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Monday, August 26, 2013


I hate squirrels.  They have bedeviled me for years as we have tried to feed the birds around our houses.  We resorted to various squirrel defenses over the years with limited success.  One of the most fun ones was a bird feeder that had a battery-operated spinner that would throw the squirrels off the feeder when they stepped on it.  It was fun to see them tossed 10 feet or so to the ground, but in the end, they would always win.  You see, squirrels are very persistent, and batteries only last so long.  So we got to see the squirrels happily throw them selves around until the battery died and then gorge themselves at will.  Damn!

At our current house, our bird feeder has a lockout which closes the feeder holes if anything heavy such as a squirrel lands on it, so it seem so work fairly well, although the squirrels don't give up.  My new nemeses are the raccoons, which are much more voracious than the squirrels.  They simply pull the feeder up from our deck railing with their paws and empty it in a single night.  So over the last few years, my emnity has been focused on raccoons rather than squirrels.  I won't go into details about how I have battled these perfidious creatures, but to suffice it to say, I have come to some mild accommodation with the squirrels.

Tonight, as I sat on on our Adirondack chair overlooking the Merrimac River at sunset, I noticed a squirrel under my chair.  Our cat, Sophie, was lying nonchalantly nearby just observing the squirrel.  I saw that it was a baby squirrel, and it kept running back and forth under my chair.  After a while, I looked down at it, and it was just looking up at me.  How cute!  What?  I can't believe what I did next.  I actually put my hand down and petted this cute little creature.  What has come over me?  Am I mad?  It scampered off into the woods then, but I was sitting there thinking, what the f*ck, I hate these things, don't I?  Well, now I don't know what I think.  I think perhaps that age has a way of mellowing one into taking a lot of sharp edges off of some of the strong opinions that one once held.  Not completely however.  I still hate raccoons.

We just came back from a wonderful visit with my college friend, Bob, in Seattle.  I'm still feeling really good, although I'm sleeping a lot.  Next Tuesday, I go in to the Farber for my monthly checkup and Zometa infusion.  I'm keeping my fingers crossed that I will still be in remission.  So far, so good.


Monday, August 19, 2013

More Research on MGUS/MM Correlation with Other Diseases

A couple of recent articles have highlighted Lyme disease.  One article appeared on the front page of yesterday's Sunday Globe.  It traces the sad history of one woman who suffered long-term debilitating effects of Lyme disease and was confronted by a medical community which was dismissive and in denial.  Familiar story?  Then today, the CDC announced that the actual incidence of Lyme is about 10 times more prevalent than previously thought.  They now estimate about 300,000 people a year get Lyme.  Of course, the article then goes on to suggest preventive measures to reduce the incidence of tick bites.  That's nice, but what about doing something about the ones who get bit?  No suggestions there.  It makes me want to go into a closet, close the door, and let out an inarticulate scream at the top of my lungs.

My last post generated several responses from MM or MGUS patients who have suffered very similar patterns of previous immune system symptoms that I experienced from my untreated Lyme disease.  It's disturbing to read how dismissive the medical establishment has been of their (and my) plights.  Of course, several anecdotal situations such as these don't constitute evidence that there is a statistical correlation between any of these various autoimmune diseases or infections and myeloma.

I've done a little further online research to uncover any studies that may have addressed this issue.  One of the studies analyzing the association between a number of diseases and MGUS was reported by the respected myeloma specialist, Dr. Vincent Rajkumar of the Mayo Clinic.  The study included a lot of Minnesota MGUS patients.  Here is a YouTube video on this study:  Rajkumar video.  For the most part, his study dismissed most diseases as not being correlated with MGUS.  His conclusion was that any association between certain diseases, such as Rheumatoid Arthritis (RA) and Lupus, was probably incidental.  However, when I accessed the full paper, I noticed that Lyme disease was not one of the specific infections investigated.  This was a little disappointing, especially since Minnesota is one of the hot beds of Lyme disease.

