is very difficult.  This has slowed me down considerably because just walking is painful.  Hopefully the gooey ointment I am using will do the trick.  Sometimes it is the small things in life that can have the most impact.

Until next time…

Les

 

April 20, 2025 – Another Attack on My Body

I mentioned that in August, 2024 my new oncologist ordered a CT scan for March 10^th.  I must admit that I was nervous for the next six months for what they might find.  At my insistence, I had both a full body CT scan and full body bone scan.  This was because I remember that in 2016 when they discovered the Stage IV prostate cancer there was some activity in the skull.

Unfortunately they found several things.  There was a tumor surrounding one of my kidney ureters and some activity in some lymph nodes.  The oncologist asked my urologist remove the tumor and install a stent to protect the flow through the ureter.  The next week I had the surgery.  On the day of the surgery I received a call telling me that my urologist was admitted to the hospital and another urologist would perform the surgery.  This urologist has a good reputation, much like my urologist, but he know only a limited amount of my history.  The important part is my problems with that sphincter muscle.  I begged him to be careful with it, but I think my urologist would have taken this more to heart.

Post Surgery

The surgery was laparoscopic, so it had to go through that sphincter muscle.  When I was recovering was when I first heard that the urologist had removed a tumor and had dilated my urethra.  Of course I wanted to know more about the tumor, but I haven’t seen the urologist since the operation.  I really miss my regular urologist.  He is out of commission for the next few months.

Unfortunately, that precious sphincter muscle didn’t make it unscathed.  As a result, the spigot is now always open, leaving me incontinent.  To anyone who has found themselves in this condition, I now agree that it is worse than all of the above that has happened to me because it has changed my lifestyle.  The urologist said there is a chance I will regain control.  I certainly hope so because this truly sucks.  I’m becoming an expert on all that is available for this condition.

Back to the tumor… 

My oncologist ordered chemo to start a week after the diagnosis, with the assumption that the tumor was prostate cancer (reasonable assumption).  My oncologist was going to treat it with Docetaxel, the same chemo I had before.  The infusion would be every six weeks in Charleston.  I balked and said I needed a week or two to get my ducks in a row.  I wanted a second opinion and I wanted to know more about the tumor.  He agreed with the delay.

Then I had to chase the pathologist who worked for the urologist in a different hospital system.  After two weeks I was impatient, so I just showed up at the urologist’s office to light a fire to get the report. 

By that time, with the help of my MUSC oncologist, I was referred to a local oncologist, Dr. Bakos, who is a member South Carolina Cancer Specialists, a group under St. Joseph’s Candler Hospitals.  The main SJC hospital is in Savannah.  I am very familiar with St. Joseph’s, having had one of their doctors as my primary care doctor.  I had tried to get into their oncology group when I moved to South Carolina but was turned down.  I will now have the best of both worlds.  Dr. Ho at MUSC and Dr. Bakos at St. Joseph’s (10 minutes away) will work together on my case.

The pathology report was a surprise to all of us.  The tumor is bladder cancer, not prostate cancer.  It is a good thing that I delayed the chemo because the treatment for bladder cancer is very different from prostate cancer!

Bladder Cancer is no picnic.  It tends to grow fast and it directly affects quality-of-life.  What is also bad about it is that it frequently goes undetected for a long time. The ultimate treatment is to remove the bladder, which I am trying to avoid by having chemo treatments. Bladder Cancer has stages just like all cancers.  Mine is PT2, which I believe means that it has invaded the bladder muscular wall.  There is also some evidence of activity in local lymph glands and the lungs, so it is likely metastatic (spreading through the blood).  This dictates the therapy to be chemotherapy.  The good news is that there is a chemo treatment that is quite new but has had excellent results.  This is the Enfortumab Vedotin and Pembrolizumab combination, which was only recently been approved by the FDA.  This is also known as the PADCEV/Keytruda combination.  This is what my doctors are prescribing and they got Medicare approval for it.  The approval took a couple of weeks.  The PADCEV portion specifically targets an element in bladder cancer.  Keytruda is an immunotherapy drug.  This combination has a survival rate of around 79% compared to 52% for other chemotherapy.  I do like those odds. 

Les

 

 

March 28, 2023 – Diagnosed with Parkinson’s

I may have mentioned that I have had a tremor in my left arm since before my discovery of metastatic prostate cancer.  Back then I had gone to a neurologist who wanted to perform some tests for Parkinson’s.  Instead I prioritized dealing with the cancer.

Well, with my prostate cancer seemingly under control 6 years later, I decided to seek a movement specialist to deal with my tremor.  Here in this part of South Carolina there is one movement specialist in Savannah.  There are neurologists, but not those who specialize in movement disorders.  As a result, it took me 6 months to get an appointment with Dr.Trumble.  We drove to Savannah and saw her.

She did what I now know that all movement specialists do—put me through a bunch of movement tests.  One of the key tests is my walking gait.  Others like moving my limbs in opposite directions, toughing my finger to my nose, etc.  The bottom line:  She said it is very highly likely that I have early stage Parkinson’s.  The tremor on my left side is part of it and is not simply an essential tremor.  She explained that the most popular treatment for the past 40+ years is Carbidopa/Levodopa, Sinemet, Duopa, or Rytary (extended release form).  It tends to counteract some of the Parkinson’s symptoms such as the tremors and brain fog.  She did not feel I should start taking this drug yet (ascribing to the “limited period of effectiveness” theory).

New Doctor

I then started my research.  I wanted a second opinion and someone who was associated with MUSC, where my oncologist resides in Charleston.  MUSC has more than one movement specialists, but I was told that one of the best was Dr. Lillia Lovera.  I called with a referral from my oncologist to get an appointment.  The earliest was almost a year into the future!  I took it and asked to be called if there was a cancellation.  Within a few hours I received a call from Dr. Lovera’s office to tell me there was an opening the next day!  Needless to say, I drove the 100 miles to MUSC the next day.

Dr. Lovera’s examination was more thorough and she ordered a bunch of cognition tests.  The bottom line was the same:  I definitely have Parkinson’s with some symptoms such as gait and slightly lower mental acuity.  She recommended that I start on Carbidopa/Levodopa right away because there is no evidence that early starting has anything to do with later effectiveness.  She said it should help with both the tremor and the mental acuity.  She also suggested that I get into an LSVT Big exercise and training program.

The LSVT program was every day for a month and it taught me how to better deal with balance issues and to improve my gait.  One thing that Parkinson’s does is make movement smaller, even to go so far as to making the voice smaller.  I did a lot of yelling, stretching, and getting up off the floor various ways. The real challenge was when the therapist had me stand on one of those hemisphere exercise balance device and close my eyes while she shoved me from different angles.  What a balance challenge!   It was a great program.

I am taking three Carbidopa/Levodopa pills per day.  It took a couple of weeks to not feel a little nauseous but I do think they help with the tremor and brain fog.  I am also taking Vitamin B-1 once sublingually per day.  I read a book on this and other Parkinson’s patients have said that it has helped a lot with symptoms.  I think it has a positive effect on me.  Last, I am taking two capsules of Rivastigmine per day to hopefully slow down the brain drain.  This is at the suggestion of the neurologist.

Plumbing Problems

Not long after the first diagnosis of Parkinson’s I encountered a new problem.  I couldn’t pee because the sphincter muscle locked tight.  The solution was for me to self-catheter to push through the muscle. My urologist and neurologist had no direct explanation for this because it could be caused by injury from the kidney stone removal or by Parkinson’s.  For several months I carried catheter tubes around with me to use every two or three hours.  I was okay with this because there is nothing like the pain of not being able to pee.

PSA

While all of this was happening, my PSA stayed “unmeasurable”.  My oncologist had retired and I was being treated by a wonderful student doctor while MUSC was trying to get a replacement.  This went for almost a year until they hired Dr. Thai Ho from the Mayo Clinic in Arizona.  I finally had an appointment with Dr. Ho in July, 2024.  He told me I should have been having CT scans every year at minimum and set me up for a scan in March, 2025.  My last scan was three years before, which I had insisted back then.  My thinking back then was the same as his:  We were relying too much on PSA as a measure of my health.

Les

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…