Thursday, April 29, 2010

A Nice Couple Days in the Life!

I'm exhausted... It's nice though because I finally have my life back! Yesterday, I went on a long walk on the beach then swam in the warm Atlantic Ocean after :) I then jumped in the car and went to the golf range and hit a bucket for the first time in a while. I'm still nowhere near 100% but it feels great to be able to do things I love again.

Today was awesome too as I got up at 5:15 this morning and went out fishing with Dan, Mike, Todd and Mr. Nalezyty. We had a great day! Got an African Pompano, and a bunch of nice keeper Snapper. I landed/reeled in a nice Mutton and Vermillion Snappper, big fun! We ate our catch tonight over Mike's with the family and it was great.

Nice African Pompano!

The Nalezyty's just after Dan reeled in the African Pompano

Me posing with the fish even though I didn't catch it, ha!

I did catch a couple of the Snappers in this cooler though ;)

My other buddy Mike is coming in tomorrow from Cali for a couple of days so that should be cool.

Time to crash and rest my weary body...

Tuesday, April 27, 2010

Going Home!

Hopefully this will be the last update from my phone as they never did fix the Internet at the Hope Lodge... Sitting here at LaGuardia airport and just forced a breakfast sandwich down. I'm having some real difficulty with my appetite and have been prescribed Megase (sp?) to help stimulate it. If this doesn't work, they're going to prescribe me Marinol next time I go back. They say it works better than Megase but because of insurance issues they have to try the cheaper one first.

I'm cautiously optimistic but think the S@N might be doing something! I know it's only been a week but I can now watch tv while laying on my back! There's still a little discomfort there but not like before. I hope I don't jinx myself but just wanted to put some positive news out and hope it continues :)

I've figured out the best beverage to mix the Niacinamide pills and through trial and error orange juice is the winner! It seems the bitterness of the oj mixes with the nastiness of the N and makes it tolerable. This is of course after I grind down the 12 N pills into a powder with my coffee grinder! I had to make sure and clean the thing out well as the last thing I need is airport security questioning me why I have a mysterious white powder coating a coffee grinder!

So like I said, I'm excited to head back to SoFlo. It feels like I'm going on vacation or something, ha! Going out on my buddies' boat on Thursday as the fishing has been slamming lately. Dan and Mike's Dad was down last week and they got a Wahoo which is one of the most prized fish in the ocean both for prestige and eating. The things are huge and swim over 50mph! Needless to say, if we hook one, it'll take a team effort to get it in.

Anyway, getting close to boarding so I'll wind this up. I come back for another 8 days May 3rd then I have a couple weeks off!

The Journey Continues...

Saturday, April 24, 2010

Hangin in there...

This will be short due to the wireless being down for the last few days and having to update from my phone! Everything is going relatively smooth after the rough start. I've got some pretty annoying and uncomfortable GI issues and some fatigue but that's about it. Had a chance to get out and walk around the city and took the subway back to my room. For whatever reason, I really feel accomplished being able to figure out the NYC subway system. I've still a ways to go but it's kinda fun and a good way to learn the city.

Met up with my friends Dennis and Paullette last night in Hells Kitchen and we watched the Wings game. There were a couple of Detroit fans there besides us so that was cool. Also had a chance to hang out for a bit with fellow Hodge warrior Bekah as she was here for the SGN-35 trial at NYU as well.

Mostly though, I just hang out in my room and rest. I've got to get used to these stomach issues and know I will. I have no idea if the drugs are working yet as I can still feel the soreness in my back/spine.

I'm actually looking forward to going back "home" to Florida. I think I finally might be ready to get back out to the golf course and out fishing (and actually reeling in some big fish). Also looking forward to getting back into the pool and ocean. The city is great but think I prefer the sound of exotic birds over honking horns...

Anyway, that's it for now, hope alls well to whoever is reading this :o)

Wednesday, April 21, 2010

It's On...

Well, it wasn't easy but I've finally started the SAHA/Niacinamide trial...

I didn't think it was going to happen.

