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 http://chris-alt-del.blogspot.com/
Thursday, August 11, 2011
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:
http://m.caringbridge.org/visit/andykeeley/journal/entry/id/9324234/page/1
Wednesday, July 27, 2011
Platelets holding on
Went to Karmanos today for blood work and still able to continue on the trial with platelets at 37K. Have to be really careful with my platelets so low as I bruise really easily and the bloody noses continue. I've learned the effectiveness of oxyclean for the pillowcases, that stuff really works!
Really excited to be leaving for beautiful northern Michigan tomorrow for the golf trip. I'm going to drive home down the west coast of the state along Lake Michigan, can't wait to take some shots.
BTW, got the official report of my last CT scan and it was pretty much what they told me, stable in some nodes and reductions in others. No new growth!
Feeling well and hoping to keep it rolling...
Really excited to be leaving for beautiful northern Michigan tomorrow for the golf trip. I'm going to drive home down the west coast of the state along Lake Michigan, can't wait to take some shots.
BTW, got the official report of my last CT scan and it was pretty much what they told me, stable in some nodes and reductions in others. No new growth!
Feeling well and hoping to keep it rolling...
Wednesday, July 20, 2011
Melting
I think I'm melting, literally... It's been hotter and muggier here in Michigan over the last week than it is down in Florida this time of year and that's saying a lot. The worst part is that I don't have air conditioning in my house (but thankfully do in my bedroom) and it's pretty damn draining.
I have however been able to muster up some energy over the last couple of days after almost two weeks of chronic fatigue. I guess that's why I haven't updated (too tired at night after doing my projects on the house). Maybe I'm getting used to this. Makes you wonder what people in really hot areas of the country used to do before air conditioning. Really, I think you just get used to it like I said. The key is staying hydrated. I'm well trained in this area after having two stem cell transplants and Dot as my nurse at SCCA. She was a stickler on hydration and I knew if my blood pressure was low because of it, she would make me stay and get infused with a bag of hydration before I left. I made sure to drink tons before I went in for those appointments. I wanted to spend as little time in that place (having to go every day) as possible. Plus, the infusion floor wasn't exactly the most pleasant place to hang out even though the nurses did do their best.
So, another reason I haven't updated is I never received the official report of my CT scan. They were supposed to fax it to my Mom's and Rich's place but never heard of it happening. I guess I'm not overly concerned. I know I'm probably not quite in remission but feel confident that my disease is under control. I can even have a glass of wine with dinner now on a regular basis without even a hint of pain. This is pretty major. I always knew where my disease was relatively speaking by how my side and back felt after a just a few sips. The pain always would vary and thought it corresponded with the extent of disease I had. So, in theory, right now I think I'm pretty close to being disease free and it feels really awesome I must say. I also am getting my strength back from working on the house and I can't tell you how great it is to feel somewhat strong again. I worked out while I was doing my initial therapy of ABVD and started again after my second stem cell transplant. I got into pretty good shape before all hell broke loose when I relapsed again and was almost paralyzed from SGN-35. My feet and toes are permanently damaged I'm afraid though and cant be on them for too long or they swell like balloons at night. Back to the strength though, the remodel project of the fixer house in Ferndale has been a struggle, a major struggle to say the least but I'm finally starting to see some results and have this new found strength in my legs, back, hands and arms as result. I'm really glad I did it still -- it gives me a feeling of utility and I can do it on my own time, when I have the energy...
So that's pretty much it for me, I haven't had any major exciting or crazy things happen to me lately which I'm grateful for. I had enough drama over the last six months to last me six years! I like living drama free (relatively speaking of course). Come to think of it, I did drop a sheet of drywall on my big toe yesterday and there was blood gushing everywhere and couldn't sleep last night because of the pain but today it's fine. I'm kinda used to getting beat up working on the house. I'm pretty much full of cuts, bruises, bumps (a few on my melon) but when you do work like this it comes with the territory. It's funny when you work with someone else and they bang themselves up and there's blood running, or it may happen to you and you don't even stop. Sometimes you might just start laughing. I think I've developed a pretty good tolerance for pain over the last couple of years...
