BEP Round 2 Day 1

And so it begins!!

9:15am O:0 P:0 N:0 T:0

I can honestly say today i woke up feeling 100% normal.  Good way to start the next CHEMO EXTRAVAGANZA!  I got my blood work back, first lets talk about my tumor markers:

AFP Starting [2716.0] Post I/O [855.8]  Now   [454.8]
HCG Starting [503]    Post I/O  [304]    Now   [9]
LDH Starting [290]    Post I/O  [220]    Nos   [397]

Ok so a first lets talk LDH, this is basically body inflammation level i was never all that high even with the primary.  However, I did ask the nurse about why it when UP... she basically said its the chemo causing all that inflammation in your body as it attacks the cancer cells.

Next, AFP.. this is really the highest of the numbers.  Its always been the highest and while it is going down it is certianly not tracking to its half like.  So we can gather two things from this, its is DOWNWARD trending which is fantastic.  And the second is that oboviously I stll have some active cells in my body producing AFP but we have 2 (maybe 3) more rounds of chemo to whoop up on it so I am ok with the number I guess. I was really hoping for a sub 100 number but oh well (that would have been where it was if it was tracking like it should). I made a sheet that calculates the daily half life decay of each element and tracks it over time so I can compare its projected path with what we are seeing.  This allows me to track how well the chemo is responding and how "dead" everything is inside since after its all dead it should track 100% to the observed decay curve.  See Graph:

Finaly, HCG has dropped off to nearly normal levels and probably will be by the end of this round if not sooner. (its the bottom tracking curve on the graph) It should be lower strickly speaking from the tumor decay rate but its going way down that's all that matters.

The second bit of news comes from my blood counts.  Normal Range for WBC is 4,000-10,500.  If you recall last week I dropped down to 1000! with my Neutrophills being 100! which is crazy low.  Well good news is that the nuepogen really knocked it out of the park.  My WBC is 32,500 so I am chocked full of white blood cell fun! 

The other white blood cell marker that's important is your neutophil count, normal range is 1,800-7,800 and mine had dropped to 100! So now after all those wonderful shots its up to 23,400 HHAHAHAHA. So basically my immune system is super powerful right now :-P  Made a joke to the nurse I should get some taco bell and eat it while swimming in the sewer HA.  She made a comment that I have the immune system of 3-4 people right now all shoved inside me! hahahahah maybe if there is a bad flu or something going around we should just keep neupogen on hand to boost us up :-P just kidding!!!

Anyway what that says is that 4 shots of nuepogen is probably overkill, 3 maybe even 2 would be enough so we can keep that in mind as we move forward..I will update later once I get some E/P in me!

Me in the chair today, excited about day 1... Cancer BRING IT!!! (Wife says I also look like maybe I am scared or something is about to attack me.. guess "jazz hands" don't come out well in still photos)

12:25pm O:2 P:0 N:1 T:8
So I have finished both my E&P today, just finishing up fluids.  The benadryl really knocked me out, I slept through the whole day's treatment basically.  I woke up a few times here or there but it did kick my butt pretty well.  We aren't going to do the Bleo today, I kept trying to get them to switch the Bleo days to Monday but that never happened.  So Bleo, Etoposide, and Cisplatnim tomorrow should be a long day... Oh and I get nuepogen shots on bleo days so wow that should be a busy day!

I will up date later in the day with how I feel once the premeds knock off... I put N at a 1 simply  because I should be starving right now and the thought of food isn't appetizing at all.  Hopefully that fads too so I can get some calories.  TTYL all!

2:15pm O:1 P:0 N:3 T:2
Here are the meds I am taking, premeds and then the E/P i keep forgetting to grab a pick of the Bleo since its only on there for like 15 minutes it slips my mind but I will try and remember tomorrow.

Premeds:

Cisplatin:

Etoposide:

That's the cocktail of fun for the week!



