$5k PET/CT Full Body Scan with Auxumin Contrast - Results, Thoughts. Decisions.

Yesterday I went to a facility and had a full body PET/CT scan, this time with the $5000 addition of a radiotracer called Auxumin that specifically hitches itself to PCa cells wherever they are in the body. It exposed me to additional radiation which I probably don’t need as it’s gotta be my 10th or 12th scan (14th?! More than 10 anyway Ha!) This is the first one where they injected me with radioactive tracers/compounds and then gave me the warning that I’d literally be radioactive for the next 24 hours and to stay away from other folks, especially small children and pregnant women during said hours. True story.

Anyway.

The report came back quickly today and Dr. Lo posted it for me. We also arranged for a phone visit late this afternoon as opposed to me waiting for 10 days to go to his office.

 A couple of quick definitions; radiotracer is the stuff that was injected into me the IV right before the scan. It’s an expensive radio isotope that hitches itself specifically to PCa cells. Pulmonary modules are, given my history, PCa Mets that have hit my lungs but aren’t large enough for the radiotracer to latch onto

“Study Result

Impression

IMPRESSION:

1. Abnormal radiotracer uptake throughout the prostate gland, consistent with tumor.

2. Radiotracer avid pelvic lymphadenopathy, increased in size from 2/15/2020.

3. Subcentimeter pulmonary nodules measuring up to 4 mm, new from 11/5/2018, without focal radiotracer uptake at this time, however, raising concern for recurrent pulmonary metastases.

4. No additional sites of distant metastatic disease identified at this time.”

So, you may be asking yourself what does all that mean? Let me try to explain.

Number 4: No additional sites of distant metastatic disease identified at this time.  This is the absolute best news in the report! The last thing I need is the cancer landing on my liver or in my bones or in my brain. Truly good news, Truly good news!

Number 1: Abnormal radiotracer uptake throughout the prostate gland, consistent with tumor.

I was surprised to see the gland even mentioned as I’ve been under the impression we had pretty well eradicated it along with the extensions that were coming off of it. Turns out that’s not the case which is why the radiologist mentioned it. Despite my radiation efforts of a year ago, there’s still a lot of tumor growing in what’s left of my prostate. 

Number 2:  Radiotracer avid pelvic lymphadenopathy, increased in size from 2/15/2020.

This really came as no surprise as we knew a couple months ago from the MRI that the lymph nodes in the pelvis were, “bulky“ as stated by the MRI radiologist. Now they light up as hotspots filled with PCa cells hence the word “avid”,  and are growing rapidly. This is not good news.

Number 3: Subcentimeter pulmonary nodules measuring up to 4 mm, new from 11/5/2018, without focal radiotracer uptake at this time, however, raising concern for recurrent pulmonary metastases.

When I was diagnosed six years ago, the reason my cancer was stage four was because it had already metastasized to my lungs. Six rounds of poisonous  chemotherapy and eight months of hormone deprivation took care of the mets in my lungs then. But, they’re coming back.

So what all this means, based on everything I know about my history, based on the conversation with my trusted oncologist this afternoon, is that I’ve reached the point where there’s nothing Western medicine can do anymore that doesn’t further erode my already crappy physical state.  I’ve also reached the point where disease is advancing more rapidly and now on three fronts.

He offered, and I agreed, to go see the researcher at UCSF one more time as well as Dr. Lo’s associate, radiation oncologist Dr. Chao, and get their feedback. The researcher at UCSF can let me know if there are any new studies available that don’t involve things to which I will not subject myself. Dr. Chao can advise me if there’s anything radiation can do or, probably more importantly, how we go about using radiation for palliative reasons as the cancer progresses (i.e. bone mets)

Since the radiation last March a year ago, I’ve lost right at 50 pounds without even trying. The neuropathy in my hands and feet is a never absent and always a painful presence in my life. Fatigue is a constant battle. It makes no difference how much or little I’ve slept. Yes, I’m tired. I’m really, really tired.

I get winded very easily. Focusing on more than one thing is virtually impossible. My hands feel shaky at times and the physician’s comment today was, “You are symptomatic.”

Yes, yes I am.

And so the process moves on down the road.

An Oncologist Talks About Stage 4 PCa with Mets and End of Life

I found this via a website called "Quora". 

One reason I moved to California and am working so hard to stay here is because California has a law known as the End of Life Option Act.  This allows a terminally ill patient to end their own life with a legally prescribed lethal amount of barbiturates.

Because I don't plan to suffer away like what is described by this oncologist:

Gary Larson, MD - Have Treated Over 10,000 Prostate Cancer Patients

Answered Feb 22, 2018 · Upvoted by Margarita Orlova, I am biologist in profession and a frequent patient myself

I currently have a patient taking the equivalent of 3,500 percocets per month to control the pain from stage IV prostate cancer. (1) PEOPLE ARE FOND OF USING THE TRITE EXPRESSION THAT MOST MEN DIE WITH PROSTATE CANCER RATHER THAN OF IT. THIS IS WHAT IT CAN BE LIKE TO DIE WITH IT.

Prostate cancer preferentially spreads to the bones, although now that stage IV prostate cancer patients are living longer with chemotherapy and newer treatment modalities, we are seeing spread to visceral organs as well (lung, liver, brain, etc.). They also have more time to develop the conditions described below.

Bone metastases are usually asymptomatic when first discovered, but over time, they erode the healthy bone, destroying nerves, and causing excruciating pain. Men will often have dozens or even a hundred metastatic sites that each hurt just like a broken bone, not to mention compressing spinal nerves, causing pain in the entire distribution of those nerves. Some bones do break in the process.

