Xofigo RA-223 A Half Year Later

It has been just over a half year since my last Xofigo treatment and I thought maybe some of you intrepid prostate cancer adventurers might like to know that the treatment didn't turn me into some cyclonic metabolic mutant.

Just as a refresher, Xofigo is a Radium isotope that just loves calcium.  Once injected, off the now happy isotope goes in search of calcium fields.  You may remember, or not, your oncologist telling you that bone mets, lesions or whatever confusing word he/she chose, generate shitstorms of calcium.  As the Effing Evil Empire gnaws away the good guys are delivering calcium as fast as their little whats its can deliver.

RA-223, Xofigo goes to this calcium and lets go with the radiation beating up any Effing Evil Empire thugs in the neighborhood.

The application of Xofigo is just a simple infusion.  However it is done in the Nuclear Medicine department and is still fairly new so you will probably find yourself going to a Cancer Center for the infusion.

Once past the waiting interminably long room the process goes very quickly.  They hook something similar to this and your done in ten minutes or so, no fuss no muss.  

Different techs use different set ups.  Some of the set ups, tubes valves and such, would rival the best still set up in Kentucky.


Once it is in you are free to go and don't have to come back for another month.  Which is no biggy cuz' if you are thinking of doing Xofigo you are probably visiting the hospital once a month anyway.

Was it effective?  Damn straight it was.  Effective enough that upon completion of the regimen I applied for a trial to see if additional doses were effective.  

Side affects, for me none.  Not a one.  This is fairly amusing as when you read your med data sheets and see the line "less than 1% experienced....." I'm consistently in that less than 1%.  So you might want to take my no side affects comment with a dose of whatever you have.

Seven or so months later the mets that had hurt the worst aren't extremely painful except when I move certain ways.  That sounds worse than it is.  I'm recently in a wheel chair so "move certain ways" has taken on a new meaning.

This stuff is such an amazing pain killer alone that I'd willing become the Xofigo poster child.  Actually I believe the only place in the world the drug is produced is in Norway.  I'd have to telecommute I think.

So, even seven months later, if you have serious bone pain caused by the Effing Evil Empire Xofigo is the ticket to reduced pain.

The Other Big "C" Word

Perhaps I'm more retrospective as I'm not your average healthy American.  But with each passing year I become more and more appreciative of the other big "C" word.  

This year, my thoughts turned to years way way past.  How as a child, I would lay awake all night long anticipating the coming of morning.  Vaguely I could here the grown ups having their celebrations farther down the hall and out in the living room.  The bedroom of my grandparents house that my brother and I were exiled to seemed cavernous but at the same time stood no chance of oppressing our enthusiastic anticipation of the coming morn.

The smell of cigarette smoke, this was an era when you were imprisoned if you didn't smoke, drifted into our room.  Grown up voices became a little louder as the evening got happier.  Soon, my brother and I eyes could no longer stand guard and we drifted off to sleep  to awake in the morning with a level of energy that can't be achieved on just a few hours sleep.

I've also found myself hoping that not only I, but my family and friends, hell everyone experienced the same anticipation.  Experienced all the family antics around the dinner table, sober, drunk or otherwise.  Hoping they were able to experience sitting in an island of quiet over by the planter watching the rest of the family laugh, hug, nap, sulk and pout.  Phone calls of festive greetings from family far away and friends nearby.

Sure there were years, like this one and some before, where everything wasn't perfect or even half way OK with one or the other of us.  But, still, the spirit of the day seemed to at least white wash those imperfections if not temporarily erase them.  What choice does one have?  Drag everyone down to drown in your woe is me?  Or, post pone the woe is me for a couple of days?

Today and tomorrow I make a decision.  Let the big "C" [Effing Evil Empire] kick my ass.  Make me miserable.  Pull everyone else down with me.  Or, embrace the other big "C" that is Christmas Day and every great feeling that goes with that big "C'.

I'm choosing the big "C" that is Christmas and screw you big "C" that is cancer...for the next couple days you are lower case "c".

Merry Christmas to all.

Talk to you later.

A New View From Two

Recently my progressive Neuropathy succeeded in landing me in  two wheel transportation mode.  Nope not a bicycle but a wheelchair.  I've not written because unlike cancer and everything that has come with it, being wheelchair bound as left me without even a breeze left in my sails.  Words that come to my mind are pointless, frustrating or "really paralysis!  Isn't cancer enough?"  There are days, hours and moods where I don't even recognize myself.

