decisions, decisions...

Geez, so much for sleeping again!  I think I have a little too much on my mind right now. I told you that I’ve been looking up clinical trials as I’m not on anything right now to suppress my virus. I’ve been on all the drugs that are currently available and they have produced resistance. That nasty little virus always has a way of finding a way to mutate.  Well, I thought there were some injectable drug trials that I might qualify for, but after researching and calling, that’s not the case.  The “new” drugs in the pipeline are in the category of drugs that I will never be able to take again, as I have already become permanently resistant to the whole class of drug.

So, I started looking at the clinical trials for people who are experiencing total antiretroviral failure and I found only two. One doesn’t look too bad. Some HIV positive people are what are called “long term non-progressors”.  They have a marker in their white blood cells known as HLA-B-*57 that appears to control the progress of the disease.  Others also have this marker but don’t control it.  So, in this study, the first thing I have to find out is if I carry this marker. If I do, I can go to NIH in Bethesda, MD and undergo apheresis (separation of the individual components of your blood) to obtain stem cells (for later study) and get an infusion of white blood cells from one of these non-progressor folks.  There’s a possibility that I would get up to 3 infusions with 3 months in between each.  First thing in the morning, I’m going to be calling the trial director to see what I have to do to get the blood test to find out if I have the marker.

The other trial is very scary but also very interesting.  I’m sure you’ve heard of “The Berlin Patient” who was completely cured of AIDS.  Even though they call him that, he’s actually from here in the US, he just fell ill while visiting in Germany and got “lucky” in his treatment.  Everyone has been asking me why I can’t get “cured” like him. Well, he had a virulent form of lymphoma that was detected while he was in Germany and it was in the process of getting rid of that illness that they stumbled on actually getting the HIV out of his system.  I can tell you that he remains HIV negative now.  I’ve been on several chat rooms with him and talked with him. He’s a very nice guy but has warned us that it was no picnic to achieve his now good health.

This other trial is through the Fred Hutchinson Cancer Research Center in Seattle and seems to be following the protocol they used on him. This is the title of the trial: “Fludarabine and Total Body Irradiation followed by Donor Stem Cell Transplant & Cyclosporine & Mycophenolate Mofetil in Treating HIV+ Patients with or without Cancer” Okay, let’s take that one word at a time, shall we?  Fludarabine is an antimetabolite chemotherapy drug used in salvage therapy for lymphoma. They say you would get this infusion for 4 continuous days before the irradiation. Total body irradiation is done to completely wipe out your immune system so that you don’t reject the stem cell transplant.  These two components would be the first part of the trial.

The second stage would be the actual stem cell transplant which would happen as soon as they irradiated your body. Then you have to stay close for the engraftment phase, making sure that the transplant “took”.  They do this by monitoring the rise back in your white blood cells.

The third stage would be taking Cyclosporine and the Myco so that your body doesn’t make an immune response to the newly transplanted stem cells that you got from the donor. This protocol needs to be taken for at least 180 days after the stem cell transplant.

If I were to do this, I would be spending at least three months in Seattle for the first two phases and I would be able to return to Buffalo and be monitored by my own doctor in the third phase.

So, you can obviously see why I’m not sleeping right now.  There are some big decisions to be made.  Of course, if I qualify for that first study, that’s a piece of cake.  Somehow, though, with my luck, I’m probably going to end up having to make a decision on being the “Buffalo Patient”. On one hand, it is rather exciting.  I’ve always wanted to be able to help others, that’s why I became an RN in the first place.  I just never thought it would be my own body that was being used for the future of medical science.

On the other hand, it is a very scary proposition to put my already diseased immune system into total failure.  But, putting it here in writing has helped me to digest it a little more myself.  I have several friends who’ve undergone stem cell transplants that were a lot sicker than me (with cancer) and came out just fine.  I’ve sort of come to a point where the alternative is not much better, really.  If I continue to go my merry way without any sort of drugs, I’m headed for disaster when my t-cells get back in that single digit range, anyway.  At least if I’m getting this treatment, I’ll have some of the best minds in the country working on me, right?

Like I said, I’m going to leave it up to Fate/God/the Creator.  I’m going to call NIH tomorrow and get that information and find out first whether I qualify or not for that simpler trial in Bethesda.  That will take awhile, no doubt, getting that marker lab work.  By then, I should be able to research the crap out of this other trial.  I think I’ll look for Mr. Berlin Patient on the boards, too and see if I can pick his brain a bit.

Sorry if this was a bit of a technical post, I tried to explain it as easy as I could and I really needed to write it down, if only for my own sake.  I think more clearly when I see things in front of me!

Speaking of which, it’s going to be another perfect day here! I’m sitting here at almost 4 in the morning and it’s 43 degrees outside.  Now, if you aren’t from around here, you probably don’t think that’s anything to be excited about.  That’s really warm for just about any evening in Wyoming, which is one of the things I love about this place.  It can get super warm during the day, but as soon as that sun goes down, you better have a jacket.  I was just out on the back deck and it was splendid!  I really love crisp evenings and early mornings.  The one thing I really don’t miss about back East is the bloody hot nights.  I’m pretty much always hot anyway, which is why I like living here so much.  Sure saves on the air conditioning, too.  We only run it during the day in the summer here because it cools down so nicely in the evenings.

Well, I have a busy day ahead but for the life of me I can’t remember what all I have planned at the moment.  Right now, I plan on getting a big ole cup of coffee and sitting out on the deck and watching the sunrise, if it ever does now that it’s daylight savings time!  There’s a Great Horned Owl somewhere in the neighborhood, I can hear him hooting right now through the window! I hope you have a fantastic day and you count your blessings.  No matter what’s going on and what decisions we have to make, we’re here and we have the luxury of making them and that’s what counts.

Although every man believes that his decisions and resolutions involve the most multifarious factors, in reality they are mere oscillation between flight and longing.  ~Herman Broch

Once you make a decision, the universe conspires to make it happen.  ~Ralph Waldo Emerson