Jodie was enthusiastic when I exited the bathroom a couple of weeks ago.

“Hey, that was a good pee! It sounded like it was coming out fast!”, she said.

“Uh, thanks. I’ve been feeling a lot better…”, I replied.

I was inclined to give her a fist bump, but quickly withdrew when I realized I hadn’t yet washed my hands. Honestly, I don’t know if this is a new high in our relationship, or a new low.

The day after our rendezvous I received the first of my bi-weekly PSA tests since starting hormone therapy. It was 10.70. To put in perspective, the last time I had my PSA measured was on Halloween, and it came back at 103. As of my appointment with my oncologist earlier this week, my score was 3.85. PSA scores under 4 are typically considered “normal”. The hormone therapy is working, at least for now ( more on that in a bit ).

This week I had my third appointment with my oncologist, Dr. Stewart.

Since my last appointment I had a full-body MRI as part of a research study. I was eagerly awaiting the results of this as well as the results of the genetic testing performed on my biopsy. As with my last two appointments, Jodie and my mom joined me in a small exam room.

The MRI results showed no more metastasis other than the sole lymph node that “lit up” in my prior scans. The good news is that the lymph node had actually shrunk from 18mm to 11mm. Normal is less than 10mm. Awesome! More evidence that the hormone therapy is working.

So what is a lymph node? Lymph nodes collect fluid, waste material, and other things (like viruses and bacteria) that are in the body tissues, outside the bloodstream. There are about 600 lymph nodes in the human body. They are spread throughout our body and interconnected by a series of lymphatic vessels. If cancer metastasizes to a nearby lymph node, it can traverse the lymphatic vessels like a highway and spread elsewhere.

My genetic screening results are still not in. There is only one prostate biopsy, and three different labs have been vying for it. Everyone wants a piece of me. The genetic screening lab, being last in queue, is still waiting. Dr. Stewart did however, tell me that there were no tumors detected in the blood of my biopsy.

Then we started discussing my future treatment.

My prostate cancer, due to it having spread to a lymph node, is an early Stage 4. This usually means treatable, but not curable. Dr. Stewart told me that he believes that there is a tiny chance that he might be able to cure me. In my prior appointments he told me that due to my age and general good health that he wants to be very aggressive in treating my cancer. At this appointment he was more specific as to what those treatments might be.

The thing about cancer treatments is that they have to be carefully orchestrated. Some treatments can only be performed once. Others can adversely affect future treatments. A friend of mine who is also fighting prostate cancer referred to treatments as arrows in a quiver. You only have so many arrows to shoot, so make each one count.

My treatment is to span roughly 2 years. During that time I will continue hormone therapy.

Hormone therapy, as I have mentioned in prior posts, starves the prostate cancer of testosterone which prevents it from metastasizing. Hormone therapy is also referred to as “chemical castration” as it blocks the production of testosterone in the ( cough cough ) testicles. Hormone therapy works well, but after a couple years the prostate cancer can start to adapt and either becomes more adept at slurping minute amounts of testosterone or, starts producing it on its own. At this point the cancer is referred to as Castration Resistant Prostate Cancer (CRPC). Hormone therapy is not entirely a single-shot “arrow”, but it’s close. It’s performed through a variety of medications and when one medication fails, another might still work.

Three months in I will start Chemotherapy.

The chemotherapy will be performed in 6 cycles over 18 weeks using a medication called Docetaxel which, from what I have been told, is generally well tolerated. While undergoing chemotherapy my hormone therapy might be reduced by eliminating Zytiga, which is rough on the liver. Chemotherapy is a systemic treatment in that it affects the entire body. It is administered through the bloodstream and kills cells that are undergoing mitosis, or cell division. Cancer cells tend to divide much faster than normal cells, so they are the most susceptible to the treatment. That’s not to say that healthy cells aren’t affected as well. Hair cells, among others, divide quickly as well.

“So am I going to lose my hair?”, I asked.

“You will only lose the hair you want to keep.”, Dr. Stewart replied with just the hint of a smile.

“Seriously?”. I replied, chuckling.

