UPDATE: 6-2020

(Some of this update maybe too graphical and upsetting… but it is all in light of my medical situation – apologies)

Well I can say a lot has transpired since my last update in October of last year.  Back then I was starting my Hyperbaric Oxygen Therapy treatment at UCLA.   That was a brutally long process of 40 days.  So that ended at the end of November and I was back home again in December.  Well… then after 5 days of being home, I was at work and shocked that I went to the bathroom and while urinating, I started to urinate a stream of blood.  I was a bit shocked and I called in Marcy to look.  That necessitated a call to my oncologist. He got me in the office within 2 days. 

Initially having “Gross Hematuria” (there is hematuria which is blood in urine you can’t see, and gross hematuria which you can see) is a concern with post cancer treatment patients because of secondary cancers due to radiation. So in lieu of a cystoscopy, which he said I should avoid due to the dysuria (pain) problems I have with my urethra, he ordered a new test called a CXBladder test.  That is a urine test that looks for bladder cancer dna.  The test result can back in about 7 days and it was negative for bladder cancer. Great!  In addition, I had a CT Urogram that looks for any issues from the kidneys down through the ureters to the bladder.  That also came back as good, with just a few cyst in my liver that has been seen before. (By the way, the CXBladder test was not approved by Blue Shield and I got a bill for $2,900.00… Since that time, I have been in a medical fight to say the test was medically necessary as my Oncologist ordered it.  As of this date, it is with the state of California medical review board).

So the end result was that I must have some cystitis (inflammation) issues somewhere in the chain and my body was expelling some blood from that. The normal treatment would be to go to Hyperbaric Oxygen therapy!  Well I just did that so my doc said we should just wait to see if something comes up again. 

FAST FORWARD TO MAY 2020

So I am at home and it is the middle of night… I get up to go pee (I don’t always, but I felt the urge) and behold a very long stream of blood.  I thought shit.. not again! Unlike before where it happened one time, this time I urinated blood for two day. Now what!

Not What You Want To See When You Pee! (Blood and Blood Clots!)

Now it was time to go see a specialist. I discussed it with my oncologist and the next step was to go get a cystoscopy. You know, the one that we were trying to avoid.  I ended up going to see Dr Karim Chamie who is one of the head Urologic Oncologist at UCLA.  Because of the COVID-19 issues, it was easy to get in to see him as there were a lot less patients going in. I was in within the week. 

I had a consultation with him and he ordered another CT Urogram that I had that day.  Again no issues were shown on that scan except they also reported some small kidney stones that may present an issue in the future.  He said we have to do a cystoscopy to look at the urethra and bladder.

It was scheduled for a week later.  In that time, I was urinating streams of blood for about 2 days and then off for 5 days, then 2 days again. So in a way I was looking forward to the cystoscopy. I mean, lets figure this out!

The day of the cystoscopy, Marcy and I went down to UCLA. It was so nice because of COVID-19 that the freeway was clear and instead of an hour and half drive we got there in 50 minutes.  I went into the room and the tech preps me by washing all of my front pelvis down with a betadine solution (you know the orange colored stuff).  Then he draped with me so just my penis was exposed.  Of course I asked Marcy to video the procedure so I can review it again.  (No I’m not showing you the whole video) Then the guy put a small syringe of lidocaine into the opening of my penis to numb the upper portion of my urethra.  It hurt… a lot. He told me to wiggle my toes to take my mind off the pain.  Within about 5 minutes Dr Chamie can in and got right in to using the cystoscope (a “small” flexible tube (Marcy even commented that the tube was a lot bigger than she thought it would be!). Well I could not tell that any lidocaine was working because as the doctor inserted the cystoscope it F’ing hurt. The tech said “wiggle your toes again”!

Most likely due to the irritation I already had in my urethra it hurt a lot! He puts the scope all the way into the bladder and he extracts some urine for testing.  Then he looks around in the bladder and then back out in the urethra.  As you can see with the picture below, the bladder looks good but there was a lot of blood at the “bladder neck” and upper “prostaic” urethra area.  Lots of blood with blood clots.

The Cystoscope that is inserted into urethra
Image of inside my bladder
My Bladder Neck (The bladder neck is a group of muscles that connect the bladder to the urethra. The muscles tighten to hold urine in the bladder, and relax to release it through the urethra).

The entire procedure is about 6 minutes. (Too long!)

