So, went to get my blood checked again yesterday and my platelets inched up to 45K (from 37K). If I was still on the SAHA trial, I'd be booted off by now. However, I guess they just changed the rules for this RAD001 trial and apparently I can go all the way down to 25K. Of course, I don't want this to happen. I already deal with chronic nose bleeds and have bruises all over my body. That said, with the alternative being no treatment and my back pain returning, I'll just roll with this the best I can. So, I started the therapy back up again last night and due to go in for another poke on Monday. I'm going to start looking like a junkie if I have to keep this up, my arms are getting pretty bruised, kinda embarrassing...
Anyway, beyond all of that, life is pretty good at the moment. I think spring is finally here and my place is slowly coming together.
That's all I have for now, thanks for the positive thoughts :)
Chris
Tuesday, May 24, 2011
Friday, May 20, 2011
Not quite RAD...
I just remembered when I lived in Socal how people used to say Rad all the time. "That's pretty Rad dude"... I think it's the only place I've ever lived where people say Rad, funny.
Anyway, I wish this was a rosy post but unfortunately, I had to stop the Everolimus or RAD001 on Wednesday temporarily (hopefully). Turns out, my platelets went all the way down to 37K. While I've been lower (of course, I had a stem cell transplant and all my counts were once zero), I don't remember it being this low for a while. This considering that only a couple weeks ago my platelets were at 104K. So, while I definitely think the drug is doing something to the disease, it's also wreaking havoc on my counts like we feared. So, the plan is to take 5 days off, go in Monday, have my blood checked again and see how fast they (counts) go back up on their own.
I just hope to God my body somehow can adjust to this and my counts will stabilize. If not, there's always a chance maybe they can reduce my dose but Dr. Ram didn't seem too enthusiastic about this. I guess we'll see what happens Monday.
Anybody care to join me on the roller coaster?!
Chris
Anyway, I wish this was a rosy post but unfortunately, I had to stop the Everolimus or RAD001 on Wednesday temporarily (hopefully). Turns out, my platelets went all the way down to 37K. While I've been lower (of course, I had a stem cell transplant and all my counts were once zero), I don't remember it being this low for a while. This considering that only a couple weeks ago my platelets were at 104K. So, while I definitely think the drug is doing something to the disease, it's also wreaking havoc on my counts like we feared. So, the plan is to take 5 days off, go in Monday, have my blood checked again and see how fast they (counts) go back up on their own.
I just hope to God my body somehow can adjust to this and my counts will stabilize. If not, there's always a chance maybe they can reduce my dose but Dr. Ram didn't seem too enthusiastic about this. I guess we'll see what happens Monday.
Anybody care to join me on the roller coaster?!
Chris
Tuesday, May 17, 2011
Through the fire
Whew, made it out of that alive, thank God. That was a pretty nasty whatever it was and glad it's gone. All I have to deal with now is the mouth/throat sores and an ever increasing itchy rash that seems to move around my body. It's been especially bad on the backs of my legs and calves. I don't think it's the Hodgkins itch though, more of a surface itch.
So, I'm back here in gloomy Michigan! This spring apparently has sucked so far just like the winter. Even though I was sick, glad I had a chance to get a few days of sun down in Delray :) I'm hopeful that by this weekend the weather will get nicer, seems to help everything up here... One nice thing is I've had some bare patches in my lawn that I've put grass seed down and it seems to be taking because of the rainy damp weather! My neighbor was joking that we're going to have "yard wars" now that there are four of us who are either unemployed or work from the house. I really dig gardening (no pun intended, haha) for the aesthetic aspect of it plus it's very relaxing to boot. I have years to catch up on these guys tho as this house had been a rental for years and nothing had been done as far as raking leaves (thus the bald spots) or weed control. I went over with a layer of weed and feed and the dandelions just laughed at me! In fact, I think it caused them to grow even more. Had to go buy some heavier duty stuff and we'll see who's laughing after they get a dose of ACE hardware's finest, ha!