Skull base metastases deserve special mention. Compressing the cranial nerves as they exit the skull base, may paralyze cranial nerves causing the inability to use the eye muscles, facial muscles or swallowing muscles. If one’s facial muscles are paralyzed, they can’t blink, which leads to keratitis and blindness (unless the eyelid is partially sewn shut - or weights are surgically implanted in the eyelid to allow it go down all the way. If one can’t swallow, they need a feeding tube (these men are fully awake and functional, but will starve to death without the ability to swallow food - not the situation where a feeding tube is placed to keep comatose patients alive, which is a completely different issue). Not being able to swallow saliva means they must spit 1–2 liters of it every day, or have a fistula placed so it drains out of their neck. Compression of the trigeminal nerves cause pain in the distribution of that branch or branches - it’s like having a toothache in all your teeth at once - or that same intensity of pain in the upper part of the face.

While cancer spreads to the rest of the body, it’s also progressing in the pelvis, where it started. Bladder invasion causes intractable spasms and a constant painful feeling of needing to urinate. A catheter becomes necessary - usually placed through the abdominal wall directly into the bladder, which is less uncomfortable than having it go through the penis for months or years. The cancer can grow posteriorly to close off the rectum, requiring a colostomy - or just causing death from peritonitis. (A colostomy doesn’t do anything about the constant feeling that you have a butcher knife stuck up your ass.) Obstruction of the ureters requires nephrostomies (urine draining out of the back - from where the kidneys are). A well informed patient may refuse nephrostomies and die a relative painless death from renal failure in the next few weeks or months.

What about Hospice, you might ask? Hospice is generally reserved for patients with a 6 month life expectancy - these men may live for a year or two with these problems.

Not all patients get all these symptoms, but just pick a few of them and imagine living with them for 2–3 years.

Many men who die “with” prostate cancer may have liver failure, bone marrow failure, heart failure, renal failure, etc. listed as the immediate cause of death on their death certificate. Listing these diagnoses as being secondary to prostate cancer may or may not result in them being counted as a prostate cancer deaths.

The 27,000 men officially listed as dying FROM prostate cancer last year may, in many respects, be the lucky ones. They have come to the end of living with it.

You can see why I support PSA screening for prostate cancer. 90% of the men who are cured of prostate cancer had their disease caught early by screening. Those who don’t are playing Russian roulette with fate described above.

It may be necessary to place a weight in the eyelid or sew it partially shut due to facial nerve paralysis caused by skull base metastasis from prostate cancer.

A nephrostomy tube placed due to kidney obstruction by prostate cancer.

Spinal fractures due to prostate cancer.

Aside: I didn’t mention the morbidity from treatment - living without testosterone for years, side effects from chemotherapy and a variety of newer side effects we are discovering from the newer drugs that are now available to treat prostate cancer.

(1) 320 mg of oxycontin per day + 240 mg immediate release oxycodone = 560 mg/day X 31 days = 17,360 mg/month - which is the equivalent of 3,472 Percocet-5’s per month.

PSA Numbers In

Blood work I had done at Dr. Lo's office last week has come in piecemeal.  This morning the PSA finally came in. It's a 12.6 ng/mL.  It was at 13 before radiation and dropped to a low of 5.4 after radiation last year.

The Onc's View of the MRI and Next Steps

Met with Dr. Lo today.  He confirmed much of what I gleaned from the last MRI report.

Yes, the original tumor and much of the prostate is destroyed and, according to the report, the urethra is normal ( I beg to differ at various times during the day).This is good!

But the take away from our appointment was that the swollen lymph nodes are most certainly PCa (regardless of where the cancer migrates/metastasizes to, it's still know as __________ cancer...i.e. wherever it started).

The first question is, have PCa cells metted (I don't know if that's a word, but I am hereby creating it! I can't ever spell metastasized anyway.) to any other parts of the body?  I'll be evaluated by a full body PET scan with an Axumin injection to see if the little boogers have traveled elsewhere. 

One of two possibilities here:


1) No sign of mets anywhere else in the body - best situation.  Then we can look at nuking the 2 "bulky" lymph nodes and then wait to see what other whack-a-mole pops up

or

2) There are mets to bones, lung, brain, etc.  If this is the case there's some possibility of  clinical trials but most want you to be on hormone deprivations"therapy" as well.  I won't do HDT. If this is the situation, then there's two choice: a) go on HDT or b) let the cancer run it's course.

So either way, cancer is on the move in my body.  It explains a lot of the fatigue and pain "down there".

Dr .Lo also is issuing a referral to a G/I specialist because my BMs of the last 2-3 months have almost always involved some blood.  I told Doc Lo that I figured maybe it was an internal hemorrhoid as the blood is always fresh, not old or clotted.  He said, well maybe......but you also had radiation that may have affected the area.  So I'll have an anoscopy to look forward to very soon.

That's all I know folks.  It's enough for the moment.  I think I'll have a glass of wine.

The Good News, The Bad News.

Its update time. Let me review how I’ve been feeling, and then I’ll go over what the latest MRI indicates.

Ever since I was in Texas, like right after the auto accident 11/10/19 and then on into 2020 here in California, my body has just hurt...... more than usual. It’s like a general bone ache, my joints feel arthritic and often times as if something sharp is being stuck in them. The feet are the usual issue, with severe pain after any excessive walking, while at the same time the top of my feet have a numbness to them. Same is true with my hands and my arms. These chemo drugs come at a cost and I'm not just talking dollars and cents.