I seem to be slowly climbing out of the muck that is woe is me and selfishly thought it might help me if I share a few early wheelchair experiences in hopes it might help someone even newer at this "View From Two" than I am.  These are purely observations from my experience.  Simple things that wheelchair pros may deem too benign to even mention.  So, this post isn't a how too but rather a this is what happened to me.

Unless you were a young genius when you bought your house not a single thought of A.D.A. compliance crossed your mind nor did you look at the front porch and say to yourself "boy those stairs would be tough for a person in a wheelchair."  I look at the stairs in my home and I immediately think of...

If you have stairs you will need a ramp or a huge bank account.  Until my best friend came over and installed a ramp

we used a medical transport company to get to my appointments.  Quite handy, they would come get me down the stairs haul me off to my appointment and charge $150.00 a trip.  Not a penny of which was covered by insurance. That would have been over $2K just during radiation.  I can't afford that.

As you can see this ramp has a non-skid surface.  Remember, if you are in my situation, you can't feel anything below your waist.  Your feet are below your waist.  So, as you unknowingly have a foot trapped under your chair while going across a non skid surface your foot may end up looking like this;

While not painful, no feeling remember, they are bad enough to be concave wounds and wounds do open your world to infection.  Not good to fight an infection while you are fighting the Effing Evil Empire. Wear shoes.

Transferring from the wheelchair to various places can be a challenge.  It took almost a month for us to get the transfer from the chair to the pick up to be something less than a Laurel and Hardy comedy.  In the house though there are a few things the wheelchairer will need.

My insurance supplied a dinosaur of a wheelchair.  I quickly learned, as did my caregiver, that the wheelchair itself can damage you.  Especially the dinosaur versions as they have pinch 

points that will get you at the most irritating moments.

You'll also need some things to help you make transfers.  Especially two very important places, your toilet and shower.

A riser for your toilet

A shower bench

Unless you want to hassle with your chair and transfer every time you have to pee [if you have prostate cancer then peeing is a seemingly endless proposition] you'll need some portable urinals.  Don't get tricked by the glow in the dark urinals only the lid glows in the dark.  The lid you rip off and throw away first thing.

You might want to add some rails to help with your transfers.

A grabber for all the things out of reach which is everything

However, if you drop things and you will, you can teach your puppy to pick them up  and bring them to you.  Connor, pictured below, even brings in the mail.

Make sure you get a decent pair of gloves they will save your hands especially when braking on slopes.

What I don't have a pic of is patience and frustration.  If you wake up one morning and suddenly need a wheelchair everything, every move you took for granted is now a challenge and an adventure.  This goes for you caregiver too.  If your caregiver is your spouse she gets it doubly hard.  Don't think that she isn't frustrated, scared, and trying desperately for patience.  Make sure you tell her you appreciate everything she does and you must realize that she didn't plan on this phase of her marriage to be such a health nightmare.  Being a paraplegic is as tough on your caregiver as it is on you.  Try not to forget that.  Sadly sometimes I do.

RA-223 Xofigo

Caveat:  Once again I remind the reader that I am not a doctor nor do I play one on TV.  I'm just a guy with Stage IV Prostate Cancer sharing so those of you unfortunate to be coming up behind me can do it without so much trepidation.

For most of you this will be the driest reading I've ever posted as it is purely informational and very specific to those of us and our caregivers fighting the Effing Evil Empire with any and all means. 

RA-223 or trade name Xofigo [pronounced Zo-fe-go all long vowels] is a Radium isotope.  In some mystical physics mumbo jumbo RA-223 is in love with calcium.  For those of us with Castrate Resistant P.C. and bone mets this relationship is a great thing.

Where there is a met there is a calcium producing machine. Keep in mind your bones are replaced about every ten years.  Slower as we get older.  If your bone has an ouch, in this case a met, the calcium production is much more prevalent.  This is why they give you an isotope that is attracted to calcium when you have a bone scan.  That isotope also loves calcium and is the glowy part of the resulting bone scan picture.  [I think in the past I might have posted one of my scans if you are curious]

Xofigo is quite new.  In fact so my new my main Oncologist wasn't familiar with it.  This doesn't mean my Onc isn't in the know it means that the medical bureaucracy, even in a world class cancer center, is slow slow slow when adding to their pharmacology.  However, my Radio-Oncologist was familiar with the drug so just make sure you keep asking or bring a web site for reference.

Without becoming even more boring there are many different types of radiation.  For example, Gamma radiation would be the one that will make you all crispy when someone drops the bomb.  Additionally there are different types of atomic particles given off during radioactive decay.  This is a good thing.

