Friday, June 3, 2011

Thank You Steroids and Have a Nice Day...

The ramifications from being treated after having cancer just keep getting more complicated.  This week, a number of things happened, leading up to more drug changes.  For those who don't know or are just tuning in, I'm still battling issues with GVHD.  (Graft vs Host Disease.)  My skin is still very tight, and discolored.  The muscles throughout my body still lack normal flexibility, and my breathing is far from normal.  All these symptoms are being kept at bay by the use of Prednisone.  (Steroid.)  Prolonged use of this drug has proven the reason why long term use is bad.  In addition to finding out I have a cataract on one of my eyes, I found out this week that I have Osteoporosis, as a result of long term use of the steroid.  I'll get back to that in a minute.  

I met with my Oncologist in Chicago this past week and as a group, we decided that Gleevec might have been helping a little with my GVHD symptoms,  but it's definitely not helping enough.  We decided to stop the Gleevec and try a new drug called Sirolimus.  Apparently it's a pill similar to Prograf, in that it's a immune suppressive drug that may help 'calm down' my problems with GVHD.  Trying out Sirolimus is for right now, a better solution for the short term to see if it makes a big enough difference in the next few months.  If this doesn't work, or help enough, we'll most likely have to resort to a program called ECP.  I am to remain on the steroid dose for now.

ECP is a treatment of the blood where they basically draw a certain amount of blood, filter out the bad cells in it and then transfuse the blood back into my body.  This process would have to be done in Chicago, 2-3 times per week at 6 hours per session.  To put it lightly, I'm not interested in doing in that, and will consider it a last resort.  Especially, since I haven't heard of anyone who has had success with doing that.

I'll be starting a new drug soon for the Osteoporosis, and I'll find out what that drug is today with my local doctor.  The goal with that is to prevent it from getting worse than it already is.  

I'm frustrated with all this.  And I'll tell you why.  It just seems like we're throwing ideas around in a hat, tossing them up in the air and picking out one that looks good.  This is not the Goblet of Fire.  The very drugs I keep using for treatment, are the same ones that are making matters worse.  I guess I'm having trouble seeing the 'greater good' through all this.  I can honestly say I've never heard of anyone dying from GVHD.  It's just a big annoyance.  I have to believe that things will normalize in time.  The goal is get off all the drugs, not add more that are just going to cause more problems.  But I'm going to do what I'll always do and listen to my doctors, even when I don't like it.  

More coming soon.  

Friday, June 3, 2011

Thank You Steroids and Have a Nice Day...

The ramifications from being treated after having cancer just keep getting more complicated.  This week, a number of things happened, leading up to more drug changes.  For those who don't know or are just tuning in, I'm still battling issues with GVHD.  (Graft vs Host Disease.)  My skin is still very tight, and discolored.  The muscles throughout my body still lack normal flexibility, and my breathing is far from normal.  All these symptoms are being kept at bay by the use of Prednisone.  (Steroid.)  Prolonged use of this drug has proven the reason why long term use is bad.  In addition to finding out I have a cataract on one of my eyes, I found out this week that I have Osteoporosis, as a result of long term use of the steroid.  I'll get back to that in a minute.  

I met with my Oncologist in Chicago this past week and as a group, we decided that Gleevec might have been helping a little with my GVHD symptoms,  but it's definitely not helping enough.  We decided to stop the Gleevec and try a new drug called Sirolimus.  Apparently it's a pill similar to Prograf, in that it's a immune suppressive drug that may help 'calm down' my problems with GVHD.  Trying out Sirolimus is for right now, a better solution for the short term to see if it makes a big enough difference in the next few months.  If this doesn't work, or help enough, we'll most likely have to resort to a program called ECP.  I am to remain on the steroid dose for now.

ECP is a treatment of the blood where they basically draw a certain amount of blood, filter out the bad cells in it and then transfuse the blood back into my body.  This process would have to be done in Chicago, 2-3 times per week at 6 hours per session.  To put it lightly, I'm not interested in doing in that, and will consider it a last resort.  Especially, since I haven't heard of anyone who has had success with doing that.

I'll be starting a new drug soon for the Osteoporosis, and I'll find out what that drug is today with my local doctor.  The goal with that is to prevent it from getting worse than it already is.  

I'm frustrated with all this.  And I'll tell you why.  It just seems like we're throwing ideas around in a hat, tossing them up in the air and picking out one that looks good.  This is not the Goblet of Fire.  The very drugs I keep using for treatment, are the same ones that are making matters worse.  I guess I'm having trouble seeing the 'greater good' through all this.  I can honestly say I've never heard of anyone dying from GVHD.  It's just a big annoyance.  I have to believe that things will normalize in time.  The goal is get off all the drugs, not add more that are just going to cause more problems.  But I'm going to do what I'll always do and listen to my doctors, even when I don't like it.  

More coming soon.