My Current Status

As you start writing a blog the only person reading, by design, is you.  It's not till you've 'told the world' that you realize 'the world' has to start at the bottom and read up!  For those that are finding about my issues a bit late in the game, I've worked to outline a current status here to give you the quick outline.  Then feel free to start at the bottom and work your way up - if you don't, you'll miss some fun waxing and even more fun pictures!

First, my timeline.  I hope this is up to date at the time of your reading but should outline, rather quickly, what I've been through up and till around this point.  This is simply a timeline, for all the juicy details, you must start at the bottom and read up!

Where We Stand Now
6/23/14 Just came from my follow up visit with Dr J today.  I am still in a complete remission.  I'm in such a remission the numbers are now saying my IgG is low!  The MRI showed no issues w/ Myeloma.  So, about a year and a half out of transplant and still no myeloma so I'll have a celebratory drink this weekend!

The Short Story
As a quick recap - I was diagnosed in October of 2008 with having a disease called Multiple Myeloma.  After many tests (blood, urine, skeletal exam) the disease was further identified as being IGA Lambda.  The IGA referring to the quant immunoglobulin in your bloodstream (one of the anitbodies used to help fight off diseases and infections) and Lambda referring to the Free Light Chain.  Had to put a Wikipedia link there as I'd not ever known the real purpose of the FLC.  First and foremost -

I WAS DIAGNOSED VIA AN ANNUAL CHECKUP - A REGULAR, GO TO THE DOCTOR, ANNUAL CHECKUP.  KEY WORDS HERE - GO TO THE DOCTOR!

I shopped around and used the unbelievably powerful internal network of friends, family and my mother and eventually decided upon Dana Farber Cancer Institute in Boston.  As treatment there would be rather difficult and taxing (trips to Boston twice a week) they referred me to a doctor in NYC at St Vincents Cancer Care Center.  The important thing to note, I am lucky to have two of the most recognized doctors in this business watching over me.  DFCI makes the calls and SVCCC runs the plays.  With the closing of St Vincent's Hospital, the SVCCC needed a hospital affiliation and ended up being purchased by Beth Israel.  The doctors in the MM clinic have since moved to Mt Sinai, heading up the MM program there with a much larger potential due to research and grants.  But enough news stories, on to me.

Short story, I was diagnosed with what was referred to as 'smoldering' MM.  I had the disease but it had not yet done any damage to my body (it was there, smoldering, but hadn't really caught fire).  My first bone marrow biopsy (a core driller in the back of your pelvis) recorded a 20-40% plasma cell penetration.  The disease, in short, takes over the bone marrow.  The antibodies being plasma cells take over and prevent the red blood cell factory from producing.  When full penetration takes place, the disease starts working at the bones themselves causing lytic lesions similar to a termite and a piece of wood (looks fine outside but is sawdust inside).  This eating of the bone causes increased calcium levels.  This increase in the plasma cells causes an abnormal protein level, when it starts becoming too much it's released into the bloodstream and can cause issues with renal glands.  With one immunoglobulin going rogue, the other two (IGG and IGM) have no room at the inn - so your disease fighters for simple cuts on your skin or to prevent sinus infections, are gone.  So you can imagine where so many things can go wrong.

Now first, this disease is usually identified in people that are 65-75 years old.  I know with the doctor's I'm seeing I see more people getting the disease at my age but in truth, the average is much higher (I was diagnosed at 44).   Once I had determined the doctors involved, it was determined that, as I was smoldering, I could participate in a research study (FDA approval) for a product called TBL12 - a mix of Sea Cucumber, Sea Sponge, Sea Urchin, Shark Fin and some type of pacific plant life, all blended together in a pleasing gelatin product, about twice the size of those butter packets you get at the really old diners!  After 6 months, my numbers started to spike and I stopped the study in prep for true Chemo.  After my third bone marrow biopsy, I was identified at having an approximate 80% plasma cell penetration.

I began chemo at the end of October 2009 (about one year from diagnosis).  My treatment involved a cocktail of Revlimid, Velcade and Dexamethazone (RVD).  Revlimid is derived from Thalidomide, the drug they used to give pregnant woman for morning sickness that caused so many deformities.  For that reason, I have strict rules on getting my prescription which include but are not limited to calling a CVS pharmacist each month and talking to Celgene regarding my sexual activity (and use of a condom).  DFCI was one of the developers of the RVD cocktail and identifying its effect on MM.  Velcade is also known to cause peripheral neuropathy, more on that later.  Bottom line, after two cycles my numbers dropped and I was in a near-complete remission.  I finished the four cycles by January of 2010 and immediately harvested my stem cells in the event I would need a transplant sometime in the future.   That was completed in February 2010.

My reactions to the chemo, unlike what most people know from The Bucket List or other similar movies, were relatively small.  I have a reaction to the Rev by the fourth day of the cycle, my head will itch, my ears will become inflamed/swollen, my head will get red and I will have red spots in my eye sockets.  At the start of my maintenance chemo I had the worst effect with my eyes getting severely swollen and, being bald, my head looking like something out of Frankenstein.  Now - as to being bald, the RVD had no effect.  However, in prep for the harvest, I had to take a drug called Cytoxan.  This drug did have a side effect of hair loss among other things.  Unfortunately, they told me I'd see these effects within 8-12 days.  By day 15 I was finished with the harvest and heading home happy that I won't have to be bald.  It was about two days later when I first noticed and on that Monday (president's day here in the States) it came out in droves.  Thinking bald was better than really bad Bozo, I clipped the hair and went bald.  It started to grow back in late May 2010 and I'm still debating on my new style!

In March I started chemical maintenance, taking Rev/Dex, 21 days on, 7 days off.  I have a visit every month to confirm my numbers and all still looks well.  As I mentioned above, one of the issues I have been facing is peripheral neuropathy or damage to the nerve endings.  The PN is specifically related to hands and feet (extremeties).  As this took a bit of time to notice and diagnose, we delved deeper into the 'why'.  First, I had noticed, at the end of each cycle, that my hands would get really 'hot', almost turning red.  Now this had never been diagnosed as PN before as I had none of the other issues and it didn't seem to be affecting my feet as much.  Later, during the harvest, my feet were killing me and we started thinking PN.  DFCI finally prescribed Lyrica which helped (more than I thought) but didn't get rid of the pain.  Later we tested the fatty cells of my body for something called Amyloid Deposits (occurring in 10% of MM patients).  I was one of the 10% which explains the delayed and continuous issues with PN.  I started taking Nortriptylene in addition to the Lyrica along with some other adventures in pain killing, none of which really worked.  As of end of April/early May, the pain has subsided but I still feel a numbness and am working to see what we can do to fight this.

As I can't remember when the above was written (and for posterity, will note that today is 17 June 2013) I can't tell you which end of April/early May it was but I'm guessing 2010.  Wow - lots has happened since then.  I was on the Revlimid maintenance mentioned above till December of 2012.  I believe it was exactly 36 cycles.  In August of 2012 we made the decision to schedule the stem cell transplant (SCT).  I went in on 28 January 2013 and left the hospital on 10 February 2013.  Details are in my blog but as of May 2013 my bone marrow biopsy showed me as clear - a normal human being.

For now, this is enough.  I'll post a quick update at the top of this page as things progress but wanted to have the basic story somewhere for everyone to get up to speed prior to venturing into the blog itself.  Again, if I can say anything, it's go to the doctor and get that checkup.  Don't worry about the rubber glove, deal with it and make sure everything else is working fine!

Cheers and thanks for reading!