IVIG #2, check...

So I can cross off IVIG for the first leg of my trip here in the D. I got a little crazy today... The IV that was in my arm the last couple of days got kinked plus I forgot to put Heparin in after my infusion was over yesterday. So, as an experiment and for lack of patience, I decided to try and do the IV myself, yikes! I don't know what I was thinking as usually I don't even look when they poke me. I've given myself shots before in the stomach for my GCSF so I thought I could do the IV... I got the needle in but I guess I missed the vein as I tried to draw blood with the saline and nothing came out. I think I could do it next time if I really had to but think I'll leave this to the nurses going forward ;)

In the spirit of do it yourself (and celebrating the regained functionality of my hands), I decided I'd give Chili a haircut yesterday! She was looking pretty ragged as we let her fur grow out to keep her warm for the Michigan winter. She pretty much looked like a Wookee and now she looks like a puppy again :D It's definately not a professional grooming job as there are some "hacks" here and there but I don't think she'll mind ;)


Chili the Wookee :D


Chili groomed!

So like I said, I'm off to New York tomorrow. I have a PET/CT scheduled for Monday morning. I'm scared to get the results as I can feel the tumors in my back all the time now. It's especially uncomfortable when I'm lying on my back or sitting in a car/plane. I'll be interested to see how much my disease has grown in the 2 months I've been off therapy... I meet with the doctor later Monday afternoon where I'll be given the SAHA and Niacinamide pills. It's going to be challenging getting all these pills down having to take 16 Niacinamide horse pills and (I think) 5 capsules of the SAHA every day. The trial coordinator Sean confided in me that he thinks most of the nausea issues have to do with the fact that 20 pills are sitting there in your pipes. Because of this, I'm bringing my coffee grinder with me and if I have any problems, I'm going to grind up the Niacinamide and put them in a smoothy! Sean alluded that this was ok so I'm not going to mess around...

I just hope this stuff works... The pain/discomfort is starting to freak me out and I'm tired of taking pain meds. I figure I'll know if it's working based on how my back feels. Plus, the protocol calls for a scan after 4 weeks. I have a back up plan just in case as there's a new trial getting ready to open here in the D at Karmanos called RAD001 (another daily pill) which has been getting good results in Hodgkins. Of course my hope is the SAHA will do the trick and I can just stay on that for the next 35-40 years ;) Nothing wrong with dreaming right?!

Peace out, Chris

On the Move

So tomorrow I leave for the D to try another round of IVIG. I'm excited that it's going to speed up my recovery from Guillain Barre Syndrome which I'm now making noticeable progress, yee haww! My fingers are firing around my keyboard as I type this and I actually cut my nails today with nail clippers (this is gross but the last month plus I've been biting them). My legs are getting stronger too and I've been trying to walk every day.

I'll be in Detroit for 4 days then Sunday I leave for New York for a 9 day stay. I'll be doing the NYC trip solo which I'm confident about since I pulled it off last time while I was still pretty much disabled. I at least have my hands this time which should be a huge help.

I'm admittedly nervous however starting a new clinical trial. I feel blessed to have the opportunity to try an experimental drug don't get me wrong. That said, it is a little (well, a lot) unsettling to be a subject of an "experiment". There have been 10 people in the world so far that have done this trial and one of them who is a friend of mine spent a significant amount of time in the hospital during and after she quit the trial. While it hasn't been proven that the SAHA/Niacinamide caused the difficulties, it wasn't disproven to my knowledge either. I should point out that SAHA has been around for a while and is actually approved for some other cancers. The unknown is when it's combined with the high dose Niacinamide. Dr. O emphasises that Niacinamide is basically a vitamin (B3) so it has to be harmless right?

It's still very fresh on my mind what the last trial drug did to me (although can't be proven either). Ultimately, I know that everything I do from here on out to control this disease is going to involve risk and carry side effects. I have no choice unfortunately... If I do nothing, I know what will happen and it's not good.

All I can do is hope that I get some results from the SAHA/Niacinamide (and future treatments) and the side effects are manageable.

Of course I will continue (as usual) to try and enjoy every day the best I can while I can. I pick my spots a little more now but life is good... I've got big plans for the summer and I'm saying prayers, keeping my fingers crossed, watching my karma, eating well, exercising -- whatever I can do to get some good results here soon...

