Provenge III: T-Cells Return from Training

Sorry it's another all cancer all the time post but I truly wish I had this info in hand instead of going in as blind as a mole when it was my turn.

Since Provenge II, it's been two days and your recently dumb T-cells have been flown back from school.  Now these new Ninja cells need to get into your body and start kicking some Effing Evil Empire ass.  This step is easy especially if you had that port or catheter put in.  If you chose not to do that all I can say is "You should have listened.  Hey can I get that itch for you."

Apparently the Ninjas are trained somewhere in the cold frozen lands to the North because the Ninjas are cold.  Really cold!  So even if you've just had a hot flash so severe they called a flood warning take that blanket the kindly nurse offers.  You'll regret it if you don't.

About the worst part of this process is boredom.  The saying "He died of boredom." has some truth to it so make sure you take whatever entertains you to be entertained while your Ninjas are marching off to do battle.

Basically the process goes like this.  Idle chit chat while the nurse cleans your "spouts" [I'm sure there's a medical term but it escapes me at the moment] before hooking you up to the IV.  Then you wrap yourself snugly in your blanket and in my case grab the lap top and get caught up on some work.  What you don't have a port or catheter and you can't move your arm?  If it seems like I'm rubbing the readers nose into this "plumbing" issue well, it's because I am.  

After about most of an eternity the little beeper on the IV machine goes off prompting the nurse to come over, unplug and once again clean your spouts and caps them off.  However you are still not done.  There is a waiting period.  You have to sit, cuddled in your blanket you earlier gladly took from the nurse, and make sure there are no immediate adverse reactions.

In my case, for the first attack of the Ninjas that was a great idea, but for the second version just more boredom.  The IV  temp is so much lower than the average temp of a healthy human and though wrapped in a warm cozy blanket I suddenly got cold and started to shiver.

I sat there shivering until my nurse noticed.  Boy did I get a tongue lashing for not telling her I was sitting in my chair shivering uncontrollably.  Apparently that type of shivering is called rigors.  Amazingly the treatment is a little bit of Demerol. [It was a year ago but my useless memory tells me I might be wrong on what it was]  Demerol?  Yep I was a little put aback too until maybe two minutes later, still lucid and functional [they don't give you much] I was wrapped in my warm cozy blanket as still as a rock.  So if you end up with the rigors do not hesitate to let your nurse know.

The worst part of the whole process was the traffic as I made my way to the Cancer Center.  Truly of all the things you've gone through to make it to the Provenge stage this is the easiest and most tolerable. It truly was that simple.

Other than those rigors the only affect I suffered from the Provenge treatment is my prolonged life span.

Talk to you later.

Provenge III and Taxes

Sorry no installment tonight.  In keeping with tradition I'm doing my taxes the night before they are due.

Talk to you later

Provenge II: Gathering Dumb T-Cells

Sorry this is going to be all treatment all the time so if you don’t want to know about the Provenge treatment I had a year ago last month you might want to think about moving on to your desktop hangman [ooo gallows humor twice]  game or some such but I’ve had some requests about Provenge.

Please keep in your mind that the guy writing this post is no doctor.  Someone vomits and I’m running the opposite direction hoping someone else takes care of the vomiter lest I turn into the vomitee.  Hell, one time I ran my pick up, albeit slowly, into a telephone pole because my dog threw up in the front seat and I instantly became vomitee. Hey she was a big dog.  So no doctor could I be.

With the Provenge treatment you will have to do two steps twice for a total of four steps.  Get the dumb cells through a process called Pheresis and ship them to boot camp.  Then two days later get the Ninja cells back in your body via infusion.  Then a couple weeks later do it again. 

 

As I understand it, Provenge is a teacher of sorts.  The nurses grab a few dumb cells from you that the Evil Empire has confused, sends them to school to become prostate cancer Ninjas, then put those kick ass smart cells back in to you.  Those Ninja T-cells go to work on the Evil Empire.  Not to defeat the Evil Empire but, like my Ninjas have done, to slow the Evil Empires progress down.  Sounds scary? Well it is for the cancer cells but it’s neither scary nor painful if you follow a few tricks.

Here’s the first trick:  

While you are reclining, depending on your weight for a couple hours at least, in the very comfortably padded Pheresis chair watching your DVD of choice, reading or having a nice conversation with the very attentive nurse a number of things will happen.   

You’ll have to pee.

 

Peeing for someone with advanced prostate cancer is a humility most of the healthy don’t have to experience.  But, and remember this for the reading scratching your anything hint, you can not get out of the chair before they have retrieved your dumb cells.  It’s not like an IV where the IV drags you along like some leashed puppy dog.  You are attached to an immovable machine so peeing involves a bottle and the nurse doing the best to preserve your dignity.

Pee before you get in the chair even if you have to turn the faucet on and stand in front of the porcelain for fifteen minutes with everyone waiting.  Trust me on this.

Second trick:

Many men refuse to have a Hickman Tri- Fusion Catheter installed.  DO IT. Put One In.  It is not hard to keep clean no matter what you’ve heard.  Maybe more on that in some other post. 