Fatigue is an old nemesis that has not gotten any better almost a year out from the radiation. I just have to try to sleep when I can and try and make sure it’s at least seven hours a whack and I also try to pace myself as to what I do each day. If I don’t, I can find myself overextended after a couple of days and walking like a 90-year-old because of the pain in my lower extremities. Therefore, it requires pacing. And it’s not so much my back that that hurts me; what hurts me as a result of the different treatments, particularly the chemotherapy agent, docetaxel, is neuropathic pain as well as the damage the treatments have done to my bones and joints.  My new normal
.
Pain during urination is kind of hit and miss thing. I can almost always bet that my first leak of the day will be impacted on how full my intestines and colon are. If they are full, it’s going to be difficult and probably painful. On the other hand, sometimes I’m just out in public and stop in to use the men’s room and I have to I’ll grab onto the divider and grip with all my strength as it feels like little minnows that are camouflaged with razor blades are running from inside me out. There is no rhyme or reason.

The small hernia that a CT scan picked up in the area between my right leg and pelvis continues to ache and cause pain. I just don't know that I don't want to be cut on anymore.

Emotionally, I must be honest that I’ve been rather depressed. To borrow a rather trite saying, I'm sick and tired of being sick and tired. On top of that, it seems like every time I turn around someone else close to me has been diagnosed with some form of cancer. And that hurts. A VERY dear friend had 80% of her pancreas removed 2 days ago.  And she's young. My sister in law had triple bypass/open heart surgery 4 days ago; no, not cancer but still. I also am trying to stay away from the news as much as possible because the ravings of the lunatic that is currently our president drag me down as well. I’m trying a couple different types of medications to combat the depression.

Sexual function is good.  I often awaken with morning erections (a very healthy thing for a male) and sildenifil is available and highly effective if a moment becomes intimate.  My semen production is virtually nill and there has been no further blood in it.  Good news.  Orgasms are still possible and quite intense.  Did I mention I chose to keep testosterone in my body against ALL medical advice?

MRI Findings

As usual, there’s a good news/bad news approach to this MRI.

The good news is that the main lesion in the peripheral zone of the right midsection of the gland has had a reduction in size. The not so good news is that there is still a mass at the right base of the gland as well as soft tissue extending out well beyond the prostate capsule (this is what’s called an extracapsular extension). It's a problem.

The radiologist also mentioned that there’s been a development of aggressive lymph node involvement this time around. These are “highly suspicious for metastatic lymphadenopathy.” Like 5 out of 5 suspicious.  Not so good.

In summary

So it appears that we have damaged the prostate and at least reduce the size of one of the tumors via the 5 SBRT radiation treatments  But the extracapsular tumor seems to be on a bit of a roll which may explain some of the pain that I’ve had that I didn’t have a year ago. The new, dramatically enlarged lymph node is of concern.  The radiologist wrote, "There is an enlarged, bulky, heterogenous left external iliac lymph node which is new since the prior study, measuring up to a maximum of 17 x 24 mm (20/25). There is another bulky, heterogenous, new lymph node along the right pelvic sidewall, measuring up to a maximum of 19 x 18 mm (20/26)." A "normal" lymph node measures 3-6mm +/- each direction.

They grade the nodes as follows:PI-RADS LEGEND:Overall Assessment Categories (PI-RADS V2):Likelihood that a clinically significant cancer is present based on MRI parameters1. Very low (clinically significant cancer is highly unlikely to be present)2. Low (clinically significant cancer is unlikely to be present)3. Intermediate (the presence of clinically significant cancer is equivocal)4. High (clinically significant cancer is likely to be present)5. Very high (clinically significant cancer is highly likely to be present)

Striving to always be the best, I'm a 5/5.

I’m sure I’ll see the oncologist in the next week or two and we'll sit down and go over all this. But when I saw him a couple months back and when I saw the palliative care physician, they both suggested, in very diplomatic language, that I was perhaps being a bit too hard on myself in terms of feeling like I’m not doing everything I can when I’m fatigued or hurting so bad the day after a bartending gig.  They just said, "keep moving but know you have cells in your groin that demand and will take a lot of your  energy and strength."

This time in 2014 I was officially diagnosed with stage four, Gleason eight, extracapsular, metastatic prostate cancer with mets to the lungs. My lungs were just covered in lesions and they insisted that they needed to do a biopsy to make sure they were dealing with the same kind of cancer. After three biopsies, two weeks in the hospital and two collapsed  lungs, we determined that yes it was indeed the same cancer that was in my prostate. That hospital stay was in March 2014.

By the end of that same year, I had been on but then quit taking Lupron, the hormone deprivation drug, and I had been through six rounds of chemo with docetaxel.
When I quit the Lupron, my oncologist was very alarmed and even had me speak to another oncologist. Chemical castration (and for some men, surgical castration) is the gold standard for dealing with prostate cancer. But I’ve done enough reading and had eight months of my own experience to know that it’s not something I could live with. I was warned by those physicians and numerous others that if I discontinue the Lupron and didn't replace it with some type of hormone blocking drug, I’d be lucky to be alive in two years.

That was five years ago.

So onward through the fog my friends. I keep pushing along, I keep saying a prayer for those that I love that are affected by this fucked up disease.

But I encourage those fighting to listen to physicians, do your research, know that they don't know everything and go with what your gut tells you is right and something you can live with.

And to those who put up with and have stuck with me during this unpleasant journey from all over the planet, thank you.

THANK YOU AND I LOVE EACH OF YOU.

How’s Your Health They Asked.

Yesterday was Christmas Day of 2019. I spent the day calling friends and relatives and a frequent question would be, “so how’s your health doing?”  I would respond that I’m not 100% sure.

Please allow me to explain why I’m not sure as I try to update you on where I’m at.