On the other hand, another well-respected myeloma expert, Dr. James Berenson, has a different take on this.  In his short YouTube video, Berenson video, he acknowledges a correlation between the autoimmune disorders RA and Lupus with MGUS.  Jeez, I wish these guys would talk to each other.

The most interesting study that I have come across is a Swedish study that appeared in the journal Blood in December, 2011.  This article concluded that a personal and family history of immune-related conditions increase the risk of plasma cell disorders.  Here is a link to the paper:

In this large population study, they analyzed over 19,000 MM patients and over 5,000 MGUS patients, along with nearly 100,000 control subjects.  They studied the association of a variety immune-related conditions with both MGUS and MM.  They addressed four different categories: 1) personal history of autoimmune disease, 2) family history of autoimmune disease, 3) personal history of infections, and 4) personal history of inflammatory conditions.

For those with personal history of autoimmune disease where the autoantibodies are detectable (such as RA and Lupus), there was significant correlation with  MGUS, but not MM.  (Score one for Berenson!).  For those where the autoantibodies are not detectable (such as hemolytic anemia, polymyalgia rheumatica, and giant cell arteritis), a significantly elevated risk of MM was found.  Interestingly, there was a negative correlation between RA and MM, unlike with MGUS, although the authors noted that other studies have shown either neutral or a positive correlation between RA and MM.

It was found that a family history of autoimmune disease was associated with a significantly increased risk of MGUS, but not MM.

I was particularly interested in the results for those with a personal history of infections.  Overall, infections were associated with a significantly increased risk of both MM and MGUS!  A history of pneumonia, septicemia, herpes zoster (shingles), infectious mononucleosis, sinusitis, meningitis, and myocarditis was associated with a significantly increased risk of MM.  Many more infections were highly associated with MGUS.  One of the highest positive correlations between prior infections and MGUS was Lyme disease!  (Interestingly, and somewhat puzzlingly, they did not observe a strong correlation between Lyme disease and MM.)

In the final category, inflammatory conditions were associated with a significantly increased risk of subsequent MGUS, but not MM.

In the authors' discussion, I found the following passage to be of particular interest:  "...certain infections and inflammatory conditions can trigger the development of MGUS or MM.  Approximately one-half of MGUS patients have clonal plasma cells carrying translocations that involve a locus considered to be of importance for initiation and support of clonal proliferation.   It has previously been proposed that infections could be the trigger event for these translocations and thereby generate clonal proliferation, and our findings support this."  Wow!  Could it be that my t(4;14) translocation was in part triggered by the long-term effect of chronic Lyme disease on my immune system?  It sure seems plausible.

The more I look into this, the more I become convinced that assaults on the immune system from various causes, including chronic Lyme disease, lead to elevated risk of subsequently developing MGUS and/or MM.


Thursday, August 15, 2013

LInk between Lyme and IgA MM?

I've beaten on this poor horse before, but I don't think it's dead yet.  So I'm going to whack away some more.

I just got a comment from someone with MGUS (Monoclonal Gammopathy of Undetermined Significance) who responded to my previous June 10 post about Lyme Disease:  More on Lyme.  This person suffered from Lyme Disease in 2011, which went untreated for months, until the symptoms became significant.  She (I think it is a she, but I'm not sure, since the post response was anonymous) finally got on some serious antibiotics, which brought the symptoms under control.  But then in 2012, she was diagnosed with IgA MGUS.

This is a familiar story.  It's my story, complete with the IgA diagnosis.  She wonders if there is any connection between Lyme and MGUS/MM, particularly the IgA type.  Hello!  In her comment, she makes a rather serious accusation, and I quote, "one of the oncolog i saw said they know amongst themselves that lyme can trigger mgus but since lyme is so politicized and polarized they all keep their mouths shut while people suffer."  Wow!  I really hope this is not the case, but based on my past experience with the medical community on Lyme, it wouldn't surprise me at all.

