Medications

Part of being treated for cancer means you end up taking... something. This seems pretty standard to most people. Whether it's chemo, radiation, or immunotherapy, you are under some sort of medical treatment. However, what most people might look over is the *other* medications involved; anything else taken to help with the initial treatment. Usually these involve the side effects of the original treatment and can be something as simple as taking a Tylenol (for example, while I was Stage 3 I took one prior to my weekly injection), to an extensive daily regimen of meds. In my previous post, I mentioned the other medications I was currently taking but I felt I wanted to get a bit deeper into them by providing a bit more information.

Time flies when you are having fun

Oh boy.

So, hey. I'm here. It's been well over a month since my last update and trust me, I'm going to get into it. Just after I had wanted to start making more frequent updates because things were going well.

There are many reasons why I've been putting this off, but it's mostly due to apathy and lack of energy. So this update is going to be rather long. I had considered breaking it up, but since there is a whole connected story, I'd rather get it all out of the way at once. I promise to try and keep it as concise as possible.

Planning for the Future

First, I want to give a quick update. I've started tapering off my steroids this week. I won't finish my entire dosage until after my 4th infusion. Hopefully, the steroids will keep any inflammation in check as I continue to wean off of them. Coincidentally the past couple of days I've had a bit more gas and bowel movements than usual, but I'm attributing it to the fact my diet included a box of donuts and lots of iced cookies. I'm certain the sugar and carbs are playing a tune on my stomach, but I'm keeping an eye on things.

Ipi #3

So, another quick update from the homefront. As expected, Tuesday we went to Emory and I was given my third infusion. This is the long and short of it. But, allow me to get into a few details along the way.

First: Since the colonoscopy came back with a "clean as a whistle" status, there was no reason to keep me from proceeding with my treatment. The main reason the 3rd infusion was initially put off was because the doctors thought I might have had something more serious than what it turned out to be. In the week from when I started taking steroids to the procedure, whatever was bothering me had cleared up. With everything coming back in the clear, it was on to the infusion. They don't even want to do a reduced dosage, which is a good sign.

Second: They want to completely take me off the steroids. I thought they would at least consider keeping me on a low dosage to combat any ill side effects later on down the road, but they want to begin weaning me off it completely. I'll still be taking my steroids for the next month still, but in reduced dosages each week. I can't just stop taking them or my body will be thrown into all kinds of hormonal unbalance. Right now, I already feel like I'm pregnant with the way I'm eating, sleeping and generally overall feeling. The tapering process will at least take me through the fourth infusion in 3 weeks. If for some reason I begin to have bowel issues again, they said to call immediately so they can work something out.

So yeah, everything is back on track. In 3 more weeks I'll have my "final" infusion, with a CT scan to check the size of the tumors 2 weeks after that. Then, I move into what is called a maintenance phase, where I'll do an infusion/CT scan every 3 months as a check up.

Better news

I really need to update more. I'd rather have a bunch of smaller posts than one long post that takes forever to read. I can't make promises but I'm going to try. In the meantime, let's play catch up over the past couple of weeks.

First, let's talk about the stomach issues. At this point, they have pretty much subsided. Granted, I was not given my 3rd infusion and I am also still taking a very high dosage of steroids to reduce/prevent inflammation. It took a few days after I began on them for things to die back down to normal. Other than the couple days I had to prep for my procedure, I've been feeling great. There are two side effects to the steroids however. The first is heartburn, which the doctors is said to be expected. This too has quieted down since I began taking it, and nothing a tablet or two of Tums can't fix quickly when it flares up.

The second is a bit more complicated. You see, taking steroids has this unique side effect where I want to eat a lot. Therefore, gaining weight is currently in my future. However, the biggest thing is I've changed what I crave. Prior to this, I've always been a sweet tooth. I'd love munching on candy or cookies or whatever to tide over my hunger. Since the steroids, I've been craving more of the fatty foods. I'm certain there is some psychological thing (as well as physiological) going on from the drugs, but it is odd to say the least. Where before I could probably eat a box of donuts without question, now I could do the same thing to a chicken. Needless to say, my diet over the past couple of weeks has been interesting and I can honestly say I enjoy it more. I'll be curious if it sticks around after I'm off the steroids.

