Thursday, August 25, 2011

Problem could be developing, ugh...

So I went in for bloodwork on Wednesday and while my platelet count was pretty steady at 41K, Dr. Ram told me for the first time (I really don't pay great attention to my blood results) that my neutrophils have been trending downward for a while now and Wednesday's test had me at 1.1, the lowest I can be is 1.0, bummer... Probably explains why I've been feeling a little crappy lately. I had a scare on Monday evening when I developed a nasty migraine headache and was up vomiting all night, not fun. I think I may have contributed to it by roughing up my counter tops in another attempt to refinish them (this time it worked :) without a mask on and also not drinking enough water as it was hot out Monday. Anyway, it went away next afternoon but the lack of sleep all night took a toll on me and I've trying to catch up ever since. Going back to the neutrophils (basically your immune system count), I have to be really careful of avoiding situations where there may be sick people in a closed environment. I have to bring a thermometer with me to check for fevers and if I get one, have to go to the emergency room as per Ram. Again, bummer...

I personally am thinking/hoping this is just a little bump in the road and the neutrophils will rise a little removing me from harm and I can continue on this dose of RAD001. However, if in two weeks they've gone below 1K, Dr. Ram said he may have to lower my dose which of course will reduce the drugs' effectiveness preventing my disease from spreading.

Just when I thought I had it good... rats!

I guess I'll just be careful, treat my body extra special and keep the stress low while trying to enjoy myself. I'm almost done with my projects here at the house and from there, I'm going to take time to travel a bit I think, it's been a while. If the neutrophils are low, I may have to take some road trips which is no problem whatsoever of course! I'm thinking on my drive down to Florida this year, I'll go to the East Coast then follow it down making stops in places I've yet to spend quality time, perhaps like Boston, DC and North Carolina. Hawaii and the Northwest is on the horizon again too not to mention Europe (thx to my buddy Sean hopefully ;).

Enough about me, what I'm dealing with is nothing compared to the following three people. First of all, my cousin Rodney who lives with his wife Renee in Vancouver BC just advised the family that things aren't going so well with him. Rodney has Diffuse Large B Cell Lymphoma and learned that first and second line therapy hasn't worked. In fact, his disease has turned agressive and they're going to try a drug that I've had in the past with some success (Gemzar) even though we have different cancers. I'm now more certain than ever that cancer is definitely genetic as Rodney and I couldn't have lived further apart. Anyway, the goal is to get him to a point where he's strong enough physically and blood count wise to pursue clinical trials whether they're in Canada or here in the U.S. Thoughts are going out to those guys, hit's ya even harder when it's a family member dealing with a similar situation.

I also wanted to request prayers and good vibes from a couple of my fellow Hodgkins warriors. First, I just read Zach Rongers' Caring Bridge site which is written by his wife Erin. Seems as if Zach's symptoms are worse than they've ever been and like a lot of us refractory folks, has tried a lot of different treatments. They seem to be running out and to make matters worse, the guy is pretty miserable with itching, coughing, shortness of breath and energy. Hoping he can find something to knock back the disease a bit to buy him time for perhaps one of the new T cell studies that are out now. Another friend, Mike Reed is dealing with a couple of really tough scenarios. I think I mentioned him before but because of all the therapy and chemo Mike has had over the years, he's developed a blood disorder called Myodysplacia (sp?), which is very difficult to treat and wreaks havoc on his blood counts. It's difficult to fight two things at once (Myo and Hodge) but that's exactly what he's doing and my hat goes off to the guy. Both Mike and Zach have been dealing with this much longer than me and I have nothing but admiration for their courage in dealing with their physical and mental issues not to mention both have somehow kept working and both are fathers, pretty amazing.

Can't forget Rich, my step Dad who will be getting results of his PET scan tomorrow after they found a nodule on his lung. Hoping for good news here tomorrow of course. He already deals with heart issues and it'd tough I imagine to fight both but if anyone can, he can do it. The guy is a warrior!

Please keep him, my cousin Rodney and friends Zach and Mike in your prayers or thoughts. Really appreciate it.



Thursday, August 11, 2011

Continuing to do relatively well :)

Because I'm tired and just posted in my Hodgkins Forum, I thought I'd just copy what I wrote in my post there. I finally finished my bathroom! I'm now on to the kitchen which isn't nearly the project although I just had to rip out a section of my ceiling from the leak that was recently fixed in the bathroom, blah, blah, blah... Anyway, I'm redoing my counter tops (which were a dirty white) with this nice new product from Lowes where you reface rather than replace the tops. It's a 4-5 step process and hoping I can seal em up tomorrow and they look good. I have so many other little projects going on... I'm anxious to finish the inside of the place so I can spend the rest of the summer going on trips (hopefully).

Anyway, I need to crash so I can get up at a reasonable time tomorrow to sand and seal. If it comes out ok, I'll put some pics up!

