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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 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.