Moving Forward With Gel Spacer Placement and Radiation

My last post concerned the need for palliative radiation to keep the tumor from invading either the rectum, the bladder or both and my extreme fear of of the process for placing a spacer through the perineum to push the rectum away from the prostate and eliminate/limit damage to that important organ from the radiation. More on that process here.

I spent much of last week researching the whole process (protective gel placement as well as the 40 targeted radiation treatments) and chatting with men around the country who had been down this road.  What I came to discover was that about 1/3 of the men I spoke with had had SOME form of sedation and several were completely sedated.  Indeed two men said it was just their radiation oncologist's protocol and that their physicians liked it because it's crucial that a man be perfectly still during placement and the best way to guarantee that is if he's out like a proverbial light.  Makes sense to me.

So, I emailed my RadOnc and much to my delight, he called me back and said we'd figure out how to get it done under anesthesia. His office, although filled with compassionate professionals, is not licensed nor does it have crash equipment for putting people under.  He went on to say that he didn't care if I did the radiation near my house or further away at his office.  His primary concern was me.  He went on to say that I was "in the top 10% of patients" who were well researched and asked the very important questions.  Damn right I am.

Next week I'll meet with the RadOnc closest to home and see if I want him and his team to do the radiation.   He has a good resume, the John Muir Cancer Center has excellent reviews and I COULD WALK if I needed to.....it's that close.

I'm not having pain in that area, only what I would call noticeable discomfort and a realization my pelvis is "fuller" than it was 4 months ago.  This is the tumor expanding against the other organs

Therefore, the plan is to research one other option but then likely move forward with the gel placement and then I'll go get my glow on.

I'm proud of myself for remembering that I AM THE PATIENT,  I AM THE CONSUMER and I CAN FIRE professionals that don't meet my needs.

That said, Merry Christmas, Happy Hanukkah, Happy Kwanzaa and just generally Happy Holidays to all. :)

A Decision I Have To Make

Hard choices.  My PSA has jumped in 3 months from 7.2 to 9.   Not good, The last MRI shows the tumor growing outside the prostate in the directions of both the bladder and the rectum, which means that shit just got very real.

My choices are to do nothing and let it happen, or take radiation "therapy" which will also include hormone deprivation "therapy."

The radiation "therapy" requires an injection of a gel through the perineum (google it if you aren't familiar with that anatomy) to protect the rectum, which is right next to the prostate as is the bladder.  BTW, whether you believe in God's creation or evolution, the male reproductive/urinary system is a poor design. Really poorly designed although many men think their genitals are God's gift to the world. But I'm terrified of the procedure.  I know women endure much worse during childbirth.....but I'm not a woman.  I'm just a terrified guy.

I don't like the idea of "radiating" ANYTHING.  I've watched too many videos of side effects from radiation.

So this week, I'll talk with my palliative care guy as well as a second opinion from a different oncologist as well as my PCP.

But I'm frightened.  Not of death, but the procedures to keep my quality of life reasonable.

And I'm frightened.

I'm Sorry I Don't Remember. No, I'm Really Sorry

I had an encounter with one of the people I've worked 4 or 5 catering jobs with in the last year.  I recognized a familiar face and we said hi and I said, "I apologize but I don't recall your name." The person said, in a bit of a huff, "Well dang Scott, I always remember your name and we've worked together so much."

So I had to explain.

There is this side effect of the chemo drug, docetaxel, (one of many) that is called chemo brain. Not something I ever wanted but I deal with it daily. I forget names, I forget chores, I forget what we talked about, I can't multitask like I used to. I struggle to even make a list of things I need to do.

It's no fun and I hate it.  But there's not much I can do about it.

So please, if you know someone who is having or has had chemo, cut 'em a little slack.  They're trying.  They really are.

CT Scans and an Addendum to the MRI

I've completed the MRI and CT scans the Onc had ordered and it's a good news/bad news situation.