Back in November, I decided to take a sojourn back to Texas for three weeks. I noticed the last week I was there that I wasn't feeling very well. Marked increase in fatigue, pain during urination, painful ejaculation, blood in what little semen I still produce and just overall feeling like crap. I have been experiencing the kind of fatigue where I can sleep soundly for nine hours and wake up and feel like I haven’t slept in days. I did manage to work a little bit at the beginning of December playing Santa but I’ve worked few dates other than that and I’ve spent a good deal of time just trying to get simple tasks accomplished. The neuropathy pain has really spiked, particularly in my lower legs.

Side note: A friend and I in Houston were stopped at a stoplight and got rear ended, so that has also played a role in how my neck and shoulders have felt.

I’ve also had what is approaching 44 pound weight loss since the beginning of the year with the majority of the weight, about 35 pounds of it having been lost since radiation and more specifically, within the last 2-3 months. That’d be fine except for the fact that I’m not trying to diet and I really haven’t changed what diet consists of.

I saw Dr. Lo (onc) at the beginning of December. He noted that my PSA, which had dropped to 5.4 ng/ml after the radiation, was now clocking in at a hair over 9. It’s not uncommon for a man to experience a slight, temporary bump of .5 to 1 in the few months after radiation, but a 3.5-4 point post radiation jump was not something he’d seen before.

Therefore, I’ll have another blood draw next week and I’ll see him in mid January again. Then we’ll decide what type of imaging to use to try to figure out what my little friend is doing.

I’ll take any thoughts and prayers people wanna send my way :-)

Until then, a happy, healthful , new year to each of you my friends!

Tomorrow is the Next Onc Visit.......and Also Some Thoughts On What Some Will Endure

I follow up with Dr. Ernest Lo, my "regular" oncologist, tomorrow and we'll discuss my latest PSA test which shows a leveling off after the drastic drop post radiation.

My guess is he'll say, well, it's headed in the right direction but we probably should just keep an eye on things  I know my Dr. Lo  ;)  Good guy and as we approach 6 years of this battle, I'm at a pretty good place mentally.  Do I get depressed?   You bet.  Does the right side hernia cause me pain?  Oh yeah.  Neuropathy?  We're old friends.  Fatigue?  See neuropathy. But I'm still here and quality of life is all in all good and tolerable.

Part of this is because I've been selective about and willing to say no to certain treatments.  I've felt like if things got THAT bad, it'd be time to talk to Palliative Doc about a Marilyn Monroe Cocktail.

Some men will do ANYTHING to live longer.   I'm not in that group.   Please see what some men go through:

One woman wrote to a blog I follow:

Hello. Thank you for including me. My husband has Alzheimer’s so I’m doing all the research for him. Dx 2010, EBRT, PSA began to rise by 2013 but no bone mets till 2018. Now on Lupron and Zytiga. Can anyone share how long that combo was effective? Thank you!

Rest assured people that love me, if I have Alzheimers AND metastatic PCa, just lemme go........

One man wrote:

Hi this is my first time on here. I want to give y'all a quick run down of my history.  I was diagnosed with stage 4 metastasis prostate cancer on 2/14/10 at 8:30 am i had a rapid prostatectomy on 8/25/10 then a double casteration on 8/28/11 i went into remission until 4/4/14 from then on its been a roller coaster ride for me and my wife.  I've had 4 different cycles of chemo and 3 little zaps of radiation.  We went on a little get away to South Carolina on 12/28/18 to 1/5/19 right before we left my oncologist had me do 2 different scans . On the flight back i was in some of the most severe pain i have ever been in my life. I ended up going to the emergency room and they did a MRI of my lower back . They found that my cancer is growing at a very fast rate. On my t-10and t-12 is basically separating and it kept me from walking . I made an appointment for my oncologist she told me there is nothing more they can do for me . I have done all the trials and stuff . They gave me 4 months to live. I'm on hospice now and just in the past couple of weeks i can tell my cancer is spreading.  Im having to use a walker all the time now and telling my left leg to walk . My hospice nurse explained that my cancer is spreading to my brain now and is almost acting like Parkinson's disease. The only good thing is me and my wife went to the funeral home and made all my final wishes . Idk if anyone else has done or considered this but you wont believe the relief it takes off your loved one. The only thing i have left to do is but my URN online it is so it is 40% cheaper to buy online and your choices are far greater. I think i got everything out i wanted to say . My prayers are with everyone going through these difficult times both the person and their caregivers/wife. God bless

Can you imagine all the treatments he took (surgical castration!)?  The multiple rounds of chemo.  The pain.

One reason I live and struggle to live in California is that when my time comes, I don't care to butcher myself, to poison myself again, etc.  If it's a matter of keeping myself comfortable, I'd talk with my Docs.  

But Cali has a Compassionate Death Act and the conversations have already been had.  I won't go down a slow painful road.

Heartelf thoughts to the man and his wife in SC.

Checking in Before the Next Onc Appointment

As we begin fall of 2019, as I approach my 58th BD, as I come upon six years of trying to outwit this monster and I approach the next Oncology appointment, a check in is due.

I find myself living in a new home with tolerable finding work (that which I can do) at twice the rate of pay and getting back to base level physical function (by and large) 5 months after 5 sessions of SBRT (high dose radiation over less sessions) in March.

OK, details:

U/G Toxicity 

Largely resolved and back to normal.  Once every few days, I'll have a sense of urgency and one day (1!) I was unable to stop the flow.   That's a bit disconcerting but not bad.  I keep a hospital grade urinal behind the bed just in case but rarely feel like I have to use it.  Pain during urination is down to, at worst, a 2 (1-10) and is usually 0.  I still take a low dose of generic flomax but I haven't had to take Axos for at least 2-3 months.  Going number 1 ain't bad!. Sometimes I stand at the urinal and just smile :)

Rectal Toxicity

Zero.  None.  Nada. I firmly believe that getting the SpaceOar gel implant (see previous posts) was one of the wisest things I've ever done.

