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Monday, January 26, 2015

Blizzard

It's Monday night, and we're hunkered down for the expected Blizzard of 2015.  As a survivor of the infamous Blizzard of '78, there's nothing in my mind that could compare to that classic.  That being said, I have to admit to being a bit nervous about the next 24-48 hours.  We have a backup generator, which has saved our asses in the past during the power outages that accompany most major storms here, but today I had trouble getting it started.  I got the ancient thing going twice for a short time before it just quit on me.  I tried again later with no success.  Now I have to cross my fingers and hope we don't lose power (unlikely), or I find a way to somehow rejuvenate this venerable piece of equipment back to life.  So tonight is an exciting time.  We have a fire going in the fireplace, which we will try to keep going through this storm.  We've stocked in food (and wine, of course) for the next couple of days, and if we still have power, I've planned a nice chicken dish for tomorrow.  If not, well, maybe some canned soup heated over our gas stove will suffice while we shiver in our coats.

We do have a last resort.  If we have no heat and our new house doesn't lose power, we could always go over there and sleep on the floor, since we have no furniture.  That doesn't sound real appealing.  That's way down on my list of options for now.  I think I'd almost rather find a homeless shelter with a bed.

I went back to the Farber last Wednesday for my monthly checkup.  Everything was still great, except I had come down with a cold, so they stopped my Revlimid for a week.  I got a prescription for a 5-day azythromycin antibiotic pack, which I started on Thursday.  I felt shitty for a couple of days, but fortunately, I have recovered and feel much better now.  The bad news is that I gave my cold to Gretchen, and now she is suffering.  If the weather permits, I will go back to the Farber on Wednesday and resume my normal schedule of Rev.

This has been a crazy time with the impending move.  We keep boxing up things to move and filling trash bags with things to throw out.  We also donated a ton of things to Big Brother Big Sister last week.  I almost think we are ahead of the game, but then I remember the 100 things I haven't dealt with yet.  Yikes!

The new house interior has been painted, and it looks awesome!  New rugs and furniture and granite counter tops are in the works.   My smartest move to date?  I rented the previous owner's snow blower for the winter.  Even though we hired our plow guy to do the driveway, we have 2 long walks from the driveway to the front and back of our new house.  I can't imagine having to shovel those, especially after the 3 feet of snow we are about to get.   Good move, Bill!  I'll try not to break my arm patting myself on the back.

In the meantime, we're just hunkering down and waiting this one out.  I'll let you know if we make it through.




Wednesday, January 14, 2015

Moving Frenzy

I want to apologize to all of you faithful followers who have been waiting with bated breath for me to update my blog...well, maybe 2 or 3 of you at most.  Anyway, it has been a hectic time as we prepare to move into our new home in West Newbury.  We closed on our new home on January 3, but it wasn't without some last minute drama.  At the last minute, our mortgage application was denied because we didn't show a monthly "pension" income from our investments, a new requirement from Fannie May and Freddie Mac.  WTF?  Anyway, we scrambled around to cover the deficit in order to close on time.  We've arranged things to make that problem go away and will re-apply for the mortgage.  Serendipitously, the rates have dropped over the last month or so, so we might come out smelling like a rose.  Somehow things have a way of working out.

We have been so fortunate that Nancy, the new owner of our current abode, has graciously allowed us to stay here as renters until we are ready to make the move.  That has given us time to sort through our stuff while we pack and schlep boxes on a daily basis to the new place.  Our deadline is the end of February, but we hope to complete everything well before then.  We damn well better be out before then, because I'm spending the last week of February in North Carolina on my annual golf outing with my brother, Terry, and a bunch of friends.  Our friend, Barbara, has been a Simon Legree, whipping us into action to get us moving (so to speak).  When we look at what we've done so far, it seems like a lot, but then when we look at what's left...Holy crap!  We've got a long way to go.