I got to the airport on time in Detroit, the flight was smooth and even managed to find a $10 bus from LaGuardia to Manhattan so everything started so smoothly. The only problem I had was a nagging headache that day that I was able to control with Advil. Unfortunately, the headache turned into chills and the chills turned into sweats and before I knew it, I had a 102.3 fever in my room the night before I was supposed to start the trial, ugh...

So, here I was, in my room thinking that there was no way they're going to let me start this trial with this fever. So, I took some more Advil, went to bed and hoped for the best. Turns out, I woke up, took my temperature and the fever was gone! I think I must have had a delayed reaction to my last infusion of IVIG. So, re-energized by my good fortune, I decided to walk to NYU from my room which is about 1.4 miles. This is a pretty big accomoplishment for me as I haven't walked that far in several months. It was a nice day so I put my headphones in and went for it. It wasn't that bad and actually invigorating! I was pretty sweaty by the time I got there so that was kinda weird... No biggie though, I went up to the counter, got the paperwork, filled it out and waited for the next steps. 45 or so minutes later, they called my name and I went back for blood draw. The guy who was to draw my blood barely spoke English and I was trying to ask him if he could use an IV that could be used for blood draw and PET/CT scan (20 guage needle) so I didn't have to get poked twice.

This is when the wheels fell off the wagon..

I was told to go back out to the lobby and wait again, ok. An admin assistent came out to get me a couple of minutes later and we walked down to the radiology floor where she was going to request them put the IV in and also draw my labs. They didn't want to have any part of it, ugh... So, we then went back up to the seventh floor where Dr.O's P.A. hurridly took the initiative of placing the IV, doing the blood draw and then telling me I needed to rush down to the 2nd floor to get my scan, which I did. Unfortunately, by this time, the radioactive sugar that they were supposed to inject me with had expired and the PET/CT scan was off and any hope of starting my new trial on the planned start day seemed lost. I needed to regroup because at this point, I was pretty pissed. So, back I was sent out to the lobby to wait while the people who are resonsible for my well being devised a plan. Out comes Sean, the trial coordinator who happpens to be a great guy. Sean carefully apologized and explained what happened. I won't even go into the reasons because they don't make sense to me. He was able to order another PET/CT from Park Ave. Imaging and had a car come pick me up to take me over there. I ended up getting scanned and finally got back to my room at around 7:30 after starting my day at 11:30. Long day to say the least.

Of course I wasn't able to start the SAHA on Monday as planned because they needed the results of the scan.

So, I regrouped that night, pretty much passing out as soon as I got to my room. I walked back to NYU the next morning and was given the results of the test which weren't as bad as I thought they were going to be. Yes, my disease has gotten bigger in my "paraspinal" area where I've been having the pain and discomfort. The largest node (among 3-4) is 1.3 x 2 x 2.8 cm. It didn't seem like there were any new areas of disease which I was grateful for, only some "suspicious" areas that we will keep an eye on.

Now with all of that out of the way, I was given my pills and took my first dose yesterday. There are 12 Niacinamide pills and 5 SAHA pills (not the 20 I originally thought). That said, I felt a little woozy yesterday and slightly woozy today after taking my second dose but nothing I can't handle. I took a zofran and attivan and think I'm going to go down for a nap.

It's definately been an eventful start to my NYC trip! Looking forward to getting out to see more of the city in the next few days!

Here's what I've got so far...

Had coffee with my cousin Jeff's girlfriends sister at my favorite little park. Turns out Sara is also a Hodgkins survivor who was diagnosed around the same time as me. Thankfully, she's clean now and pursuing a degree in fashion design here in NYC.

This guy was enjoying some of the sunshine on 34th ave! Just when I think I have it bad, don't need to look very far...

The Empire State building is on my walk to NYU from the Hope Lodge!

I kept envisioning King Kong climbing up and fighting off the airplanes while he had the girl in his hand...

I'll update when I can...

Saturday, April 17, 2010

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

Tuesday, April 13, 2010

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 :)

Friday, April 9, 2010

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!

Tuesday, April 6, 2010

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!

Thursday, April 1, 2010

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:

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!