I'm really liking my projects although at the same time can be a major source of stress. I realize it's a process but sometimes it gets difficult living in chaos (as if my life isn't chaotic enough). Yesterday, I was hanging greenboard in my new to be remodeled bathroom and the most dubious luck you could have, drilled a drywall screw dead center right through my hot water feed pipe. I knew something was wrong after the screw was halfway in and I heard a sound that best resembles the first turn of the cap on a bottle of pop/soda. I wasn't exactly sure what it was and decided to back the screw out and the next thing I know, there's hot water shooting across my bathroom all the way into my bedroom! I tried for a second to put something over it but then quickly realized I needed to get to the basement to shut of the water supply. By then, the damage had been done and because it's an upstairs bedroom, the water came through the ceiling into the kitchen, yikes. I forgot how fun this stuff is ;)
So I'm off to the hardware store to look for a coupler to fix the hole in the pipe then will get back to putting the bathroom together.
Hopefully everything else will start falling into place after that.
Speaking of falling into place, one nice thing is I think this RAD001 is doing something good! My back is so much better, can't even tell you... There are still moments when I get a twinge if I twist the wrong way but I'm so much stronger back there. It was to the point before that it even hurt to inhale or sneeze/cough. This is such a blessing and I couldn't be more thankful. Now, if only I can keep my platelets up high enough to continue... Dr. Ram was pretty concerned last time I was there regarding this and even mentioned I may have to skip a dose if they dip below 75K. Turns out last time, I was 75K right on the button. I told him that I'd been taking 500 mg of Naproxen/Aleve (this is known to lower platelets) so I haven't taken any all week hoping it makes a difference.
Guess I'll find out tomorrow...
Hope everyone has a great week!
So, I'm back here in gloomy Michigan! This spring apparently has sucked so far just like the winter. Even though I was sick, glad I had a chance to get a few days of sun down in Delray :) I'm hopeful that by this weekend the weather will get nicer, seems to help everything up here... One nice thing is I've had some bare patches in my lawn that I've put grass seed down and it seems to be taking because of the rainy damp weather! My neighbor was joking that we're going to have "yard wars" now that there are four of us who are either unemployed or work from the house. I really dig gardening (no pun intended, haha) for the aesthetic aspect of it plus it's very relaxing to boot. I have years to catch up on these guys tho as this house had been a rental for years and nothing had been done as far as raking leaves (thus the bald spots) or weed control. I went over with a layer of weed and feed and the dandelions just laughed at me! In fact, I think it caused them to grow even more. Had to go buy some heavier duty stuff and we'll see who's laughing after they get a dose of ACE hardware's finest, ha!
I'm really liking my projects although at the same time can be a major source of stress. I realize it's a process but sometimes it gets difficult living in chaos (as if my life isn't chaotic enough). Yesterday, I was hanging greenboard in my new to be remodeled bathroom and the most dubious luck you could have, drilled a drywall screw dead center right through my hot water feed pipe. I knew something was wrong after the screw was halfway in and I heard a sound that best resembles the first turn of the cap on a bottle of pop/soda. I wasn't exactly sure what it was and decided to back the screw out and the next thing I know, there's hot water shooting across my bathroom all the way into my bedroom! I tried for a second to put something over it but then quickly realized I needed to get to the basement to shut of the water supply. By then, the damage had been done and because it's an upstairs bedroom, the water came through the ceiling into the kitchen, yikes. I forgot how fun this stuff is ;)
So I'm off to the hardware store to look for a coupler to fix the hole in the pipe then will get back to putting the bathroom together.
Hopefully everything else will start falling into place after that.
Speaking of falling into place, one nice thing is I think this RAD001 is doing something good! My back is so much better, can't even tell you... There are still moments when I get a twinge if I twist the wrong way but I'm so much stronger back there. It was to the point before that it even hurt to inhale or sneeze/cough. This is such a blessing and I couldn't be more thankful. Now, if only I can keep my platelets up high enough to continue... Dr. Ram was pretty concerned last time I was there regarding this and even mentioned I may have to skip a dose if they dip below 75K. Turns out last time, I was 75K right on the button. I told him that I'd been taking 500 mg of Naproxen/Aleve (this is known to lower platelets) so I haven't taken any all week hoping it makes a difference.