As a closet hoarder, I have accumulated a prodigious amount of useless items over the years that I am agonizingly sorting through to decide what is really important.  The college notebooks that I don't even understand anymore had to go, because it's embarrassing to realize how stupid I've become over the years.  Who was this seemingly intelligent person that I used to be?  Duh.  It's interesting to note that my focus has shifted from what might I be interested in looking at again to what might Gretchen and the kids care about looking at again when I'm no longer here.  To tell you the truth, other than family pictures and memorabilia, not much!  It's humbling.

We decided to hire, Amy, the decorator who staged our house successfully for the sale, to help us figure out what to do with our new home.  While we could actually move in without any major changes, there is a lot we want to do before the move...painting, upgrading the kitchen counters, some new furniture, etc.  We still don't know where to put everything, so we need lots of help.  Amy, HELP!!! 

I'm still feeling good, and I go back to the Farber next week for my monthly checkup and Zometa infusion.  After I prodded them last month, they realized that I still need some of my childhood immunization shots to protect my new immune system, so I'm scheduled to get those.  That should bring me up to date on that score.

Wednesday, December 31, 2014

Happy New Year

It's New Year's Eve, the last gasp of 2014.  The glow of the holidays is just beginning to fade.  The last of our family left for home today, but the echoes of their presence still punctuate the solitude.  We are winding down, glad to be finally alone but missing the joy of their company.  This is a quiet night at home...no party, no champagne, just quiet relaxing and an early night to bed.  We'll leave the partying and the fireworks to the youngsters.  Yawn...

This year has had its ups and downs.  Gretchen breaking her foot was a big downer, but she has pretty much fully recovered from that.  The other big news is that we managed to sell our house, and we are about to close Friday on our new one.  We took most of our family over to check out our new home yesterday, and they all loved it!  We are excited about the move, while still harboring nostalgic feelings about this place and the wonderful memories we have created here over the last eleven years.  The next couple of months will be filled with the stress of packing and moving. We can't wait for it to be all over and for us to move in to our new home.

I'm now sitting here just thinking about how lucky I am.  I'm feeling great, and my myeloma is still at bay.  We have an amazing family and a terrific circle of friends.  I'm optimistic about the new year!  I'm looking forward to getting settled in our new place.  I'm also anticipating new advances in MM treatments that will give all of us patients more hope for longer survival.

We have a couple of big trips planned for 2015.  In March, we are taking a family vacation to Maui, Hawaii for eight days along with Brian, Pam, and our grandson, Logan, as well as with Pam's parents and Brian's mom, Cheryl (my ex-wife), and her fiance, Fred (our optometrist).  I know this may sound weird, but surprisingly, we all get along really well, so it should be a fun vacation.

Our daughter, Holly, and her boyfriend, Ryan, are heading to Peru in February for her to teach pre-school children in a Montessori school.  That should be interesting, as she doesn't speak Spanish!  Ryan will work a lot from home there, although he travels world wide often on his job.  They will be there until next December, so we plan to get down there at least once in 2015.  While visiting them, we have to take a trip to Machu Picchu, one of the sites on my "bucket list', although I'm much too young and healthy to have a bucket list.  ;-)

Happy New Year to you all!  Most importantly, may you enjoy good health in the coming year.  


Tuesday, December 23, 2014

More Farber

Last Wednesday I went to the Farber to follow up on my iron Dextran infusion.  My results are still good.  All my iron and anemia numbers are still up in the normal range.  I have been feeling really good lately, and I have more energy than before.  I am not napping as much now, so that's positive.  Samira recommended that I still take iron pills (maybe every other day), just to keep my numbers in the normal range. OK, so I should be in good shape on that front for a while.

 Thursday I went back to the Farber again to attend the last Writing Workshop.  I have been doing these workshops for the last 3 years, and I have found them to be emotionally intense, as well as really helpful and refreshing.  Amy, the moderator, now has extra duties at Boston College, so she can't keep doing this.  Too bad...she has been great!  I will miss the group and her monthly writing challenges, which have been inspiring.  This time, Amy challenged us to write a "6-word memoir".  Legend has it that Ernest Hemmingway was once challenged in a bar to write a tragedy in only 6 words.  He responded with, "For sale: baby shoes, never worn".  Since then, this has become somewhat of an art form.  There are several books on this, one of which is entitled, "Not Quite What I Was Planning".  Anyway, in response to the prompt, I wrote:  "Thought I knew.  I was wrong".  I will miss these gatherings.