Humor, I imagine, is a fine line for medical professionals when dealing with cancer patients. I am fortunate that Dr. Stewart knows how to walk that line with skill. The truth be told, most men can pull off bald heads; no one can pull off the lack of eyebrows or eyelashes. That’s not to say my daughter Kaylee, isn’t looking forward to it. Nightly, I get asked the same question from her …

“Dad?”

“Yes?”, I replied.

“Are you going to have chemotherapy?”

“More than likely.”, I replied.

“Yay!”

“Why are you so excited?”, I asked.

“Because I don’t like your scratchy beard!”

Chemotherapy typically becomes less effective the more it is used. Similar to hormone therapy, the cancer cells adapt to it. However, like hormone therapy, chemotherapy is not necessarily a single-shot “arrow” either, as there are a variety of different medications that can be used.

After chemotherapy Dr. Stewart plans to run additional CT Scans on me to see how my prostate cancer has responded to the treatments. The CT scans will also prepare the surgeon for yup, you guessed it …

Six months into my treatment I will have my prostate removed through a radical prostatectomy.

Originally, Dr. Stewart was torn between surgery or radiation therapy. I asked him why and he told me that the “standard of care” dictates that surgery is typically not recommended for prostate cancer that has metastasized to a lymph node if the lymph node has exceeded 20mm. If you remember from earlier, my lymph node at its worst was on the cusp at 18mm.

For now Dr. Stewart has chosen to leave the radiation therapy “arrow” in the quiver and I agree, wholeheartedly. If radiation therapy is performed prior to surgery it can make surgery more complicated or not possible because of scar tissue/tissue damage. Radiation therapy is also typically a single-shot “arrow”; it can also be performed only once on a particular area. Leaving it in the quiver preserves a very effective treatment if the other treatments fail.

I have an appointment scheduled with a urological surgeon early next year to discuss what, exactly, surgery entails. Until then I’ll leave you with two words : incontinence and impotence. In a weird twist of irony, my kids will be carrying a diaper bag for me for once. Fortunately, from what I have read, both are usually temporary conditions.

If I seem a little cavalier about having my prostate removed, I have my reasons. From a purely psychological perspective it’d be reassuring to have the “bag of disease” removed from my body even though I am well aware that the cancer has metastasized outside of it. There are also physical issues as well. As I have mentioned in prior posts, my prostate has also caused numerous urination problems ranging from pain, to urgency, to a weak stream.

And that, in a nutshell, is my treatment plan. Piece of cake, right?

But that’s not all…

Next, Dr. Stewart had me sit on the exam table and breathe while he probed me with his stethoscope. He then he had me pull up my shirt and lay down while he palpated my abdomen.

“Your hands are freeeeezing”, I yelped.

“It’s the alcohol .”, he replied.

“Uh, you drink at work?”, I asked.

He just laughed at me. I laughed back, confused.

“Hand sanitizer!”, Jodie added.

“Oh…”, I said, sheepishly. Okay, so maybe the hormone therapy is dulling my mind a little.

“Originally, I started you on Degarelix, or Firmagon, because I was concerned about a testosterone spike making your symptoms worse. Now, I want to start you on Leuprolide, or Lupron. It’s administered as a single shot every three months instead of monthly.”, Dr. Stewart told me.

“And where is this shot administered?”, I asked.

Before Dr. Stewart could answer, his nurse materialized in the doorway, blocking my escape route.

“Drop your pants a little and put your hands on the exam table.”, the nurse told me.

“Ohhhhhhh….”, I replied.

“Uh, I’ll talk to you guys later…”, my mom said as she squeezed past the nurse and made a hasty escape out the door.

“And, you’re staying for this?”, I asked Jodie.

“Sure!”, Jodie replied, a little too enthusiastically.

I shot a glance over my shoulder at the nurse, who was now wearing what looked like a hazmat suit and gloves. She held a transparent bag marked with a biohazard symbol that contained a syringe full of what I imagined, was Lupron.

“Wow! I honestly didn’t think it was possible to make syringes where the needle is bigger than the barrel.”, I told the nurse, “Be gentle, or I’ll kick like a mule.”

The nurse was fantastic. I barely felt a thing, well, not until later on that day anyway.