Thanks again to my friends and family that have shown support :)

Gone Fishing!

Happy to say I was able to get out on the water for the first time in a while yesterday! Went out on the Sea Mist out of Boynton Beach and right off the bat were joined by a school of porpoise or dolphins. It was awesome! I have just enough strength in my hands where I was able to reel in my line and even managed to catch a small Yellowtail Snapper. My buddy caught a couple of nice Mutton's and had em for dinner tonight, delicious! I wore my braces out on the water but had to take em off as my feet felt like they were goig to explode. Don't know how much more I can wear those things... Also had to fight off sea sickness as the waves were 2-4' and I definately don't have my sea legs. Thank God I had a few leftover Compazines from chemo and think it saved me from hurling ;) Slowly, I'm starting to get my life back... I think I'm going to try and ride my bike downtown Delray tomorrow to check out a festival and then after hopefully go boogie boarding in the ocean. This is of course if my back is cooperating and I have some energy. Every day is different...

Progress is good!

My Plan…

Well, I’m on my way back to SoFlo from Texas and it was a great time. Unfortunately, I didn’t get a whole lot out of my visit with Dr. Younes however… He had one trial open (a JAK2 inhibitor called SB1518) that I would qualify for and so far only three people have tried it at MDA with only one person getting a response. I just can’t justify going to Houston for such a relatively unknown/unproven drug.

On a positive note, at least I had a chance to meet the legendary Dr. Anas Younes in person. If nothing else, I made a personal connection with him and got myself registered as a patient in MDA’s system just in case something opens up down the road. According to Dr. Younes, there are drugs in the pipeline that hopefully will be opening this year so I’ll definitely keep in touch. One nice thing is that he agreed with my course of action on trying the less toxic, novel new treatments for HL that are coming out and saving the heavier stuff for just in case I need it down the road.

As far as the rest of the trip to Texas, Jackie and I had a great time (once we left Houston). Austin is a blast and for anyone who’s never been there I highly recommend it (especially if you like live music).

So on tap, I fly to Detroit April 14th for another round of IVIG (which will hopefully help me turn the corner on the Guillain Barre Syndrome). I'm doing better with my hands but my legs are still lagging behind. From there I leave for NYC and it looks like I’ll be starting SAHA/Niacinamide at NYU on April 19th. I’m relieved and nervous at the same time. All I’m asking for is for some type of response as my back is getting pretty sore. If I can keep my disease stable or better yet get a partial or complete response (which is asking for a lot I know) I'd be really happy.

For now, I'm just going to enjoy the nice Florida sunshine and try not to think too much, ha!

Here's some shot's from Austin for S&G's :)


This is a beautiful place just outside downtown Austin called Barton Springs. The naturally spring fed water stays a constant 68 degrees and it's so crystal clear you can see down to the bottom.


This cat was getting crazy on the diving board


Getting ready to check out the bats of Austin. I'll explain below...


This swan showed up for the show too ;) He was working the crowd like he's been here before, ha!


There's a bridge downtown that is home to the largest concentration of "urban bats" in the world (or maybe the U.S. can't remember). Anywhere from 750,000 to 1.5 million bats come out every dusk to munch on 10,000 to 30,000 pounds of bugs every night!


They were swarming everywhere and as I walked close to the bridge, it stunk pretty bad. They sleep in the expansion joints under the bridge which is only an inch or two wide.


Shot of Jackie on Congress St. Lots of funky shops and some good restaurants. Last time it was 6th street and this time got to know Congress.


Can't remember the name of this Psychobilly two piece at the famous and legendary Continental Club on Congress


One of the many colorful performers of the Austin Streets!


Austin's unofficial motto!

Off to Houston/Austin TX!

So I took the Tri-Rail to the airport and things are startiing to get a little easier for me. The AFO braces, while painful to wear, allow me to walk fairly well now and provide decent stabiliy when I’m standing. Even better, my hands are slowly starting to become useful again! I can pull things out of my pockets (like my wallet, etc.) and can insert and remove my credit card from the check-in kiosk at the airport, hells yeah! I don’t want to get too cocky but I think the worst of the GBS is over and the last 2 or 3 months will hopefully be just a bad memory.