6:35pm O:1 P:0 N:1 T:2
I just woke up from an unplanned/unexpected ~4.5 hour "nap".  I remember working on the computer, I "kinda" remember eating some lunch though by how messing I ate it (ie the surrounding area) i think I started to fall asleep while eating it.  Now this isn't the first time during chemo I have had an impromptu-nap basically sneak up and wipe me out for a couple of hours. But normally those are like 1-2 hour things, this one I was out for EASILY 4 hours maybe a bit more.  Now this could just be that my body is tired and decided he needed some sleep, I haven't been sleeping all that well recently.  Or it could be this round of chemo is taking a bit more UMPH out of me than it did last time. Or it could be the Benadryl pre-med but it was only 25mg.  If you put that together with the time I slept during the Chemo session I "napped" for nearly 8 hours today!  On the plus side I feel fine, I don't have any nausea (again I rated it as a 1because I have only had a couple of tacos for breakfast at 7:30am and nothing else so I should be starving but I am not... and nothing even sounds good.)  I am going to mention this to my nurse/Dr. tomorrow during my session.  My Dr is at the main clinic on Tues/Thurs so its a good chance to get a face to face question/answer session with him.  Guess I am going to have to charge all of today to "sick" time at work because I didn't get a chance to do any work aside from read/respond to a few emails.

BEP Round 1 Day 20

11:15pm O:2 P:0 N:0 T:0
So, tomorrow is the start of Chemo Extravagaza #2 ie "hell week". I am a bit apprehensive about it honestly. I thought since I had been through it before, knowing would make it easier but it really isn't. I know the crud I am in for, and how crappy it will get later in the week. But I have high hopes that with my tips, and trying to stay in front of it this time we can do better!!

In related news, for those of you that follow on day 13 my hair started falling out (all over). Well over the last couple of days I have had an itchy neck, but I just bought some new tshirts so I thought maybe it was just that. BUT I noticed today that my collar and the couch were covered in little 1/16" hairs (remember I buzzed it to 1/16" when it was patchy). So that's what has been irritating my neck, so I figured its time to just shave it. Now I might be wrong but I think I was born with hair on my head so.. this would be the first time I have EVER been bald. Posted for your viewing pleasure :-P

BEP Round 1 Day 18

11:15am O:1 P:1 N:0 T:0
No big new yet today, my hair is starting to get "patchy" so probably gonna shave it soon.  The new meds are keeping my bone pain and tiredness away.  I did want to share with you all an awesome video that came out from NASA on the project I am working on.  When I look back over the years of work I have put into this program, and the years to come it always makes me proud.  We ARE a space faring people, and we need to get out there and explore beyond low earth orbit and I am helping that!!

Shameless plug for me but for those of you that don't know I work on the Orion program for NASA as a subcontractor (I work for Honeywell Aerospace directly).  Watch this video!
http://www.nasa.gov/multimedia/videogallery/index.html?media_id=125642591

5:00pm O:1 P:2 N:0 T:0

4th Nuepogen shot done, that's the last one my doctor told me to do before next week.  So hopefully when I get in Monday to start CHEMO EXTRAVAGANZA #2 my counts will be back up to decent levels.  Feeling good, the meds are working well even backed the Ibuprofen back to 400mg every 4 hours, and a Norco when I feel I need it (only been 1 so far today).  I have felt good all day and I got a full work day in, AND I have been doing packing etc around the house.  My wife and I are going to focus on getting my nutrition well fortified before next week over the weekend so I am ready.  I mentioned earlier that my hair is getting a bit "patchy" but its buzzed to 1/16 " already so I am just gonna leave it like that for a while its nice to have some hair hanging around.... And its not like it falls out when I shower in huge amounts or when I rub my head so, I will keep it a bit longer.  Oh interesting side note, as I said it isn't just hair on your head that "falls out" its most places... BUT a cool plus is that normally I have to shave every day and each day its pretty thick the next morning... but during the last week or so I haven't had to shave its nice :-P

BEP Round 1 Day 17

First let me say that I have been taking Neupogen NOT Neulasta.  I thought they were the same thing, but most people seemed to say the latter so I had been sticking with that latter name.  However they are different medications.  Neupogen is a daily shot that last for a short time and allows more fine control over both the pain (ie it stops when you stop taking it quicker) and the boost to your white cell count (if it has recovered today you could stop sooner).  Neulasta is apparently a shot you take that works over the course of many days and has more serious side effects.  At least that's how my Dr described it to me.