“Have you ever been tempted to slap on a cute pink heart-shaped bandaid back there while no one was looking.”, I asked the nurse while pulling up my pants, “That’s what I’d do…”

“No, but maybe next time!”, she replied with a smile.

By the time I got home it felt like someone had kicked me in the ass where the shot was administered. Oh, well. It’s still far better than two shots to the belly.

So, that’s all for this year, folks!

2020 is going to be rough year for me, and to be honest, I’m scared. I’ve been feeling the best I have felt in months, and now with these new upcoming treatments, I am worried about relapsing. Fortunately, I have my family and friends. Their love and support have helped me more than they could possibly imagine. Thank you, it’s the best gift I could receive.

Take care. Stay healthy. Live life. And have a happy holidays!

-Scott

Previous : Another MRI

Next : I get to keep my hair, for now…

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“Hormone therapy generally makes everything shrink”, the radiation oncologist told me.

“Like, everything?”,I asked.

“Yes.”, she replied.

( Cough, Cough )

“Everything everything?”

“Yes, it’s a potential side effect.”

“Can I, uh, quote you on that?”, I replied.

“Sure!”, she said with a smile. 

And then she explained to me how shrinkage was a good thing – at least for future treatments. Smaller tumors mean less invasive surgery. Smaller tumors also mean less radiation when undergoing radiation treatment. You’ve heard it here first.

Shrinkage is good.

She explained that hormone therapy also starves “free floating” cancer cells that have broken away from the main tumor. By starving and killing these vagrant cells the hope is to stave off metastasis to other organs. 

Next she told me that cancer is treated based upon where it originated.

If cancer cells break off from the main tumor and spread somewhere else, the new tumor is still the same type of cancer. Prostate cancer that has spread to the bones is still very much prostate cancer and as such can be treated with similar therapies, such as hormone therapy. Cancer that originated in the bones is a different type of cancer altogether and as such must be treated differently. 

The upside of all this, at least for prostate cancer, is that the PSA score is a systemic indicator of prostate cancer in the entire body – not just within the prostate. If the prostate is removed for example, and the PSA score keeps going up, chances are good that the prostate cancer has found a new home elsewhere. That’s the bad news. The good news is that the same arsenal of treatments are effective against it no matter where it is. Well, as long as the treatments can reach it.

I’ve been on the hormone therapy medication, Degarelix, for almost a week now. 

After being told of the side effects and reading one too many reviews online I thought I was in for pure hormonal hell. So far my fears have been exaggerated.

The injection sites are painful.

I now have large painful bumps to the left and right of my belly button. Sneezing of course, hurts. So does sitting up from a prone position. When laying down I’ve opted to flop around like a beached seal instead of twisting. I wake up a lot, too, but I seem to fall back asleep easily enough. I can only assume that this is a result of the other side effects of the medication. The worst pain so far? The removal of the band-aids that were covering the injection site from my unshorn belly.

It makes me a little lethargic. 

Everything takes just a little more effort. I’m more tired, a little spacey, and forgetful. I was told to lift weights to counteract the muscle mass and bone density that is lost as a result of the hormone therapy. I’ve managed, but I get winded faster and everything feels just a little heavier. I’m lucky in that I have a sedentary job where the heaviest thing I need to lift is a computer mouse. If I were moving furniture however, I’m pretty sure I’d be well, screwed.

I’ve kept my anxiety under control.

This is what I was worried about most. Just thinking about anxiety makes me anxious. If you remember the 80’s movie Beetlejuice, when the titular characters’ name is said aloud too many times he jumps out and terrorizes everyone. Well, anxiety for me is kind of like that. I have an entire bandoleer of Ativan at the ready if necessary, but so far I haven’t had to use it. Staying in the moment has helped the most. As there is no clear path for my treatment yet, worrying about it is probably the worst thing I can do.

And then, of course, there’s the occasional hot flashes.

They’re not bad and they are rare, but they happen. I can best describe the sensation by flip-flopping the typical advice given to someone for public speaking: Picture yourself naked on stage talking to a large clothed audience. That, to me, is what a hot flash feels like.

A couple of days after my first treatment our neighbors invited us on a hike. While we were getting ready my oldest daughter, Ashley shoved one of those battery-powered handheld fans into my hands. This one in particular even had a water reservoir. 

