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Saturday, December 15, 2018

Richardson Visit

Last week I met with Paul Richardson and his fellow, Tom Garcia, to discuss my options for Revlimid maintenance going forward.  This is the first time I had met Tom, who has worked with Paul for the last 3 years.  He was very impressed with how well I am doing.  One area I discussed with Paul was whether an MRD test would be clinically useful in determining whether or not I should remain on maintenance therapy.  His answer was no, because there have not yet been any clinical trials to demonstrate any advantage to discontinuing maintenance for MRD-negative patients.   I was not at all surprised that he strongly recommended my continuing with the Revlimid maintenance.  In other words, if it ain't broke, don't fix it!  Paul was also very upbeat about all the new treatment options now available once I eventually relapse.  It was a good discussion.

For any of you who are concerned that I might choose to stop taking Revlimid because of the cost, rest assured.  I'm not going to do that.  Life is too precious to take any gambles like that, regardless of cost.  Yes it's expensive, but fortunately I can deal with that.

In the process of preparing for our meeting, I did some research on new myeloma results presented at the recent ASH conference held in early December.  One paper in particular I found quite interesting.  Here is the link:  Revlimid, Velcade, and Dexamethasone, Followed By Stem Cell Transplantation, Yields Deep Responses And Considerable Overall Survival In Newly Diagnosed Multiple Myeloma.

This paper describes my treatment regimen almost exactly, although I was on the oral MLN-9708 instead of the infused Velcade for induction therapy.  You may recall that I am considered a high-risk patient because of my t(4;14) translocation chromosomal abnormality.  Not only that, but I also have the IgA type myeloma, which is more aggressive than the more common IgG myeloma.  Those were two things not in my favor at my diagnosis.

Two results from this study got my attention.  First, the median duration of remission of patients following stem cell transplant was only about 2 years!  That stunned me.  Here I am almost 7 years later still in remission.

The second result in this study was that the median overall survival of these patients was 8 years, but for those patients with one or more high-risk chromosomal abnormalities, the median overall survival after the stem cell transplant was only 5 years!

Obviously, I have been taking this way too much for granted.  The stark reality of my situation has suddenly crashed down on me.  I've been living on borrowed time.  I am one extremely lucky dog.  Every single day that I remain disease free is a gift.  It's up to me to make the most of it.

Tuesday, December 4, 2018

Sticker Shock

I've been a really lucky guy.  I have been in remission from multiple myeloma for over 6 years now.  One of reasons may be that I have been fortunate to be on a clinical trial that has provided me with continuing maintenance using the drug Revlimid on a daily basis free of charge over that time.  As you may know, Revlimid is an exorbitantly expensive drug, one of the most expensive in the world.  Lucky me.

Well, my luck is about to change.  I just found out yesterday at my monthly Dana Farber visit that the clinical trial I am on is terminating at the end of this month.  That means from now on, I will have to pay to continue with my Revlimid maintenance.  That's not good.

After my initial shock, I came back home to determine what financial effect that would have.  I am in the process of reviewing my Medicare Advantage Plan options for next year, and I have to make a decision by December 7.  I looked at my options on the Medicare website and added Revlimid to my list of drugs.  That was an eye opener!  Fortunately, I have an Advantage Plan.  If I only had Medicare Part B, I'd pay list price and my out-of-pocket cost of adding Revlimid would be about $300,000 next year!  Holy crap!  How could anyone other than the super rich ever afford that?  With the Advantage Plan, my expected out-of-pocket costs for Revlimid will be a "mere" $14,000 next year.  Whew!  I guess I should be happy, but I'm not.  That still comes to about $40 per day.

Celgene has the world by the balls and has consistently increased the price of Revlimid over the years to its currently stratospheric levels.  They have been able to do this by cleverly holding on to their patents by requiring monthly surveys to assess safety in using the drug (because it can cause birth defects).  Good for them...bad for us.

I don't think that I will qualify for any of the financial aid plans that are available out there, because I'm pretty sure I will be over the income limits.  I may look into this, but I'm not hopeful.

Now I have a decision to make.  Do I want to keep taking Revlimid at these prices and hope that I stay in remission?  How important is it that I continue to do this?  Maybe I will relapse even if I do continue to take it.  Maybe there is some other maintenance drug that is less expensive and might work.  Maybe I'm actually cured and don't need it any more.  Or maybe treatment options have improved so much over the last few years that even if I do relapse, my survival chances are good.  At what price to I decide take a chance by stopping the Revlimid?  These are important questions for me.