I also found out that my insurance approved another infusion of IVIG so I figure after that I should be a new man! I’m really hoping I can dust off the golf clubs and possibly jump on my bike again. Or, maybe I should just chill and not get too over zealous! I don’t want to jinx myself -- it’s just that I feel like I want to jump out of my skin sometimes and do normal things that I used to be able to do…

Now if I can only hold on and wait for my next treatment until 10 days after the IVIG… My neurologist e-mailed and told me that I should try and wait 10 days after the infusions before I start new therapy. Most chemo’s tend to damage the nerves and we’d just be defeating the purpose of IVIG if I jump into treatment before the second round has a chance to work. This is somewhat complicated as the therapy I’m seeking out isn’t conventional chemo but drugs that work with your body to “starve” the cancer cells or cause your genes to “turn off” the signals that the cancer cells need to proliferate. These classes of drugs are called HDAC inhibitors or mTOR inhibitors. There are others that I’m sure I’ll find out about on Friday as well. I just need to figure out if any of these will cause damage to my nerves like the last drug I was on. Nice thing is my local oncologist and neurologist (in Detroit) are husband and wife! I can get them in the same room and let them determine if what I choose to control the cancer is going to be counterproductive to me healing from GBS. That should be an interesting conversation :)

By the way, speaking of interesting, I read an article written by Linda Johnson from the Associated Press today regarding a law that is part of the new Healthcare Legislation. The new law requires doctors to disclose any payments they receive from the drug companies to promote a certain drug (or clinical trial) in any way. Unfortunately the law doesn't kick in until 2013 but Phizer and some others have volunteered to disclose the inrformation immediately (smart P.R.). Here's the link if interested:

http://hosted.ap.org/dynamic/stories/U/US_PFIZER_DOCTOR_PAYMENTS_NYOL-?SITE=NYMID&SECTION=HOME&TEMPLATE=DEFAULT

Another major benefit for me and countless others who depend on the efficacy of drugs rather than how well they're marketed... How did this go on for so long?

So I land in an hour or so and plan to take it easy tonight in Houston. I’ll be at M.D. Anderson all day tomorrow and then it’s off to Austin! The weather is supposed to be beautiful and I’m looking forward to checking out some nice live music, consuming some of the tasty local grub, and just taking in the great Austin vibe.

Good times!

Feeling Better

Well it looks like the muscle soreness is on it's way out, thank God. Was actually able to hang some curtain rods today and cooked my first meal in a long time - seared a Mahi Mahi filet with some brown rice and corn, it was just ok... Actually, the rice was nasty and I'm kinda a fish snob preferring fresh over frozen but hey, it was good to be able to cook again!

I ended up renting on demand "The Hurt Locker" and it was really good, very intense. Kinda makes my situation a little more tolerable being reminded there's guys and girls over there with their lives on the line every day.

Although I enjoyed the movie, I just wanted to document that I had 3/4 of a beer and for the first time in a while I had some pretty serious pain in my back from the alcohol beyond my normal discomfort. I haven't mentioned it in a while but I have the rare symptom of my disease of pain in my affected lymph nodes after consumption of just a few sips of alcohol. That is, when my disease is active is when the pain happens. It's kind of like my own personal PET scan so to speak. There may be other contributing factors because I've had disease in me now for almost a year since my transplant and the pain with beer comes and goes. They don't know a whole lot regarding why it happens but my personal experience is when the pain is there, the cancer is growing. I'll be anxious to see how my required scan turns out before I start the next clinical trial.

Despite this, I'm pretty calm and content. I had a nice conversation with my friend and fellow Hodgkins Warrior Kirsten today and it's calming to speak to someone who is going through the same thing I am. In fact, I'm really grateful to everyone who has reached out to me with support via commenting on this blog or sending me e-mail. It's so nice to hear from people letting you know they care, even if you've never met them... In fact, I've never taken the time to thank my friend Veronica from across the pond but please know Vx that I really appreciate all of your comments. You are awesome!