Today I had my monthly visit and bi-monthly Zometa infusion.  Thankfully, my numbers are all still good!  While there, I ran across Kathy Colson, the RN who managed the MLN9708 trial that I started on 3 1/2 years ago.  She said she often thinks about the incredible coincidence that got me into that trial on my first visit to the Farber.  Their original candidate, with the initials WO, had just backed out.  Since they had already submitted him using only those initials, the only way they could replace him was with someone with the same initials.  What serendipity!  I still shake my head when I think about this.  Kathy still marvels about it.  The rest is history.  I  responded really well---MLN9708 hit a home run with me.  What a lucky son-of-a-gun I am!

That reminds me of the story of James Bond, a long-term MM survivor, who spoke at the Farber Patient Symposium a couple of weeks ago.  He was in dire straits and out of options when he got into the first clinical trial using the new wonder-drug, Velcade, with Paul Richardson about 10 years ago.  It was a long shot, but everyone thought it was prophetic that the trial number randomly assigned to him was 007!  Miraculously, he's still here, a testament to serendipity and the effectiveness of the recent advances in MM therapies. 

I promised to give an update of the recent ASH Conference held in San Francisco.  Talking with Kathy today, we discussed the recent clinical trial results with MLN9708 (Ixazomib) presented at ASH. The results have been fantastic, and The FDA may approve it as both a front-line and R/R treatment in 2015.  It's a great drug, with the advantage of being pill not an infusion, and I was fortunate to be part of the initial Phase I trial.  It may eventually replace Velcade as the treatment of choice for MM.  Thank you, Paul Richardson!

At the Farber's Patient Symposium on December 13, Ken Anderson summarized the future of novel agents against MM.  The most promising future agents are the monoclonal proteins.  Elotuzomab (anti CS1) and Daratumumab (anti CD38) are both showing great promise. Another promising agent is SAR650984 (anti CD38).  Immunization therapies have also come a long way.  One use of these is in early stage disease, such as MGUS and Smoldering MM.  High-risk patients in these categories may benefit from early intervention before progression to full-fledged MM.  For patients with advanced MM, suppression of the baseline immune system can inhibit the effectiveness of immunization therapies.  However, recent advances in using the PD1/PDL1 blockade may enhance the effectiveness of immunization, allowing the body's own immune system to target the MM cells.  There is still a ways to go in using cytogenetics to provide individualized treatment regimens, but the future is very promising in this arena.

We are awaiting the arrival of our family for the Christmas holiday.  I'm excited!  Jason may come in from Connecticut late tonight, and Holly and Ryan are arriving from San Francisco tomorrow morning.  Jeff and Christine will come over tomorrow and we will have Christmas Eve and Christmas day here, celebrating our last get-together in this house.  The menu includes smoked ham and egg plant parm tomorrow and standing rib roast Christmas day, along with Yorkshire pudding, lasagna, calamari salad, and a lot of other stuff I forget.  Needless to say, we won't go hungry.  Brian, Pam, and our grandson, Logan, will be coming in on Sunday to spend a few days, so I'm looking forward to spending a relaxing week with family.

Then comes the closing on our new house on January 2, and we have to start packing and moving.  In the meantime, we'll just try to enjoy. 

It's all good!






Monday, December 15, 2014

Urologist Visit

Today I had an appointment with a PA urologist, Susan Palmer, to followup on my recent high PSA reading of 10.5.  She was very competent, knowledgeable and informative.  I have to admit that having my deepest internal anatomy probed by a beautiful 30-something woman was, well...different.  I don't know what else to say about that.

Anyway, there is no surface indication of a tumor, although one lobe is larger than the other, which is not unusual.  The interesting thing about prostate cancer is that there are no reliable non-invasive tests.  The PSA test is only an indicator of possible problems, as is the physical examination.  The only way to know is to do a biopsy, which is an uncomfortable procedure and is not without the risk of infection (3%).