Sexual Function

Largely back to baseline. I still take sildenafil  as a proactive/blood flow therapy, but I can get a healthy erection without drugs.   I am very surprised and relieved by this.

Fatigue

Still a struggle but I have had more good days in the last week or so.  I will likely always struggle with this (per my gut feeling and various physician statements).   So I try to do what I can.

Neuropathy

An ongoing issue.  It keeps me from being on my feet more than 4-6 hours lest I risk being in excruciating pain for a couple of days.  Various physicians have said, some recently, this may never go away.  Thanks chemo.

Now all that stated, let's talk numbers.  My last PSA was a 6.0 whereas right before the SBRT, it was approaching 14 with a rapid doubling time.  This is really good news as it gets me back to where I was in March of 2018.

I've also been advised I have a small hernia (but large enough to notice) on the right between the scrotum and thigh.  This would explain the pain in that area.  I'll decide later if/when I fix that.  (I tell ya, my body has just decided to blow all the sockets!).

So I kind of land in a happy place.  I THINK the radiation/gel implant was a very smart move (let's talk again next March......if I can still pee unassisted and get any type of erection, I'll still make that claim!  lol).  I THINK that the tumor is shrinking and posing less of a threat to other organs. I THINK my UG/sex function is getting back to where it should be. I KNOW my bowel function is back to A OK.

I have struggled with some depression and anxiety which I think is largely situational.  But I'm exploring some counseling.

Finally, I'm at a place this could go any direction.  A dear friend diagnosed a year after I was has been taking hormone depriving drugs for a year + as well as undergoing IMRT over 40 sessions.  Despite all that, his PSA is doubling every 2 weeks.  But I could also be very lucky and this could keep the cancer in check for some time.

It's a roll of the dice.

Another Man's Perspective on Radiation and SPACEOAR

I don't know if this guy did the 40 session, the 20 session or, like me, the high voltage, intensw,  Castle Bravo, 5 session detonation (handled with precision though, with relatively few side effects it seems....... so far).  And for this, we are grateful.  Another man's perspective:

"I am on my final week of proton therapy for prostate cancer and have had no side effects. Several others have just completed their treatment and they also have had no issues. Most doctors will not tell you about proton therapy and it’s up to you to do the research. I am so glad I chose this option. The advantage of proton therapy is the radiation can be controlled so the majority of the dose goes into the prostate unlike conventional radiation.

As a result only a small amount affects other organs. The doctors also inject a gel called SpaceOar which pushes the rectum away from the prostate which minimizes the amount of radiation that it is exposed to. Everyone that I have spoken too is very happy with this treatment because there are little to no side effects. Definitely check into this before making your decision."

https://prostatecancer.net/stories/treatment-options/?fbclid=IwAR0a63ym0ERmh42tUayHyGnSUly5YpnSvtAqAYCM1Od4wNFY5Qp2r5gnElI

Update After Meeting With the Onc 3 Months Post SBRT

Met with Dr. Lo last week and we reviewed the PSA test and MRI..  He confirmed much of what I discerned from the MRI Radiology Report.

He agreed the decrease in PSA and the slight decrease in the size of the largest tumor in the gland were both things I should be happy about.  He reminded me that radiation is kind of a slow process in that what it does to cancer cells DNA doesn't happen overnight.

On the flip side, he said that the "extracapsular extensions" were unchanged.  That's good in that they don't appear to have grown but not so good in that they haven't shrunk either. The MRI stated:  Relation to capsule: gross extraprostatic extensions.

He further reminded me, again, this is not curative.  We'll play Whack a Mole with this metastatic cancer.  No matter how you treat the tumors, if they have metastasized, there are break off cells running around in your body and will reappear somewhere at some point. So now we just watch and wait.  He went on to say that the peripheral neuropathy I struggle with in my feet/hands, arms/legs is something that I'll likely live with going forward.

Let's break down where I'm at system by system:

U/G Toxicity

I'm pleased to say that my urinary function is back to pretty much normal.  I'm not taking the Azos/phenazopyridine (which is VERY effective btw, your urine just stains anything and everything it comes into contact with). You have been warned!  lol  Sometimes I still have a sense of urinary urgency and that comes and goes.  I keep a medical grade urinal close to the bed just in case.   I'm still taking Flomax .4mg at night and that seems to be getting me through. I may be able to discontinue it in the near future. I'm having some off and on pain that I'll address below.

Rectal Toxicity

None.  Aside from a little bleeding and pain the first few days, I've had ZERO further issues.  I poop like a happy man :) (and it REALLY is the highlight of my morning....lol!). I am SO delighted I went with the SpaceOAR implant.  Moving at risk organs away, even by mere centimeters, can make a huge difference.

Sexual Function

I am happy......indeed gleeful that so far erections are happening as they should and I haven't been using sildenafil in the same dose or even every day.  This is a good thing because Mr. Johnson doesn't stay happy if he doesn't fill up with blood a few times a day and Mr. Miller gets cranky if that doesn't happen.  A healthy penis is important for many reasons, both physical as well as mental and I'm grateful for function in this area.  Ejaculate is little to none, which I was told to expect. Less mess?  No muss, no fuss?

Fatigue

This is complaint number 1.  It still makes no difference if I sleep 6 hours or 10, I struggle with trying to find my energy throughout the day.  My urologist, who I just think the world of, said in an email to me, "First off, the radiation will beat up your body. So, you don't have any scar/wound from surgery, but inside you will be fatigued. Rest up and relax. It will help."  Well I keep doing that but I'm still struggling with it.  I had two friends come to town for the July 4th weekend and I had trouble keeping up.......and one of them uses a wheelchair.   So yeah, I stay tired.  I'm gonna try and get myself to the pool and gym in the next week and see if I can find my stamina again.