Tomorrow I'm going to go out and grocery shop for the first time in a while. I feel like I have to prepare for battle coming up and need to "bulk up" in the likely event that I'm going to be feeling not so swell in my stomach from the next trial. If I choose the SAHA trial, 61% of the trial participants reported having nausea. Hell, I forgot what the percentage was but another side effect is anorexia, yikes! To be proactive, I might seek out a prescription for Marinol which has antimetic properties and has been known to give people the munchies, ha! There's another trial I've been looking into called Lenalidomide which has a 35-50% response rate but the big side effect of that one is reduced blood counts and rash. Like Kirsten and I were talking, it seems like nausea is the lesser of two evils as you can somewhat control it but the only way to fix blood counts is through transfusions which I've had plenty and prefer to avoid. Not to mention, when your counts go down, you're suscetable to infection and I don't want to get sick...

Maybe Dr. Younes at M.D. Anderson in Houston has a trial that gives no side effects and has great efficacy...!

I guess the beer has gone to my head too ;)

I'll find out for sure Friday...

Beat Up...

That's how my body feels right now. Today, I really haven't been able to get out of bed except for a trip out for food. The little mini workout I did two days ago has left me feeling like I've been in a car accident or something. Every part of my body aches. I couldn't sleep last night and took a muscle relaxant at 5:00 am and know this has definately exascerbated my listlessness. Now I remember why I stopped taking those things when I was so sore from working out right after my transplant.

Anyway, I made the best of my trip out for dinner by taking my Chipotle takeout to the beach just a couple of hours ago. There's a storm brewing out at sea -- the waves were crashing and there was an eery mist hovering over the dark beach... It was very surreal as I was eating my food!

I'm watching animal planet right now and it's about this guy who turned his studio apartment into a big lizard tank. He lived with all these giant lizards and they ended up killing him and eating him, crazy...

The trip to Lakeland to see the game was a great time. It was a perfect 75-80 and I was part of the largest crowd ever at Joker Marchant Stadium! The Yankees were in town and of course there were a lot of New Yorkers there so that explains it. I tried to use my new handicapped status to get some seats that didn't require a climb up tall stairs but for some reason it was a little more difficult than my last trip to Joe Louis Arena. I think it has to do with the fact that there are so many people at the game that are handicapped! In other words, 75-80% of the fans there were retirees and let's just say some of the ushers were "crotchety". My buddy Eric however was able to find a helpful guy who let us go up and elevator to the press box area. The game itself wasn't great as we lost 2-1 but it was fun to see a pro baseball game at such a little stadium and a great way to spend a spring day :)


Beautiful day for a baseball game!


You know it's a minor league ballpark when there's an eagles nest on top of one of the lightowers! Click on the pic for a closer look


Tough to see my favorite Tiger Curtis Granderson in a Yankee uniform...


Pic of my buddy Eric with a Tiger legend Lou Whitaker. Notice how happy the little girl is in the background running the bases :D I think Sweet Lou had a few Bud Light's during the game (actually he had one in his hand as he was signing autographs) as he was going on and on how great he was! I mean he was a great player but when my buddy Eric mentioned that "he was great in 1984" and Lou responds by saying "he was great well before 84". well you get the picture...


I made a pit stop on the way home to this great BBQ trailor and had a great pulled pork sandwich. I've developed an affinity to roadside food trailors... The food is usually really good and it's supporting local small business.

So I'm hoping this soreness goes away somewhat tomorrow and I can get to the pool and get some laps in...

I'm getting a little anxious to get started on my next clinical trial as I can feel the junk growing in my back. It's especially disturbing feeling it on my spine in my lower back. I'm banking that the next drug is going to knock this back a bit so I can continue to heal.

I'm now able to use my right hand to start my car! I used to have to reach around the steering wheel with my left hand to turn the key so I continue to see small progress with my hands.

With all this said, my mind is still strong even though my body feels beaten down. I'm comforted knowing that I do have options and just need to keep the faith that one of these drugs is going to put me in remission (or shrink the disease down). I feel like I have a break coming my way after all that I've gone through with with the SGN-35 (and subsequent GBS) and it not shrinking my disease. It would just be so much easier to take the side effects of these drugs if you knew they were going to actually work.

This is part of my reality however and I accept it. I'll continue to adjust and be thankful for everything I have and try not to be bitter. I know there's a reason why this is all happening and one day I'll have it all figured out.

Tomorrow's a new day...