RA-223 emits an Alpha particle.  This is new in the treatment of bone mets.  The Alpha particle is much less active than Beta particles and the area the Alpha particle effects, in the case of RA-223, is measured in cell widths.  This allows the RA-223 to embrace its love for calcium, emit its Alpha and kill cancer cells all without terrible bone marrow damage.  Please remember...this is not a cure.

The "drug" is administered in a painless IV push and it takes more time in the waiting room than it does to get your dose.  It is painless, well for me as I don't have a needle issue.  I'm on my second dose with no particular side effects which for my body is pretty damn amazing.  Especially when I seem to always fall into that "less than 1% of patients suffered such and such side effect.  

Six doses over six months.  They will keep close watch on your blood.  I found it easiest to time my monthly Onc blood test to within five days of the Xofigo [five days is the rule] treatment so I don't have to make so many trips.

I won't bore you with increased survivability stats and more technical crap.  You can look it up or ask your Onc.  Just thought I'd share so you all could see there is another new option out there in the ever changing landscape of the fight against the Effing Evil Empire.

I'm assuming some of my posts are entertaining.  Please accept my apologies as I know this one is not.

Talk to you later

Defend Us From Dirt

A few days ago, Connor and I were suffering cabin fever on a sweltering summer's day, both Connor and I welcomed my wife's announcement that she needed to go get a pickup load of dirt as a much needed escape.

The "dirt" place is about three miles from the house and Connor did the dog thing all the way out there, tail wagging and jowls flopping in the breeze.  Hell I wasn't driving so I did pretty much the same thing sans tail.

Arriving at the "dirt" place Connor watched attentively, this was all new to him, the money exchange at the scale house.  We were told where to park and while waiting for the loader Connor enthusiastically took in all the heavy equipment traffic seemingly running randomly amok about us.

As the front end loader pulled up to the truck things began to change for Connor and he adopted his worry look which is similar to his "why aren't you playing me" look.

As the dirt began to fall from the bucket into the back of the pickup Connor decided he wasn't really sure what to do.  Finally the sound of the bucket being shaken back and forth to get the last of the dirt out was too much and Connor dove down to the floor cowering behind the drivers seat.

As we started to drive off Connor repositioned himself on the transmission hump facing the pile of dirt that was seemingly chasing him.  For the entire three miles Connor wouldn't respond, or face forward which would mean taking his eyes off that dangerous pile of dirt following us.

Probably unkind of me but I smiled and laughed the entire three miles.

What's the point of this post.  Well reading back I don't see any Facebookisms so that can't be the point.  I suppose one could say the moral of the story is no matter how complicated your life take time to notice things.  Or don't be afraid to try new things.  Then again...It is, to me, just an amusing time that made me laugh and laugh which felt really good.  Perhaps you had to be there.

Talk to you later.

What is the Point of Pointless Pain

I've been thinking about pain lately.  Not emotional pain.  Not, damn I stubbed my toe pain.  But the agonizing compound fracture type of pain.  I find that level of pain not only useless overkill but piss poor engineering on someone's part.

Yes yes, I know, pain is an important part of the bodies function to protect itself.  Lay your hand on the stove burner, yep that hurts and if you are smart you jerk your hand away.  Cut your finger with a knife, sure enough that hurts too go get a band aid.  But at some point pain just becomes excessive and a waste of our body's energy.

Seriously, think about it.  Mountain climber guy falls off of a cliff leaving him with one jagged edge of his tibia is sticking out the back of his calf.  Now mountain climber guy can look down and assess the situation visually.  "Holy crap that hurts and that bone shouldn't be doing that."  But you see, he can't assess the situation visually as he is writhing in absolute complete agony.  I ask what is the point in that level of pain.

In my case I know I'm in the battle of a lifetime with the Effing Evil Empire.  Lately the E³ has been on the march and the battle rages in my various bone metastasis.  These battles are painful.  No not painful, at times they are take your breath away, whimper like a babe, mewl like a kitten painful.  Why?  Why not tone it down by at least half.  By half would at least cut out the mewling.  I know I have mets. I would know if they just hurt.  I don't need a direct take your breath away shot of pain to tell me something is amiss in my body when a shot across the bow would work just as well.

I appreciate the need for pain.  I really do.  Obviously the doctors do to or they wouldn't have this cute little chart in every room:

TEN WORST PAIN IMAGINABLE!  Hell we don't need that.  That's just stupid.  I propose that five becomes the new ten and there is no pain over five.  Anything over five is just really useless to mountain climber guy, cancer person, birthing women and anyone else with owies, boo boos, and compound fractures.