Pain

Pain from the SBRT treatments doesn't really seem to be a thing.  That said, I HAVE been having on and off pain that isn't really scrotal or testicular, but more at the bottom of the pelvic floor/well above the scrotum and testical, all on the right side where the larger tumor lives. It ranges from a dull ache to out and out There Aren't Enough Pain Killers to deal with this pain.  I even went to the ER right before the move because I was just writhing.  They finally managed to get it tamped down to where I could tolerate it.  My oncologist wasn't sure (I told him maybe it was psychosomatic) what it was but mentioned "pain transferral is not uncommon."  I'm seeing the urologist Friday and he said, "Above the testis is the epididymis and it's common for it to get inflamed."  So, we'll see.  In the meantime, it often feels like I caught a dodge-ball to the groin.

Finally regarding pain, the neuropathy caused by chemo continues to be an arch foe. I don't talk about it much because people get tired of hearing about it. But here goes.....before I get out  of bed, I take a pain med and I lay there for another 30 mins +/- so that it's not excruciating when I step out of bed.  I try to work a few hours 4 days a week but I pay for it in feet/ankle/leg - hand/wrist and arm pain.  I've kept working (bartending/serving) because I can medicate myself so that it's tolerable, it get's me out and about, gives me a little extra income and gives me some walking exercise.  I dread the day when I can't tolerate being on my feet. Ya gotta keep moving!

At this point, Dr. Lo and I are going to check in again in 3 months and repeat the PSA and see where things are.  He did mention, off the record, that given the fact I was refusing systemic treatments (In this case, hormone deprivation) and had been since early 2015, I was doing amazingly well and that "whatever I was doing (cannabis), I looked really 'good' to keep doing it" and that given my diagnosis and path, he was really surprised.  Aside from that high CBD/THC cannabis, IMHO, I feel that choosing to forego erasing testosterone from my body has helped tremendously.  Now oncologists will tell you that T feeds PCa cells and, therefore, you most remove it from your body.  Some men even choose to be surgically castrated.   No thank you.     I'll either live here feeling like Scott, or I'll check out and see what the next go round is alike.

In a nutshell,  that's where we stand.  Not perfect, but not as bad as it could be and I seem to keep buying time even without doing everything the docs would like me to.

Post SBRT MRI - Sometimes Bad Genetics Are Hard To Fight

I go to see my onc next Tuesday. In addition to moving, spending a night at the ER to get pain "down there" under control, working a job or two,  I also squeezed in a PSA test and an MRI to see (said in my best southern accent) "what's goin' on down thar."  Well the report came back the same day and my onc knows me well enough to know that I'm pretty adept at reading them and, regardless of the news, I won't throw myself off a bridge if it's not great news, so he kindly posts them once he's read them.

And it's not all great news. But not all bad either.  But not all great.

We'll start with the good stuff.  My PSA is down to a 6 from a 13.  That's the right direction.  For reference, when I was diagnosed in 2014 it was a 5.1.  Highly aggressive PCa tumors don't typically boost PSA much, so this is just one part of the puzzle.....but a welcome one.

Also noteworthy is that the largest tumor "demonstrates mildly decreased size" (3.3cm x 3.2cm vs 2.6 x 2.40). The radiologist notes that the bladder neck is "Grossly (seems like they could find a different word, ya know ?!) unremarkable". This is a good thing.  It may explain why I'm having less and less pain during urination.  I'll take it!

Now the not so great news is that I have a "Pi-Rad" score of 5 which means the radiologist thinks that there is a "very high" indication that I have a "clinically significant cancer".  Well duh!  What do ya think I've been up to for 5 years?!

Also, the extensions of the tumor that threaten my bladder and rectum appear unchanged.  That's not so good.

My reading indicates that the full effect of radiation (the good effects as well as the bad effects) can take months to happen. But the fact remains I still have a highly aggressive, metastatic cancer in my pelvis and likely some cells running around my body.

Fatigue is my number one complaint now.  I had no idea how bad it would knock me down, but it's right up there with chemo and ADT in terms of what it does to energy levels.

And I'm sick and tired if being sick and tired.

Almost Three Months Out........How Am I Doing?

June 19 of this year will mark three months since I had my five sessions of high dosage, SBRT. In a generalized sense I can say that the side effects have been really only two, fatigue and urinary discomfort.  I sleep well at night. I rarely if ever have to get up to go to the restroom. I think that I made good choices in terms of the spacer device. And I'll find out soon what affect the radiation has had on the tumor. So here’s to the nitty-gritty. If you don’t like reading about the male reproductive or urinary systems, kindly flip over to the Disney Channel at this time. :-)

U/G Toxicity

I’m still experiencing some issues with burning during urination and I still take the generic Flomax and, on occasion, the Azos, although I am experimenting and I think that the Flomax may be enough and I may need to take only a small amount. And for this we are grateful :-)  as noted before in this blog, I’ve never had any problem with urination whatsoever aside from a brief episode in roughly 2000. So the experience of having extreme burning during the process and having issues urinating was new to me.  But what I can say is that in my research, three months seems to be the median for most men to get back to baseline, like wherever you were when you started, and I feel as it seems I am rapidly approaching that. I’ve had no incontinence or any of those issues (so grateful), it’s just when I’m not medicated and I got to pee,  I need something to grab onto something.......or a bullet to bite:-).I’m grateful to my physicians and rad techs for doing what seems to be a good job on this procedure.