After the procedure, he told me: “Good news, your bladder looks really good. No issues there. The bad news is that you have “radiation induced hemorrhagic cystitis” of the bladder neck and upper urethra and there is not much I can do about it now”. He stated that it is a degenerative issue with necrosis (death) of the cells from the radiation and that it was another progressive downward step. He told me that I can come back and see him when it gets worse. I asked “what does worse mean”? He said if I bleed for 5 days or if I get blockages when I urinate. He stated that I was kind of lucky in that if the blood clots were in the bladder I could already be getting lots of blockages, but because they are in the bladder neck and upper urethra areas that the pressure at least gets them pushed out. Probably because I take Flowmax twice a day that also helps.

So that is where I am today… every week or so I have some blood while I urinate. I am reading a lot about the issue and who the experts are if I need more procedures in the future… which will eventually happen. It sucks, but what I am going to do but be prepared. It has been a journey.

So until next time my friends…..

UPDATE: 10-16-2019

So a lot has been going on since my last update. I have had another doc appointment I didn’t update but more importantly I had another small bowel blockage (SBO). It was in August and it is a brutal process to clear those in the hospital. It takes 48 hours on a nasal gastric tube and it hurts… a lot. I was not happy that this happened again. I started to seek additional GI support at UCLA. Unfortunately I met with a GI doc in Thousand Oaks who told me that I just need to eat more fiber. WTF! I told him I have radiation interitis. The standard for this issue is not to pack fiber into your bowels that will get blocked up due to the motility issue. He obviously thought it was just constipation and I needed to eat more fiber and move on. He actually pissed me off. I realized later that he probably doesn’t have that much experience in radiation damage issues. I also reached out to my primary doc at UCLA for more help. Online at the healing well site, I put out a post that explained my issues and what have others done. There were a few guys with similar issues of radiation proctitis, radiation enteritis & radiation cystitis. They all had hyperbaric oxygen therapy (HBOT). Based on that I asked for a referral to UCLA since they had a large chamber and actually published a paper on HBOT and positive effects for radiation issues.

UCLA Hyperbaric Oxygen Chamber

Well I got the referral and Blue Shield green lighted 40 sessions. So as I type, I am sitting in a hotel room 7 miles from UCLA and I am on my 12th treatment today. I need to go Monday through Friday for 40 days. It has been a grind, but I am hoping this helps. It has been 3 years of abdominal pain, 2 SBOs, and all the other effects of these issues. This is in lieu of a surgery solution.

Last week on had my 4 month checkup at my oncologist. My PSA is back at 0.17 so not bad. Better than being in the 0.2s . So not much to worry about for now.

That is my update. Onward!

Update: 3-6-2019

I had my 3 month oncology visit on March 6th, 2019. 

PSA:  Well my psa jumped up to 0.24. That is a 41% increase. It is the highest score since I got off of hormone therapy in June 2017. It has been reported that a “bounce” in PSA between 12 and 24 months could be a normal phenomenon after radiation therapy. I suspect that the 0.22 level that happened in early 2018 was a bounce, especially since it went down, but I have not read that bounces occur 3 years post radiation. At this point it is just a jump and it will be more important to see what my June test will be.

Testosterone: I had a big jump in testosterone from 249 to 444. That is a great increase. Must be the reason for the increased hair growth on my back!

My next appointment is June. I will update you all then!

Onward!….

Update: 12-5-2018

I had my 3 month oncology visit on December 5th, 2018.  

So I got the test results:

PSA:  flat at 0.17, which is great. We don’t want it going up.   So cancer control is good. I just wish the side effects from the radiation was better than it is today.

Testosterone: I took a big hit on Testosterone down to 249 from 322. Although it went down that much, I can’t really tell a difference at this point, although my fatigue seems to be higher. Something to keep my eye on.

My next appointment is March. I will update you all then!

Onward!….

Update: 9-12-18 Checkup

I had my 3 month oncology visit on September 12th.  

On this checkup, I got my Genomic DNA sequence analysis from Invitae Corp.  They checked for any deletions or duplications in my DNA from my last blood draw.  According to the report, no deletions or duplications found. So nothing to tell my kids as far as BRCA1 or BRCA2 issues that everyone seems so worried about these days.  Good news I guess.

This time Dr Lam lifts up his index finger and says “time for this”.  He was referring to the digital rectal exam or DRE as it is known.  I thought of two things immediately, one: I was not in the mood for that, and two: glad he has really small fingers.  I guess no man with prostate cancer is in the mood for a DRE, but they are part of the process to feel for any lumps.  So a quick visit to another room and DRE done quickly. 