As I mentioned above, I had my colonoscopy last week. The prep for it was no fun, as I had just started to feel better and basically had to stay on an all liquid diet for almost 2 days as well as taking some super laxative stuff to clean me out. On top of this, the steroids were making me hungry like crazy, so I was terrible. They did a scope for both ends, since the doctor wanted to be thorough. He also took a routine sample biopsy of my upper GI. The whole procedure didn't take but about 20-30 minutes and I was discharged within the hour.

According to the doctor, things are looking fine. No tears, polyps, inflammation or anything that he could see. He just believes the Ipi was flaring up my colon and causing me to have diarrhea. But no signs of anything major, such as colitis.

So the big thing now is to see what happens next week. Since the test results were positive, we have no reason to think they won't continue with the treatment as planned so we expect my third infusion to come next week. They may keep me on a dosage of steroids to combat any potential future inflammation, which I would welcome fully.

The Collywobbles

Collywobbles: stomach pain or queasiness

WARNING: The following post will likely contain detailed elements concerning my bowel movements. If you don't wish to hear about them, or might be easily grossed out, I would suggest to stop reading at the end of this paragraph. For those that want to get the non-detailed summary, scroll all the way to last paragraph.

Again, stop reading now if you don't care to hear the details. This is your last warning.

The In-between Times

I haven't updated in a bit, but I like to keep everyone abreast of things. So, what as been happening recently?

First, my wife and I were able to get away from things for a while and took a vacation. With everything that has been going on, it was nice to just forget about things for a while and have fun. Of course, none of this would have been possible if it wasn't for the generosity of others. A group of friends and co-workers pitched in some money to send us off to Disney World. This took both of us by surprise. We are truly grateful for all of them and what they did for us.

The following week was my second infusion, which I discussed in my previous post. Nothing extraordinary there except.... the congestion. We both must have caught a cold at some point, because both me and my wife were feeling it bad by Thursday. While she got better immediately, something inside me decided my nasal cavity needed to remain closed for the rest of that week and the next. That's right, I went almost a full two weeks without being able to breathe through my nose. I had no other symptoms of illness and took the proper precautions to call the hospital to report it. In the end, I think it went away on it's own. We had tried every OTC medication and home remedy to try and get it to flush out. Finally, it started going away when I took Mucinex. Not sure if it helped or just was a coincidence, but there is my vote.

Finally, just this past weekend I started developing side effects. On Saturday, I noticed some bumpy areas on my inner arms that occasionally itched. Then Sunday I had a... bathroom run. This was all to be expected and we reported it today. The NP said just to keep an eye on things, but everything sounds like it is within normal parameters of what was to happen. Of course, now that we know I could have stomach issues at any moment, it'll be fun planning around bathroom trips.

Other than that, I've just been try to relax a bit and help my wife out around the house when I can. Next week is my third infusion, which may cause the side effects to start manifesting more but we'll wait and see.

Ipi Infusion #2

So this past Tuesday was my second infusion. After a normal set of blood tests and a doctors exam, I was given the go ahead for my 90 minute cocktail. It seemed to take a bit longer this time to get it around, but the good news is we didn't need to hang around after for any additional testing. So as soon as we were finished, we headed on out. Again, we were there almost all day. I sure wish things were a bit more streamlined.

I would have posted sooner, but I have seemingly caught a lovely head cold or something as well. I'm fine, but maybe a bit tired. The sinus congestion though.... I've had that "gotta sneeze" feeling for the past 3 days and it gets annoying. Luckily, the Nyquil as been making it easy for me to fall asleep.  Hopefully this clears up soon and I can get back on doing my workout again.