Today I scheduled an appointment with Dr. Richardson on December 11 to discuss these issues.  One of the things I want to discuss is how deep is my remission.  Some patients have reached a state of Mimimal Residual Disease (MRD), where less than one in a million cancer cells can be detected.  In that case, treatment options are much more flexible than with less stringent conditions.  In fact, there are some who say that a response of that level represents a "cure" for MM.  I was never tested for MRD (my remission was based on the standard test of less than one cancer cell in a thousand).  I had asked Paul last year about getting tested for MRD, but he told me it wasn't necessary since I was on a continuing maintenance protocol.  Well, I think that has now changed, right?.  I may ask him to test me for my level of remission.  If I can show that I am in MRD remission, why do I need to spend $14K a year on an exorbitantly expensive maintenance drug?  Inquiring minds want to know.

I'll update this blog once I have some answers.

Friday, August 17, 2018

Sword of Damocles

I'm going to start this off with a good story.  For the past seven years, I have been getting infusion therapy for my MM at Dana Farber, most recently with Zometa (bone building) infusions every 3 months.  For all this time, Heather has been my primary infusion nurse.  She has been a constant presence in my MM journey, and I have gotten to know and care for her.  She has been one of the constants in my Dana Farber life.  She is young and attractive and has had a constant progression of boyfriends over this time, none of whom have worked out very well.  We used to talk about how she was doing with her latest fling during my infusions.

Finally, she kissed a frog, Jeff, who turned out to be her prince!  She lives in Brookline and they got engaged last fall.  The wedding date was July 21.  Gretchen and I had recently been to a very nice Spanish tapas restaurant in Brookline, the Barcelona, so we thought a gift certificate for there would be a nice wedding gift.  In my July visit to the Farber, I left her with a card and the gift certificate.

Last Monday, I was at the Farber for my checkup and Zometa infusion.  Heather was my infusion nurse again, as I had hoped.  As I sat in the chair waiting, she walked in and asked, "Did you know that the Barcelona was where we had our first date?"  No, I didn't know that, but it was so perfect!  They had used our gift and gone there for dinner the Saturday before, and the staff, hearing their story, treated them to free dessert.  That was nice.  Some things just seem to work out.

Now what about this Sword of Damocles thing?  For those of you who don't know, the Sword of Damocles is a story about an ancient king who had an pandering admirer, Damocles, who envied his power and opulence.  The king offered to exchange places with him for one day, so he could taste that fortune firsthand.  Damocles quickly accepted, but as he sat on the throne, the king arranged that a huge sword hung above the throne held only by a single horses hair.  Realizing that with great power comes great danger, Damocles quickly relented the throne.  

In today's world, the Sword of Damocles is used more generally to denote the sense of foreboding engendered by a precarious situation, especially one in which the onset of tragedy is restrained only by a delicate trigger or chance.

I've been living under the precarious shadow of a potential relapse now for over seven years.  I've been dealing with this on a month to month basis for a long time now.  Every month, my blood test numbers have been coming back positive, which is great!  Only that delicate horse hair has kept the sword at bay.

The question is how have I been dealing with this.  I have not been consumed by a sense of foreboding, as Damocles was, but why not?  Aretha Franklin died today at an age of 76.  She was a legend and left an enormous legacy.  I am 75 years old now, and if that single horse hair should break sometime soon, what would I leave as a legacy?  That bothers me more than the thought of my mortality.  Am I to leave this world as a better place?  Have I done enough to compensate for my sins along the way?  I don't know.

When that sword finally falls, as it must, can I hold my head high and say, "I tried, I really did"?

Tuesday, March 20, 2018

Habitat Trip

Last weekend, we attended a birthday party for one of our friends' daughter, Annabella.  She was a lovely young lady celebrating her 6th birthday.  Now it's my turn.  Today is the 6th anniversary of the stem cell transplant that gave me my new immune system!   I call it my "second birthday".  Happy Birthday to me!  (I've decided to forego the cake and candles.)  Since that day, my new immune system has served me very well.  Today I was at Dana Farber and got confirmation that I am still in remission from my Multiple Myeloma.  I am a very lucky man.

Team Epic for Bill
One of the reasons that I am doing so well is because of the extensive research conducted on finding a cure for MM.  The Multiple Myeloma Research Foundation (MMRF) has been instrumental in bringing many new therapies to bear on MM.  Two years ago, my daughter-in-law, Pam, started "Team Epic for Bill" as a fundraiser for the MMRF Team for Cures 5K Run/Walk event in Boston.  We were fortunate to raise over $10,000 each year, and it has been a wonderful event.  This year, we are raising funds again for this event, which will be held at Carson Beach, South Boston on April 29, 2018.  I invite you to come run or walk with us that day.  If not, I would appreciate any donation you could make to this worthy cause.  Please check out my website at  Thank you in advance.