As is my wont, I had done a some research in recent years about the efficacy of doing the PSA test.  Many physicians and organizations advise against it for a variety of reasons, including false positives and negatives, the slow growth rate of prostate cancer, and the potential debilitating side effects of treatment.  Since I have no family history of prostate cancer, I suspended taking the PSA test after 2009, when my number was about 2.0.  As I mentioned in a previous post, I only opted to revisit this test because of the potential risk of secondary cancers associated with my MM chemo treatments.

I had a very good discussion with Susan about my options, one of which would be "See ya later".  I don't have any unusual symptoms and have no trouble urinating.  Also, I have not noticed any recent changes that might be cause for suspicion.  Therefore, I opted to have another PSA test done in a couple of months.  At that time, we can see if my elevated test result was an anomaly, whether it is stable, or is increasing.  If it goes any higher, I think I would opt to have a biopsy done.  Otherwise, I would probably just continue to monitor it.  If I do end up having a biopsy and the results were to be positive, that would bring up a whole new set of decision options to consider. 

Susan made an interesting point.  If one's life expectancy is less than 10 years, they generally do not recommend drastic treatment options for newly-diagnosed prostate cancer, because it is slow-growing and usually takes ten years or more to metastasize into a life-threatening situation.  Now I am a real optimist.  I personally expect to be here to continue to amaze, amuse, and confound everyone around me ten years from now.  But statistically, that would make me an outlier. 

So!  Here's the bottom line.  I'm not going to do anything drastic.  I will await my next test results in February and take it from there.  In the meantime, I don't plan to worry my pretty little head about it.  There is life to be lived, and that's what I'm going to do.

Saturday, December 13, 2014

Orlando and Farber Patient Symposium

Things are a little bit crazy right now.  We just returned Monday from 6 wonderful days vacationing in Orlando, Florida with Jason and his girlfriend, Jessica.  No, we didn't buy the time share they tried to sell us during the obligatory sales pitch.  It sounded like a pretty interesting proposition, but to buy both a house and a time share at the same time would be the height of foolishness.  I've been known to be foolish, but not that foolish.  Besides, we both think that a time share would be too constraining on our choice of future vacations.  We don't like limits on where we can go, even if they are broad limits.

We had a terrific time with Jason and Jessica!  We bought multi-day, two-park tickets to the Universal Studios and Islands of Adventure parks, and we spent most of Thursday and Friday there.  It wasn't crowded and the lines were only 5-10 minutes for most rides, so we got the most out of it.  Unfortunately, Gretchen can't do any of the rides because of her head injury, but she enjoyed kibitzing and chatting with people while the rest of us were whirled, dashed and thrashed around in dizzying 3-D rides and death-defying roller coasters.  I'm proud of myself that I almost threw up only once.  Young people are so great to be around...they infuse an energy and vitality that makes us feel young again.  The two Harry Potter attractions were terrific (especially Diagon Alley)!  I would highly recommend them if you decide to visit Universal, that is if you can afford it.  In a stroke of marketing genius, each of the Harry Potter attractions is in a different park, so you have to buy a two-park ticket to experience the whole thing. 

Dinner at Clearwater Beach
Then on Saturday, we drove to Clearwater Beach, where we sunned ourselves in the 80 degree temperatures and dipped our toes in the waters of the Gulf.  We capped off the day with a delightful dinner on a waterfront deck as we watched the sun set. Nice!

Reality set in as we returned home to Boston on Monday to face a temperature of 23 degrees (yikes!), followed by a Nor'easter with howling winds that dumped 5 inches of rain on us over the next couple of days.  It could have been worse.  It could have been 3-4 feet of snow.  Now why is it that we're buying a house in Massachusetts again?  Please remind me.