Spared you the uncovered version of my smashed toe. Let's just say I'll be getting a brand new toenail as my consolation prize ;)
Forgot to mention that I'm going on a golf outing next weekend with a bunch of crazy old high school buddies and some of their friends. I was supposed to go last year but my back was way too shot to play plus I think I wasn't feeling really well at the time. This is going to be awesome, what a blessing! I remember feeling like I was never going to be able to play golf again and really being bummed about it (it's the last sport I play) but poof, I'm able to play again and fairly satisfied with how I can play which is a bonus.
Also forgot to mention that I've been reading the Keith Richards biography "Life" and have been mesmerized. For any Stones fans out there, this is a must read. Even if you don't care for them, it's still really interesting. It's a pretty thick book and I'm on page 330 or so out of around 550. Hope to finish by the end of summer. My routine is reading around a half hour a day out in the sun to get my Vitamin D when the sun is out. It's kinda ironic that I'm reading a book about a guy who for most of his life has slowly tried to kill himself (although he in no way looks at it like that) and here I am searching for ways to stay alive!
Alright, time to attempt to crash, wanted to send prayers our to Mike and the Reeds. Mike has just found out because of all of his previous treatments, he's developed a very difficult bone marrow disorder called MDS or myelodysplastic syndrome. He also found out his Hodgkins is progressing so I can only imagine what he's dealing with right now and requesting prayers for him and April if you believe in that kind of thing -- even if you don't believe, it wouldn't hurt...
Out like a light,
Chris
I have however been able to muster up some energy over the last couple of days after almost two weeks of chronic fatigue. I guess that's why I haven't updated (too tired at night after doing my projects on the house). Maybe I'm getting used to this. Makes you wonder what people in really hot areas of the country used to do before air conditioning. Really, I think you just get used to it like I said. The key is staying hydrated. I'm well trained in this area after having two stem cell transplants and Dot as my nurse at SCCA. She was a stickler on hydration and I knew if my blood pressure was low because of it, she would make me stay and get infused with a bag of hydration before I left. I made sure to drink tons before I went in for those appointments. I wanted to spend as little time in that place (having to go every day) as possible. Plus, the infusion floor wasn't exactly the most pleasant place to hang out even though the nurses did do their best.
So, another reason I haven't updated is I never received the official report of my CT scan. They were supposed to fax it to my Mom's and Rich's place but never heard of it happening. I guess I'm not overly concerned. I know I'm probably not quite in remission but feel confident that my disease is under control. I can even have a glass of wine with dinner now on a regular basis without even a hint of pain. This is pretty major. I always knew where my disease was relatively speaking by how my side and back felt after a just a few sips. The pain always would vary and thought it corresponded with the extent of disease I had. So, in theory, right now I think I'm pretty close to being disease free and it feels really awesome I must say. I also am getting my strength back from working on the house and I can't tell you how great it is to feel somewhat strong again. I worked out while I was doing my initial therapy of ABVD and started again after my second stem cell transplant. I got into pretty good shape before all hell broke loose when I relapsed again and was almost paralyzed from SGN-35. My feet and toes are permanently damaged I'm afraid though and cant be on them for too long or they swell like balloons at night. Back to the strength though, the remodel project of the fixer house in Ferndale has been a struggle, a major struggle to say the least but I'm finally starting to see some results and have this new found strength in my legs, back, hands and arms as result. I'm really glad I did it still -- it gives me a feeling of utility and I can do it on my own time, when I have the energy...
So that's pretty much it for me, I haven't had any major exciting or crazy things happen to me lately which I'm grateful for. I had enough drama over the last six months to last me six years! I like living drama free (relatively speaking of course). Come to think of it, I did drop a sheet of drywall on my big toe yesterday and there was blood gushing everywhere and couldn't sleep last night because of the pain but today it's fine. I'm kinda used to getting beat up working on the house. I'm pretty much full of cuts, bruises, bumps (a few on my melon) but when you do work like this it comes with the territory. It's funny when you work with someone else and they bang themselves up and there's blood running, or it may happen to you and you don't even stop. Sometimes you might just start laughing. I think I've developed a pretty good tolerance for pain over the last couple of years...