So I got the test results:

PSA:  0.17 up from 0.13   My PSA went up slightly.  I am not concerned at this point unless it keeps going up past my high of 0.23.  So doing well.

Testosterone: 322 down from 332!  Basically flat.  Hopefully that stays the course as well.

My next appointment is December. I will update you all then!

Onward!….

Update: Checkup 6-7-2018

I had my 3 month oncology visit on June 7th.  Before the appointment, I found out that my friend and Cancer Support Community board member had his appointment a hour before mine. We decided to meet up after for a quick lunch there in Marina Del Rey.

Same process… fill out the questionnaires, get blood drawn, and see my Oncologist Dr. Lam.  However this time he wanted me to give a blood sample so that I can have my DNA checked for deficiencies like BRCA and BRCB, etc. This test can be use as an indicator that I might have issues down the road.  BlueShield apparently will pay for it depending on my circumstances related to cancer with relatives.  I have had several relatives such as my father and uncle die of cancer so it was approved to be paid.  I will give a followup on that on my next update.

My Colonoscopy results were in… I have Radiation Proctitis. Nice. Whats a little blood now and then in your stool!  As Dr Lam puts it, I got a little fried from the external radiation treatments.  I just hope that doesn’t cause more GI cancer issues down the road.  I hear my risk is moderately higher for a secondary cancer, such as bladder or rectal cancer due to this external beam radiation.  This is from a published report from the National Institute of Health.  This is something we will watch for a long time.  Since I am younger, I have longer to live to get something else.  I guess I won’t worry about it now since the average time to a secondary cancer post treatment is 7 years.

So I got the test results:

PSA:  0.13 from 0.22!   Finally!  My PSA went down.  Maybe now I don’t have to worry about it so much.  That is a great sign my friends!

Testosterone: 335 up from 205! More great news… I am strong like bull now!

My next appointment is September. I will update you all then!

Onward!….

Update: 3-8-2018

I had my 3 month oncology visit on March 8th.  I originally tried to change it to the 7th because another friend from Cleveland, Ohio was going in for his 1st chemo visit and I wanted to see him for support, but they were to busy that day.

This time Marcy went with me to the appointment.  She wanted to make sure I talked to the doctor about some rectal bleeding I was having.  It was happening for about 3 days about a week earlier but then stopped.  I guess there are a few reasons it could happen but she wanted to make sure the doctor knew.  Like I wouldn’t say anything? (Guess she was worried I wouldn’t remember).

I filled out my usual paperwork, which is the prescriptions page, the urinary health page and the sexual health questionnaire.  All of these are to get a picture of how things are going during and post treatment.  After that they drew my couple of vials of blood.

Then the visit with Dr Lam.   We discussed my recent bone density scan.  After 18 months of ADT, my bone density was slightly worse. When they give it you the report, it give you an age that your bone density is equivalent to. My lower spine was equivalent to an 87 year old and my left and right hips were equvalent to 102.  Yup, 102. I need strength training and I need to start running somehow. My left heal doesn’t want to cooperate on the fast walking or running.  So I know I have to do something about that.  I guess I have to get my weights out of storage and start pushing them around!

Next we talked about the bleeding.  He thinks I may have Radiation Proctitis.   That is where the radiation kind of burns your rectal wall and it can bleed.  That is great, another radiation issue from the external radiation treatment.  I get to add that to the radiation enteritis I already have.  So Dr Lam wants me to get a colonoscopy to confirm his suspicions.  I will call UCLA and go have it done down there since I have seen a really good Gastroenterologist, Dr Weiss.

So I got the test results:

PSA:  0.22 up from 0.19

Testosterone: 205 up from 198 (not much of an increase)

So my psa went up again but very little.  That is great news so it looks like my testosterone slowed down and now my PSA slowed with it. So I can stop worrying for now.  Although to be honest, I would like my testosterone to be closer to 300.

My 2017 /18 PSA Levels

My next appointment is June. I will update you all then!

Onward!….