As you probably know, I have been volunteering with the Merrimack Valley Habitat for Humanity (MVHFH) In Lawrence, MA for the past 3 years or so.  So far, I've been involved in four building projects, most recently on new duplex housing for low-income families.  It has been very rewarding, as well as a great learning experience.  I have worked on various aspects of house construction, from framing to flooring to sheetrock installation and mudding to insulating to vinyl siding to painting, and finally, to plumbing.  For the last year, I have been mostly doing PVC drains and vents, water and heating components, and especially heat and hot water boiler installations.  It's kind of amusing that I am now pigeon-holed as a "plumber", since plumbing was one of the things I hated the most when working on my own house!  Go figure.  Anyway, I'm having fun.

Two weeks ago, I had the privilege to visit the Dominican Republic for a week with some of my compatriots from the MVHFH to help build houses in that country.  We spent Saturday night in the capital, Santo Domingo, and then took an interesting walking tour of the Old Town the next morning.

Group picture in Santo Domingo
We then took a 4-hour bus ride (driven by a kamikaze driver with a death wish) west of the capital to San Juan de la Maguana, which was out base of operations for the next 5 days.  Those in the front of the bus compared it to a theme park thrill ride.  I was in the back, so I tried to sleep.

Ready to load the mixer
Monday we visited a cement factory, where we spent the day building concrete slabs, which serve as wall components for many of the low-income houses that are built there.  As you can see from the picture, Randy and I were hard at work shoveling sand and gravel into the cement mixer.  That was my job for the day.  Actually, this picture was taken before we even started, which may explain why I'm smiling.  It was hard but satisfying work.

The building process is interesting.  Most of the Habitat houses are only about 800-900 square feet with 3 or 4 small rooms. House walls are constructed from these pre-formed concrete slabs, which are slid into aluminum upright channels to hold them in place.  Once the concrete foundation is poured, it only takes a day or two to complete the walls.  The roofs of these minimal houses are usually metal.

Peter ready to shovel concrete
Tuesday was our hardest day, which involved pouring a concrete roof on a cinder block house.  This process was amazing.  The concrete was mixed on the ground and then poured onto a wooden slab.  Two people then shoveled it up to an intermediate platform, and from there, it was shoveled up into a wheelbarrow to distribute it to the roof.  This picture shows Peter, one of our volunteers, bravely about to take a turn shoveling.  A few of our stronger guys did this duty for about 5-10 minutes or so, but the local laborers were amazing in their ability to do this work almost all day.  I was very impressed with how hard these local laborers worked and for very minimal wages.  As for me, I stayed on the ground and shoveled sand into buckets to keep feeding the cement mixer.  I found that to be hard enough.

House before we started
The next day we spent building a concrete floor for a small house.  Here is the before picture of this shabby dwelling.  We had to remove all the items before starting, which included a chicken nesting her eggs in a corner with a rat behind her.

The family included 3-4 generations living in two small units.  Rosa, the matriarch was well into her 80s, while the youngest children were grade school age.
House when we finished
Pouring of the floor took all day, although it took a while to get started.  We didn't have a close source of water to mix the concrete, so they had to take a truck with a water barrel about 5 miles away where there was a river, and used buckets to fill the barrel from the river.

The Dominican laborers were very good at installing and smoothing the concrete floor, and it looked great when it was done.  The next day, we split the group up.  One group went to another house to pour a floor, and I stayed at this house to paint the inside.  It would have been great to have a paint sprayer, as the concrete walls were rough and full of holes and gaps, but we did the best we could with rollers and brushes.  Anyway, the place looked pretty nice when we were finished.

Rosa and me
The family was very grateful for the work that we did.  This was a family in what we would call extreme poverty, but they seemed to be happy and healthy.  I'm not sure how they survive in these conditions, but they do.  We bought the family new mattresses to replace the old ones you can see in the picture.  They were thrilled.

I have to say that it was an extremely satisfying and rewarding experience to be able to help this family live with a concrete floor instead of mud and to brighten their domicile with some lively paint.

On our last day, we also painted another house in the same region, where our other group had poured the concrete floor the day before.  This was a very large family living in a small 4-room house.  They had lived on a mud floor for the past 20 years until we arrived.  Again, this family was exceedingly grateful for our efforts.

I have to say that this was one of the best experiences I have had.  I learned so much about their building methods, their culture, their living conditions, and their people.  It was gratifying to be able to contribute some small amount to improving the lives of some of these families.  I hope I will be able to go on one of these Global Build adventures again before long.