Odds and Ends

So far, things have been pretty uneventful on the cancer front. Tomorrow it will have been two weeks since my first infusion. Other than an unrelated fever I had last weekend, there hasn't been any adverse effects. The doctors really didn't think I'd have any, but you know how Murphy's Law goes. Next infusion is next week after Labor Day.

Since updates would be as periodic as they have been, I'll likely post a bit more infrequently. The times I'll likely get on here are:

1. After a doctor/hospital visit to let everyone know how things went.
2. If something comes up related to the cancer
3. When I think of a good post related to myself and how I'm dealing

This is going to be one of those last type of posts. It will kind of go along with the two previous posts I did about how I cope, and more specifically about using humor to stay upbeat.

An in-joke among cancer patients is something we refer to as "the cancer card". This is where you use the cancer to your advantage to get your way. Of course, most people don't use as their own personal pity party excuse; it's mainly left as a satirical way to poke fun at this illness and ourselves. Obviously there are some people that really can't do anything for themselves and need a caretaker, so there are times when we need to be hesitant to use it. But among friends it can be pretty funny.

I thought I'd end out with a quote from Neil Gaiman.

"Fairy tales are more than true; not because they tell us dragons exist, but because they tell us dragons can be beaten".

Ipilimumab

It seems like they always like to make these drug names as tongue twisty as possible. Ipilimimab, which I will refer to from here on as Ipi, is also branded as Yervoy. Ipi is quite different than the Vem I had to take. Vem was an oral tablet, just like popping pills for a headache or something. Ipi is a drug which needs to be infused and given intravenously. It is a very potent drug, very much like standard chemotherapy (except I should again state that it is not chemo, just the process is very similar). The potency means they can't just give me a shot and send me on my way.

Ipi Week 1

So it's been a week since I have been off my previous medication. Yesterday was my first infusion for the second part of this trial. I knew it was going to be a long day, but I didn't realize exactly how long it would turn out to be. I'll probably gloss over some of the more detailed stuff for the sake of brevity, but will try and take you through the whole day.

Coping 2: Electric Bugaloo

Before I start, just a quick update on my condition. I can tell the side effects are starting to slowly diminish, but they are still noticeable. The rash is starting to fade, although I still have the goosebumps (mainly on my legs). The redness in my face is beginning to go away and hopefully with it the dry skin will shed and refresh itself. The joint pain is still present, but doesn't seem to be as severe as before. Right now, my hands still ache but the rest of my body is trying to get in line. My hope is in the next few days everything will be unnoticeable.

Vem Phase 1 complete

So as of today, I have finished with my Vem cycle. My last dose was this morning. I had planned an earlier mid-week blog post, but didn't have the energy to type anything up.

This week has been kinda rough. My joint pain intensified greatly, but I am unsure whether it was due to my own doing or just how it happened. Where as before the joint pain was fairly dull, with only one part of my body being affected by sharp pain, this past week almost all my joints hurt at the same intensity at once. This made my past weekend very uncomfortable.

For the past couple of weeks I had been taking an Aleve along with my Vem doses to help curb this joint pain. Even though I was doing this, it didn't seem to really help. I was hoping it could cut the pain right out, but it never did 100%. So this past week I switched to taking some extra strength Tylenol instead, to see if it would work better. A couple days after the switch I noticed much more pain and it took me another day or two to make the connection before I went back to taking my Aleve. It could be just a placebo effect but the pain has again decreased to just one area of my body. In this case, it's my right wrist.

Even though I'm finished with my doses, I don't expect my side effects to completely wear off by tomorrow. In fact, I know that I'll likely still be the same leading into tonight, as taking my doses 12 hours apart never gave me any respite. We will see how things are going by this weekend. In the meantime, I'll keep taking my Aleve if the joint pain gets too bad.