The Good News

The CT scans show no evidence of metastasis other than a lung nodule that seems to persist yet hasn't grown any. Other than that, there is no "CT evidence of metastatic disease in the chest, abdomen or pelvis." This IS good news and the Onc's comment was that again, I'm a strange case as he'd felt that we'd see metastasis given the other numbers.  Could it be heavy cannabidiol intake that's slowing/changing the course?  Who knows but the docs don't have any other explanations.

The Bad News

There was an addendum to the MRI report that reads as follows:

"Comparison examination dated 4/20/2018 is now available. 

There has been substantial interval increase in degree of intraprostatic disease. Specifically, in the right mid gland peripheral zone, area of T2 hypointense disease measures approximately 2.5 x 1.5 cm, previously approximately 1.3 x 1.1 cm. There is abnormal T2 hypointense soft tissue extending through the right posterolateral prostatic capsule at the level of the neurovascular bundles (6/16), compatible with extracapsular extension and neurovascular bundle involvement. There is extensive, gross supra prostatic extension (6/6 from the prostatic base with a implant measuring approximately 2.1 x 2.0 cm, previously 1.9 x 1.7 cm."

What all that really means is the tumor has increased in size substantially, continuing to grow through the right side of the glandular wall and towards the bladder.

I'll follow with a post about my doc's suggestions and my decisions.

Info, More Tests and The Decisions

I mentioned back in May that I would consult with a research oncologist at UCSF regarding immunotherapy.  I did so and I've since had a repeat PSA and MRI.  I'll try to summarize each and describe where that leaves me.

PSA:  substantial rise from 5.2 in March to 7.6 last month. When I was diagnosed and had mets in my lungs, I was a 5. Now for most men that's not a big jump or high number.  But for a man with my history and severe grade of mutation, it's an alarming jump.

Imaging: In May, lymph nodes in the pelvis were quite enlarged.  They no longer are.  That's really good news.  Not so good is the increase in size of the gland.  From a 3.7 x 3.9 x 5.5 cm with a volume of 40 ccs, to 5.4 x 5.4 x 5.3 cm with a volume of 67cc. A glitch in software didn't transmit dimension of the tumor, but I should have by tomorrow.  But the measurements all seem on an upward trend. Seminal vesicle involvement is still indicated on the right side.  The best news out of this is that so far, because of the directional  growth of the tumor, it's not messing with my bodily functions.  I really enjoy peeing and my morning "constitutional" is one of the highlights of my day!  ;)  I'd be really upset if I couldn't do those things.

As mentioned, there still appears to be right side seminal vesicle involvement and the area surrounding it, evidence of further growth.

Symptoms:  I began to notice an increase in fatigue in late July.  I'd done so well in terms of energy and stamina since the end of last year, I'd almost begun to take it for granted.  But it became clear that even with 7-10 hours sound sleep, I still wasn't waking fully rested. I often need to lay down mid day for a bit. I've also noticed an uptick in pain in my arms/legs and body overall.  Pain different from the neuropathy.   Kind of flashing, low aches in my arms and legs, hips and torso.  I also have a dull, nagging ache in right upper, upper part of the scrotum.  Not really pain per se, just an annoying, dull discomfort.  Oncologist says based on MRIs and anatomy, that makes sense.

I also want to say to anyone that has never had chemo.  Try as hard as you can to understand what it does to your loved one's body.  Aside from it's shear chemical brutality during the process, the person's body is never the same.  And the effect called Chemo Brain means cognitive function mau never be the same.  You think it bothers you because I don't recall I told you something yesterday?  Imagine how it feels for me who used to remember everything and be able to multitask like crazy.

It hurts.

Next Steps: The Onc would like a chest/abdomen/pelvis CT scan to see if there is any visible evidence of metastasis again. Then, based on that trove of data, we can make a decision as to whether or not it makes sense to to beg Merck for a "compassionate" use of their immunotherapy drug Keytruda.

Having ruled out hormone deprivation and chemo for the future unless needed to control unpleasant or painful symptoms, I have been limited in Western Medicine to try and treat my "incurable" Stage IV, metasticized Gleason 8 (out of 10) mutant PC.  I have used extremely toxic chemo, suffered through 8 moths with no testosterone and lots of estrogen.