Guess I'll find out tomorrow...
Hope everyone has a great week!
Wednesday, May 11, 2011
Spoke too soon...
Just when I get all pumped up about feeling good, the RAD001 decides to sneak up on me and wreak havoc. My body must be adjusting to the medicine as I have the chills, bad headache, mouth and throat soreness, body aches and woozy head. Kinda feels like a really bad flu. Hopefully it won't last long and I can get to enjoying Soflo...
Just wanted to send out some prayers for someone who I've never met but have followed his story ever since I was diagnosed. His name is Andy Keeley and unfortunately, Andy is having a tough time right now. He's been fighting Hodgkins it seems like forever and it's spread to his lungs badly and him and Kimberly his wife have decided to call in Hospice. This is really sad and never easy to stomach. All my best to the Keeley's. I hope you find comfort.
Hoping for a better day tomorrow.
Life is such a roller coaster...
Just wanted to send out some prayers for someone who I've never met but have followed his story ever since I was diagnosed. His name is Andy Keeley and unfortunately, Andy is having a tough time right now. He's been fighting Hodgkins it seems like forever and it's spread to his lungs badly and him and Kimberly his wife have decided to call in Hospice. This is really sad and never easy to stomach. All my best to the Keeley's. I hope you find comfort.
Hoping for a better day tomorrow.
Life is such a roller coaster...
Monday, May 9, 2011
Feeling more at ease...
It's amazing how much more at ease and less stressed out I am in the period of less than a week...
I started the Everolimus last Wednesday and after some initial bumps (mainly GI and fatigue stuff which is nothing) I really don't even notice I'm taking a drug. In fact, dare I say that I'm already starting to feel positive effects from the RAD as my back pain has been easily cut in half, yeehaww! I also notice how much more relaxed I am. I have to say, that moment (and during) when I found out the SAHA was going bye bye was one of the more stressful anxiety ridden times of my life besides the initial diagnosis and major treatment era. That actually has to stand alone as nothing will ever compare to that.
Anyway, I have renewed peace of mind and an even better outlook on life now that I've gone through all my awful stuff. I'm feeling better, my place is coming together (I've got the following going in the last week, a stand up shower, my stove, washer and dryer and all the crap and debris in my yard cleaned up. It's starting to feel more like a home now rather than a bomb shelter.
It's more like a scene out of a Dexter episode but at least I can take a shower standing up! Another couple of weeks and I'll post the after picture, it should be sharp I hope...
So, it's off to Karmanos now for blood work. I'm leaving to go back down to Florida Wednesday to grab some stuff like my car, bike, tools, etc. and driving back up once again (this time solo, no Chili).
Speaking of Chili, she's all of the sudden decided she likes sleeping on the bed rather than under! She's been my rock, haha.
Hoping this upward trend continues. Actually, more than hoping, I expect this upward trend to continue! Part of my new attitude...
Hope all is well with everyone who reads this.
BTW, happy belated Mothers Day to all you Mom's out there and to my very special Mother Cindy. Mom, as I told you yesterday, thank you for being there for me and for all the unconditional love you give me every day. I don't know what I'd do without you. Love you very much...
Cheers!
Chris
I started the Everolimus last Wednesday and after some initial bumps (mainly GI and fatigue stuff which is nothing) I really don't even notice I'm taking a drug. In fact, dare I say that I'm already starting to feel positive effects from the RAD as my back pain has been easily cut in half, yeehaww! I also notice how much more relaxed I am. I have to say, that moment (and during) when I found out the SAHA was going bye bye was one of the more stressful anxiety ridden times of my life besides the initial diagnosis and major treatment era. That actually has to stand alone as nothing will ever compare to that.
Anyway, I have renewed peace of mind and an even better outlook on life now that I've gone through all my awful stuff. I'm feeling better, my place is coming together (I've got the following going in the last week, a stand up shower, my stove, washer and dryer and all the crap and debris in my yard cleaned up. It's starting to feel more like a home now rather than a bomb shelter.