Rectal Toxicity

In terms of what is to be expected from radiation in that area, I’ve been extraordinarily fortunate. I had  a couple of days where there was a little bit of blood and a couple days where it was kind of painful to pass anything.  But other than that? I’ve just had no problem whatsoever and I am more grateful than I can possibly say because it really would piss me off and make me feel like I’d  made a poor choice, if I had to deal with that. I strongly believe that the choice to make space with SpaceOAR, as performed by the highly skilled and compassionate,  Dr. Kenneth Chao, made a huge difference by pushing the rectum a few centimeters away from the "danger" zone. Performed masterfully and with care and consideration of my thoughts and concerns. I’m convinced it made a huge difference because when you’re shooting radiation at peoples organs, a few centimeters makes a big difference. He knows this and he made sure that I got those few centimeters. Hell of a guy, compassionate and knows exactly what he’s talking about. A+  rating from me! If you are thinking  radiation of PCa, consider SpaceOAR. A few centimeters can make a lot of difference.

Sexual Function

 I am relieved that I’m doing pretty well in this department. Giddy is a word that comes to mind. Although I’ve been taking 40 to 60 mg of Sildenifil daily as a prophylactic to keep blood flow to the region, I quit for a week  as an experiment, and I’m happy to report that I experienced both nocturnal and spontaneous erections during the day with a frequency that a man approaching 60 who has had the shit beat of his body should be pleased with😎  I think men, regardless of sexual orientation, will understand just what it means to be able to wake up with an erection or realize that you have one in public for no particular reason. That’s the sign of a healthy penis and a healthy penis is the sign of a healthy male. I need all the signs of health I can find and I particularly like this one just for the record...lol. You’re welcome!



Fatigue 

 My arch nemesis. It doesn’t make a difference if I’m in bed for eight hours or 12 hours, I wake up exhausted. And usually in pain, despite adequate medication. I knew this would be part of it with the SBRT.  I knew it would probably remind me a lot of hormone deprivation and chemotherapy. Bad fatigue is a real thing and I just try to push myself through the day to the degree that I can. I try not to let this wretched disability keep me from working once or twice a week or helping out a friend or just simply being nice. But we’re getting there, we’re getting there :-)

 In the midst of all this, I will complete a move to a dear friend’s home in to the master bedroom of the home (I’m still wondering what I did that gave me good enough karma for me to get the master bedroom). But I am excited, I am honored, I love this friend and her child, OK he’s not a child he’s 21 years old, but still it’s a family. We share similar interests but I think we also understand the need for some solitude once in a while. I’ll be able to cook which hasn’t really worked out well where I am at and that’s really important for people with a live tumor still in their body.

Cannabis/cannabis  oil

I continue to use high CBD/THC cannabis and cannabis oil. Every doctor I’ve had, from the one in Texas to the ones here have always said, ‘I’m not sure what you’re doing but you should be very sick right now, so keep doing what you’re doing.’ That’s about as far out as most in these will go in their suggestion to use CBC/THC as a not only a palliative drug, but also as a quite likely cancer inhibitive and, in many cases, curative.

General Pain

The neuropathy continues to be what it is and, while tiring, I at least am familiar with it.  It is a constant presence in my life and severely limits how much I can physically be on my feet. Pain meds deal with it fairly well!  What is new is a usually quiet area.  I have a constant, dull, throbbing pain that can, at times, escalate to a sharp pain in the lower right part of my abdomen, high above the testicle.....on the same side where the worst of my PCa has been.  Kind of think of it as the right pelvic floor.......and we will see.  But I can tell you that walking around daily feeling like you've been kicked in the groin is tiring.

That's where I'm at currently.  About to move to a new residence and my goal is to build my body back if I can. Also will have the follow up MRI next week.

Cheers!  And thanks for all the support.

One Month Out.......Seems to Be a Mixed But Largely "So Far, So Good" Bag

Last SBRT treatment was one month ago.  Here's what I can report.

U/G Toxicity:

Still having pain/burning during 70% of my taking a leak.   The flomax and Azo help......A LOT.  But the AZO does stain......boy does it stain.  SO, if you're like most guys, especially with longer urethras, and no matter how much you squeeze and shake, there's still a drop or two......don't wear tighty whiteys and take some paper towel and "protect" your clothing. 

Ahem. 

I've only had a couple of instances where I needed to go like NOW!  lol.  In one case, I made it down the hall just fine.  In another, where one roommate can spend 45 mins or more on the can, I recalled I had a plastic juice jug on the shelf that was almost empty.  It sufficed.  But those are really the only two times in a month since radiation ended.  That's not bad.  So relatively minor urgency/pain issues with urination.  Based on my research prior to the nuking, the overwhelming majority of men return to where they were (baseline) prior to treatment at about 3 months.

Rectal Toxicity

I am relieved that the bleeding I had has ceased.  Only on the first day or so after the 4th and 5th treatment did I have bleeding that concerned me, but it has resolved.  BMs are pretty normal and, while I still have pain if that area is "full", if I can urinate/have a BM/get real flatulent, that tends to knock down the pain and discomfort quite a bit. 

I am thankful to Dr. Kenneth Chao for recommending and proud of myself for researching and figuring out how to get myself on the table for the SpaceOAR implant.  There is no question that it helped protect the rectum and I am quite relieved by that.  Good call Scott!!  I'm also glad I had it done under general.  Win/win! 

Sexual Function

While it can take a while for damage to the penile bundle of nerves to make itself evident, so far, so good.  I've been taking sildenafil on a prophylactic basis since before the radiation started.  I continue to do so to keep blood flow to the penis increased.  Erections are quite adequate so far.

Ejaculation is becoming different.  As I was told to expect, when they dry up the well, not much comes out. So yeah, it's a bit less liquidy and will probably become even less so. But the good news is, at least right now, an orgasm feels as good as it always has.   Fingers crossed.