The consequences of not having the catheter installed are myriad a few being; the IV needles are huge and not flexible.  You can’t bend your arms [yes you will have a needle in the “in” arm and a needle in the “out” arm] so you can’t move for hours forget about reading a book.  Because you can’t move your arms you can forget about scratching anything.  Remember how frustrating the last trip to the MRI was with how badly your nose itched?   

Your veins will probably, not sure what word to use, collapse and in the future those veins won’t cooperate with the nurse whom is desperately trying not to jab you.

Third:

Even if you’ve had a recent hot flash take the offered blanket you will get cold.

I weighed 225 and I was in the Pheresis chairs for a little more then three hours for both my visits.  The mechanics of skimming dumb cells and sending them to school sounds complicated.  Rest assured for me there was no pain, no panic.  In fact I would take my lap top with me, work for an hour and take a blessed nap for two hours.  Any of you seriously reading this for information know how great it is to be able to take a nap.

I know that Provenge was a benefit I hadn’t expected and will tell you tomorrow how they get the Ninja T cells back into you so they can fight the Effing Evil Empire. 

Remember how exciting it is when "that number" goes down.  Provenge makes sense and worked for me.

For those of you worried about the catheter I’ll tell you how that’s a nothing and throw in a funny story about the Surgery Police [this gal was pretty over zealous].   

But that will be after the Ninja Provenge post.

Now, quit worrying and go do your taxes.

Talk to you later

Evil Empire Falls Temporaily To Zytiga

Yes folks this just in.  [A Curt Gowdy voice]

PC stage IV was ahead of Zytiga last month.   [Howard Cossell]

A valiant battle was waged during the next thirty days and the new score is in.  [Tom Brokaw voice]

Zytiga rocks the PSA BY 58% Baby.  [Dick Vital voice]

58% DOWN!  Hell that sounds like a sale. [Bob Barker voice]

That extension of life brought to you by, some drug company, but most of all by the prayers and thoughts of my loved ones, friends and certainly the loving therapy from my caregiver.

Today Rocks! [Some Hair Band Voice]

Thanks all…..My voice

Zytiga Monsters Under The Bed

Remember the boogey man when you were six or so?  It lived in the dark back corner of your closet.  The corner you couldn’t see if the closet door was open because the bath robe your parents made you dutiful hang up blocked your view.  If smart you kept the door closed.

Then there were the monsters under the bed.  

 I remember winning an A.A.U. long jump one year when I was about thirteen, set a state record I think, and when asked how I trained I couldn’t explain.  How would I explain that in my younger days the leap from the threshold of my bedroom door onto my island of safety was a seemingly 22’-6”?  Sadly, if I didn’t make the leap the monsters under the bed would get me. 

What?  You scoff a monster free leap of 22’-6” by a six year old?  Well, you’re right.  That is absurd.  That’s why I won gold at the very same meet years later in the triple jump.

Once you were on that island of safety there were further rules to be abided.  After checking to make sure the closet door was closed dreading that it wasn’t as that would require a whole new act of not invented track and field events, you examine your top sheet.

The slightest mar, distressed thread, gods forefend a hole or even worse a full tear in the top sheet rendered that sheet useless as protection from any monsters below, in the closet or from anywhere else.

Last there was the never any appendage over the edge of the bed.  Doing that meant instantaneous grappling with the monsters under the bed.  A grappling match only you could lose and who knows where below the bed was?  Death by Dust Bunnies?

I was well into my forties when I finally got over the monsters under the bed thing.  In the last four years I’ve become quite capable of dangling an appendage over the edge like a worm on a hook tempting the largest of under the bed monsters.

I think that at some point the monsters crawl out from underneath and inside those places they hide and you have to deal with them face on.  A lot of them you vanquish with vigor.  Some you don’t.  Cancer would be a good example of a monster.

The treatment for the Effing Evil Empire can have monsters too.  Forget the side effects.  At some point Zolodex, Lupron, Chemo, Trials your Oncologist is going to deliver rising PSA numbers.  Sorry guys that’s the problem for right now with having Stage 4 Prostate Cancer.  Short of a miracle all we can do is fight it with any and all.

 
You may be offered a drug call Zytiga.  This drug isn’t particularly scary in side effects {I tolerate it fairly wel}.  It’s scary to me because it is the monster that grabbed you that night when you didn’t quite make the leap.  It’s the last monster in your mind.  It seems the last resort and that is what made it a monster for me
.

Last resort or not, monster or not, so far Zytiga stopped my increasing PSA in the first month.  Next week I will get the second month numbers.  [If Curious what they are let me know]

The monster under the bed in this case?  I waited four months before taking Zytiga.  I was afraid it was the last wall of defense and I didn’t want to know if it would fail me or carry me.  In my case, at least for a month, it has not failed.  In this case, I wish I had all the sleep back I lost from agonizing about the decision.   

We make our own monsters on a very daily basis.  

By the way….I still after five plus decades on this planet I won’t sleep under a sheet with any hole, tear or rip in it and I mean I WON’T.  There’s monsters out there.

Talk to you later.