Prescription for Nerve Pain

I’ve never been a fan of running to the doctor to ask for magic prescription pills that will cure whatever ails me, so when I go to the doctor and they ask this 62-year old patient what prescription medications I’m taking, they look at me in disbelief when I say, “None.” “C’mon. You’ve got to be taking something!” “Nope.” “Really?!?”

That doesn’t mean that I won’t take prescription medications when they’re truly needed. Once prescribed, I’m pretty religious about following the instructions closely.

Well, the prescription that’s supposed to alleviate the nerve pain in my leg from the bulging disc finally arrived today. I opened the package (washed and sanitized my hands) and pulled out the instructions/guidelines—all 88 inches/223 cm of them:

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And now you know why I’m not keen on taking prescription meds!

The primary purpose of the drug is as an antidepressant, but it has shown that it has an impact on nerve pain as well. (I prefer not to name the specific medication here.)

The drug can, “improve your mood, sleep, appetite, and energy level and decrease pain due to certain medical conditions.” But then you get to the side effects section and learn that “nausea, dry mouth, constipation, loss of appetite [huh??], tiredness [again, huh??], drowsiness, or increased sweating may occur.”  Oh, yeah. Throw in “dizziness or lightheadedness or falling may occur.” Yippee! There’s a whole laundry list of other side effects that I won’t transcribe here, but the “vomit like coffee grounds, hallucinations, rainbows around lights at night, and blurred vision” sounded particularly interesting.

This also appears to be one of those medications that, once you start it, you stay on it for good. If you have to come off it, it has to be done under supervision and you’re weaned off it over time. I’m not keen about that.

Nonetheless, the pain in my leg is such that I’ll give this a try. Most days, walking without pain really isn’t possible, and I’m beginning to have my sleep quality impacted, because there’s only one or two positions where I’m comfortable in bed. The doctor is trained; I’m not.

One of the reasons that I’m so reluctant to get on prescription medications stems from what my mother went through near the end of her life. Doctors had her on so many different medications that the interactions between them and the side effects drove her to the point of playing detective. She started doing experiments by modifying when she would take them or stopping medications altogether to see if the side effects would disappear. That is not a smart thing to do and something I do not recommend. There were times for her that the medications introduced new problems that weren’t there before. Not good.

I’m supposed to take one pill at bedtime for the first 7 days, then bump it up to two pills at bedtime from there on. I’ll start tomorrow (Sunday) night, that way, if I have any issues with side effects, the clinic will be open Monday to call in. I hope it does the trick for my nerve pain without making anything worse. Stay tuned.


San Diego remains on stay-at-home restrictions in response to the COVID-19 virus, but I did take my 1997 Ford F-150 pickup truck out for a spin today. It’s been sitting in the garage for nearly a month, and I needed to run it to keep the battery charged. I took an hour-long ride around town and never left the vehicle, dutifully maintaining my “social isolation.”

Stay healthy! Stay home!

Day 2,758 – Heads or Tails

IMG_5341That’s what it’s coming down to, or so it seems. Using the ultimate “executive decision-making aid” to determine what I’m going to do.

What brought this on? Another email exchange between me and my radiation oncologist.

Over the weekend, a few more questions popped into my head and I wanted to get his response. Yesterday, I fired off an email asking if any advances in radiation delivery technology or methods in the last 10-15 years improved the side effect outcomes over the studies he shared with me. In short, the answer was no—there were no appreciable changes.

Of greater interest to me was his interpretation of the Freedland study, which shows that I can do nothing and have a 94% chance of being around 15 years from now. His response:

I am familiar with the study you included, and it is one of many retrospective reviews on this subject. The authors preformed a retrospective review on a total 379 patients over period of 18 years from 1982 – 2000. Therefore, although the data are valuable and contribute to the literature, I consider it (as well as the many other studies on this subject) thought provoking.