Don't even get me started on tooth aches!

Talk to you later.

Cannabis, Medicine and FECO Oh My!

I’m no doctor, expert or stoner.  This post is purely based upon my experiences with Medical Marijuana and offered as a reality reference only.

I can’t help but notice in reading the various FB threads and news feeds devoted to the medical virtues of Cannabis how confusing it all seems to be.  This is because, whether proponents want to admit it or not, modern Cannabis is a pharmacology in its infancy populated by many desperate people seeking miracle answers.

I wouldn’t be totally transparent if I didn’t mention I’m a proponent of Cannabis, especially for medical purposes.  I would also be remiss if I didn’t [as I’ve mentioned in previous posts] say that my goal isn’t to get high…I can’t stand being pot-high.  I would also be remiss in not saying I believe through reading testimonials etc. I’ve come to the conclusion that Cannabis is my W.M.D when it comes to beating the Effing Evil Empire.

Now that my “credentials” and disclaimer are out of the way, I can say that medical marijuana plays an important role in my fight against the Effing Evil Empire with the down side that I hate to be pot-high.  That said, I thought I’d throw out a few of my experiences for those of you newly fighting the Empire and those of you that may have misconceptions about the medical Marijuana market place.

The first thing to realize, a lid is a lid is a lid and it is a measurement that only over-fifties will recognize and it, a lid, no longer exists.  Good thing there are no seeds in a bag anymore because there are no more album covers left to help you with the culling process.   Ironically, the second thing to realize, the current dispensary entrepreneurs are mostly over fifty, so their marketing is stuck in the 60s and 70s.

Thus, the name of the dispensaries and medicine, seem for the most part to carry names that harken back to the mid-sixties and would send any “newbie” back into the arms of Big Pharma.  Don’t let it!  Just because your nearest dispensary is named something like “Holy Crap I’m Really Baked” doesn't mean there aren't caring and informative people tending the store.  Also, get used to the Jamaican flag and Bob Marley. Like I said, many dispensaries are stuck in the past.  Rule of thumb, just like your doctor, if you don’t like your dispensary find a new one.

As for the medicine.  Each and every strain has a medicinal purpose and you get to make an informed choice either through Internet resources or informed “bud tenders.”  What you won’t be able to get away from, for now, are the names of the medicine.  Just smile as you read: Obama, Strawberry Kush, Skunk Wallow, Diesel Spill, Crotch Haze, Ear Wash, Couch Lock, etc.  Okay I made most of those names up, but each strain offers a very specific remedy for very specific side effects if not specific cures.

The big gun in fighting the Effing Evil Empire is Cannabis Oil or FECO [Full Extract Cannabis Oil].  People argue hard and long about how to make it, how much CBN, THC, etc. etc. (bullshit ad nauseam) should be in your oil.  Whether to follow Rich Simpson's plan.  Suffice it to say, a room divided no matter how educated the room thinks it is.

Simply put, Cannabis Oil is made in a few steps.  Place the bud/flower in a solvent, heat the concoction without blowing your house up then evaporate the solvent off and you are left with a potent oil.

Importantly, if you are the FECO consumer [FECO being Full Extraction Cannabis Oil] you need to be concerned about the solvent.  Many of the oils use solvents such as Naptha.  Really?  Do you want that in your body?  Choose oils that use Everclear or food-grade alcohol.  I started with the Naptha version and was poisoned the whole time.

Then there is the alphabet soup….THC, THCA, CBN, Decarboxilation [or some spelling of same].  No one knows what the right combo is.  Get the medicine in you and adjust accordingly.  Simple.  Worst case, won’t cure you, but will make you more comfortable.  No one has ever, ever OD’d from Marijuana!

If you don’t like the side effects of Cannabis there are a couple of things you can do that work famously.  Depending on the strain you choose you may or may not experience a huge case of anxiety.  Simple solution, glass of orange juice…’nuf said.

Or, switch your strain, Indica and Sativa and hybrids there of have distinctly different effect on each distinctive one of us.  Whatever works for you.  Simple!

If you don’t want to get high, two simple solutions.  The first, an easily attainable amino acid from any vitamin aisle, Citacoline.  If that’s not good enough then make your own suppositories with coconut oil.  These are what work for me.

Cannabis oil, or FECO as It’s being called now, benefits many of us - patients and care-givers alike.  Don’t let the infancy, schools of thought and ignorance of the product, steer you away from such an effective tool in the fight against cancer.

Talk to you later.