Today I went in to the Farber to attend their annual Patient Symposium, where Ken Anderson, Paul Richardson, and others brought us up to date on the latest MM laboratory and clinical research, including results from the ASH conference held last weekend in San Francisco.  This the 4th time I have attended this Symposium, and it is always an exciting, uplifting experience.  I'm looking forward to being around to attend many more.  It's really encouraging to see how much progress is being made in finding new MM treatments from year to year.  I was especially interested in the encouraging new results for monoclonal antibodies and immunization approaches, as well as recent progress in genome sequencing giving better understanding of MM mutations.  I haven't had a chance to digest all the information yet (it's like drinking from a fire hose), but I hope to provide a summary in a future post.

Sunday, November 30, 2014

Thanksgiving

I had my monthly visit to the Farber on Monday.  All my numbers still look good!  My iron results are still great after my Dextran infusion last month.  I have noticed a distinct increase in my energy level.  While I still sleep a lot (10+ hours a night), I haven't been tired during the day, so I haven't been napping much lately.  Here it is about 11:30 pm, and I am still pretty wide awake.  Yahoo!

We got our first snowfall of the winter this past week.  I wasn't quite ready for it.  I have a cord of wood sitting in the driveway waiting to be stacked in the garage, and there are still some plantings to be cut down for the winter.  At least I finally got most of the leaves blown away or scooped up with my mower before the snow hit.  I've been a little bit lazy about getting all this done.  Maybe it's because I know it's the last time I'll be doing this here.  Or maybe I'm just lazy.  Anyway, I hope to get these things out of the way over the next couple of days.

We had a nice, comfortable Thanksgiving.  Because our family is dispersed, only Jeff and Christine, along with her mother and sister were here.  I roasted a 16-pound turkey on the grill and Gretchen worked her usual magic with all the fixins.  Everything was delicious!  It has always been our favorite holiday, and it was special to celebrate it here for our last time in this house.

Yesterday, we had our special friends, Bobby and Cathy, along with their children and spouses and granddaughter, for our traditional Christmas Tree hunt.  We do this every year on the Saturday after Thanksgiving.  We went to a local tree farm and selected Christmas trees to cut down.  Afterwards, we come back here for gumbo and chicken enchiladas.  Delicious!  This year, Gretchen and I thought we might not have a tree at all, since we will be moving soon, but we then the decided to get a small tree.  We found a tree that looked a lot bigger than what I thought we were looking for, but Gretchen really liked it.  OK, so I decided to cut it down.  Jeesh!  The saws they gave us must have been really dull, because it took me about 10 minutes to cut that sucker down (pant, pant).  We struggled to haul that thing on a sled all the way to the front to pay for it.  When we got there, we realized that this tree was actually much larger than we had thought, so we pleaded with the owner to trade it in for a small tree at the entrance that was already cut.  Gretchen did the talking, so they agreed, and we now have a nice small tree.  All that work wasted!  But I'm really glad to have a small tree for a change.

On Wednesday, Gretchen and I are flying to Orlando, Florida for 5 nights.  This is a reprise visit from our last visit in the spring to look at buying a timeshare from the Marriott.  We still aren't planning to buy one (Hello!  We just bought a house), but we still have to sit through a 1-hour presentation while there.  Jason and his girlfriend, Jessica, spent this Thanksgiving with her parents, but they are both coming to Orlando with us this week.  That should be a lot of fun.  She has never been on a plane before (!!), so this should be a real treat for her.  I just checked the weather and it looks like it might be in the mid 70's for the week without much or any rain.  That would be awesome!  They (and I) like adventures, so we may go to Universal Studios, and then perhaps drive to Clearwater Beach for a day.  Who needs to pack for a move, right?

Speaking of moves, we are proceeding with getting a mortgage and are still planning to close on January 2, 2015.  The owners of our future home, Ed and Claire Flaherty, have decided to put their furniture in storage and rent a place on Salisbury Beach on the Ocean for 6 months.  They got that idea from us, as we were thinking of doing that before Nancy, the new owner of our house, offered us a very reasonable rent to stay here.  They plan to move out before Christmas!  Well guess what, we aren't ready to move yet.  We have no intentions of rushing around trying to pack everything before the Holidays, so we are just going to chill for a bit.  I mean really, let's not get our bowels in an uproar over this.  Everything will happen in due time.