Here's my post, some of the info may be repetitive. Notice we all list our treatment lists at the bottom of our posts, mine's getting pretty long, plus I just noticed I still have my age as 39, ha! Think I'll just keep it as is for s and g's ;)

Hey everyone, just wanted to let everyone know the RAD001 seems to be working for me :-) after almost two cycles, I've had reduction in some areas and stable in others. This is around a month ago... Since then, I've continued to feel better (my disease is in my back usually the pain is the indicator of what my disease is doing) which is great! What's even better is I have a quality of life back that allows me to do things that I was unable to do previously because of what SGN-35 did to my body.

It feels so good to have strength back, the most energy I've had in a while, very few side effects (occasional diarrhea, acne which can be controlled and low platelets).

I've felt so much better that there are days where I won't think about cancer for hours at a time which is pretty good when you have refractory Hodgkins.

Anyway, for any of the refractory folk who haven't tried RAD001, if it's available at a cancer center you can reach, it's a good option for those who haven't responded to traditional chemo like myself.

I've also sent blood to a Dr. Heslop at Baylor university who is heading a gene therapy trial which also grows your genetically altered killer T-cells although using different technology. I haven't researched how the drug works (been too busy enjoying my life but know the criteria is different from Dr. Bollards killer t trial at Baylor for those who are EBV+ in their tumors. Dr. Heslops trial only requires that you are EBV seropositive (which means you have EBV in your blood which 95% of the population has) and you are CD30 positive (which anyone who is accepted into SGN-35 is CD30 positive). So, when I find out more information (kinda holding off until I get official word that my genetically altered T-cells are actually growing as to avoid disappointment if they're not).

Anyway, hope you all are doing well and if anyone has any questions, I'll do my best to answer.

Chris 39, NSHL IVB BMB neg, 11-07 ABVD x 6, 1-08 NED, 6-08 Primary refractory, 6-08 V-ICE x2, 8-08 GVD x 3, 11-08 1st SCT Melphalan 2nd SCT TBI, VP-16, Cytoxan, 6-09 Relapse 7-09 SGN-35, 4-10 SAHA/Niacinamide, 5-11 RAD001


Saturday, August 6, 2011

Thoughts and prayers for the Keeleys

I just wanted to take this opportunity to honor another lost comrade to this ugly disease. My prayers go out to Kimberly, who lost her husband Andy after six years of fighting Hodgkins. I remember reading about Andy when I first joined the Hodgkins forum and feeling so bad that he had refractory cancer and how he did it. Well, I'm in the same boat now and I know how he did it, the best that he could. Judging by what's written below, Andy was one great guy who lived a very rich life. Makes me want to make more of an impact, very inspiring and I know my fellow Hodgkins friends hearts' go out to Kimberly and will miss updates about Andy. He never really posted but you got a sense of how he was struggling with Kimberly's posts. I know he's comfortable now though. Rest in peace Andy, and peace be with you Kimberly.

Here is the obituary for Andy:

Stephen Andrew "Andy" Keeley of Alpharetta, Georgia died on August 3, 2011 after more than six years battling Hodgkin's Lymphoma, which is a rare cancer of the lymphatic system. Andy grew up in Brevard, NC. He married his wife Kimberly on top of Stone Mountain in Georgia in 1998. They had two children together, Olivia and Calvin, ages nine and seven.

Andy was a 1988 graduate of Brevard High and attended NC State where he earned his degree in Mechanical Engineering. He worked as an environmental engineer with Mactec, Inc. Andy was very environmentally conscious. He loved what he did and the people with whom he worked.

Andy was adventurous - cycling across America after high school, traveling through Europe and Costa Rica, running with the bulls in Pamplona, working in Amsterdam, and backpacking through the western and eastern United States. He was relaxed, calm, and comfortable in all situations. Andy enjoyed playing pool, woodworking and was an avid movie enthusiast. His favorite movie was Harold and Maude. Andy loved music, especially Jeff Buckley, Cake, Rusted Root, and Sara McLachlan. He loved taking walks and good food.

Andy did not let cancer stop him from having as normal a life as he could. He was a wonderful husband and father. Even as cancer eroded his physical abilities, he was going on Cub Scout camping trips, to rocket launches and hockey games, to the children's gifted classes at Georgia State and to Girl Scout activities. He loved to take his children to the Greenway, the pool and the movies. He taught both his children to ride their bikes a few days before being hospitalized with lung problems in May.

Andy was a proud member of the Unitarian Universalist Metro Atlanta North congregation in Roswell, Georgia.

Andy is survived by his wife, Kimberly Keeley, his children, Olivia and Calvin, his parents, Dr. James and Jo Anne Keeley of Brevard, NC , Dr. Mike and Rhonda Keeley of Shelby, NC, Scott and Kim Keeley of Charlotte, NC and Matt Keeley of Istanbul, Turkey.

In lieu of flowers, the family would prefer contributions be made toward a fund for his children's college education, which may be sent to P.O. Box 4876 Alpharetta, GA 30023. Additional contributions may also be made to the Leukemia Lymphoma Society or to Hospice of Cleveland County.

Here is their Caring Bridge site if you would like to check in: