July 22, 2025 – Saw all of the doctors

Apparently the chemo is working.  The sign is that the lymph nodes that took on some of the cancer are showing signs of improving.  Therefore we will be continuing with the treatments.  It is two weeks every Monday and then one week off.

Unfortunately the stent is still there.  It was replaced a couple of weeks ago and will have to be replaced in three months.  I hate this because it means a day of prep and going under anesthesia even though the procedure takes less than 5 minutes.  It is two hours of recovery time for me.  The stent has to be replaced because calcium builds up around it and can cause a blockage.  This is a real bummer. The infamous pictures from the urologist surgeon were nothing special

As for the potential renal carcinoma, the treatment is likely to be external beam radiation.  There is no huge rush on this because the mass has not changed in many months and maybe even years.  Doctors have a rule of thumb that for masses equal to or less than 35 mm the treatment is watchful waiting.  Mine is 35 mm and has been for a while, so we will be watching it.  The good news is that it can be watched with CT Scans without using contrast.  The problem with contrast is that it is really hard on the kidneys.  My upcoming lung CT scan is with contrast.

I still have my cough.  It isn’t really bad but it is annoying.  I’ve finished the antibiotics and have tried (Unsuccessfully) decongestants.  They just don’t work anymore!

That’s it for now…

Les

 

July 18, 2025 – Moving Right Along

So, I am continuing with the treatments.  I did have CT scan and they did find a couple of things that were new.  I meet with my oncologists this next week and hope to have more of a definitive answer on what they found with the CT scan.  The new thing was an 11 mm area of inflammation inside my left lung.  This could be pneumonia so they scheduled another CT scan which was to take place today.  While I was on my way to get the scan, they called and said the machine was down—reschedule for the 28^th.  In the meantime I developed a cough.  It is one of those annoying ones that is just a tickle of the cough center with no production of mucus.  The tickle is from post nasal drip.  Anyway, I am taking another antibiotic, mainly because of my concern about the area of inflammation.  I just want this to go away!  I hesitate to take any additional meds for the drip but I may give in on that.

A week ago I did have a surgery procedure to replace the stent. It took me forever to come out of the anesthesia.  I have yet to have a conversation with my urologist about the outcome.  I do have a problem communicating with both the surgeon and the PA.  The good news is that my regular urologist is back.   If you remember, he went to the Emergency Room the night before he was to put the stent in.  I discovered he has a serious disease which sounded like something pulmonary.  He is being treated by a specialist oncologist at MUSC in Charleston, which is where my primary oncologist is located.  He can’t do surgery at this point, but he can interpret the pictures the urologist surgeon gave Kathe after the procedure.  I have a suspicion that the stent was removed (this would be good news), but I will find out next Tuesday.  Otherwise nothing bad was found during the stent procedure according to a cryptic message from the surgeon.

I read the report from the CT scan technician, which I had avoided the first time around when they found the bladder cancer.  I have some other potential problems like possible renal carcinoma and a 34 mm mass in my liver.  I stopped reading at that point.  I’ll discuss this with my oncologists.  I knew about the mass from previous scans.  Apparently the doctors don’t treat these seriously until they are bigger.

Getting old sucks.  How is it that I can have all these infirmities and so many people my age seem to have none?  That said, I do have friends with just as many problems.  Knock on wood—I still have my brain (for now).

Kathe is going through prevention activities such as diet, special many different types of exercise, and hyperbaric treatments because she was diagnosed with the gene that says she has a 60% chance of getting Alzheimer’s.  She is attacking with a vengeance.  I admire her dedication.  I don’t have it in me to be that dedicated.  Right now I am doing very little.  This needs to change!

I’ll keep you posted after seeing my three doctors next week.

Enjoy the heat and wet.

Les

June 8, 2025 – Chemo More Tolerable

For the latest treatment, my oncologist reduced the strength.  The good news is that this also reduced the side effects.  This is where the side effects stand now:  

1. Fatigue – Although I still have some fatigue, I am almost back to normal and am happy to live a more normal life.  

2.  Nausea – I have had only a couple of days of nausea, which were handled very well by the anti-nausea pills.  

3.  Rash – No more rash.  The patch has disappeared and no itching.  I do wonder if the rash wasn’t caused by the antibiotics I was taking for my UTI.  

4.  Neuropathy – I still have occasional attacks, but they are much less frequent. I don’t feel the need to take any pain killers for these.  

5.  Chest tightness – I had one three-day period where I had an extremely stiff neck and when I took a deep breath I felt like a baseball had hi the middle and back of my chest.  I finally broke down and took an Ibuprophen and it went away.  Tylanol didn’t do anything. 

6.  Morning sweats – I often wake up sweating in the mornings.  I am also running a temperature about one degree less than my normal 97.3 degrees, so I am often chilly during the day.  This is new so I tie it to the chemo.  

7.  Slight loss of taste – Things just don’t taste as good..

Sleeping is still a challenge, but I think I am getting enough sleep in spite of my hourly awakenings.

UTI

After the first course of antibiotics I gave a urine sample to my urologist.  He sent it to LabCorp and four days later the results came back as positive for e.Coli.  I called the weekend number to get an antibiotic and Dr. Perez was the doctor on call.  Since he had been my urologist and knew a little of my history, he prescribed Cipro for 7 days.  I took the Cipro and three days after the last pill I submitted another urine sample that went to LabCorp. On June 7th  I got the results.  I still have an UTI, but it is no longer e.Coli.  Here is the report:

Abnormal:  Staphylococcus haemolyticus

“Based on resistance to oxacillin this isolate would be resistant to all currently available beta-lactam antimicrobial agents, with the exception of the newer cephalosporins with anti-MRSA activity, such as Ceftaroline 10,000-25,000 colony forming units per mL.”

I sent a message to my urologist requesting a prescription.  I hope to get this on Jun 9^th.

These UTI’s concern me as I go through chemo.  I am also concerned about my tolerance to various antibiotics.  We’ll see on this one.

Bottom line: 

I’m doing okay. 

Les

 

May 12, 2025 – Chemo Side Effects

Now that I’ve had my second treatment, I have some experience to relate.  I am being hit by several side effects:

1.  Fatigue - I definitely feel tired much of the time.  I spend a lot of time in bed sleeping.  My fatigue is just making me want to go to bed much of the day.  I have no ambition.

2.   Nausea – In the morning I feel slightly nauseous.  I take one of the anti-nausea pills and am pretty much okay for the rest of the day.

3.    Rash - I have a rash covering my leg about 8” in diameter.  It started with one small pimple at a time.  It itches, I scratch, and I then have a little open sore.  Soon after the skin has been broken the itching goes away.  The patch is growing very slowly. I also have some random spots on my arms.

4.    Neuropathy – This is not new for me since I have it off and on occasionally ever since Docetaxel.  The difference is that for some reason some of the jabs are in my groin area (which I definitely don’t need).  Most are in my legs and feet.  I would say I get the jabs at a rate of eight per hour, mostly at night time when I am trying to sleep. The best thing for this has been to take a Tylenol when it is bothering me most.  This deadens the jabs.

5.    Chest tightness – This is not a major tightness that concerns me more than a little.  I just feel a small difference in my ability to breathe.  Taking Alka Seltzer helps this, so it may be due to heartburn, which I don’t normally have.

6.    Morning sweats – I often wake up sweating in the mornings.  I am also running a temperature about one degree less than my normal 97.3 degrees, so I am often chilly during the day.  This is new so I tie it to the chemo.

Sleeping is still a challenge.  My body signals me every hour to get up and pee.  It is good when I do get up because I have to change incontinent underwear less often.  I have been known to last the whole night with only one pair, even when I miss a notification or two.  Thankfully I am able to get back to sleep pretty quickly.

Aside from all of this, I think I have beaten the UTI and my groin area is slowly healing from its intense rash.  During the day I can go without the catcher’s cup.  I need it at night because the nighttime underwear is scratchy.  Going without the cup is a lot more comfortable and allows the daytime underwear to work most effectively.  That said, I need to submit a urine sample to be sure e.Coli is bye-bye.

Doing better…

I may even do some podcast editing and cookie delivering today!  

Les

 

May 2, 2025 – Chemo

It is really hard to tell how this whole thing is going to go so early in the game.  So far, the effects are (1) increased neuropathy, which are like needle pricks literally anywhere on my body.  They come and go quickly but I definitely feel them.  The rate is about one every 5 minutes.  (2) I was walking through the Aldi supermarket and I wasn’t feeling well.  Then it dawned on me—nausea.  I didn’t have my nausea pills with me, but *duh* I had the same pills I had for my first chemo in the trunk of my care, expecting to take them for disposal.  I took a pill and felt better within 15 minutes.  (3) Random aches and pains, like a stich in my side or bone pain in my neck.  These come and go within minutes, but they are a little scary—especially when they are near my kidneys or liver.

I don’t have any other symptoms yet and even for some of these I wonder if they are a figment of my imagination.  The nurse told me that sometimes taking Claritin reduces the neuropathy.  I took a Claritin earlier.  We’ll see.

Continuing Plumbing Problems

The chemo is nothing compared to the pain in my groin area, thanks to inflammation as I mentioned earlier.  At one point I couldn’t take a step without experiencing excruciating pain.  That is when the engineer took over and I went searching for something that would protect “the equipment” from chafing.  I was looking for a catcher’s cup with little success.  Even Dick’s sporting Goods had none.  Amazingly I found the right thing at Target.  Using my cup protective gear allows me to walk again and to promote healing of the area.

The really good news is that I am starting to gain some control over my urinary system.  It has meant that I get up every hour at night, which HAS to get better!  I took some Flomax tonight to see if it extends the getting up to every 90 – 120 minutes.  It is great to know as long as I can keep my bladder, the system will work.  Note that I mentioned in the past two years I have had to self-catheter to overcome a locked sphincter muscle.  Apparently no more!  All I can say is that God is good.

One More Thing

I just got a call from my oncologist.  I had requested a urine sample and unfortunately I have e.Coli.  So it is another round of antibiotics.  I hope I tolerate whatever he prescribed.  I pick it up tomorrow.  I don’t know what effect (if any) this will have on Monday’s chemo infusion.

Until next time…

Les

 

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