So what's next on the agenda? Well, this next week I won't be doing anything. The doctors want to give me a week for the Vem to wash out of my system so it doesn't interfere with my next treatment cycle. Then next Tuesday will be a long day for me. I'm going to try to get out another update before then, but I'll likely not post again until after the first Yervoy infusion day.

End of Week 5

Well, here we are. Five weeks down, only one left to go. That's seven days. 14 doses.

Not much is different. I think my rash has toned down where it's not quite as red anymore, although you can still see raised bumps along my skin. The itching is still (almost) non existent, but I will still find myself scratching at spots. I just can't say whether it's the rash or a natural itch. Much of my skin is dry, so I am trying to space out when I take showers. It sounds gross, but it helps keep my skin moisturized when I know I'm not leaving the house.

The joint pain is still a bugger. It hasn't increased in intensity any, but it likes to migrate to different parts of my body. For instance, last week my hands were the big issue. Now, my hands are largely free from pain, but my shoulders hurt really bad if I attempt to lift them above my head and back down. Of course, my feet are still sore but that's never increased or decreased.

One thing to note concerns my hair. I've noticed it for a couple weeks, but I didn't want to post anything right away. My wife said something a couple nights ago, so I figured if she noticed without me saying anything it might be worth mentioning. My hair seems to be thinning. It's not falling out in chunks, nor do I notice a huge difference. But I haven't got my hair cut in a while, which usually makes it very poofy during the summer months when the humidity in Georgia can get out of control. Instead it sits flat against my head. I don't know if it's something to do with the Vem, the fact I'm not showering everyday, or the fact I've been using a shampoo/conditioner when I wash my hair. I think it's worth noting.

Dr. Strangecope or: How I Learned to Stop Worrying and Cope with Cancer

Before I start this entry, I want to go back to last week and clarify some things about my post. When I make a blog post, I usually come straight from the heart, and don't make edits unless it's for grammatical stuff. After re-reading my post, I can understand it might be taken the wrong way in some contexts. So I'll try to clear the air in an attempt to further make my point clear.

1. Firstly, it wasn't a knock against people's beliefs. While I don't share these beliefs, I also think it isn't any of my business to convince them otherwise. If someone tells me "I'm praying for you", I'd accept it the same way if someone told me "Merry Christmas". That is to say, with grace and acceptance that I'm important enough to this person to matter to them in some way.

2. I wasn't trying to generalize. I am a very open-minded individual and don't get insulted easily. When I say anyone can come to me with any questions or comments and I won't be offended, I mean it. But it might be wise to tread lightly around other people with cancer (or for that matter, any other life-threatening illness). People cope with their disease in different ways and some people can't handle the stress more than others can. That's not a slight against those people, because it can be hard on anyone. So don't treat what I say about myself as a generalization of everyone else going through something like this.

End of Week 4

Well, 4 down, 2 to go. It is weird that it's been a month already. I do have to say that the time has gone by very quickly, considering what we're going through.

Week 4 has been a real winner. I've been plagued by joint pain almost the whole week. It starts out when I get out of bed with really bad stiffness, which dissipates slowly as I get up and move around. I have started taking some Aleve along with my Vem doses to help ease some of the inflammation in my joints, but it only provides a little bit of relief. My feet aren't as sore as they used to be, but I can still tell they aren't 100% just yet.

The biggest change has been in my hands and wrists, but mostly just my fingers. Both of my hands ache whenever I try bending or flexing them. Even now, my thumbs are so sore, it hurts to even try and make a fist. You start to realize how much you use your hands to grab, grip, and hold things when it hurts every time you do. I feel like a 90 year old with all this muscle and joint stiffness and pain (no offense to any spry nonagenarians out there).

Other than that, no changes. My rash is still there, but not as noticeable anymore. Any itching I had from my dry skin quickly fades. My eyes still get dried out sometimes, but it may be due more to the fact I spend more time staring at the computer monitor than I should. I try to make it a habit to get up and stretch once in a while, to help quell some of the stiffness and rest my eyes for a bit. But without any work or school to keep me busy, all I have is the internet and video games to keep me from going stir crazy.