“Here, dad!”, she said excitedly.

“Uh, thanks… um, why?”, I replied.

“In case you have hot flashes on our hike!”, she said proudly.

So, yes. My daughters have my back. It’s reassuring to know that when menopause hits the Vandervort household someday that I can take at least some credit in grooming my girls to take care of their mom, too.

Last but not least, I bought Jodie and the girls necklaces to wear to mark the start of my cancer treatment. The necklaces are simple silver chains, each adorned with three heart pendants. One heart for each girl. To me the necklaces are a symbol of solidarity. It seemed an appropriate gift for the three people who are going to be on the front lines with me throughout this fight. 

Take care. Stay healthy. Live life.

-Scott

Previous : Let the games begin…

Next : Doubling down on hormone therapy

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Today, Jodie and I drove to UCSD for my first hormone therapy treatment. As I mentioned in my previous post I was to be given Degarelix, more comically known as “Firmagon”, to reduce my testosterone levels. My nurse reiterated the side effects before describing how the medication would be administered.

“The shots will be given using a really small needle…”, my nurse said.

“Wait…shots? Plural?”, I responded.

“…to your belly…”, she resumed.

“Uh….”, I replied.

“…and it requires a loading dose of two shots. One on each side…”, she continued.

“…”

“…and together the shots will contain roughly three times the serum as a normal dose.”

“You’re not really selling this that well, you know.”, I told her.

“I have some ice packs for you to use afterwards. You will likely have some pain at the injection site for a couple days on up to a week. There will also be some swelling and redness.”, she responded.

“Swelling? Can you at least distribute the shots to look like I have abs?”, I requested.

At this point Jodie offered some Tylenol capsules which she had brought along for the occasion. The nurse quickly had me take them before preparing the shots.

“If I scream like a little girl don’t take it personally. You look like a nice person.”, I told the nurse before laying down on my back and pulling back my shirt.

“Oh, you don’t have much of  belly. That’s going to make this a little more tricky…”, the nurse said before starting the first injection.

Fortunately,  Jodie was able to capture the entire procedure on film for posterity. It went down something like this …

Okay, I might be exaggerating a little.

The administering  of the shots didn’t hurt much more than a flu shot. My nurse did an incredible job. The jury is still out on residual pain but I’ll be sure to post on that in the future if it is an issue.

A couple of band-aids later Jodie and I headed back to the parking garage. As I started backing out of the parking spot Jodie told me, “I have a special song for the occasion!”

“Uh, okay”, I said smiling.

She then started playing Stone Temple Pilots, “Creep” which ironically, was one of my favorite songs from high school. I didn’t quite understand the relevance until the chorus. When it played we sang aloud and had a good laugh. My wife has an odd  sense of humor as I do…

Forward yesterday makes me wanna stay
What they said was real makes me wanna steal
Living under house guess I’m living I’m a mouse
All’s I gots is time got no meaning just a rhyme

Take time with a wounded hand ’cause it likes to heal
Take time with a wounded hand ’cause I like to steal
Take time with a wounded hand ’cause it likes to heal,
I like to steal

I’m half the man I used to be (this feeling as the dawn it fades to gray)
Well, I’m half the man I used to be (this feeling as the dawn it fades to gray)
Well, I’m half the man I used to be (this feeling as the dawn it fades to gray)
Well, I’m half the man I used to be
Half the man I used to be

…okay, maybe not exactly half the man.

Jodie pointed out later that the Firmagon marketing material advertises an 88% drop in testosterone on the first day. “So, you’re effectively 12% the man you used to be!”, she said smiling at me.

“Thanks, honey.”

Take care. Stay healthy. Live life.

– Scott

Previous : Renewed Interest

Next : Manopause

#prostatecancer #cancer #prostatitis #psa #prostate #urology #oncology #drawnandcoded #iwillbeatthis

Before a biopsy diagnosed me with prostate cancer my doctors all thought that I had prostatitis, a painful inflammation of the prostate. The symptoms of prostatitis are very similar to a urinary tract infection – frequent urination, burning while urinating, interrupted urine stream, pelvic pain, and so on. The big difference is that while a urinary tract infection can generally be cured with antibiotics, the majority of cases of prostatitis cannot. Chronic prostatitis, or prostatitis that lasts longer than three months is sometimes called Chronic Pelvic Pain Syndrome ( CPPS ). 