Fatigue

Fatigue (i.e. - extreme tiredness resulting from mental or physical exertion or illness) remains my nemesis.  I can sleep 6 hours or I can sleep 12 and I wake up feeling wiped out.  I try to at least walk or lift weights (10-15 lbs) daily.   But I have a ways to go on the fatigue thing.......*sigh*

General Pain

Neuropathic pain in my extremities has experienced a slight uptick since the first of the year.  Typically fairly well controlled with the meds I currently take, I've kind of resigned myself to filing this in the "This Is Just The New Norm" file.

I got a PSA blood draw (and CBC, CMP as well as testosterone) done today and I'll meet with Dr. Lo next Tuesday.  It's not uncommon to see a spike in PSA after the radiation as the prostate swells so I won't be alarmed if there is an uptick.  I would imagine we'll do a MRI within 6 months to see if we're keeping the tumor extensions from invading the bladder and/or rectum.

Thanks for all the prayers, good wishes, text messages, check ins and just being my kind, caring friends and readers. 

You all give me strength.

13 days out… Lingering Fatigue, Hurts When I Pee and Cancer is Impacting Those I Love

I’m now almost  two weeks out from the last session and I must say that the fatigue is serious. I did manage to get out and go for quite a walk todayAnd get some sunshine. I have been pretty exhausted since I got home. But my experience with exhaustion and fatigue issues just have to keep at it as best you can.

Urinary discomfort is manageable with the two medications. It’s not perfect by any means but it’s  manageable and no longer something  I have to grab my teeth over. During my research seems that most side effects, be they sexual, urinary or bowel,  seem to peek at plus or -3 months and then return to baseline.  So I may have a bit more discomfort to deal with. I am having absolutely zero continence issues for which I’m very grateful and sexual function seems as normal as it had been prior. to the radiation, but sexual side effects tend to show up a few years down the road.

What’s really been difficult for me this last week is not I have a cancer and been fighting it for five years and made RadOnc part of the mix.......no what’s  really been difficult for me has been that I lost a dear friend to pancreatic cancer and another dear friend has been diagnosed  with breast cancer. Unsure as to status just yet.

Yes, I get really tired of that shit.

5 SBRT Sessions Complete! But Now We Have a Bit of Bleeding and Cramping....Yay

I completed my 5th and final SBRT session today.  To say that I'm relieved to have that over would be a vast understatement.  Now it's on to healing as quickly as possible.

Tonights sides effect du jour are 1) severe cramping kind of towards the front of my lower abdomen just behind the pubic bone (any guess where the P gland is?!?!?) and 2) roughly an ounce +/- of bright red blood in a very small BM.  Both of these are new to me and I figured blood might be worthy of calling the Radiation Gods about. The Goddess on duty said that I should keep an eye on it and if it gets worse or is still happening tomorrow morning, I might need to hit Urgent Care, especially in light of the fairly severe cramping.

Sexual function seems as well as can be expected for a guy with the aforementioned problems as well as who has just gotten urethral burning under control (thanks be to ALL the appropriate deities, particularly Cheuksin, the Korean toilet god! as well as flomax and AZO).  Yes things work, but that has not been a primary focus as one might imagine.

But I'm happy to say that, with the exception of the initial miscommunication regarding personal needs and preferences (or, as one physician called them, "quirks"...... choose your words carefully Doctors; they matter), I can't speak highly enough of the techs, MY nurse navigator (her name is Christie and she will be someone whom I know I can email and ask a question of or just vent to.....she's just that kind of of empathetic person aside from being a very good, very specialized RN). I'm lucky to have gotten her.

My techs, Shari and Susan, went out of their way to make sure I was comfortable for each of the 5 sessions.  Thorough about keeping me advised of what they were doing, using draping consistently and thoughtfully and just being warm and caring made this so bearable.  They even made sure I got some Motown to listen to.  I appreciate them on a deep level.

The physician that I've dealt with at this facility, Dr. Massulo, is actually a very kind, understanding, knowledgeable man which was hard for me to realize during the planning session and caustic injection of urethral dye.  It has become clear that he regrets not having seen my original communication as he stated he would certainly have taken more time and been gentler in his approach.  He's a good guy.

I also am so appreciative of the social worker Susan, who has helped relieve some of the stress that goes with this.  Not only a nice person, but a very kind, compassionate, knowledgeable person with a warm smile and kind heart.

Now, to try and get my stamina back ASAP!  I spoke with their nutritionist today and I'll speak with her again as I need to replenish the coffers, both nutrition wise and the bank account) which have become rather drained after the medical expense/treatments of the last few months.  I also found out two nights ago that my generous and kind roommates will likely move to Seattle as the younger one seems headed for a $200k plus Amazon job.  I am not part of the equation as they plan to downsize substantially and, quite frankly, I annoy the hell out of the older roomie. In all fairness, they've been together almost 40 years, 8 years longer than I've known them and the younger of the twos primary responsibility is to care for his husband.  I'll always be grateful for what they've done for me.

So,  radiation poisoning, blindsided and all, I'm doing relatively ok. :)

Fatigue - #4 Down

fa·tigue

/fəˈtēɡ/

noun

1. 
   
2. 
   
3. It's real and when you already struggle with it, nothin' like some enhanced photons to enhance the fatigue.  I was pretty good and fairly energetic Wednesday after number three but not so much yesterday, then was fair this morning and on the way to treatment but within 2 hours after treatment, I felt like someone had thrown a heavy, wet blanket over me. 
4. 
   
5. 
   

Physical symptoms:  my low abdomen feels very "full" almost like I'm very constipated but I know I'm not; urination has become quite a feat, requiring grit and determination.  I know also have two types of meds to assist with pain (AZO) and getting started (Flomax).   Hoping for relief by these in the AM. Still some pain right at the anus.

That's it for tonight folks.