13 more days...

How to talk to people that have cancer.

So I'm going for a change in direction a little bit. I want to keep this blog limited to my experiences with cancer, but I also don't want to update every few days with the same old "hey, I've got side effects" that I've recently been doing. News from this camp will be very limited the next few weeks unless something drastic happens (which I don't really foresee at this point). So instead I'll take the time to write out some of my own personal feelings and philosophies about what is really happening in my life. I think the best place to start would be addressing the issue of how to talk to people that have cancer.

End of Week 3

Well, there really isn't much to fill everyone in on. Side effects really haven't changed much. I went for a walk the other day, despite my sore feet and paid the price the next day. I really want to try and get my workouts in and get into that regimen, so I may start taking something for the pain. I mean, it literally hurt to step down on my heels.

Other than that, nothing. No news is good news I guess. Well, I guess the good news is that I am half way done with the Vem phase. Three more weeks to go of this, then a week of nothing while my body "washes out" the medicine left over. My hope is the side effects the next three weeks lessen as my body gets used to it. At the very least, stay as they are now, without any weird spikes in degree or random side effects coming from left field.

So yeah, I feel like I am in a good spot for right now. I'll continue to update on the weekly. I may toss in a few "on my mind" posts concerning other issues related to the cancer as well, to hopefully give some insight further into my views on it.

Quick Week 3 Update

Not really much to report on. Side effects are really about the same, except I noticed my rash likes to especially itch after a shower. I think it dries my skin out. As a result, I've got some Benadryl to help. It also makes me drowsy, which helps me sleep when it's needed. Also my face and back seem to be drying out and flaking skin. During the first week these areas were really oily, so for them to go a complete 180 is weird. Not sure if I'd rather have dry flaky skin or nasty greasy skin. At least with the dry skin, I'm not worrying about my skin breaking out like it did previously.

I think the most bothersome thing at this point has to be the sore feet issue. They feel like I've been standing on them all day, when I spend most of my time sitting or laying down. I am trying to get into a habit of taking walks with my wife and would eventually like to start a decent workout regimen in the mornings, but feel hindered by the drug holding me back. Again, the exertion would be the problem there. Still, I was able to go for a walk tonight without much of a problem. A little heavy breathing and foot aches, but I'm a big boy and can handle it.

End of Week 2

Boy, what a week it's been. My plan was to update mid week and get everyone apprised on what was going on, but as you'll soon find out things kept me from doing so.

End of Week 1

Well, I am now exactly one week into my treatment (currently vemurafenib). All in all, things are going fine. I am having side effects, or at least what I can attribute to the pills. There has been some inconsistency in them, but they do seem related. For example, my face feels really flush. It's warm to the touch and slightly red, almost as if I have a minor sunburn. But, I haven't been exposed to the sun enough to chalk it up to photosensitivity and it acts like a karma chameleon (it comes and goes). The fact the weather is getting really hot and humid here in Georgia probably doesn't help much.

Some other minor things too. First, my scalp is sensitive, but not red. I thought it might be a precursor to losing my hair, but so far my follicles have stayed the course. I get some minor joint aches, but they don't last long and it's always in different locations each time. Also, my skin and hair appear more oily than usual. Again, I might be able to blame that on the weather too. Regardless, it's wreaking havoc on my pores and my chest and shoulders have had some break outs. The only other thing is a weird feeling in my throat when I swallow. It feels like I pulled a neck muscle or something. Not painful, just uncomfortable. But only when I swallow.

So far no rashes to speak of, although sometimes my skin appears slightly red in some areas. No itching either, other than random everyday things. No fever, even though I feel like I do. The fatigue is there, but barely. I can tell I am a bit run down, but not to the extent I was on my inteferon injections. The other side effects are nowhere to be seen. I have one more week of pills before I go back to report in to my oncologist. Then another month after that. But if this is the extent of what I have to deal with, I'll be happy with it.