Perhaps I’m reading too much between the lines, but his last sentence translates into “skeptical of the study” to me. He continued:

The bottom line is that you have a biochemical recurrence with a low, slowly rising PSA.  Do you need radiation treatment now, sometime in the future or never?  I don’t have a definitive answer to that question, but there are data to suggest “the earlier the better” and other data to suggest treatment might not be needed at all.  It depends on your point of view…

Am I upset by that response? Not really. It’s pretty much what I expected it to be, and that tells me that my research has been quite thorough. He and I both landed at the same place.

Will it make deciding my course of action any easier? Hell no. But it does reinforce that it’s my decision, and my decision alone.

Now where did I put those Eisenhower dollar coins again???

Day 2,754 – Researching Salvage Radiation Therapy—Again

It’s 7:30 p.m. on the Saturday of a three-day holiday weekend in the United States, and I’m reading articles on salvage radiation therapy. Who said prostate cancer wasn’t fun?!?

I did come across this informative article from the Journal of Clinical Oncology published in May 2007:

Predicting the Outcome of Salvage Radiation Therapy for Recurrent Prostate Cancer After Radical Prostatectomy

The authors set out to create a nomogram that predicted the “probability of cancer control at 6 years after SRT for PSA-defined recurrence,” and they speak at length about the variables used in their nomogram, as well as its limitations.

I plugged my stats into their nomogram and came up with a 70% probability that I won’t see any progression at six years. That’s right in line with what the radiation oncologist told me. (The nomogram is a little clunky to use, as it’s a graphical scale that you have to draw lines through to determine your score. I’d much rather have fields to enter on an online form that calculates it more precisely.)

There was one paragraph that talked about side effects of SRT that really caught my attention:

The potential for morbidity resulting from radiation therapy argues against its indiscriminate use in the salvage setting. Mild to moderate acute rectal and genitourinary toxicity is seen in the majority of patients, but the reported incidence of acute grade 3 to 4 complications is less than 4%.4,6,9,14,21,36 Late grade 1 to 2 rectal and genitourinary toxicity are reported in 5% to 20% of patients, and late grade 3 toxicity is less than 4%.3,4,6,8,11,21 Although rare, pelvic radiation therapy for prostate cancer is associated with an increased risk of secondary pelvic malignancies.40 Postprostatectomy radiotherapy does not appear to significantly increase the risk of urinary incontinence,3,4,6,14,21,41 but we must presume that it has some adverse effect on erectile function on the basis of the data from primary radiation therapy series. The nomogram can be used to restrict SRT to those patients most likely to benefit and avoid treatment-related morbidity in those predicted to have a low probability of a long-term benefit.

That 5% to 20% range for late grade 1 to 2 rectal and genitourinary toxicities made me go, “Hmmm…” Not quite the “single digits” probabilities that my radiation oncologist said.

After reading a number of the articles in the footnotes and listed on the “We recommend” column of the website, it’s apparent from most of them that starting SRT early is the way to go. It’s also apparent that the probability of being progression free at six years varies considerably from the 30% range to the 77% range depending on your PSA doubling time, PSA level, Gleason score, time to recurrence, and post-surgery pathology. But we already knew that.

This also caught my eye:

A rising PSA alone is not justification for initiating salvage therapy because patients with PSA recurrence are as likely to die as a result of competing causes as they are of prostate cancer.1 To determine the need for salvage therapy, we suggest using one of several existing tools to estimate the probability of developing metastatic disease or cancer-specific mortality.2,22,23 Patients at high risk of progression to these clinically significant events and/or a long life expectancy should be assessed for SRT using our nomogram.

Digging into the three footnotes listed, two are studies that I’ve already referred to in earlier posts—Pound and Freedland—and both suggest that it could take a very long time for the cancer to metastasize. The third study referenced, Predictors of Prostate Cancer–Specific Mortality After Radical Prostatectomy or Radiation Therapy, also reinforces that notion.

We’re right back where we started from: Zap early with an average 50-50 shot of it being effective (with the 4%-20% chance of long-term side effects) or do nothing but monitor.

I may send some of these links to my radiation oncologist on Tuesday and ask, “Which of these studies do you put the most stock in, and why?” and see what he says. Could be interesting.

Well that’s enough fun with cancer on a Saturday night. I’ll keep you posted on any new research findings or developments with the doctor.

