It was fun while it lasted!

A week ago I visited Dr. Kipps for my 3 month follow-up.  Since I go down every month for my IVIG Infusion, he had 3 months worth of data to look at.  Unfortunately it looks like I am coming out of remission.  My blood numbers are definitely trending upwards, and he is starting to see my lymph nodes increase in size.  So it looks like I will have to begin some sort of treatment before the end of the year.  End of short report.

This is not totally unexpected.  Because I had all the blood tests, I could see where this was going.  I could also feel the nodes increasing in size.  I always knew it was going to be a matter of not if, but WHEN.  I am a little disappointed that the last Clinical Trial that I was on did not give me a longer remission.  From the time I stopped the Clinical Trial, I got about 20 months of remission.
He wants to see me as soon as we get back from Hawaii, and begin the process of bone marrow biopsies, genetic testing, etc.  After he gets the results of that back, we will sort out all of the trials that make sense and don’t make sense.  Why am I looking at trials again?  Isn’t there anything else that is a non-trial treatment?  The answer is maybe, but probably not.  I have already had 2 different treatments (one twice) and the results have been the same, no long term remission.  I have poor genetic markers, which limits the effectiveness of some of the ‘approved’ treatments.  I have had autoimmune issues with my AIHA.  In 50% of the cases, the AIHA comes back in patients, and is almost guaranteed to return if you use the wrong treatment.  So this limits my choices, and a trial is maybe my best shot.

I feel that the only way we are going to make real headway on curing or stabilizing this disease is to have people enter into trials.  Remember, you can’t get trials just anywhere.  They are usually provided only at teaching and research hospitals, like UCSD, Ohio State, MD Anderson, Mayo, Sloan Kettering and Fred Hutchison.  So you can’t go to your local hematologist and say ‘give me trial 123’.  You can’t even get the same trial at two different hospitals.  They are tightly controlled by the drug companies and the FDA.  Now there is a match made in heaven.  The trial I was on before had less than 50 people in the WORLD enrolled.  One of the most promising ones (that I am looking at) has only 400 people that have taken this drug, and it has been out of the lab for less than 3 years. There are a lot of accusations about the teaching hospitals using people as Lab Rats.  I don’t feel that way.  This is MY choice.  I can do it or not.

Dr. Kipps gave me 4 informational packets on trials that MIGHT be appropriate for me.  We will then have to wait until after the tests to see where I really am.  THEN, I have to be ACCEPTED by the drug company.  This sounds like I am applying for college, or a job.  I won’t get into the details of these trials right now because none of them might pan out and we might have to go to plan B, whatever that is.

I am not as anxious as I was before the last trial.  In general, I know what to expect (although every treatment has its own personality).  I know there will be a lot of paperwork, a lot of tests and drugs. Once again I am trusting Dr. Kipps and God to lead me in the correct direction.  

Life goes on.  Our youngest son Matt and his wife Randi have announced they are expecting.  My oldest son Jeff has announced he is engaged to his long time girl friend Kristen.  Wyatt continues to be a great baby and Aimee and Bryan are great parents.  Sarah is now a licensed CNA and is continuing her education in Acute Care.  My golf index is at its lowest since I began playing (that’s a good thing for you non-golfers).  So for now, I’m not going to worry about any of this, and Donna and I are going to relax in Hawaii.  ALOHA.

Terry