It's more like a scene out of a Dexter episode but at least I can take a shower standing up! Another couple of weeks and I'll post the after picture, it should be sharp I hope...
So, it's off to Karmanos now for blood work. I'm leaving to go back down to Florida Wednesday to grab some stuff like my car, bike, tools, etc. and driving back up once again (this time solo, no Chili).
Speaking of Chili, she's all of the sudden decided she likes sleeping on the bed rather than under! She's been my rock, haha.
Hoping this upward trend continues. Actually, more than hoping, I expect this upward trend to continue! Part of my new attitude...
Hope all is well with everyone who reads this.
BTW, happy belated Mothers Day to all you Mom's out there and to my very special Mother Cindy. Mom, as I told you yesterday, thank you for being there for me and for all the unconditional love you give me every day. I don't know what I'd do without you. Love you very much...
Cheers!
Chris
Tuesday, May 3, 2011
Osseus Erosion
Well, I started the trial today and so far, no problems. It's just two little pills everyday and that's it. I sure hope these two little pills start doing something fast as I just received the official scan report today and it's not looking good for my back. Turns out, my T-9 through T-11 vertebrae are all eroding from the disease again. Not to mention, I have another new hot spot in that area which means that the Hodgkins is declaring all out war on the Thoracic area of my spine. It's not like the constant aching I used to have (which in a way is a good thing) although now when I make a wrong move, it (the pain) completely knocks the wind out of me (for instance, trying to sit up from a cushy couch or get up out of bed).
While I'm hopeful the Everolimus is going to stop this in it's tracks, it seems like I'm going to be really limited in what I can do now physically (again) and it bums me out to be honest. I just have to come up with some new summer hobbies and know I'll adjust...
Just in case anyone was wondering how the drug works, here's a brief summary:
"There was sound rationale to test the mTOR inhibitors in lymphoma," said principal investigator Thomas Witzig, MD, from the Mayo Clinic in Rochester, Minnesota. He explained to Medscape Oncology that mTOR kinase is a key regulator of the PI3K signal transduction pathway, which is important to the growth and survival of cancer cells.
RAD001 or Everolimus is an mTOR inhibitor.
I've also initiated the process of getting into a trial being conducted in Houston where they take my blood (if they can find EBV virus which supposedly 95% of the human population present) and grow killer T cells that are targeted to find Hodgkins cells. They do this by being attached to an antibody, CD30 which most Hodgkins cells contain. I think this trial is especially cool as it's using your bodies' natural defense mechanism (T cells) to kill off the disease, not toxic chemicals like chemo. The problem they've had in the past is the programmed T cells dying quickly floating freely in the blood. Now that Dr. Heslop is experimenting with attaching these T cells to the CD30 antibody, it takes the T cells directly to the cancer and in theory extending their life span. This is at least the way I understand it, I could be off but think I have the right concept. Needless to say, pretty cool stuff.
Apparently all of these new studies are sprouting up from the Human Genome project that was started in 1989 and finished in 2003. It was a collaborative worldwide effort between scientists and is already giving doctors and scientists like Dr. Bollard and Dr. Heslop the opportunity to experiment with these novel ideas how to fight cancer besides the old way of slashing and burning with chemo.
I'm glad (dubiously) to be part of history and hope that while contributing to science, I can get some relief over here!
I'm out for now, good night.
Chris
While I'm hopeful the Everolimus is going to stop this in it's tracks, it seems like I'm going to be really limited in what I can do now physically (again) and it bums me out to be honest. I just have to come up with some new summer hobbies and know I'll adjust...
Just in case anyone was wondering how the drug works, here's a brief summary:
"There was sound rationale to test the mTOR inhibitors in lymphoma," said principal investigator Thomas Witzig, MD, from the Mayo Clinic in Rochester, Minnesota. He explained to Medscape Oncology that mTOR kinase is a key regulator of the PI3K signal transduction pathway, which is important to the growth and survival of cancer cells.