Day 2,747 – Side Effects of Salvage Radiation Therapy

During my conversation with the radiation oncologist on Thursday, a big part of the discussion was on the long-term side effects of salvage radiation therapy. He stated that the probability of long-term urinary or rectal side effects was “in the single digits.” That reinforced my own understanding, but after the meeting, it occurred to me that we didn’t talk about the severity of those side effects in any detail.

I fired off an email to him on Friday asking, in essence, of those with long-term urinary and rectal side effects, what percent of those are mild, moderate, or severe?

He replied in a matter of hours and said that he couldn’t respond using the terminology in my email (I gave him definitions of what each of those meant in my own mind). Instead, he referred me to the Common Terminology Criteria for Adverse Events (CTCAE) used in standardizing terminology used in research across the globe. He referred me to “cystitis” and “proctitis” to see their definitions for grades 1 through 5. (Grade 1 was the least impactful; Grade 5 was typically death.)

The doctor also shared side effect data directly pulled from the manuscripts of 3 major randomized trials in post-prostatectomy patients. He didn’t provide the links—just the text—so I used the Google machine to come up with the links/articles. It’s interesting to note that all three are focused more on adjuvant radiation therapy than salvage therapy, but I suppose getting zapped for one is pretty much the same as getting zapped for the other.

 

Bolla et al, Lancet, Vol 366, Aug 2005

Late effects of rectal and bladder grade 3 or higher were only slightly increased in the XRT group vs. the observation group: 4.2% vs. 2.6%.

Wiegel et al, JCO, 2009

There was only one event of grade 3 toxicity (bladder). No grade 4 events were recorded. There were three events (2%) for grade 2 genitourinary adverse effects in the RT arm compared with none in the other arms. In addition, two grade 2 GI adverse effects (1.4%) were seen in the RT arm compared with none in the other arms.

It was interesting to note that the doctor omitted the second half of that paragraph from the original study:

Altogether, the cumulative rate of adverse effects for bladder and rectum (≥ grade 1) was 21.9% in the RT arm and 3.7% in the wait-and-see group (P < .0001; Appendix Fig A2, online only). One urethral stricture occurred in arm A and two occurred in arm B. Incontinence was not assessed, because it is not mentioned in the RTOG/EORTC scoring scheme.

Thompson et al, J Urology, 2009

We conducted a companion quality of life study in 217 men randomized to S8794 with assessments at baseline, 6 weeks, 6 months and annually for 5 years. A strength of this analysis was the inclusion of a 6-week assessment, designed to capture the side effects of radiotherapy at their peak. Tenderness and urgency of bowel movements were significantly more common at the 6-week point (47% vs 5%) in the radiotherapy group but by 2 years there was little difference between the groups. Urinary frequency was more commonly seen in the radiation group but there was no difference in the rate of erectile dysfunction (common in both groups) between groups. Global assessment of quality of life, while initially worse in the adjuvant radiotherapy group, became similar by year 2 and was increasingly superior in the radiotherapy group during the following 3 years. This gradual switch toward a superior quality of life in the adjuvant radiotherapy group should be examined in the context of the increased rates of PSA recurrence, salvage radiotherapy and hormonal therapy in the observation group, all of which have negative impacts on quality of life.

I’ve only skimmed the full studies at the moment, and I’ll come back to them in a day or two. On the surface, however, the numbers have eased my fear of long-term side effects a tad.

Right now, I just need to get away from the topic for a few hours and have some fun. Time to go out and play…

Stay tuned.

Month 86 – Struggling

First things, first. I’m struggling to thaw out after spending five days in frigid (-4° F / -20° C) Chicago with my sister and her family this past weekend. You may well be asking, “Who in their right mind flies from San Diego to Chicago in January?!?” Sadly, that would be me.

I contemplated returning for Christmas but had sticker shock on the cost of the airfare, so I opted to return for my birthday last week at a quarter of the cost. This birthday was one of those annoying milestone birthdays—the 30th anniversary of my 30th birthday—and that definitely warranted an appropriate celebration. Of course, anyone in our situation knows that any birthday you’re around to celebrate is a good birthday.