Sunday, November 16, 2014

Annual Physical

Well, it's official.  The P&S has been signed for our new house.  We are looking to close on January 2, although we still don't know when we will be moving in.  Nancy, who bought our house, would be happy for us to stay here through the winter, as she won't be moving in before spring.  That gives us a lot of flexibility to allow the owners of our new house to stay for a while if they need time to find their new home.  I don't know when this game of musical chairs will end.

I haven't had an annual physical for a while, so I recently scheduled one.  After the obligatory proctology exam (bend over and smile), Dr. Guidi informed me that my prostate is somewhat enlarged.   Over the years, I have elected not to have my PSA tested during normal blood tests.  The last time I had a PSA test was at least 15 years ago, and my number was below 2.  There is a lot of controversy in the medical community about the necessity for the PSA test, as it often reveals false positive results, which may lead to over-treatment of either benign or slow-growing prostate tumors.  Besides, I had no family history of prostate cancers.  So I again told the doctor not to schedule the PSA test when I came in for my blood test the next week.

When I arrived for the blood test, I suddenly made a spur-of-the-moment decision to have my PSA tested.  I changed my mind on this based on the fact that the chemotherapy I underwent for my ASCT (melphalan) and long-term use of Revlimid both have resulted in increased incidents of secondary cancers in MM patients.  For example, I had surgery to remove a squamous cell carcinoma from my face earlier this year.  I don't know that that was linked to my MM treatments, but I think I can no longer wait passively while sitting on potential time bombs like this.

A few day later, the nurse, Gail, called me with the results of the tests.  "They were mostly good", she said.  Hmmm.  So, exactly what does "mostly good" mean.  Well, she then told me that my PSA result was high.  How high?  "10.5", she said.  Gulp.  For someone my age, normal PSA results should be less than 6.5-7.5, so this is a bit out of the normal range.  She then proceeded to get me an appointment with a urologist at Lahey Clinic on December 15. 

At this point, I decided to seek Dr. Richardson's advice.  I emailed him about my results and my scheduled appointment.  I told him that if I do get diagnosed with prostate cancer, I want to be at the Farber, and who should I see?  He responded immediately and said to go ahead with my appointment next month and we can go from there once we know what's going on.  He then recommended a couple of specialists at the Farber if that becomes necessary. 

I have to admit that I'm mildly concerned, but I'm not stressed out about this.  Que sera, sera.  All I can do is wait and see.  In the meantime, The Patriots are about to play the Colts, so I have to go watch the game!

Saturday, November 1, 2014

New House

It's been a busy week.  Monday I had my monthly checkup at the Farber.  Fortunately, everything is still good with the MM.  Knock on wood.  The most interesting results were my red blood cell counts after getting the iron dextran infusion the week before.  Wow!  My hematocrit ("crit" in nurse speak) jumped from 37.7 to 44.4 (normal range is 38.4-48.2).  Similarly, my hemoglobin went up from 12.6 to 14.6 (normal range is 13.2-16.7).  That sure took care of the anemia!  I feel like Popeye--"I eats me spinach".  Watch out, Bluto!

After my appointments, Gretchen and I drove up to our summer place at the farm in upper New York state to join Jeff and Christine for a couple of days.  We had a great time cooking on the grill, sitting by the fire pit, and navigating the ATV trails.  We celebrated Christine's birthday on Tuesday by driving up to Montreal.  We had a delightful visit to the Museum of Fine Arts and then capped off the day with a wonderful meal at a nearby French (what else?) restaurant called L'Autre Saison.  It was scrumptious.  Montreal is a great city, and it is only a 45 minute drive from the farm.  Sadly, the season is coming to an end, so we closed up the place for the winter.  Until next year.

