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.

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.

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.

Rough Week with News of the Kind We’d Rather Not Have

The last week and a half have brought with them the news which seems to be normal these days.

Blood test numbers trending in the wrong direction, finances that make it difficult to finish getting the 26 year old car finally finished into a safe condition.  Oncologists that don't call back (funny how it works like that when you go from Cadillac insurance to Medicare) and increased pain levels that make the use of a cane once again a necessity.

I’ll write more in the next day or so with more detail and factual info.

In the meantime, please send a prayer or two my way.

Much love,

Scott

Pain Management - Recommendation in Austin.

Between perineal pain and the wretched limb neuropathy as a result of chemo (decetaxel to be specic),  I've been taking heavy duty pain killers for almost 3 years now.  My initial PM guy moved out of state and then I had to go through 4 PM clinics, 2 of which were pill mills and one of which wrote an incorrect RX then wanted to blame everyone but the DR. that signed the incorrect RX.

So, courtesy of my nephew, I was referred to Dr. Geremy Sanders of Texas Interventional Pain Specialist on 35th st here in Austin.  His is  SOLO practice and I ALWAYS see him, not an assistant.  He is warm, kind, asks good questions as to how I'm doing, utilizes DNA testing to make sure my meds are the best fit for me.

I am so grateful for this professional as he has given me so much of my functionality back.  When my pain is down to a manageable level, I can do normal things.....laundry....grocery shop.......see movie with friends....and on and on.  Without it, I'm in a fetal position in the bed or on the couch wishing that death would relieve the pain.

So regardless of where you live, if cancer or chemo side effects are leaving you with little to no ability to function, find a good pain management doc. It may take some looking because there are too many far more concerned with just getting your $$.  Look for a small practice with good Yelp, etc reviews and referrals from people you trust.

There is no need to suffer.

Here is a link to Dr. Sanders site: Click here for Dr. Sanders

Suicide - Not An Easy Topic, But an Important One

On a prostate cancer support group that I've been a member of for some time (https://www.inspire.com/)
I got a response to one of my posts where the gentleman raised the issue of suicide:

"Given this discussion, I'm going to post something on a topic that I've never seen here, realizing that it may not be welcome: suicide. I'm 61, had a G9, RP, repair operation, RT, and ADT. The ADT has largely worn off, but as I result of all this I'm completely unable to engage in sex; I have extensive nerve damage to my entire genital region. 

My med onc says I have a high probability of a recurrence, with will mean a life sentence of ADT, but my experience with it is that it's torture. (Just seeing a pretty girl with her boyfriend is a form of torture as well.) Now, I'm sure cancer in one's bones is far worse. Having said this, if/when I have a recurrence, I *may* deny the ADT, take my chances, and, if it goes the wrong way, blow my brains out. I don't think I'd be the first. "

I replied:

Suicide isnt an easy topic but an important one to discuss as one moves from trying to stay alive by "any means necessary" to accepting that sometimes one just has to accept that we all die from something, sometimes much sooner than we wish to.

I've considered this and fortunately, I have a dear friend who lives in Seattle and we've already agreed that when the time comes, if I choose to do so, I'll take up Washington state residence and take advantage of their physician assisted suicide (going to sleep with a Marilyn Monroe cocktail of barbiturates seems preferable to gun violence to me;) ) laws. I don't plan to wither away and die a slow, painful, bone cancer death.

Thanks for addressing the topic and best wishes to you.

Scott

Comments From Those That Have Given

I've been really touched by the outpouring of help I've received from friends as well as people I don't know.

Some of their comments:

My Husband suffers from Prostate Cancer Stage III Gleason 9 is back from year of PSA 0.2 know we have a long road ahead. God Bless you.

Scott I saw your story on my sister's page. Praying God's Continual Strength, Comfort, Love, Healing and Support surround you and shower you with blessings beyond measure.

Good luck buddy...I got ya back!

Hi Scott! Sorry I'm late to the 'let's fix up meatloaf' party! Miss you! XO 

Not much but I hope it helps.

I love you.

Love you so much brother, many people do in fact.