But immunotherapy and Keytruda caught me eye.  In a nutshell (no pun intended....well maybe), this immunotherapy attempts to turn on the immune system to kill cancer cells without making the immune system attack good cells/organs too.  It is more effective with the particular gene mutation I mentioned in a previous post, the exact one I have. So we're looking very carefully at this.

There's very little downside;  2/3 of patients seem to tolerate it well.  In the 1/3 that don't, side effects are rather easily reversed.  Of the 2/3s that can, about 15-20% of men saw the tumor stop growing or actually shrink.  That's the good news. And less that 1% die of the treatment.

The bad news is it's off label for PC right now; only approved (and therefore PAID FOR by insurance or Medicare) for lung cancer I believe.  So we'd have to plead "Compassionate Use" with Merck and they'd have to decide if I was worth $250,000/year as a case study outside of protocol.  Then they'd have to keep doing so. One takes this every 3 weeks via IV.........forever.

So we'll do the CT scan and see what's up and if Dr. Lo and I agree it's time, we'll pursue this.

In the mean time, I continue to use high CBD cannabis in both smokable as well as suppository forms. Several physicians have commented that it may very well have been what kept my disease relatively inactive for so long.  I try to eat a healthy diet and keep stress low  I sleep A LOT.  Pain has seen an uptick but is generally manageable with a recent, slight adjustment to dosages of RXs

I also deeply appreciate my Palliative Care Physician.  He replaced pain management, urology to a degree, works in concert with oncology and PCP doc and can also deal with everything from pain to energy (or lack thereof), intestinal issues, has a social worker on staff, knows about California's Compassionate Death Act (and has participated) and is just an all around sweet, devout, funny, compassionate Jewish guy with an impish grin.

So that's where we're at right now.  CT prolly next week and decision roughly a week later.

But I'm at a good place whichever way thing go.  I love and am loved.

What else can one ask for?

Time To Withdraw From the Cancer Industry and Let Nature Take Its Course

I had a 3T MRI (i.e. WAY high tech) before I left for Austin.  Results were in right after I got back. Here’s where I stand:

I have the same, very aggressive tumor I was originally diagnosed with.

It’s growing and is outside the gland again (extracapsular).

Radiology report reads: “.........within the right mid gland involving both the transition and peripheral zones is very highly suspicious for a clinically significant neoplasm….”.  It also stated that there is “involvement of the right seminal vesicle.” Finally, “There are enlarged bilateral...lymph node suspicious for regional nodal metastases.”

This means, the tumor has once again spread outside the gland and into the right seminal vesicle (google it if male reproductive anatomy isn’t your strong suit).  It also means that with enlarged lymph nodes, it’s likely the cancerous cells are spreading, as was the case 4 years ago.

I spoke at length with my oncologist today and, after taking a while to draw it out of him, he stated that any treatment he could offer me would come with side effects I find unacceptable and would likely only extend my life by months…...or maybe one to two years.   And I would be sick/feel poorly the whole time.

After I survived chemo and ended hormone deprivation at the end of 2014, I swore that I would not go down those roads again.  I remain firm in that conviction. I will, based on the oncologist’s suggestion, speak with the researchers at UCSF to see if there are any studies with minimal side effects that make sense. Perhaps immunotherapy.

But aside from that, adjusting the medical cannabis (CBD:THC ratio and dose) and trying to keep stress to a minimum, this is where I begin to let nature take its course. A person in my shoes can spend all their time seeing doctors and being involved with the cancer industry which will likely make them quite ill and unable to enjoy life.  Or one can accept the cards dealt them and enjoy life while they still feel relatively well.

I choose the latter.

Authorization Received and 3t MRI Scheduled

Insurance (Medicare Advantage Plan) has authorized and I am scheduled for a 3T MRI on April 20th, the day before I leave for Austin.

3T MRI is the most advanced MRI and gives radiologists very, very detailed views of whatever organ they are looking at.  It quite fascinating.  Read about it here.

This MRI will tell us if the cancer is still confined to the gland or has become "extracapsular" (i.e. the cancer is outside the gland and invading other organs which was the case 4 years ago) and, if I decide to go through with another biopsy, it allows the surgeon to target only the tumor and not have to do 12 random cores.

We'll see just where I'm at soon.

Train Keeps a Rollin..........

Ending the 1st quarter of the year, I head into obtaining new data.  A conference with a radiation oncologist made me do some serious thinking and deciding it’s time for retesting of more than just PSA.  So, some news. Please indulge me if so inclined.

I continue to live with old friends in the Bay Area after my move from Austin 8 months ago.  I have 4 doctors: PCP, Urologist, Oncologist and Pain Specialist. All are within 15 minutes.  The Urologist is new as the previous one seemed annoyed the entire time I was there and then wrote incorrect visit notes (I thought he wasn’t listening to me...I was right!).  Just remember that physicians work for you. Not the other way around. It is your right to disagree with them, question them and fire them if need be. But I feel I have a good team.

I use medical cannabis.  I use it mostly in oral/oil form but also some in vape form but all with high CBD as well as THC. I buy it from the best known dispensary in the country. It’s tested, licensed, taxed, legal and easy. It also may be what’s kept my cancer relatively stable for some time.

My current stats/condition is as follows:

PSA: 4.8.  Double what it was when I moved here 8 months ago and about the same as when I was diagnosed with metastatic cancer which had already spread to my lungs. The rapid rise is of note and concern.

DRE: Nodule in mid right quadrant of gland.  About 1 cm. Similar to other exams of the last 4 years .

PAIN: Still battling peripheral neuropathy in both arms and legs but primarily lower legs and feet. I currently take 3 meds to keep the pain to a point where I can do something physical daily. Am at a stable place with them, but the meds don’t erase the chronic pain, only keep it to a level I can walk or go to the gym or, once or twice a week, work as a bartender or server for a catering company. They allow me  to move and sleep but the pain is 24/7. I'm grateful this works as I'm reminded when I was about 40 an 83 year old woman told me once, "If you don't keep moving, ya die!"

RECENT IMAGING: I’ve just had one of  the three tests on my agenda to see where I’m at.  It was a bone scan to look for cancer cell metastasis, which is the usual course for aggressive metastatic PC.  The results were favorable in terms of metastasis. The results read, “There is no focus of radiotracer activity suspicious for HDP avid osseous metastatic disease.”  In shorthand that means there is no evidence of bone metastasis.  THAT is great news! It also said, “Activity compatible with degenerative joint disease is also noted about both knees and in the bilateral feet and ankles, left greater than right.”  This is great news as it means if I can live long enough, I’ll need knee replacements and have to learn to walk on progressively more painful feet!!!!! It also said, “There are foci of activity present involving the right mandible and left maxilla compatible with sequela of periodontal disease.”  That too is awesome because it means if I can live long enough, I’ll need dental implants! Yay for longevity! #oldageaintforsissies #shitwearsout ;)

Kidding aside, the report about the degenerative joint disease in the feet and ankles compounded with

the pain of the neuropathy speaks a lot to the pure pain I struggle with in those. My feet and the peripheral neuropathy are the biggest impediments to my daily life currently. Fatigue to a lesser extent.

UPCOMING TESTING: The next test on my list is a 3T MRI which will do two things:  1) Will allow the 3rd test, a prostate biopsy, which will be a very specific, guided biopsy that just goes for the tumor areas as opposed to the 12, random “cores” of a traditional biopsy.  Regardless of the number taken, they still have to go via the rectum and puncture holes in the wall of same organ to get the cores of prostate. It’s not a hazardless procedure. 2) Show if the cancer has thrust itself outside the gland again into the area immediately around the gland.

But it is a necessary one to see if I still face exactly the same type of tumor that I did in 2014.  It’s likely but who knows? EVERY physician that has reviewed my records EVER has commented on how “unique” and “rare” my disease course has been.  Who’s to say my tumor is still high grade? They all think since I haven't taken hormone deprivation treatment since December 204, I should be quite ill by now and are surprised at my overall good health.  

Even if the tumor is the same “granddaddy” of them, or even if it is a newer, lower grade tumor, I may have the option of looking at treatments with minimal side effects such as cryotherapy, which uses a a carefully guided needle to freeze the tumor and ONLY the tumor unlike treatments such as radiation or radical prostatectomy that destroy the whole gland and come with annoying side effects such as urinary and bowel incontinence and impotence.

So I go forward this month to reassess the disease in my body.  When I was fully diagnosed four years ago this month, the prognosis was grave.  With no treatment I could expect one, maybe two years. With the treatments I took, five years was median life expectancy (note:  that was IF I’d continued the hormone deprivation, which I stopped at the end of 2014). But from 2016 through today, I’ve been using some form of cannabis oil.  Is this what has kept me “well” in the interim? Who knows?

But I do know that I remain adamant that I will not take poisonous treatments that impede my quality of life just so I can live longer. To quote a great man, “Like anybody, I would like to live - a long life; longevity has its place. But I'm not concerned about that now.”

My Status As We Enter 2018

It’s been awhile since I posted and, as we enter 2018, it’s time for an update.

As a reminder for those who have forgotten or are new to the blog, in March 2014 I was diagnosed with Stage IV, advanced, agressive, metastatic prostate cancer. It registered a Gleason 8 (Gleason measures the aggressiveness and degree of mutation of prostate cells and ranges from 1 to 10 with 10 being the worst). After meeting with oncologists in Austin and at MD Anderson in Houston, the agreement was that if I did nothing my longevity would amount to about a year. Not being ready to die at a very healthy, fit 53, I bit the bullet and followed doctor's advice.

I went through 6 rounds of high dosage docetaxel, a very potent, very toxic chemo drug.  I also went through 8 months of hormone deprivation where I had no testosterone.  The two knocked the disease down to where I didnt have lung lesions and the tumor had been driven back into the gland.

But the treatment left me with severe peripheral neuropathy. That is my major disabling
symptom these days.

Flash forward and, after almost 4 years since diagnosis and almost 3 since treatment ended, I now live in the East Bay area of San Francisco since June of this year courtesy of very generous, loving friends of 30 years.  

Here’s where I stand:

• No evidence of cancer other than the still living tumor in the gland.
• Relatively significant increase in energy; I do something physical (i.e. walking me, walking the dogs, the gym, heavy household chores) 9 days out of 10. 
• Slight decrease in peripheral neuropathy pain.  This has allowed my to take less pain medication and also allows me to work on my feet for up to 7 hours as long as I have at least a day off in between catering/bartending gigs.
• Only negative indicator is the almost full point rise in my PSA since I’ve been here (just over 3 ng/ml) which, given my diagnosis and history, is quite likely indicative or an active tumor.

Now, all that said, my physicians, both the oncologist and the primary care guy, are confounded as they feel that the “normal” course of treatment in the case of advanced, metastatic, aggressive prostate cancer is the chemo and then a lifelong course of hormone deprivation (i.e. no testosterone).  

I chose to forego all that at the end of 2014 and I’ve not been following the usual course of treatment since then.  They disagree with this and feel I should be on it…...but they are amazed that I’m doing so well considering. So amazed that the oncologist said, “Whatever you are doing, keep on doing it.”

So what am I doing?  

• I take CBD oil twice daily under the tongue (approximately 40 mg) and I also consume THC and high CBD cannabis in varying amounts at least once a day via inhalation as well as oral routes.
• I exercise daily in some shape, form or fashion.
• I get massage regularly.
• My stress level has decreased substantially in the last 6 months.  Far less financial stress and fear of living homeless.
• I’m trying to eat a very nutrient rich diet.  I look at the label on everything and make sure it is vitamin, mineral, protein, amino acid rich.

That’s it folks!  I have another PSA test by the end of January and we’ll see where things are headed. If it’s up substantially, I’ll need to reevaluate things.  If not, we’ll stay the course…...despite what the Western docs say.

The bottom line is this.  My advanced, aggressive, metastatic cancer is back in its cubby hole

for the time being and, while it is, I will be doing all I can to continue to work through the pain caused by chemo and I will enjoy life.

One day at a time.