Here’s the thing. Chronic pain makes you anxious, particularly when you don’t know what is causing it.

My doctor prescribed 60-days worth of antibiotics including Doxycycline, Ciprofloaxcin, Bactrim, and Clindamycin. None of these worked. Next, he prescribed me physical therapy to help relieve tension. This along with reading books on self-help, psychosomatic pain, and CPPS helped, but my anxiety still worsened. It got to the point where I was anxious about being anxious – a vicious circle. Anxiety, I realized caused me to tense up which resulted in additional pain which ( you guessed it ) caused me to get even more anxious. Inflamed prostates, like porcupines, don’t like being “squeezed”. Before long I was having trouble getting out of bed and going outside without having an anxiety attack. 

So, I saw a psychiatrist and was prescribed Lexapro, an anxiety medication belonging to a group of medications known as SSRIs, or “Selective serotonin reuptake inhibitors”. An SSRI increases the serotonin uptake in your brain. Serotonin is a chemical that  improves well being and happiness. SSRIs need to be taken for a few weeks before they start working. During that time your symptoms can unfortunately, worsen. Conversely, when you stop taking an SSRI you risk going through withdrawal symptoms – especially if you quit cold turkey. 

So, by now you’re probably wondering where the heck I am going with this.

Be aware of your treatments and give yourself time to wean off of or change medications.

Well, as it turns out SSRIs don’t play well with hormone therapy drugs such as Firmagon. When used together they have what is known as a ”drug interaction”. Unlike the combination of foods like say, peanut butter and jelly, combining drugs isn’t always a good thing. Combining Lexapro and Firmagon for example, can cause a potentially serious irregular heartbeat. 

Yeah, let’s just avoid that one, m’kay.

As cancer treatment trumps anxiety the Lexapro sadly, must go. I talked to my pharmacist about how to go about weaning myself off Lexapro. She said that the conventional method is to halve the dosage the first week and then to skip days with the halved dosage the next week. She also warned that stopping Lexapro, in addition to removing all of the stops on whatever anxiety it was keeping in check in the first place, has its own list of side effects as well : anxiety, depression, mood swings and so on. She did not recommend abruptly stopping.

So, what’s the good news? Well, I’m reaching here but to me it seems like the side effects of hormone therapy and Lexapro withdrawal are well, somewhat complementary. I mean what goes better with mood swings and depression than hot flashes, right? Fortunately, my doctor suggested that there are alternative anxiety medications that I can take. At my next appointment I will be sure to ask him.

Tonight I am going to start halving my Lexapro tablets. If my wife, Jodie has her way with the insurance company I will likely start hormone therapy within the next day or two as well. The next couple of weeks should be entertaining to say the least. Wish me ( and everyone in my immediate vicinity ) luck…

Take care. Stay healthy. Live life.

-Scott

Previous : Treatment Options

Next : Renewed Interest

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The big question when it comes to cancer – any cancer is if and where the cancer has spread. Localized cancer and metastasized cancer are treated very differently. As treatments are inevitably harsh on the patients’ body, a doctor wants to make sure that the treatment fits the disease. For me that meant more blood work, another CT Scan, this time of my chest, and an MRI Scan. Although I was also supposed to get either a PSMA or Axumin Scan done as well, availability and insurance approval has pushed those out to a later date. 

I covered the blood work as well as CT Scans in prior posts so I’ll skip the details. MRI Scans, however, are uncharted territory and deserve some attention.

Dr. Stewart wanted an MRI Scan performed on my groin to get a better look at my prostate and nearby lymph nodes. I asked him what was wrong with the CT Scan that I had performed just a few weeks prior and was told that an MRI Scan produces more detailed images. MRI stands for “Magnetic resonance imaging”. An MRI uses a strong magnetic field to manipulate the atoms in your body. Radio waves are then used to create an image of the excited atoms. Fortunately, MRI Scans do not use radiation so they are relatively safe.