But what I’m really struggling with is this whole notion of recurrence and what to do about it.

I’d like to think that throughout my life I’ve been a generally optimistic, my glass is half full kind of guy, but one with a healthy dose of reality attached to that optimism. Hope for the best, plan for the worst, and recognize the inevitable. I understand the value of a positive attitude, however, I’m increasingly finding that I have a diminishing tolerance of false optimism. “You got this. You’re going to kick cancer’s ass!” Really? Are you sure about that? How do you know? And at what cost? The $109,989.11 invested in my prostatectomy (the real number, mostly paid by the insurance company) doesn’t seem to be paying off.

The costs that I’m talking about aren’t just financial, either. There are emotional and physical costs as well.

With salvage radiation therapy (SRT)—the only option that still has a curative potential—there’s the risk of increased incontinence, loss of sexual function, bowel control issues, and fatigue during the treatments. Chatting with other patients in online forums or through their own blogs, some of these issues don’t manifest themselves until well after the SRT treatments end. And all of this for a 30%-55% chance of having no evidence of disease five or six years after SRT ends.

With androgen deprivation therapy (ADT) (hormone therapy), there’s the loss of libido and sexual function, mood swings impacting relationships, hot flashes, loss of muscle mass, increased risk of osteoporosis, and significant depression. Of course, ADT is not curative, so you get to suffer through those substantial side effects for a longer period because ADT prolongs your life.

It’s easy to get excited when you see your PSA plummet after starting ADT, as it impacts those androgen-dependent cancer cells. But guess what? There are also androgen-independent cells floating around that the ADT won’t impact at all, and it’s those cells that will start driving the PSA back up again and that will ultimately kick your ass.

Being a data-driven numbers guy, I’m also struggling with how to quantify these potential impacts on quality of life.

When you’re in an online or even in-person support group, you have to remember that there’s a self-selection bias taking place that will skew your perspective to the bad. Think about it. Almost everyone who’s in the group is there because they’re at some stage of dealing with this disease and having issues that need answers. Who you don’t see are those patients who are outside of the group who have success stories in dealing with their cancer and have simply stepped away from that chapter of their life.

For me, I want to know the ratio of who’s in the group versus those who are outside the group. Is it like an iceberg with 10% of the patients in the group being the visible ones and 90% of the success stories out of sight? Is it 50-50? 30-70? 60-40? Knowing the answer to that helps me understand the risks better.

I’ve stumbled across a few studies that talk about the likelihood of potential side effects from SRT but I would like to see more. The risks do seem to be relatively low from what I recall and from what my doctor is telling me, but forgive me if I’m skittish about accepting even low risk given where I’m at. (My surgeon forewarned me that there was a 20% chance the cancer would return; I guess I’m just not feeling all that lucky at the moment given my track record.)

Similarly, with ADT, it seems that most everyone suffers some form of side effects, but each person is impacted differently. Again, the numbers guy in me would love to see some sort of study that says, “While on ADT, my quality of life has been reduced by __% in each of the following areas…” I’ve heard patients say that they are “just a shell of the person I was once” or that the ADT has them remaining in bed 20 hours a day. Of course, there are others who seem to have only mild side effects with negligible impact on their daily lives. What’s the distribution like between those two extremes? Knowing the answer to that would be very helpful in decision making.

Given all that, I’m struggling with one more thing, and it may scare or even offend some readers.

“You’ve got plenty to live for. You need to fight. You need to be strong. You need to be a warrior and defeat this disease,”—all things that I’ve heard along the way. There’s this pervasive attitude that other patients, family members, and the healthcare system have that we must do everything we can to go on living for as long as we can at all costs.

Why?

Please don’t panic and think that I’m ready to check out tomorrow. I’m not. There is plenty to live for, and that is precisely why I ask the question.

Is being a shell of yourself and staying in bed 20 hours a day really living, or is it merely existing? Would you rather live a more full, active life for 8-10 years, or merely exist for 20 years?

What about the impact on your significant other and those closest to you? Yes, they’ll be by your side every step of the way. Do you think they would rather remember your last years as being present and engaged for 8-10 years, or withdrawn, moody, depressed, and barely capable of functioning for 20 years?