12-18-2017: Update

I had my 3 month oncology visit on the December 7th.  This visit was unique in that my brother Virgil went with me.  For this visit, I had my normal blood draws plus an infusion of Zometa to help with my bone density.  As usual, I discussed with Dr Lam my normal post treatment side effects of Chronic Radiation Enteritis and Dysuria.  Dr Lam is a little less of a ray of sunshine like Dr Turner in that he says I could deal with these issues for the rest of my life.  Nice. But he is just trying to have me mentally prepared if the side effects continue. There was another gentlemen there getting some infusions in the chair next to me.  He had a recurrence and is trying to fight the disease as it continues to spread around his bones. He is trying an immunotherapy treatment called Provenge.  Looks promising.  It is a very strange feeling to be in a chair next to a guy treating his stage 4 cancer knowing that he went through the same treatment program I just went through.  You tell yourself “I hope that is not me in 5 to 10 years” but the fact is that 25 to 30% of prostate cancer guys have a recurrence.  So you just go on and try not to let that little voice in the back of your head bug you.  As for the Zometa treatment, I hate it.  It comes with a couple days of bone pain that always makes me curl up. Sucks.  I hope it is working.  I go in for a bone density scan this month to see if the hormone treatments had negative effect on my bones… at least more than they expected.  Normal is 10% density loss.

So I got the test results:

PSA:  0.19 up from 0.09

Testosterone: 198 up from 71

So my psa went up again.  The fact that I still have a prostate could account for the psa.  Dr Lam tells me he will be more concerned if I get to 0.50 as that would be more than my radiated prostate should give out.  We will continue to monitor it and I will post the results here.

My 2017 PSA Levels

For the testosterone, it to a big jump, more than doubled. That is good news.  I do feel better and the hot flashes are just about gone now. So good news!  Damn I hated those hot flashes and night sweats.  I still have some fatigue but that will get better as time goes on.  For now, things moving in the right direction.

My next appointment is March. I will update you all then!

Onward!….

9-15-2017: Update

I thought I should put out another update since I just had my first 3 month checkup.  It is weird, there is this anxiety about going to get a PSA test now.  I just went through all this treatment, and I just can’t imagine starting up again.  That would suck.   So I went in for my check-up.  I discussed with my Medical Oncologist, Dr Turner, about my current side effects, the Chronic Radiation Enteritis and Dysuria.  He is hoping I have some relief of symptoms after the 24 month when my radiation stopped. I am 16 months past now. So maybe some relief by May.  I can only hope!   I got my blood taken and then left.  I anxiously awaited my test results, both for my PSA and testosterone level.

So I got the test results:

PSA:  0.09 up from 0.03

Testosterone: 71 up from 39

So some good news and bad news there.  It is not a good thing that the PSA tripled.  But it is just a single test.  It would have to go up 3 times in a row to be a bad trend.  But there is still anxiety that occurs. I would be lying if I said it didn’t bother me. Below is my PSA chart of my tests for this year. No test in July and August.

My 2017 PSA Levels

For the testosterone, it is climbing.  Chemical castrate levels are less that 50 ng/dl.  I am at least above that now.  Minimum normal levels are 300 ng/dl.  So I have a way to go.

So my next appointment is December.  Funny, now I am anxious for that appointment.

Onward!….

BACK

6-1-2017: 1st Day of Remission

People!  I am done!  Well at least with my primary cancer treatments.  It was a long 18 months.  I went through the ringer for sure.  However I read what others have gone through for longer or have a stage 4 diagnosis and it puts it into perspective for me.  As for me I am happy.  Not 100% happy as I do have some lasting side effects that I have explained before.  But my cancer control is great.  Now I go on a 3 month cycle of PSA test to make sure it all worked.  I also have to let the hormone therapy wear off which takes about 6 to 9 months as my testosterone comes back – hopefully to a normal range.

In July I go and get my port removed from my chest.  It helped a lot on the chemo treatments and any time I was in the hospital, it was right there for the nurses to use.  Easier than sticking needles in my arms or hands.

So now I move onward.  Yes, this cancer diagnosis will be in the back of my brain forever. I know that as a G9 high risk guy that I may never be out of the woods, but at least for now, remission is the word of the day.  Last PSA was 0.03.   I am happy to have this behind me and for my wife who was my caretaker when I went through it all. It is tough on a spouse too.  I did gain a wonderful dog who was my faithful companion during all the days I did not feel well or was laid up in bed.  He curled by my side and comforted me.  I also would worry about him instead of worrying about myself.  It also made me get up and walk him.  That always helps.

So if you have read this blog, and you have questions, or just say hi, send me an email.  I will pay it forward for all the help I got at the start of this almost 3 years ago.

Take care. -JR