Some Bloodwork This Morning

As I mentioned in a previous blog entry, I had another appointment with my oncologist the other day.  This morning we took a trip up to the hospital to run some tests.

The other day, my oncologist and I discussed my current health, obviously, as well as some new treatments that have very recently been FDA approved for my rare illness.  These are the first two approved treatments specifically for my rare illness.  I spent some time over the past two days researching these treatments and discussing them with Sheila.

First, let me start by saying that I'm fairly confident that my health is not at a point where I think either of these drugs should be necessary.  My oncologist is simply trying to help improve my daily life.  She also wants to ensure that we aren't putting my health on the back burner instead of quickly jumping on treating something that is treatable but could quickly become life-threatening if left untreated.  

One of the newly approved drugs to treat my rare illness is a chemo drug that is more appropriate for patients who have a terrible prognosis and/or are terminal.  There is no doubt that I do feel quite lousy, I have little energy and, as a result, I am accomplishing very little lately but I don't think I am terminal so that chemo drug is more than likely not a route I would need to take at this point.  

As best as I can tell, the other drug is more of an ongoing treatment drug to replace my current treatment plan.  The side effects are bad though and, after seeing what many other patients had to say about it over the past couple of days, I'm not sure I am ready for this route either.  Efficacy, honestly, is only mediocre from what I can tell from my research and the side effects are often so debilitating that the treatment is often stopped (according to patients I have seen in an online support group over the past couple of days).  Of course, if I really do need one of these drugs, I'm open to discussing them in order to keep me around a bit longer.  First we have some tests to get behind me before we would even seriously discuss either of these new treatments.

Worse yet and what may be the final determining factor on whether either of these drugs is an option for me is that each of these drugs costs more than $30,000 for just a 30 day supply.  That really is ridiculous especially for the drug that is a long term treatment drug.  The chemo drug is a bit more expensive but at least that one is only needed to be taken short term.  I have difficulty getting my insurance to cover my everyday drugs so this is a battle I do not want nor do I have much confidence that my insurance would cover enough of either of these drugs to make the price even painfully affordable.  I couldn't possibly swing even a tenth of that ridiculous cost.

So, early this morning, Sheila and I made our way up to Burlington to the University of Vermont Medical Center.  Today's goal was to run some tests to see which direction we should go with further testing as well as figure out the best direction to go with my treatment.  

Some of the test results had been posted to my online medical chart before we even arrived back home which was a pleasant surprise!  My Comprehensive Metabolic Panel is looking good so that is good news.  This is pretty important so that is actually very good news.  

My Complete Blood Count and Differential is not so good.  There are a couple of issues with both my red blood cells and white blood cells.  Considering that my rare illness is about abnormal cell development in the bone marrow, I guess this shouldn't come as much of a surprise.  For now before hearing from my oncologist, however, I'm not sure how far these results need to be into the abnormal range before it is considered a problem that needs to be addressed immediately.  We are still waiting on more test results so I don't expect to hear from my oncologist until we have all the test results.  

One of the most important tests gets sent to the Mayo Clinic for calculating (they are the only ones who have the necessary instrumentation) so that one will take a week or two to come back to us.  What they are looking for is my Tryptase levels which is a fairly direct indication of the state of my illness.  The tests mentioned above are more about my primary illness causing bigger problems and secondary problems.  I believe that we must wait on the test results from the Mayo Clinic before we can continue our discussion about new treatment and an updated prognosis.  

All the test results are necessary to gauge whether I need additional tests, such as another bone marrow biopsy, and to gain a bigger picture on secondary effects that my primary illness is having on my body.  

One concern is that my illness may be worsening now (based on my symptoms and how I have been feeling) and causing bigger problems for some of my organs or even skeletal system.  Well...  we already know I have this problem.  It is just a question of how serious or advanced this problem is now. 

Another concern and a good reason on why we must continually look for bigger problems is that my primary illness is related to a few very serious cancers and leukemias so we need to ensure that things aren't headed in that direction.  That would be abundantly bad news with a very poor prognosis but the sooner we pick up on one of these potential problems, the better the chances of a more acceptable prognosis.  

At this point, I believe we are waiting on only the Mayo Clinic.

Before we left the hospital, we took a quick walk around the hospital.  Sheila popped her head in across the hall to say hi to the receptionist at the Breast Care Center.  We also headed to the other end of the hospital the check out the "Tree of Life" which is a tree made of leaf-shaped brass plaques bearing the names of those who have donated their organs to help others.  One of our far-too-young neighbors passed away a few months ago and his organs were donated so we've been waiting to see his name go up on this wall.  Unfortunately, his name is still not on the wall.  The hospital does have a lot of new artwork though so it was nice taking a quick look at all the art as we walked around the hospital.  

Now it is time to wait for the rest of my test results.  At least the waiting will provide me with a short break from any appointments.