3:30pm O:3 P:2 N:0 T:5

So saw my Dr today and my white cell count IS coming up, slowly I was at 2600 up from 1000 a couple of days go.. normal I think is like 5000->8000 ish so I am still low.  Which means I still have more shots to take.  I didn't get the number but my baby white blood cell count is still pretty low so i am going to have to take two more shots today and tomorrow to help boost it up before next weeks "hell week".  Then we are going to add a 3 day doze of Neupogen for every Bleo day to help try and keep my cell counts up for the next several rounds.  I am wiped out today, I got back from the doctor and i was probably at a T:7-8 and I crashed for several hours.  I am not sure if that's just overall body fatigue or if its Neupogen related or what but after my nap I feel a bit better but still pretty tired.  Still having bone aches, the ibuprofen helps quite a bit but my Dr wants to keep my daily dosage down to <3g so it limits how much of it I can take hence the pain returning a bit.  He also is going to call in a prescription for Norco which is nice, basically a Vicodin dose with lower acetaminophen so it doesn't impact your liver so much with higher dosages.  That will help take the edge off, he said i can "mix it around" between those two pain killers and find a schedule that works for me pain wise to help keep it under control.  I would of course rather have a P:0 all the time but I dont' think that's possible so I am going to settle for a P:1-2 if I can keep it in that range I will be able to deal with it.  Yesterday there was a point I was up in the 8 range and it was pretty bad.

So that's it for today, neupogen shot today and tomorrow... maintaining some pain killers to keep the pain at bay and preparing for next weeks hell week.  Oh, and my doctor told me I need to start wearing a medical mask when I leave the house until my white blood cell count comes up.  He wasn't happy I didn't have one on today when I saw him, but in my defense I didn't know I was supposed to be wearing one until he said that.

4:15pm O:3 P:2 N:0 T:5
Crud I am running a light fever 99.2, if it gets to 100.5 I have to do all sort of crappy things like go to the ER and call my oncologist etc etc.  So that's probably why I feel so run down etc, I took some acetaminophen hopefully that will bring it down.

5:15pm O:2 P:2 N:0 T:3
Neupogen shot number 3, injected and all done.  My fever is up to 99.4 so I took ANOTHER acetaminophen.. If in the next 30-45 it hasn't started at least settling out or dropping I am probably gonna have to call my Dr.  My tiredness feels a little better but I think the slight fever is draining me a bit.  On a side note this could all still be from the Bleo, technically you could take the acetaminophen dose schedule out for 48 hours past the dose.  We have been just doing 24 hours, and I haven't had any issues but perhaps as we get deeping in the treatment and my body is weaker we should start maintaining the acetaminophen for the full 48 hours.

7:00pm O:1 P:2 N:0 T:1
So I am feeling much better, medicines kicking in and my fever is gone!  It got up to 99.6 at one point, I was getting a bit worried but.. all is well now back in normal range and my tiredness is all but gone which is great.  I debated updating the P to 3, because i am getting some shoulder and leg aching, in addition to the lower back pain.. but they are all similar in their intensity so I guess MORE of them doesn't really mean I am in more pain.. its just more diverse :-P  Honestly with a crappy as my blood counts have been, I NEED this medicine so I just have to grin and bear it and hope it gets me ready for next week.  I am going to change the name from "Hell Week" to "Chemo Extravaganza".  Its more up beat and has a nice fun ring to it.. perception is important right? HAHAHAHA

Btw I ordered one of these, from a link in Dane's blog [www.iamtheuniballer.com]:http://www.jackiefarry.com/cancerhat/

F Cancer indeed! I think, cancer is one of the few things you can openly curse in society and everyone is cool with it :-P

BEP Round 1 Day 16

Not sure if I call this "Round 1" still since its over technically but Round 2 doesn't start until Monday so... i will just keep counting these as Round 1 days.

