Keeping Everyone Informed

Sunday, February 22, 2015

I am not really a blogger.  However, one of the recommendations of my providers is to create a blog or something online as a way to let you all know how things are going rather than trying to deal with multiple questions and trying to keep everyone up to date all the time.

I must admit that sounded like a good idea, particularly with my pending hospitalization coming up.

So, welcome to The Latest blog!  Even coming here shows that you are concerned and want to know how I am doing, which I greatly appreciate.

Important and GREAT point to start off with:  My most recent labs showed my M-spike down to 0.2 which is fantastic.  Of course, normal people's M-spike (reading of monoclonal proteins) is 0, nada.  My spike when I began treatment was 1.7 which is lower than many people who have Multiple Myeloma when they are diagnosed (because we caught it early).  LDS Hospital also told me that my in my bone marrow biopsy, they could not see any cancerous plasma cells.  Wahoo!  So, the treatment has been working very well.  Technically, if I got my M-spike down to 0.17, I would have achieved what they call (cancer-talk) a Very Good Partial Response after my induction (more cancer-talk) chemotherapy.  It is not a Complete response, but it is pretty close.  Dr. Hoda at LDS was certain that we would get my M-spike to 0 as a result of the transplant.  But this information is so last week.

Here is the latest:

• On Friday, Feb 20th, I started on daily shots of Neupogen (you can look on  Wikipedia for a detailed description).  The purpose of this drug is to stimulate my bone marrow to produce lots of cells including baby stem cells.  Why, you ask?  Good question!
• Tomorrow, Monday the 23rd, instead of getting my shot down at Utah Valley Regional Medical Center, I will go up to LDS Hospital in SLC to get lab work done and then my shot.  After that is done, they will put in a central line which is essentially a tube that will go into my chest and down to one of the major arteries into my heart (sounds fun -- who wants to sign up?).  The purpose of this is to hook me up to an aphaeresis machine to collect stems cells starting Tuesday and to administer drugs, etc.  We will also leave the central line in for when I am hospitalized.  
• Monday evening, I will get another shot called Mozobil that is designed to make my stem cells less "sticky" and easier for them to leave the marrow and go into the bloodstream.  The chemistry of this and the medical advances here are really amazing, I will say.
• Tuesday, I will get my morning Neupogen at LDS Hospital and then get to sit on the aphaeresis machine while they collect my baby stem cells.  We need 10 million of those!  So, hopefully we'll be done in a couple of days, but it can take longer.  Mozobil again at night; rinse and repeat until we hit the goal.  
• I will be staying in SLC during this procedure with my loving Aunt Or; Uncle Larry has also offered which I greatly appreciate, and I may spend some time at Sandy McGunigall-Smith's home as well.  Thank you very much to each of you for being willing to put up with me while I am getting my stem cells harvested.  And love and kisses (XOXOXO) to my beautiful wife who is my teammate and support on this journey.  We are myeloma's huckleberry!

What does Neupogen do to a person?  Well, your bone marrow goes into overdrive, so bone pain is common as is fatigue, nausea, vomiting, etc.  Claritin is reported to possibly help (as verified by Carine Clark), so I've been taking it, and although I don't feel great and have some bone aches (especially hips, back and BIG headache), I am doing OK.  

What is next?  Once we have harvested 10 million of those little suckers, they need a week to take care of them, clean them up, make sure nothing bad is in them.  That means I am scheduled for admission to the Bone Marrow Team unit on March 9th (Monday).  I'll talk more about that in a future blog or two.  

So, that is the latest!  Feel free to post comments or questions, and I'll do my best to respond.

Note Added 3/7/15:  If you want to follow this blog, I think you have to sign in to your google account, come here and you'll see a "dashboard" link in the upper right corner.  If you click that, I think it will take you to a reading list where you can click on Add and put in the name of this blog and then you will become a follower.  It may let you know when new blogs are posted, but I am not certain of that.....