As you know from reading my past blog posts, I have been fixated on the possible connection between Lyme Disease and myeloma for a long time.  The commenter asked a pertinent question that I have been asking myself for a while:  "I have wondered whether the assault on my immune triggered the IGA MGUS that I have or whether I had the iga mgus first and the lyme made it express itself when attacked."  I have a gut feeling that contracting Lyme Disease suppresses the immune system to the point that any latent monoclonal gammopathy might be unleashed.  My blog commenter theorizes that it might specifically trigger IgA-type gammopathy.  I don't know.  Maybe so.

I have a favor to ask of those reading my blog.  If any of you have contracted MGUS, SMM or MM, I would appreciate it is you could respond either to my blog or directly to me by email ( whether you have ever previously had Lyme Disease or suffered from undiagnosed Lyme Disease type symptoms prior to your diagnosis.  Please include your type of gammopathy (IgG, IgA, etc.).  This is an informal survey, as I'm trying to determine if there is any discernible pattern that would connect Lyme to MGUS, SMM, or MM.   Any anecdotal stories would be of interest.  I would like to compile some information that might possibly shed some light on this issue.

Thank you in advance for your cooperation.  I promise to keep any information you send me strictly confidential.  What happens in Vegas stays in Vegas!

Friday, August 9, 2013

Chemo Brain

For a number of months now, Gretchen has suggested that I am suffering from Chemo Brain.  Well, what does she know?  Pshaw!  Up until now, I have dismissed her suggestions as being somewhat unwarranted.

However, there have been a number of recent incidents that have set me to wondering.  Maybe I do have Chemo Brain.  Chemo Brain is a descriptor covering a broad collection of symptoms of those who have undergone chemotherapy, such as myself.  They usually involve memory loss, difficulty concentrating, difficulty multitasking, being disorganized, etc.

Something happened today that could be a symptom.  We have an electric Sunsetter awning over our deck that protects us from both sun and rain.  It was one of the first things we got when we bought our house about 10 years ago, and it has been a wonderful asset.  We use it almost constantly.  Well, today it stopped working.  Hmmm.  This has happened before, so I was pretty sure about the cause.  Any outdoor outlet must be GFCI protected.  However, the outlet on the deck is not a GFCI outlet, but I was 100% sure that this outlet was coupled with the GFCI outlet in the upstairs bathroom.  I checked that outlet and found it wasn't working properly, as I couldn't test or reset it.  Aha!  So I went to the hardware store and got a new GFCI outlet for the bathroom, confident that this would solve the problem.

I won't go into the details of my installation process.  Needless to say, I decided not to spend a half hour or so trying to run repeatedly from the basement to the second floor to find what circuit breaker the outlet was on, so I decided to do it while it was live.  For the most part it worked fine, although I did get a jolt once (ouch!).  Anyway, I got the new GFCI outlet installed.  Problem solved, right? NOT!

OK, now what?  I scratched my head for a while, checked wiring in the basement, rewired the outlet on the deck, all with no results.  I was crestfallen.  (I want you to take a minute to think about how I must have looked and felt in my crestfallen state.)  I mean it's really important to us that this awning works.  We had to leave the house because a potential buyer was coming to see it.  Just before leaving, I went into the downstairs half bath and noticed that the GFCI outlet that I had recently installed there had been tripped and the light was on.  Could this be the problem?  I reset the outlet and went out to check the awning.  Voila!  It worked!  All's well that ends well, right?

Maybe not.  Now my brain is very confused.  I was absolutely sure that the GFCI outlet controlling the awning was in the upstairs bath.  How could I be so wrong?  This is very disturbing to me.  When one thing that I am absolutely sure of turns out to be wrong, what about all the other things that I think I am sure of?  I think I am sure that I cooked pork chops for dinner last night, but maybe we actually went out and had a pizza.  How am I to really know?  There seems to be a blurring between memory and reality that is hard to fathom.