2:30pm O:2 P:4 N:0 T:0
So I wanted to let you guys know that I am having some pretty bad back pain.  Not sure if its directly related to the neulasta shots or not but it is uncomfortable.  I have been working from home over the last several days and this chair isn't that comfortable so it could be just that but I will keep an eye on it.  Overall I still feel fine though, not even tired today so that's a plus.

4:00pm O:2 P:5 N:0 T:0
I just confirmed with someone I know from work who also had these neulasta shots and my back pain is from them.  Its pretty bad hard to concentrate almost, and he said he only had 1 of the shots... and I am going to have 7 of them!!! AAaaaah

4:20pm O:2 P:6 N:0 T:0
Just talked with the nurse, apparently Claritin helps so I am going to try that. And he said I can alternate between acetominophen and ibuprofen.. and use a heating pad.  However, I have a couple Vicodin left from my surgery and I took one of those about an hour or so ago and it doesn't seem to be helping either so I am not sure if those will help.  I will try though.  Its getting pretty bad though, my arms and legs ache too now not as bad as my lower back.  Walking helps but it doesn't make go away completely and sitting down is horrible.

4:35pm O:2 P:6 N:0 T:0
Ok just injected the second dose =( Hopefully the pain doesn't "build" with each one.

5:30pm O:2 P:2 N:0 T:0
What a difference an hour and 800mg of Ibuprofen makes.  I can't keep up that level of dosage though so I am going to go down to 600mg with the next dose and 400mg with the one after that and see where i can "stand" it.  My liver/kidneys are dealing with enough right now I don't' want to have such high dosages for long periods of time.  Anyway at least its not so bad now, 7 days of that would have sucked.

BEP Round 1 Day 15

Another Bleo day, should be a quick one like last time. They give you fluids/premeds which takes an hour or so then the bleo which is only 15-20 minutes. It isn't until 2:30 today though so my tiredness that usually comes mid day from it, when I get it in the morning, should just mean I get a good nights sleep. &nbsp;I do have a couple of skin reactions I want to talk to the nurse about which could be unrelated but just to be safe. &nbsp;I will update later in the day after the Bleo to tell you all how my blood counts are (they do blood on the bleo days for WBC/RBC/HGB) etc.

[RATING SYSTEM]
    - So I was omitting the rating system from these posts, sorry that was my bad.  The reason was because I actually "feel" perfectly fine.  I am the slightest bit tired, but honestly it could be from anything totally unrelated to the chemo which is why I wasn't posting anything with these but to be consistent (Thanks Dane for pointing it out) I will keep them on my posts.

3:00pm O:0 P:0 N:0 T:1
STILL waiting to even go in, my company changed our insurance pretty significantly this year and it seems to be causing some issues.  Fun times.  Ok so our insurance officially sucks. Our HSAs aren't active yet and everything is "out of pocket" for the first $3,500 so Urgh. They went ahead and let me through for my treatment today but it cost $350 just for today. I have several doctors.appointments and many many chemo treatments left. Gonna have to call my company and find out how to handle this. I don't have 3.5k just lying around hahahaha

4:35pm O:0 P:0 N:0 T:1
Well crap. Got my blood work back. My counts have all tanked. They are surprised I feel so good. Gonna have to do those shots that make your bones hurt, no fun. I feel fine though!