Vemurafenib

The first part of my clinical trial is for me to take a drug called vemurafenib. Quite a mouthful (literally, as you'll see later). Doctors have usually referred to it just as Vem to make it easier on the ears, and I merely adopted the syntax. The brand name of the drug is called Zelboraf and is how it is labeled for sale. I want to tell you a bit more about what I'm taking.

Day 1

Well, that was unexpected. Monday we received a call that we were all clear to start and penciled in the schedule for today. A full biopsy report won't be available until later this week, but during the procedure last Friday they pulled in a pathologist to "eyeball" the samples to get clearance for the go ahead. Even though it is ultimately "bad" news, it wasn't entirely unexpected. More of a relief than anything else, just being able to finally know 100% what we are dealing with.

So yeah.... today is Day 1. As of right now I've taken my first dose.

Quick Biopsy Update

Just wanted to drop some news for anyone following. My biopsy procedure went off without a hitch. While the day was long and tiring, everything worked out without complications. I need to take it easy over the next couple days and expect to be a tad sore, but otherwise no pain. We won't actually have the results until sometime next week and (with the assumption the tissue shows melanoma), start treatment the first week of July.

Now what?

It has been a little over two months since I received the news. Since this time frame is a bit easier to recollect, let me break down everything in a more concise format.

Metastatic

Most people know how deadly cancer can be, given the large emphasis we put on it in today's society. Cancer grows and spreads, like an internal plague that eventually kills off good cells and replaces them with the nasty ones. If found in time, the cancer (in a tumorous state) can be removed before it has a chance to spread and do long term damage. Unfortunately, there are times when the cancer displaces cells to other areas of the body. They often travel through the lymphatic system or through blood vessels.

Treatment

After my first surgery I was given an option to start a treatment which would help prevent recurrence. Given my situation and outlook, we decided against it and worked more on maintaining a good level of health. It was my choice, which my doctors more or less agreed with me on. They could have gone one way or the other, because I was right on the border. After the cancer returned, they were a bit more adamant about my treatment options.

Recurrence

As I mentioned in my previous post, cancer an be a tricky bugger. My original surgery was in June of 2011 and everything came back positively enough, that myself and my wife were able to breathe a sigh of relief and hopefully put this all behind us and continue with our lives. As the oncologist explained to us, there was a chance of the cancer returning, but the odds were still good and in our favor. We chose to take the preventative maintenance route by watching my skin and getting routine testing done.

How Cancer Works

After my surgery, I needed to do a bit more research about melanoma and cancer in general. I knew there was always the possibility of it coming back, but I wanted to find pure facts that I might use specifically for myself; something that fit my criteria. For most people that have never had to deal with cancer, whether it was a self battle or helping a loved one, there are some misconceptions about how cancer acts once you've been diagnosed. Instead of bombarding you with another wall of text scrambled with medical jargon, I will leave this xkcd comic, which succinctly illustrates what you really go through.

The First Surgery

Let me start out by saying that at the moment of my cancer discovery, I was 32 years old. In those 32 years, I've been in relatively good health (my small bout of pneumonia and my stomach issues notwithstanding) and have really never needed to go to the hospital for anything major. Well, this was all about the change.

The Beginning

"You have cancer".

These were not the exact words that came out of his mouth, but those are the words that I chose to hear. It is something you hope you never have to hear, either coming from a physician or a loved one. It changes your life forever, whether the end result is good or bad.

Wait. This is not the best place to start. Let me go back a bit and give a bit of history leading up to this point.

Introduction

This blog is being used to document the process that I have been dealing with on my battle with skin cancer. Currently in my 3rd year of battling this deadly disease, I felt it was time to share my stories with the rest of the world. Whether you are fighting along side me or just along for the ride, I certainly hope you can find trickles of inspiration in my writing.

If this is your first time visiting my page, please click the About Me link in the menu bar at the top to find out a little bit more about my life.