Another interesting factoid : Chemotherapy and recent tattoos (within 30 days) are a no-no for MRI. While talking to the MRI receptionist I found out that the electromagnets heat up the ink and/or chemicals. Naturally, pacemakers and any metal objects make you ineligible as well. I’m so glad I didn’t get that tattoo on my ass that says, “F*ck Cancer”. 

Prior to my procedure the MRI technician guided me to the bathroom and in broken English advised me that, “Clean balls will help the machine produce a better image.” She then turned and walked away leaving my wife and I to ponder the logistics of such a task given that the bathroom had no shower. We eventually decided that the technician actually said “clean bowels”. After complying I met the technician in the MRI room. 

So what’s an MRI like? If you’re slim and not claustrophobic an MRI is relatively uneventful. If the opposite is true, then God help you.

You literally lie perfectly still in a long narrow tube for about an hour with your nose mere inches from the ceiling. It would be peaceful if it weren’t for the constant loud hum and banging of the machine’s electromagnets toggling on and off.

Let’s take a step back for a moment to tally up everything. So far I’ve had :

2 CT Scans.

1 MRI.

4 PSA Tests.

2 Ultrasounds.

1 Genetic screening of my blood and biopsy.

1 Bacterial analysis of my semen.

1 Prostate Biopsy.

3 Digital Rectal Exams (DRE).

8 Prescriptions; 4 of which were for Antibiotics

30 Appointments with Doctors and Therapists.

That is a lot of information for an organ that started off the size of a walnut. Given all that information I’ve realized one important thing and that is :

You should always procure copies of your medical records including any procedures or scans that you have had done. 

For prostate cancer, and I assume any type of chronic disease you will likely want to consult with doctors across different networks. Every single one of those doctors will want to see these records. The problem is hospitals are terrible at sharing. This is done to protect you, the patient. HIPPA, or “Health Insurance Portability and Accountability” Act of 2003 made the process a lot easier but 16 years later, hospitals are still struggling to upgrade their systems to adhere to the new regulations. Record transfers between networks typically require a faxed ( yes, fax ) request. 

The images produced by CT, MRI, and Bone Scans are even more cumbersome. 

In software development we have a term called “Sneaker Net”. Prior to the internet and networked computers the only way to copy a file from one computer to another was to put the file on a disk and physically walk the disk between the computers. Although hospitals are digitizing their records, they are doing it at a glacial pace. While some records can be emailed, images produced by scans must be copied to a CD. This CD must then be walked, or “Sneaker Net”’ to the requesting hospital. I spent two hours on Wednesday doing exactly this to get my original CT and Bone Scans from Scripps to UCSD.

On Thursdays UCSD has their “Tumor Board” where Dr. Stewart presented my case to 15 urologists, oncologists, and surgeons to brainstorm how to treat my cancer. 

Following the dismissal of the board I met with Dr. Stewart to go over the treatment options they had discussed.  My mom and my wife, Jodie joined me in an hour-and-a-half discussion.

First the good news. The CT Scan of my chest came back clear. There was no evidence of the cancer metastasizing there. In addition, the MRI scan showed my prostate and enlarged lymph node pretty much unchanged since my first CT scan from a few weeks ago.

Now the not so good news. My prostate and lymph node were still teeming with prostate cancer. Furthermore, my blood test indicated that my PSA was climbing. Prior to my biopsy it had been in the high 70’s. Now it was 103.  Dr. Stewart told me that due to my young age, the aggressiveness of my cancer, and my high PSA that my situation did not fit the typical treatment protocol. He wanted to think “outside of the box” and be very aggressive with my treatment. In short, the “Tumor Board” couldn’t make a unanimous decision. Instead, they came up with three treatment options :

1. Radiation treatment plus two years of hormone therapy.
2. Surgery followed by radiation treatment and hormone therapy.
3. Two years of hormone therapy, six cycles of chemotherapy, and 6 months of radiation treatment.

You’ll notice that the only commonality between all three treatments is hormone therapy. Hormone therapy is used in conjunction with radiation, chemotherapy, and surgery. It’s complementary and doesn’t affect the administering of the other treatments. As such it was the main topic of discussion for our meeting and the first treatment that Dr. Stewart wanted to administer. 