What type of job did spider man apply to? Web developer :) hope this helps (from a friend who ALWAYS has a joke ready...lol)

Dear Scott, I hope this helps a little. 

Love you uncle Scott!

Here's hoping you can get that clunker fixed!!!

To say I'm touched by these and the help is an understatement.

Life Almost 3 Years After Diagnosis...The Ups and the Downs and What’s Current - Part 2 - HOPE

Back to where I left off, so life changed quickly and dramatically in 2014.  I could no longer work, I was sick, in pain and extremely fatigued most of the time. This continues in various forms to this day. My energy is good for about 5 to, on a really good day,  8 hours.  I live in a garage apartment that is basic but safe and relatively comfortable...and I have a wonderful, sweet, almost 80 year old couple as landlords who have become like adopted grandparents to me. I’m really fortunate in having housing that I can afford (relatively speaking) with kind, considerate landlords.

My base income is $1500 a month.  This is from SSDI after diagnosis by my physicians as being disabled due to complications/side effects of chemo.  From that I pay rent, auto insurance, Medicare costs, Medicare supplement insurance,  RXs, Drs copays, food, gas and (God forbid) car repairs.  The base income almost covers basic expenses as long as there are no surprises.  If there are, all bets are off. I feel VERY fortunate to get the amount I do as people I know who are on SSDI often get roughly half that.  Social Security explained to me since I had worked and paid in since I was barely 14 years old,  I qualified for the higher end of payout which maxes at $1700/mo. So my hard work all my life paid off and it keeps me living indoors! But it doesn’t do much beyond that.

I’ve managed to get hooked up with doing food demos at HEB and Central Market grocery stores where on an average month I can pick up $200-300 which allows me to save a little, pay some debts to relatives and medical providers as well as to not be quite so stressed that my bank account will dip below $50. Shoot, in months where I have the extra income sometimes I go see a movie!  At Christmas I had major car issues and a major drop off in food demos and BOOM, my tired back was frighteningly against a wall financially. Only thanks to my kind landlord and generous friends and relatives did I manage to make it. I also enjoy the food demos because my stamina can handle 4 to 6 hours once or twice a week and I get to interact with hundreds of people which helps me feel connected to folks.....and this is vital to good mental health for me.

I spend a lot of time reading, writing, resting and I’ve been strangely comforted by having started a The West Wing watching marathon since I never really watched it when it originally aired and right now, one can fantasize about how those offices would be with good people occupying them. Enough politics.

Oncologist visit Tuesday January 24, 2017 - PSA Rise and the Velocity of the Rate at Which It Is Rising.

I saw the Onc this week to follow up as to my status and any new possible treatments.  Of note was concern  over the “velocity”, or rate at which my PSA level had risen in the months since late August. At the beginning of 2016,  after hormone deprivation and chemo, my PSA was considered, at .95 ng/ml, as unmeasurable.  From January of 2016 to August 2016, the level rose from .95 to 1.49 or about half a point in 9 months.  In the next three months, it rose from 1.49 to 1.97, or the same half point rise that had previously taken 9 months.  At that rate, I will be back at the same level I was at when originally diagnosed as Stage IV (4.91) in about 1 and a half years.

The oncologist stated that an increase or “velocity” of this rate was troubling given my history and that while he was unable to say without MRIs and other diagnostics with 100% certainty that the tumor was off to the races again, he felt confident in saying this was likely the case.  He also reminded me that when diagnosed I was advised that there was no “cure” for such an advanced case of PC that had metastasized like mine and that this was still the case.  He stated the best I could hope for was to delay the growth of the original tumor and delay further spread of the metastasized cells. In a nutshell, this is not something I’ll ever be cured of and it will grow and spread.

