Saturday, May 12, 2018

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.

Thursday, April 5, 2018

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.

Wednesday, March 7, 2018

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.

Saturday, January 6, 2018

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.

Tuesday, September 5, 2017

Checkin and Status from East Bay

As I approach three months in the East Bay area of San Francisco, some updates:

  • My last CT scans show no visible sign of cancerous cells in my torso although digital exam still indicates a mass or tumor in the upper right quadrant of the gland.  CT doesn’t penetrate the prostate gland adequately and only MRI and, more so, biopsy will show PC in the gland..
  • My new oncologist reminds me there “is no cure” for what I have.
  • I take high CBD oil with a similar amount of THC twice to three times daily under my tongue.  It’s delivered legally to my door by a very nice delivery guy.  The cost is a fraction of what I paid a year ago to get it shipped to Austin.
  • My PSA has jumped to over 3 ng/ml, up by almost a point. Indicative of a gland/tumor swelling
  • Neuropathy has eased but my feet and hands still ache 24/7 and legs and arms to a lesser extent.  Now is my time to focus on healing this damage so I’m reevaluating diet and I get daily exercise and sun.

In summary, the move to the Bay Area has been great in terms of accessing CBD/THC oil without fearing legal consequences.  The temperatures here (most days) allow me to get out and do something every day.  Cancer is still present in my body but relatively stable.

But today, right now, I am better than I’ve been at any time since diagnosis and treatment.  

And for this, I am grateful.

Sunday, July 2, 2017

A New Home and Easy, LEGAL CBD Oil

17 days ago, I made a major change in my life with a move to the East Bay area of San Francisco. This was at the invitation of two friends of over 30 years who had made the offer for me to move in with them some months back. But I had only begun to feel relatively well enough in the last 3 months that I decided to take them up on the extraordinarily generous offer.  I’ve known this couple since I met and roomed with them in Corpus Christi in the mid 1980s.  So I made the move on June 17th.

Of the many positives this allows me, chief among them is the easy, LEGAL access to medical cannabis and cannabis oil.  I’ve long ago decided that THE best treatment for my prostate cancer with the fewest side effects was CBD oil.  In Texas, it took a great deal of effort to acquire, having to have it shipped from out of state while committing a felony.  In California, it’s legal and all it requires is texting the guy from the dispensary to deliver.  Then he shows up at your door.

It’s that different.

Thursday, April 6, 2017

My Status

It took me a couple of weeks to feel like writing, but here’s where things stand.  After my last visit to my PCP, exam and discussion of PSA results, here’s what he has to say:

“ I am the Primary Care Physician for Scott L. Miller.  I am on staff at Austin Regional Clinic where Mr. Miller has been a patient for the last decade.

Mr. Miller was diagnosed with a very advanced, aggressive, Stage IV prostate cancer with metastasis to his lungs in late 2013.  The tumor was outside the gland (also known as extracapsular) and involved with his seminal vesicles. His PSA ( a marker used in evaluating potential prostate cancer or the disease itself) was tested with a result of 4.91 ng/ml.  Although he didn't realize it, he was a very sick man. He then underwent both hormone deprivation therapy as well as chemotherapy with the very toxic agent, docetaxel in 2014.  The therapies were effective at reducing the metastases, the size of the tumor and his PSA level, reducing the level to less than 1 ng/ml in April 2015.

Since that date, Mr. Miller’s PSA has risen consistently to a 1.23 ng/ml in April 2016 and now to a 2.24 reading as of last month.  Digital exam indicates a mass/tumor on the upper right quadrant of the gland.

Given his history of metastatic disease, the rapid trajectory of his PSA rise likely indicates a return of the aggressive tumor and the progression of the disease.

Mr. Miller continues to suffer from extreme neuropathic pain in his feet, hands, arms and legs likely induced by the chemotherapy treatment and consults with Dr. XXXXX for pain management.”

My physician is clear on what I’ve know since all this started.  I’m fighting a losing battle.  At the rate of progression of the PSA level (about 1 ng/ml/year), I'll be back at the level when diagnosed at the end of 2013 in roughly a little over 2 years.  WIll the tumor once again be outside the gland?  WIll it have metastasized to lungs or other organs?  Who knows?  But based on previous experience and physician statements, I think I know the answer.

Painful neuropathy has returned after my CBD experiment.  While I try to do a food demo every weekend, even that proves challenging.  So that leaves me to survive on by meager SSDI allwoment.  Have you ever tried to pay rent, insurance, buy food, pay exorbitant prices for meds and keep a 26 year old car running on less than $1500/mo?  It’s not easy and I fall short monthly.

The only treatment option is to go back on hormone deprivation therapy,  which I refuse to do.  The side effects were simply too extreme or do nothing and remain on palliative care.

I spend many lonely days at the absolute edge of Cedar Park in my run down, basic, garage apartment.  The internet, old movies and sleeping for as many hours as I can have become my friends.

Chemo brain continues to plague my memory and recall.  As much as the neuropathic pain, that is extremely frustrating.  To write a clear sentence and certainly something like this blog, is a huge effort and requires multiple rereads.

So what advice can I give a person dealing with a disease that will kill them?  Value your healthy, fun days like they were platinum; they are more precious than you may realize and are not endless.  Enjoy children when you are sick as they will make you laugh and help see the continuity of life. Get out when energy and pain level allow; this will make you feel connected.  No matter how you feel, be kind to those around you, especially caregivers;  They're trying to help. Share your life wisdom;  you know more than many.  Have a nice, soft, terry cloth robe as it will provide much comfort.  Forgive those who have wronged you and focus on their good points.

Above all, accept reality and try very hard to make peace with it.