The biggest news of the week is that we have finally found a house!  Our experiment of dropping off flyers at houses that looked interesting to us has paid off.  We liked this house, and the owners got back to us saying they hadn't really thought about selling.  However, a couple of weeks later, they changed their minds.  We looked at it and it is the first house we have seen that meets all the criteria that are important to us.  It has a lot of privacy on a quiet street in a good neighborhood, an available first floor master bedroom/bathroom suite, two wood-burning fireplaces, attached two-car garage, upgraded granite kitchen and bathrooms, etc.  It even has a "drive-out" garage door in the basement that could accommodate storing our boat for the winter.  How cool is that?

 Here are some more pictures of our future home.  The eat-in kitchen features beautiful cherry cabinets and a gas stove.  It also has a three-season screened in porch that overlooks the private wooded back yard.  We haven't signed all the paperwork yet, but we are planning to close on the new place by January 2, 2015.  Hopefully, they will find a new house by then.  Otherwise, we may have to try negotiating an extension of our rental agreement here and renting our new house back to them for a couple of months.  Kind of weird, huh?  We'll see.  This is a really exciting time!

To cap off a whirlwind week, Jeff and I are going to the Patriots-Broncos game tomorrow.  This is a huge rivalry between two of the best quarterbacks of all time.  It will be a "Clash of the Titans" between Peyton Manning (#18) and Tom Brady (#12).  Some have referred to this as the "War of 1812".  Win or lose, this will be a memorable game.  It is supposed to be cold and rainy, but that's what NFL football is all about--pay $50 to park and $150 for a ticket to suffer in the stands in miserable weather with a lousy view.  Who wouldn't want to do that? 


Friday, October 24, 2014

Iron Dextran Infusion

Yesterday morning Gretchen and I fought miserable weather and rush-hour traffic conditions driving to the Farber for my scheduled infusion of iron dextran.  The total procedure took over 5 hours, so we had the pleasure of hitting the afternoon traffic on our way home as well.  Fortunately, I had no side effects or allergic reactions and the procedure went smoothly.  Hopefully, this will solve my persistent anemia without the need for any more iron pills.  We'll see.  I head back to the Farber again on Monday for my monthly checkup and Zometa infusion.  Mary McKenney didn't want me to get the iron dextran and Zometa on the same day, necessitating the two trips.

I keep getting comments on my blog post from August 28, 2012 entitled "Myeloma-Lyme Connection?  I Say Yes!"  I suspected that the reason for this is that people searching for any connection between Lyme Disease and MM must come across that particular post.  To check that, I Googled "multiple myeloma lyme connection".  Guess what the number 1 Google result is.  Yup, that's the one!  I don't know how it got there (I sure didn't pay Google to push it up the list), but I'm glad because it keeps attracting comments.  I try to respond to these comments, so the result is a continued dialog between me and other Lyme/MM sufferers.  I got another thoughtful comment the other day from a woman whose 15-year old daughter was seriously ill with Lyme Disease and had MGUS as well.  After extensive treatment for the Lyme, the MGUS disappeared.  Hmmmm.

I followed up with the Multiple Myeloma Research Foundation (MMRF) as I said I would in my last post.  I talked to an RN Millicent and suggested that they should change their list of general health categories to include Lyme Disease and other autoimmune disorders.  While she was polite, I detected a distinct lack of enthusiasm for my suggestions.  She said she would follow up, but I don't expect to hear back any time soon.  My next step is to start sending emails in the hope of getting some positive response.  I'll let you know what happens.

While at the Farber yesterday, I read an article in their newsletter about a novel compound the prevents MM from metastasizing into the bones.  Myeloma cells originate in the bone marrow, get into the blood stream, and eventually return to the bones, where they can form numerous lesions.  A substance called stromal cell-derived factor-1 (SDF-1) is a protein that attracts myeloma cells.  Mice with advanced MM had sharply higher levels of SDF-1 in the sites in their bones where metastasis had occurred.  Farber researchers, headed by Dr. Irene Ghobrial, are testing a substance called olaptesed pegol that binds tightly and specifically to SDF-1.  Lab experiments with mice have shown that olaptesed pegol alters the bone marrow, rendering it uninviting to myeloma cells, leading to prolonged survival.  It is now being tested in a clinical trial with MM patients, with more trials to come.  Great!  I'll keep an eye out for results from these trials.