Another Treatment to Consider - Provenge - $100,000 to Get Another 4 Months

We discussed the immunotherapy treatment called Provenge which takes an individual's own immune cells and reprograms them to attack the cancer cells.  It’s something I’ll look at as chemo was a one shot deal, and I’m not sure I’d do it again even if it were an option and hormone deprivation is something I tried for 8 months but found the side effects too severe.  The upside to Provenge is that it’s got a good track record and the methodology makes sense to this layman.  It also seems to have relatively few side effects and they seem to not be long term, severe ones. The most common side effects include chills, fatigue, fever, back pain, nausea, joint ache, and headache. On the more serious end of the spectrum, are stroke, extreme bone pain and infection.  Also of note is the average life survival rate increase averages 4 months.  Oh, and it costs about $100,000.  Medicare would pay for 80% of that and while theoretically I would be responsible for the other $20,000 (oh sure, no problem!), I was advised that the manufacturer of Provenge usually finds a way to write off the 20%.  After all, $80,000 is not bad for one patient, right?

In summary

My life is quite different now.  The great health I enjoyed right before diagnosis and beginning treatment - gone.  The wonderful,, enjoyable good paying job that I enjoyed so much - gone. The loving relationship I was in is now long distance and more a case of very good, caring friends.  There are no recreational trips as money for them or going out to eat just doesn’t exist  

On the bright side, I’ve been heartened by the support of family and friends.  The niece and nephew who are busy raising my two great, great nieces have been there whenever the old clunker car gives out. A handful of friends checks in on me and stays in contact on a regular basis.  I’ve made a new, delightful friend here in Cedar Park who goes out of her way to socialize and get me out of the house; she’s like having a new sister and it’s brightened many of my days.  I’ve made several new friends from the grocery stores where I do the work that I can and I so enjoy seeing them the few times a month I demo. I’ve learned that I’m a pretty good economizer and sometimes impress myself with my ability to squeeze a dollar for all it’s worth.  I’ve also been grateful for time with children in my life because they have that wonderful innocence and silliness that we all lose to some degree with age.  They make me laugh and smile.  

So it’s not been a bed of roses and it doesn’t appear that anything will make it so.  But, as Shirley MaClaine once sang, I’m Still Here !

That’s it on the updates to today.  As I consider Provenge, I’ll write more and I’m also working on a Top Ten Things for Younger Men with PC to Consider (it may be Top 7 or Top 15, not sure yet;)  as the increase in men under 55 getting aggressive PC has been a rate of a 6 fold jump in 20 years.  Additionally, getting PC, be it a mild case or an aggressive case is quite different for a guy in his 40s than it is for a man in his 70s.

Finally, heartfelt appreciation to those who have helped financially.  Asking people for money is not an easy thing for me as I’ve always been able to cut it on my own.  But times are different now and while I haven’t quite raised enough to repair my sole means of transportation, I’m much closer than I was.  So if you have a spare $5, I’d appreciate your considering throwing it my way or in the direction of someone else who needs a small hand up.  It not only helps financially, it helps emotionally.  You can give via YouCaring right here. 

Much love to friends, family, the readers of this blog and anyone who has been affected by this dreadful, life altering disease.

Life Almost 3 Years After Diagnosis...The Ups and the Downs and What’s Current - Part 1

Soon it will be 3 years since my life changed dramatically.  In January 2014, I was happily ensconced in my tech support position at one of the best start up software companies in Austin, Kinnser Software, where I was a delighted to be employee #43 (they now have over 300 I think).  I was also a year into a wonderful, loving relationship that had brought me some of the greatest joy of my life.  I was eating good, wholesome, home cooked meals most days and I was running about 8-10 miles a week and hitting the gym 3-5 times a week.  I FELT GREAT!!! No inkling of any kind of illness.  At all.

Then I went for my yearly physical.  My wonderful PCP noted my PSA had jumped at what he described as a “troubling” rate.  After a urology exam, MRI and prostate biopsy they showed an advanced tumor that was a Gleason 8. Gleason scores range from 2 to 10 and indicate how likely it is that a tumor will spread. A low Gleason score means the cancer tissue is similar to normal prostate tissue and the tumor is less likely to spread; a high Gleason score means the cancer tissue is very different from normal and the tumor is more likely to spread.  Mine had indeed spread to both lungs and was outside the gland, known as “extracapsular”. It was also described as an aggressive, virulent strain of adenocarcinoma. In other words, a really bad, very serious cancer.