Hormone therapy should really be called anti-hormone therapy as it is done to deprive the body of testosterone. 

As I mentioned in a prior post, testosterone feeds prostate cancer. By doing away with testosterone you can starve the prostate cancer cells – at least for a while. Here’s the rub – hormone therapy doesn’t work forever. Eventually prostate cancer cells gain the ability to produce their own testosterone, or are no longer dependent on it. Hormone therapy is also known as “androgen deprivation therapy, or ADT. 

The side effects of hormone therapy are the same as if you were castrated.  It is also referred to as “chemical castration”.

In fact, the alternative to hormone therapy is the removal of the tesicles which is known as an “orchiectomy”. Fortunately, this is seldom done anymore but that didn’t stop Jodie and I from joking about the potential upside of prosthetics. 

“Would you go larger, say the male equivalent of a DD bra?”, I joked.

“Or, would you go smaller to make everything else look larger?”, Jodie retorted.

Fortunately, Dr. Stewart and my mom had a good sense of humor throughout this discussion. 

Now for the side effects. They include fatigue, muscle loss, weight gain, osteoporosis, libido, mood swings, breast tenderness, and hot flashes. I joked with Jodie that if I could of delayed my cancer for another 15 years that we could of gone through menopause together.

Yeah, so the side effects suck. It sounds like weight lifting as well as increasing my vitamin intake will help. Given that the treatment is to be administered over two years well, it’s going to be a long two years. 

Lupron is the most common medication administered for ADT. It is administered as a shot every three months. However, given that my PSA is rising Dr. Stewart decided to put me on a different medication called Degarelix, also known as (ahem) Firmagon. Dr. Stewart chuckled at this and we caught on immediately.  

“You’ve got to be kidding me. Who names a drug that saps your testosterone FIRMagon?”, I asked. “Someone in marketing has a sick sense of humor.”

Dr. Stewart didn’t really have much of an answer but explained that Flacidagon, unlike Lupron does not cause your testosterone levels to temporarily spike and would have a better chance of keeping my cancer in check.

It was then that Dr. Stewart told us that testosterone, in addition to being produced by the testicles is also produced by the adrenal glands. As such he also wanted to prescribe me another medication called Zytiga. Up until this point I had not asked about the cost of all of the medications but Zytiga rang a bell. I vaguely remembered coming across it while browsing the web.

“Um. So, how much does Zytiga cost?”, I asked.

When Dr. Stewart deflected by talking about insurance approval and financial assistance I knew that I had struck a chord. He eventually told me that if I had to pay more than $50 per month that I could probably work something out with financial assistance. Naturally my curiosity got the better of me. After our appointment I consulted Google and realized that Zytiga costs ( ready for this? ) roughly $10,000 per month.

Ouch.

Zytiga, in addition to draining the pocketbook can also affect your heart and liver. Dr. Stewart told me that while I was taking it I would need to have frequent blood screenings and monitor my blood pressure daily. 

It’s going to be a long two years.

Even though there has been no evidence thus far of my cancer metastasizing outside my pelvic region I get the feeling that Dr. Stuart nor the “Tumor Board” are convinced. The deciding factor I believe, rests on the outcome of my pending PSMA or Axumin Scan. What’s the holdup? Well, the PSMA machine can only be performed at UCLA and is booked up for over a month. And then of course, there’s the approval required by my insurance company.

It’s inevitable that insurance would eventually come up in a discussion over cancer. 

Cancer treatments are expensive. Because of this, I’ve realized that every medication and procedure needs explicit approval from my insurance company. Unfortunately, the approval process takes roughly three days. If an approval is requested on say, a three day weekend you’re looking at a significantly longer delay. When dealing with cancer there is a sense of unnerving urgency, too, like you’re half expecting an alien to burst through your stomach if you delay too long. 

Fortunately, I have my wife, Jodie.

As soon as she realized that insurance was holding up my treatment she was on the phone with them. She doesn’t take no for an answer, either.  Hopefully early next week I will get my first injection of hormone therapy and I will finally begin the initial stage of my treatment.

Take care. Stay healthy. Live life.

-Scott

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Next : Drug Interactions

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