New Hope Nivolumab

Well, I started my new clinical trial last week, an immuno-therapy drug called Nivolumab.  It doesn't actually treat the cancer, it treats my immune system.  I don't understand the exact science but the drug basically turns on killer cells in my body that were previously for some reason ignoring the cancer.  I've read more than once that it's the future of cancer treatment in many other types like melanoma, lung, certain breast cancers and others that I can't recall at the moment.  The best part is that there are very few if any side effects.  It almost seems to good to be true but the FDA was impressed enough with the potential to grant the drug "breakthrough status" which only happens if a phase 1 has really impressive results.

So, after a little rough start (my disease became inflamed and caused quite a bit of pain in my back and pretty much my whole body), I am now hopeful after hitting my low yesterday thinking I was regressing after feeling like crap all day, barely able to get out of bed.  Today I felt like a completely different person, at least in the early part of the day.  I've been dealing with a pleural rub where I can feel something (tumor) rubbing on my lower rt lung when I breathe.  Not a very pleasant feeling I can tell you.  Hoping this continues to improve as my energy level was much better today and it seemed like my back felt better too.

Going to try and get out tomorrow to celebrate, my first time out in a while.  Going to see Pearl Jam at Joe Louis arena so that should be fun.

Here's to having a beer without having horrible back pain.  Haven't had a beer in almost a month, just too painful, not worth it.  I happen to express a rare disease symptom in Hodgkins where I have pain in my tumor sites when I have only a few sips of alcohol.  It's a burning inside out pain that to me feels like either being shot or stabbed (-even thought neither has happened to me, I can only imagine, I bet this is close though, sometimes difficult to breathe). 

Ok, cheers to Bristol Myers for inventing this promising new drug!  I hope to God it works for me...

Chris

Need to vent...

Well, it's been a while since I've posted and as I sit here in my room, my back aching as it's been all day, I thought I would take this opportunity to let off some steam on my blog. I try my best to remain positive and when I started this endeavor of chronicling my experience with cancer, I went out of my way to find positives when they were pretty difficult to find... While I still do maintain a positive attitude most of the time, sometimes it's necessary to unload negative feelings, even if I'm only typing words on a computer. It's been therapeutic in the past and hopefully will be this time around as well.

As I'm pretty sure I mentioned in my last post, the Hodgkins has come back. I've been trying really hard to continue to live my life as normally as possible but lately, it's been getting tough. My back has been raging out lately in constant pain from my "target areas" around my t-9 through t-11 vertebrae. I don't know if it's from the Hodgkins growing (I can feel something in there), or my recent predicaments having to deal with a flood that brought almost 4 feet of sewer water into my basement destroying everything down there including my furnace, hot water heater and washer and dryer. I was in New York when it happened and I came back from that stressful experience (I drove there, not the most pleasant thing driving around Manhattan lost and trying to find parking, doctor's offices, etc) to a major disaster. It's not just the fact that I've lost around $15,000 (low side) of uninsured stuff but the fact that I've been living in a toxic bacteria infested home that is still partially infested and I don't have any hot water. My immune system is weak, I can't believe I haven't gotten sick, thank God. I was fortunate that my next door neighbors helped me remove a lot of the stuff that was down there to the front of the house for garbage pickup but I've done and continue to do everything on my own and hence possibly the source of my back issues (most likely a combination of that and the cancer growing).

It's always been a struggle taking care of myself since I was diagnosed back in Nov 2007 but this has really thrown me for a loop. How do I get through this with my back raging out and my energy level super low? I really feel for older people who live on their own and don't have a ton of people to rely on to help them out. It seems as I've gone through this journey, fewer and fewer people understand that the cancer is still around, still wreaking havoc on my body and peace of mind. I think that's kind of normal I suppose, maybe it's difficult for people to understand who haven't gone through it or know someone who lives with cancer. It can be pretty lonely sometimes to be honest. It's funny, I've been told that I've really changed... Well, I guess I have changed, I've become more hardened I think. It's hard not to become hardened when you're getting pounded with something almost every day of your life. The more you pound something, the harder it gets...

It's crazy that some people you think would understand and give you some rope have absolutely zero empathy for what a person in my situation goes through both physically and mentally. I've really learned a lot about people that have been in my life or were in my life at one point but for one reason or another, can't seem to understand or handle what I'm going through. Despite everything that has just happened to me, I haven't heard a single word from my father and not even acknowledged as a human being by his wife. I haven't been blessed with a child but pretty damn sure if I was, I wouldn't just be standing on the sidelines knowing that child is struggling. I don't get it...

With friends, I have to say that I've learned who really cares and who could care less. I used to have a large circle of friends when I was younger and as I've aged and then encountered this disease, I've seen that circle get smaller and smaller. I think it's natural for that to happen as you get older but when you get sick, people just don't want to deal with it it seems. I just went on a trip to Columbia with some friends I've known for a while. Unfortunately for me, one of these "friends" turned out to be one of the people that could care less about the issues I deal with and treated me like I was a major burden. Not the best of scenarios being in a foreign country dependent on your buddies to have your back but you live, hopefully learn and move on without that person in your life going forward.

I guess this whole experience has made me a little cynical about life which kinda sucks because I was never like that in my younger days. When you struggle, it seems to make you more aware of how many people are struggling out there. I guess it's kinda the same when you're not struggling. When things are going great, it's not pleasant to think about things that are really wrong in this world although I know there are a great many that do. I wish I could get my carefree attitude back but I'm afraid those days are long gone... I do however do my best to live a carefree life which definitely helps mitigate the negative feelings that creep in once in a while. It also helps to have people in my life that I can trust. People who I can share my feelings with, both good and bad.

These past few months have been some of the toughest times I've dealt with in the past 3 years (personally, witnessing my sister's stroke, stepfathers death and my moms cancer coming back all at once while also losing my confidante was definitely much worse). I was spoiled being on a clinical trial that actually worked! I have to remember that despite my struggles with energy, I never really thought about cancer and that unto itself is a huge weight not to have on your mind everyday. Today, right now, it's there (the thought of cancer) and mixed in with everything else, it's quite a load I have to say.

I'm really looking forward to getting started on this next trial, hopefully here in Detroit and not New York. I love New York and could start right away on PD-1 but the expense of going there every other week not to mention the stress of the city being a patient rather than just a visitor to me is worth waiting and dealing with the anxiety of knowing the cancer is festering inside me unchecked and this crazy back and body pain that's going on right now.

Here's to keeping my sanity over the next few weeks...

To those out there that truly care, thanks for reading and hopefully understanding.

Chris

On my own...

Tonight I go to sleep without taking the two pills per night I've been taking for the last three years that have basically kept me alive. It hasn't hit me yet or maybe I'm just battle weary but I'm moving forward in my life with cancer growing in my body and there's nothing I can do to stop it for the next 30 days or more. Kinda unnerving as I write this just thinking about it but I think it's really going to hit me when I wake up tomorrow morning with the pain I've been waking up with over the last 3 or so weeks. I call it the tin man effect. It's like my body is locked up and every move I make is painful until I'm able to take the meds to help me move like the tin man used oil to help him move. Now that I've stopped the RAD001, the drug I've been taking to keep the Hodgkins away the last 3 years, I wonder if the Hodgkins is going to grow even faster now that there's nothing to slow it down. I wonder if the pain is going to get significantly worse in a short period of time...

This is just one of the many things that are crowding my mind right now. So I wake up tomorrow to face the day with uncertainty and a healthy amount of fear while I do everything in my power to drink in the gift of life and be thankful to be alive.

On the other hand, perhaps the benefits of not having to take this drug anymore will counterbalance the potential "exposure" issues and back pain with hopefully having more energy and finally getting my appetite back! Throughout my time taking this drug, my energy level has been 3 to 4 out of 10. In other words, I was pretty much exhausted every waking hour, I just learned how to mask it I guess. Can't wait to crave good food again! I can count on my one hand how many times I cooked a proper dinner for myself over the last year. It was either scavenging or getting a carryout. I had no desire to deal with food, going out to buy it let alone preparing it. The main culprit for this was the Everolimus or RAD001, yet it kept me alive...

I'm thankful for the 3 years despite these two major side effects. I think anyone who has dealt with cancer would trade being tired and having no appetite for being cancer free.

Part of me is excited to see if I can do better with the next trial. I can't get greedy and expect things to go perfectly and get great results with this next trial...

I guess it's ok to dream though right?

With that said, I'm out...

I'm back...

And,not coincidentally, the cancer has returned as well. I told myself I need to start writing again as it's a great de-stresser and an easy way to possibly help people who are going through the same thing (compare experiences). I have a lot on my mind so please stay tuned for more to come. To those of you who have followed me since 2008 when I started this, sorry I've been m.i.a. I focused for a while writing about my sister and her stroke then just took time away to enjoy life...

Not the ideal conditions to restart this blog but not a whole lot I can do about it!

Thanks for the support and thanks again for reading. Probably have a good lengthy post within the next couple of days. I have quite a bit on my mind....

Chris

Keep on moving...