5:15pm O:0 P:0 N:0 T:1
So I have my numbers. WBC 1000! wow freaking crazy drop from last time it was over 7000 last week. HGB is down from 16.7 last week to 13.3, not bad but certainly dropped a bit.  RBC was fine, thankfully.. but my platlets where down to 80k which is quite low last week they were 155k which was on the low end of "normal".  And my Neutrophils are at freaking 100!!!!!  Normal is 1800->7800 so yeah... um CRAP.  Just got my first shot of Neulasta, hopefully the bone ache/pain isn't bad from it and I have to do one every day for 7 days =(.  My insurance picked a bad time to screw me over money wise, this is gonna suck.

5:30pm O:0 P:0 N:0 T:1
And the hits keep on coming, aaaaaaahhh.  So this whole time I thought the schedule was Week 1 (5 days ) Week 2 (1 day) Week 3 (1 day) Week 4 (off).  That's to say 3 weeks worth of treatment and then an "off" week.  I dont know where I got that from, if I inferred it from things I read online or if I got that impression from the Dr. or what but... yeah I was totally wrong.  There is no such thing as an "off" week, which means.. next week is ANOTHER HELL WEEK!  So, I guess plus side is I will get through the rounds faster... but I was just starting to feel good again and I know next week is gonna destroy me, especially with how my blood work came out today.  Well, on the plus side I will have a week to recover before our move-in week and maybe I won't feel like crap? :-P Searching for good things to be thankful for here HAHAHA.

------------ JUST REALIZED SOMETHING ------------
BEP Round 1 is DONE!  That's it, all doses taken.  Bleo didn't even really tire me out this time I feel fine.  On to round 2!  A few things I am going to do different for this round:
1) Eat better.  Previously I pretty much just ate "whatever sounded good" and honestly it wasn't the best food for me.  Often after I ate it I would feel worse or my stomach would fight me etc.  This time I am going to try and eat more "balanced".  Not really healthy per se, just better all around nutrition to try and not lose ~10lbs this time and to try and keep my energy up because I know by Thursday I will be hurting again.
2) Mouthwash and Brushing my teeth, I didn't do a great job of that last time. I did it a few times a day and tried to be diligent but it wasn't a priority and I was borderline on getting some bad sores.  Luckily we caught it before it got to bad and were able to keep it under control but I don't want to go down that route again.
3)  If possible, if I am up to it, I want to try and be a bit more active at least for an hour a day or so.. I felt like last time I mostly sat around... slept.. and was basically a bump on a pickle.  While that rest was good for me it also was super boring and kinda crappy just laying around all day.  Maybe something active walking around the block with the dog or something just to get up and out.
4) Water, water, water... I did actually a pretty good job of hydration this time but I think I could do better.  Honestly I should be drinking all day.  I probably drank a few liters of water a day maybe more but usually in bursts. If I could try and just be slowly drinking throughout the day and increase my overall water intake I think it would help also with the tiredness flushing that crud out of my system after a treatment.
5) The last one is minor but, LOTS OF PAIN CREME on my port. I did that today ~1.5 hours before (because the insurance crap took so long) and I didn't even feel her hook me up with the needle through my chest HA.

BEP Round 1 Day 13

I am going to invent a word in the following sentence.

The DE-HAIRFICATION process... has begun!  So, it doesn't appear to be limited to just the hair on your head, without going into too many details underarm and chest hair are also on the list it seems of places you can expect to become more "streamlined" :-P

So it isn't pronounced just yet but if I tug a bit, yeah it comes off.. quite the odd experience the first few times it caught me off guard.  Guess I should pick up swimming, hahaha just kidding.  So I knew it was coming from some blogs/Dr advice etc I was expecting it around day 16 and I would say that in a few days when I hit that mark it will certainly be more noticeable. Anyway, thought I would point out the milestone for those guys going through chemo or expecting to go through it soon to know what to expect.  I have already cut my hair quite short so I would guess I probably have another week or so before its advanced enough for me to need to shave it off.  Once I am all "baldified", ooh another invented word, I will post a pic for everyone.