Wednesday, January 24, 2018

Amazing Trip

Here I am posting barely a month removed after my last post.  Will wonders never cease?  I'm pinching myself to see if i'm really doing this.
Bangkok Temple of Dawn

We just returned last week from our Viking River Cruise in Southeast Asia.  It was the trip of a lifetime for us!  We started with an amazing 3-day pre-cruise add-on to Bangkok, Thailand, where we took a long boat ride on the Chao Phraya river and canals, visited the Siamese Royal Palace ("the King and I"), and celebrated New Year's Eve watching dazzling fireworks over the river from our window in the Shangri-La Hotel.  Oh yes, and we enjoyed some delicious Thai food there too.  Yum!

We then flew to Saigon (Ho Chi Minh City), Vietnam, where we stayed at the opulent Reverie Hotel for 3 nights.  While there, we visited the famous Cu Chi tunnels, one of the places from which the Viet Cong launched the Tet Offensive in 1968.

American tank at Cu Chi
 That was a difficult experience for me, because that area was in the Iron Triangle, where my brother, Michael, endured some of the heaviest fighting of the war as a tank gunner during that time.  My heart sank when I saw the burned out shell of an American tank on display there.  You can imagine that I had very mixed feelings about all of this.  Nevertheless, it was heartening to see the welcoming friendliness of the Vietnamese people and the Westernized culture that has pervaded Vietnam since that time.  And American dollars were gladly accepted.

We then boarded our river boat, the Viking Mekong, for our 7-day voyage up the beautiful Mekong River.  It was not a typical Viking long boat, as it only carried 56 passengers.  While the staterooms were small, it had a beautiful sun deck where we could leisurely view the passing boats, villages, and rice paddies while sipping a refreshing adult beverage (or two).  The meals onboard were fantastic, always featuring some of the local cuisine.  It was also a treat to spend time with Bahar and Kathryn, our surprise shipmates on this tour.
Royal Palace in Phnom Penh

On the third day, we docked in Phnom Penh, the capital of Cambodia, which is a surprisingly modern city.  We toured the city by pedicab and visited the beautiful Royal Palace and Buddhist temples.  A sobering part of the trip was a visit to one of the infamous Killing Fields of Pol Pot's murderous regime.
Sunset at Kampong Cham

We then resumed our voyage up the Mekong river to Kampong Cham, Cambodia, where we visited more beautiful temples and received a blessing from Buddhist monks.

From there, we took buses to Siem Reap, Cambodia, for a 3-night stay at the elegant Sofitel Angkor resort.  The next day was a highlight of the trip, as we visited the famous Angkor Wat ruins.

Angkor Wat
While Angkor Wat was breathtakingly beautiful, we also visited several other amazing temples in the Siem Reap area, including Angkor Tom and Ta Prohm.  Our elephant ride at Angkor Tom was a fun experience.  Ta Prohm, with its ancient walls encased in tree roots, became famous as the setting for the 2001 movie,  "Lara Croft: Tomb Raider".
Our adopted "son", Song

While relaxing at the resort in Siem Reap, we met a waiter at the pool bar, Song.  He became quite attached to us.  He had a rough childhood without loving parents, and he asked us if we would be his "mom" and "dad".  We said yes, so we now have a new son!  We've been keeping in touch with him since we left.  Who knows?  Maybe we'll go back to Cambodia to visit him sometime.
Hanoi Temple of Literature

From Siem Reap, we flew to Hanoi, Vietnam for the last two days of our journey.  There we toured the Old Quarter, visited the Hanoi Hilton prison, and saw the Ho Chi Minh mausoleum before heading back home.  What a great adventure!

We made a lot of good friends on this trip and are left with some wonderful memories.  We also took quite a few pictures along the way.  I have posted a bunch of them on Shutterfly.  If you are interested, you can access them at:

After this trip, we are definitely fans of Viking Cruises.  We're already looking ahead to our next Viking adventure.  Will it be Egypt? Japan? China?  All three?  We'd also like to work in an African safari someday soon.  We can't just sit around and wait to get older and sicker and feebler.  There's a whole world out there for us to keep exploring while we still can.

After our return home on January 15, Gretchen became ill.  After a trip to the hospital, we found that she has pneumonia and bronchitis!  After taking antibiotics, she has been slowly recovering, but she still doesn't feel back to normal.  Thank goodness we came home when we did!

I also had my monthly visit to Dana Farber last week.  My numbers are still pretty good, although not as good as last month.  Nurse Mary wants me to have an echocardiogram and EKG as a precautionary measure.  Maybe all this traveling has taken a little out of both of us.  I'm still feeling great though!

I hope to update this blog again in a somewhat timely manner, although I'm not making any promises.