This is only one instance.  Gretchen has been telling me recently about things she says I have said that I have no memory of saying.  My first impulse is to deny having said whatever it was (unless it was something quite brilliant, which never happens).  But maybe she's right.  Maybe my memory is getting a bit foggy.  Shit!  Maybe I need to record all my conversations to be able to keep the record straight.  That would really suck though.  I don't ever want to have to go there.  A journal maybe?  I don't know.

And another thing.  I usually tend to be rather controlled and am seldom clumsy, unlike Gretchen, who often drops or breaks things.  Until recently, that is.  A few days ago, I knocked an empty glass off our counter and it smashed on the floor.  OK, that's one.  The next day at a restaurant in Newburyport, I knocked over my wine glass, spilling it spectacularly all over myself, the floor, and diners at the next table.  Really cool.  That's two.  Then today, I kicked over another glass and broke it.  That's three.  WTF?  I now consider myself a spastic.  Oh yes, and tonight while weeding in the yard, I lost my balance and fell into a rose bush.  (The scratches are healing just fine, thank you.)  I don't know if that couples in with the Chemo Brain, but those are just more disturbing recent symptoms that don't make me too happy.

As you know from my last post, my medical condition continues to be excellent.  All my test results (except anemia) are great.  However, there appear to be some mental (and perhaps physical) deficiencies that I have to deal with.  With Gretchen's brain damage from her accident, she also has lingering deficiencies to deal with.  Hopefully, we can help each other through these times, and it will all work out for the best for both of us.  Let's hope.

Thursday, August 8, 2013

One Year on Maintenance

My Farber appointment this month was Monday, which marked a full year on this Clinical Trial using maintenance therapy with Revlimid.  The news continues to be positive, as my latest SPEP pathology results continue to show no M-spike or monoclonal gammopathy.  It also shows a dramatic jump into the normal range for my immunoglobulins IgM, IgG and IgA.  I wouldn't be too upset if the IgA slowed down a little bit, since that is the one that went cuckoo and caused my MM.  It's currently at 263, which is OK.  When I was diagnosed with MM, it was over 3,000.  As long as it stays under 400 (normal range), I'll be comforted.

Furthermore some of my other blood test numbers have also shown improvement.  Two big improvements are my white blood cell count (WBC), which jumped to 4.2 (normal range) after hovering around 2.9 for the last year, and my absolute neutrophil count (ANC), which jumped from 1.36 to 2.19, which is in the normal range for the first time in a year!  Woohoo!  Mary and Muriel told me that these results show that I am continuing to show a good recovery from my ASCT.

All of this is really good news.  The only turds in the punch bowl are my RBC, HCT and Hgb readings, which continue to show that I am still anemic.  I don't know when or if that will improve, but I have been told that that is a very slow process, and it might be hindered somewhat by my continued use of Revlimid.  You know what?  If that's the only thing I have to complain about, well shut me up!

Last week I had the pleasure of sailing with my good friend, Lew, for a couple of days out of South Dartmouth, MA.  He has a 35-foot Cape Dory sailboat, and we sailed to Vineyard Haven on Martha's Vineyard the first day.  We had good winds and we passed through Woods Hole without incident.  The weather was perfect!  We had dinner on the water at a nice restaurant, and we slept on the boat comfortably.

The next day we sailed to Cuttyhunk Harbor.   As we have done in the past, we bought some fresh swordfish and grilled it on the boat.  It was delicious.  What a treat!  Afterwards, we enjoyed this view of the sunset.  It doesn't get any better than this!  We got another good night's sleep on the boat before sailing back to home base at Padanaram Harbor.  Wow!  What a great vacation!

I have to thank my lucky stars every day that I can continue to enjoy life's adventures such as this one.  If and when a relapse of my MM happens and I can no longer enjoy doing such things, at least I will have memories such as this to comfort me.