Spared you the uncovered version of my smashed toe. Let's just say I'll be getting a brand new toenail as my consolation prize ;)
Forgot to mention that I'm going on a golf outing next weekend with a bunch of crazy old high school buddies and some of their friends. I was supposed to go last year but my back was way too shot to play plus I think I wasn't feeling really well at the time. This is going to be awesome, what a blessing! I remember feeling like I was never going to be able to play golf again and really being bummed about it (it's the last sport I play) but poof, I'm able to play again and fairly satisfied with how I can play which is a bonus.
Also forgot to mention that I've been reading the Keith Richards biography "Life" and have been mesmerized. For any Stones fans out there, this is a must read. Even if you don't care for them, it's still really interesting. It's a pretty thick book and I'm on page 330 or so out of around 550. Hope to finish by the end of summer. My routine is reading around a half hour a day out in the sun to get my Vitamin D when the sun is out. It's kinda ironic that I'm reading a book about a guy who for most of his life has slowly tried to kill himself (although he in no way looks at it like that) and here I am searching for ways to stay alive!
Alright, time to attempt to crash, wanted to send prayers our to Mike and the Reeds. Mike has just found out because of all of his previous treatments, he's developed a very difficult bone marrow disorder called MDS or myelodysplastic syndrome. He also found out his Hodgkins is progressing so I can only imagine what he's dealing with right now and requesting prayers for him and April if you believe in that kind of thing -- even if you don't believe, it wouldn't hurt...
Out like a light,
Chris
Wednesday, July 6, 2011
No official word yet, but...
I've been waiting to post the official results of my latest CT scan but unfortunately I haven't received them yet. I did however receive the unofficial quick read and the guess was reduction in some areas and stable in others. I probably could have called and pushed for the official reading but the truth is, I really don't care. The most important thing to me right now is I'm feeling relatively awesome despite some side effects and having a great summer!
Playing golf with buddies, finishing up just in time as the sun was setting
At the ballgame with my buddy Eric
The crazy futuristic stage at the U2 concert (which was incredible).
The bathroom project just after demo (before shot)
The bathroom almost done, thank God. Just need to tie up loose ends like painting and fixtures and I'm good to go! Kitchen comes next...
So, along with constantly working on the house, I've been really getting out and enjoying myself. Haven't felt this good in a long time. I'm really trying to enjoy it and drink it in so to speak. Living in the moment and hoping for a good tomorrow is a pretty good way to live and I've been doing my best to make this happen. I've also eliminated a lot of stress in my life which I think is going a long way toward my feeling well. Going to continue to seek ways to live well and see what happens ;)
I'm not due to see the doctor again until the end of the month or so... I think I'm just gonna continue to enjoy life and take some time off from this cancer stuff if I may.
I feel truly blessed :)
Playing golf with buddies, finishing up just in time as the sun was setting
At the ballgame with my buddy Eric
The crazy futuristic stage at the U2 concert (which was incredible).
The bathroom project just after demo (before shot)
The bathroom almost done, thank God. Just need to tie up loose ends like painting and fixtures and I'm good to go! Kitchen comes next...
So, along with constantly working on the house, I've been really getting out and enjoying myself. Haven't felt this good in a long time. I'm really trying to enjoy it and drink it in so to speak. Living in the moment and hoping for a good tomorrow is a pretty good way to live and I've been doing my best to make this happen. I've also eliminated a lot of stress in my life which I think is going a long way toward my feeling well. Going to continue to seek ways to live well and see what happens ;)
I'm not due to see the doctor again until the end of the month or so... I think I'm just gonna continue to enjoy life and take some time off from this cancer stuff if I may.
I feel truly blessed :)
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