So I jumped on the hormone deprivation therapy (chemical castration) and chemotherapy (docetaxel) train.  Long story short, they did what they were supposed to do:  they reduced the size of the tumor, rid my lungs (as best medical imaging could tell) of the cancerous nodules and I was in a state of being “stabilized”, but not in remission.

I survived 6 rounds of chemo and I did two, four month rounds of hormone deprivation.  Most women had more testosterone than I did during those 8 months.  I decided I could not handle the side effects of the chemical castration which included extreme fatigue, weight gain, muscle loss, absolutely zero libido and just a general feeling of malaise.  So I opted out of that “therapy”.

The chemo was brutal.  I lost my hair, I had little to no appetite and my energy was non-existent.  I also began to experience what’s known as “chemo brain” which, generally speaking, is a loss of cognitive function and horrible lapses in memory. I also began to experience neuropathy (pain from damage to nerve endings) in my arms/legs, hands/feet, wrists/ankles. This side effect continues to this day and is THE most debilitating thing to come out of all this.  I take two different narcotic painkillers just to function and get routine stuff done.  Docetaxel has been used for a couple of decades for women with metastatic breast cancer and so many report suffering these and other side effects for years…...long after treatment ends. For many who are lucky enough to see their cancer go into remission, they still struggle with the damage done to their bodies by the “cure.”

That is the story up to date in a summarized form.  More detail can be found in some of the earlier 85 posts on this blog (yes, I’ve been at this a while now).

In summary:

Hormone Deprivation Therapy

No question an effective form of treatment.  For many PC patients, it keeps the cancer at bay for a long time, in some cases years.  The side effects from having no testosterone are severe but probably more tolerable for an older (60s-90s) man who has already started to see a natural decline in the hormone as a result of age.  For a “younger” man (30s-50s) though, it can be devastating.  I decided I’d rather live a shorter period of time feeling more like me than a longer period of time feeling like a eunuch.  So eight months was enough of HDT for this “young” man.

Chemotherapy - Docetaxel

No question this “therapy” did it’s job but it’s a brutal process.  The nausea, the hair loss, the fatigue, the thrush in your mouth, the feeling like you always have the flu, the cognitive decline, and, worst of all, the extreme neuropathy make me wonder if the additional time it bought was worth it.  Does it make sense to make yourself feel really sick and in extreme pain all the time to buy a few extra months (average life expectancy increase after undergoing docetaxel treatment is 4 months.  Yes, approximately 120 days)?  Given the quality of my life now, I can honestly say that if I had it to do over again, I wouldn’t do it.  Maybe if I had kids and they hadn’t grown up, gotten married had my grandkids, I might feel differently.  But now it’s just me and I hurt all the time;  that’s not a good quality of life.

Cannabis Oil

In late August, after working with a wonderful, kind, talented friend who did a video for me and my dear brother to raise the funds via a YouCaring (think GoFundMe) campaign, I obtained a roughly 4 months supply of high grade cannabis oil.  I took a gram a day split between an oral dose and a suppository.  On the positive side, roughly two weeks after  starting to take it, the WORST part of the neuropathy, that which was in my palms and the soles of my feet, was greatly reduced. I wasn’t and am not pain free by any means, but I was better to the point where I could start going to the gym and using the elliptical machine and, once in awhile, I could “run” for a few minutes.  I could also walk about a mile in the neighborhood at night.  It was a HUGE improvement.  On the negative side, my PSA, which had been rising at a steady rate since I ended the chemo shot up in at an enormous rate during the four months.  The “trajectory”, as it’s called,  was indicative of the tumor being quite active and growing like a well fed, hungry baby.  So cannabis oil, while it had it’s benefit, wasn’t the panacea I’d hoped for.

That’s it for today.  I saw the oncologist yesterday and there is more to share but I’m exhausted and this is enough for anyone who is interested to digest.  More to come tomorrow regarding my current status, another treatment option that has been offered, my lifestyle on disability and other EXCITING reading!  ;)  Thank you all for your support and, if you have a few dollars (I mean $5 would be huge to me!) to help me improve my transportation situation and pay some medical bills, please click where it says “I need your help” and, as Willie Nelson likes to say, throw me a bone.  Best wishes all and talk to you tomorrow.

Scott