That's been my edict ever since I've been feeling better over the last few weeks!  My feet have finally shrunk back to their normal size although I still have some edema left in my ankles.  It's a little sore but nothing like it was before thankfully...  I had my monthly check up today and everything checked out OK I guess.  They just draw my blood and give me more Everolimus as I turn in the shell from the pills I had taken prior.  I'm not sure why they want them back; why in the world wouldn't I take the medicine?!  Seems silly to me but whatever...  They changed the required CT scans now from every 3-4 months to every six months which is nice.  So, I don't have to worry about a scan until January.  Hopefully after my birthday....

So, with my dogs back to somewhat normal and no infections or stabbing pains in my back I've been trying to balance taking care of my sister (helping my Mom) and trying to enjoy my relative good health :)  I'm emboldened to suck all of the nectar out of this sweet remission, I feel so blessed.  One of my dear friends Bekah is in the hospital due to complications from the stupid Hodge and while I'm aching inside knowing what she's going through, it just reminds me that relative good health is so precious, I can't take it for granted or waste any second of it!

Because of this, not to mention my bachelor status, I feel compelled to travel whenever the opportunity presents itself.  I've kinda given up on dating, it's such a racket and I'm tired of having to answer "so what do you do?".  If I'm blessed enough to meet someone who accepts my situation without having to do the whole online dating thing, great!  It's not exactly easy doing all of this on my own but unfortunately being a cancer survivor can be a lonely endeavor sometimes.  I've learned to manage however so whatever happens happens I suppose...

I wrote the above paragraphs on a plane coming down to steamy Florida to check on my place down here.  I was sitting with a couple who were a bit older than me.  The guy remarked to me as soon as I sat down that he needed to "get drunk so he could fly".  When he said that, the smell of alcohol was already permeating from his pores.  He then popped some pill along with his wife and proceeded to drink several of those little travel size whiskeys and by the time we landed he was completely tanked.  I had my headphones on for most of the flight but when I took them off, all I heard coming out of his loud mouth were F bombs every other word, ugh.  I could've handled it by just ignoring him as I was trying to do the entire flight.  Unfortunately, there were two little girls sitting behind me with their mom who had a mortified look on her face.  I had to say something...  Thankfully, his wife finally stepped in and along with a couple of other passengers joining my side, he finally shut up.  What a total jackass...  From there it was on to the tri-rail shuttle  (the tri-rail is a train that runs from Miami to West Palm beach all day long).  Unfortunately, the shuttle never showed up, great!  So, the other 3 of us who were waiting for the shuttle to the train station banded together and got a taxi to the train station which is about 15 minutes from the airport.  We left at 10:05 and the train was leaving at 10:18 -pretty hairy- but we did it walking up to the station as the train was pulling in, what a stressful but satisfying adventure!

I guess that story is a perfect analogy of my life these days, never easy but finding a way to make things happen... As one of my all time favorite basketball players said (Ben Wallace from the Detroit Pistons), if it aint rough, it aint right!

Word...

Chris

Cankles

Hello remaining readers, haven't written in a while, feeling the need to vent so what a better way than to release my frustrations into the blogosphere....

Life overall actually has been good, I had an opportunity to attend my cousin Jeff and his new wife Heather's wedding in Oahu.  I swam with sea turtles, jumped out of an airplane over the ocean and watched my once kid cousin marry his beautiful bride, pretty good stuff!  I also was able to raise enough money through the creation of my sister Nicole's blog and subsequent fundraising to get her back on track with therapy to help her recover from her stroke.  I have to say that August was one if the best months I've had in a long time...

With that said, the side effects and lingering effects of having so much therapy continue to take their toll on my body.  The latest issue is my feet or what were once feet and now looking more like balloons.  I had a staff infection for a while after my seventh chronic ingrown toenail was removed and I think being active in the ocean has brought it back even after a round of augmentin.  Have to go in tomorrow to my podiatrist to find out what's going on.  I haven't been able to wear shoes for two months now, this is getting old.  I've had to buy all new shoes one to one and a half sizes larger to try and prevent the toenails from growing back into my skin and no matter what I do, even as my toenails continue to get smaller and smaller from extraction, I am still dealing with this crap for the last three plus years.

If I can figure out how to deal with this, the world will be my oyster!!  I feel so blessed to have my relatively good health right now and the cancer seemingly staying away thanks to the success of the Everolimus.  Thank you Novartis for providing the drug and covering my medical expenses.  I feel fortunate to be a part of the successful arm of this experiment and honored to be participating in something that will hopefully help others down the road with difficult to treat Hodgkins.

Here's to normal sized feet the next time I write.

Sorry to gross anyone out!!  Maybe there are others out there who take Everolimus (RAD001) that have issues with chronically swollen feet?

Nicoles Blog Address

Hello again, I finally put out the rough but functional outline for what will be Nicole's donation/progress blog.  You can find it at nicolesangels.blogspot.com 

Thanks so much for your support!

Chris