RAD001 or Everolimus is an mTOR inhibitor.
I've also initiated the process of getting into a trial being conducted in Houston where they take my blood (if they can find EBV virus which supposedly 95% of the human population present) and grow killer T cells that are targeted to find Hodgkins cells. They do this by being attached to an antibody, CD30 which most Hodgkins cells contain. I think this trial is especially cool as it's using your bodies' natural defense mechanism (T cells) to kill off the disease, not toxic chemicals like chemo. The problem they've had in the past is the programmed T cells dying quickly floating freely in the blood. Now that Dr. Heslop is experimenting with attaching these T cells to the CD30 antibody, it takes the T cells directly to the cancer and in theory extending their life span. This is at least the way I understand it, I could be off but think I have the right concept. Needless to say, pretty cool stuff.
Apparently all of these new studies are sprouting up from the Human Genome project that was started in 1989 and finished in 2003. It was a collaborative worldwide effort between scientists and is already giving doctors and scientists like Dr. Bollard and Dr. Heslop the opportunity to experiment with these novel ideas how to fight cancer besides the old way of slashing and burning with chemo.
I'm glad (dubiously) to be part of history and hope that while contributing to science, I can get some relief over here!
I'm out for now, good night.
Chris
Monday, May 2, 2011
Tommorow is the big day...
So, I go in tomorrow at noon to see Dr. Ram and hopefully receive my Everolimus pills. I'm really looking forward to starting this (while also scared out of my wits). I'm looking forward to something to quell the ever increasing pain in my back. I'm having a hard time even pulling a rake in the backyard. It's weird too as the pain has switched from the right side to now on my left side. It's almost like when I engage that particular muscle, it pushes on the lesion which must be pushing on a nerve. I have difficulty in getting out of chairs, bed, just up in general. Like I also said, I'm petrified of what side effects I might develop with some of the worst being severe lung toxicity. There's also the possibility of nasty rashes (which as long as not on my face, can probably handle) and of course, GI issues. I guess I'll know more by this time next week as the drug has a chance to get into my system.
Just wanted to touch on some history with the killing of the murderer Bin Laden, what a surreal moment it was to click on the tv last night and see that news. Just goes to show how important it is to focus on diplomacy and not just stiff arm tactics like the last administration used. The only way we are going to defeat these psycho's is if we can get the rest of the world to help and how they got Bin Laden is a great example of this. I was pretty proud of the president last night, something I haven't been able to say in a while...
Well, that's all I have for now. Just wanted to send some prayers and good vibes to Rich, my stepfather who received preliminary news the other day that he probably needs a heart transplant. I think I'm having a hard time accepting the news and I need to investigate the whole matter further. I know they've come a long way with this and just going to hold out hope that something can be done for one of the greatest guys you'll ever meet. Rich is one of the nicest, most generous, caring people that I've ever met and not sure what our family would do if anything happened. So, if you're reading this Rich, please don't give in/up and know that there's a solution out there, we just need to find it.
Peace in the Middle East :)
Chris
Just wanted to touch on some history with the killing of the murderer Bin Laden, what a surreal moment it was to click on the tv last night and see that news. Just goes to show how important it is to focus on diplomacy and not just stiff arm tactics like the last administration used. The only way we are going to defeat these psycho's is if we can get the rest of the world to help and how they got Bin Laden is a great example of this. I was pretty proud of the president last night, something I haven't been able to say in a while...
Well, that's all I have for now. Just wanted to send some prayers and good vibes to Rich, my stepfather who received preliminary news the other day that he probably needs a heart transplant. I think I'm having a hard time accepting the news and I need to investigate the whole matter further. I know they've come a long way with this and just going to hold out hope that something can be done for one of the greatest guys you'll ever meet. Rich is one of the nicest, most generous, caring people that I've ever met and not sure what our family would do if anything happened. So, if you're reading this Rich, please don't give in/up and know that there's a solution out there, we just need to find it.
Peace in the Middle East :)
Chris
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