What about the financial impact on your family? Would you rather take a few bucket list trips with your significant other and family in your remaining 8-10 years, or would you rather take out a second mortgage on your home to pay for the drugs and latest technology tests that will keep you existing for 20 years, placing a financial burden on those who survive you?

Before you send me all sorts of hate mail, I know those are extreme examples and that there are many shades of gray between the extremes, but, in the absence of studies or data that mitigate those examples, that’s what’s rattling around inside my analytical, pragmatic mind at the moment—right or wrong. It’s just the way I’m wired. The good news is that I have time to find those studies and data that hopefully will give me the information I feel I need to make decisions going forward.

It takes strength to go through the radiation, ADT, and chemotherapy if that’s the path that you choose. It also, however, takes strength to say, “No. I’d rather live without those debilitating side effects for as long as I can, even if it means it will be for a shorter period of time.”

Thirteen years ago, my mother was diagnosed with mesothelioma, the incurable cancer associated with asbestos exposure. She was given the option to participate in some clinical trials that may have extended her life three to twelve months, but she refused. “I don’t want to be someone’s pin cushion when the end result will be the same.” She wanted to retain control over her life for as long as she could, and she did so to the best of her ability. Sadly, though, it was only a matter of months before she died, but she went out on her own terms.

That’s how you kick cancer’s ass.

I would like to think that I’ll be able to do the same.


Just a note. Because I knew I would be traveling, I wrote this post over a week ago. While I was in Chicago, a fellow prostate cancer patient, Mark Bradford, replied to a question in an online support group, and it’s complementary to the topic of this post. The question posed was, “At what point do you get tired of fighting?” He replied:

I dislike framing this as a fight. You have a disease, and you seek treatment for [it] till you decide to stop. Being in treatment is not fighting and stopping treatment is not giving up. I was inoperable from the beginning and stage 4 soon after. My outcome was certain, so my priority was quality of life over quantity. I did HT [hormone therapy] until it stopped working, and cannabis oil throughout. I refused chemo as it would not cure me or significantly extend my life. Don’t let anyone say you’re giving up if you decide it’s time to stop treatment. I could not afford alternatives, so my choices were limited. If you have the means, do whatever seems right to you. But accepting reality is not giving up.

I don’t think that I could agree more with Mark’s comment about framing this as a fight and about being in treatment or stopping treatment.

Mark is nearing the end of his life, and you can read his very poignant blog, God’s 2 by 4: Mark Bradford’s Cancer Journal.

Another patient, Dan Cole, answered simply and succinctly: “Live the life you choose to live. That is winning the fight.”

I know I’m getting way ahead of where I should be given my current status but, if nothing else, this disease certainly causes you to prematurely contemplate your own mortality.

Month 71 – More Studies on Early Salvage Radiation Therapy

With the change in my PSA over the last year, you can bet that I’ve been seeking every bit of information as to what it means and what to do about it. One of my go-to resources for the latest information in the field has been The “New” Prostate Cancer Info Link.

On 21 September, they published the following blog post that really piqued my interest:

Very early salvage radiation has up to fourfold better outcomes and saves lives

It’s certainly a topic of discussion for my next urologist visit in December. By the study’s definition, I’m still in the “very early” group—the group with the best survival if salvage radiation therapy (SRT) is started while I’m still in that group.

If we have to go down that path, my biggest concern with starting SRT is knowing that we’re actually radiating where the cancer is located. That concern is amplified if imaging can’t show where the cancer’s actually at, and we just radiate the prostatic bed because that’s what makes the most sense. Why risk some long-term, potentially nasty side effects on something so uncertain? (Yes, I know nothing is certain dealing with cancer.)

Of course, this is just one study and making a decision on it alone would probably be unwise.

We’ll just have to wait for the December PSA readings to come back and go from there.


On a happier note, I took a little drive through the country last week to tackle a few things on my travel bucket list: October Odyssey: The Mountain West. Check it out if you want to see what it was all about.

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Cimarron Canyon State Park, New Mexico