Visit 36

At my monthly Farber visit yesterday I began the 36th month on my Revlimid clinical trial maintenance protocol.  Fortunately, things are still going well.  The X-Ray skeletal survey I had last month showed no change from last year, which is great.!  All my other tests are still good.  I almost feel guilty saying that, since there are so many MM patients dealing with difficult issues on a daily basis.  I know this could be the calm before the storm, and that any time, the torrent could be unleashed.  I'm just very grateful.

The 3-year maintenance clinical trial I'm on runs out next month.  Originally, it was planned that everyone would go off the Rev at that point and just wait until a relapse.  I have done research (surprise) and I know that there is a follow-on clinical trial that will pick up at the end of this trial and continue it for another 3 years.  However, nobody at the Farber seemed to know any details about this.  Unfortunately, my favorite nurse, Muriel, who handled all of the clinical trial details, retired last month.  I'm really happy for her, but she will be sorely missed by all of us.

Her replacement, Kristen, seems great, but when I asked her yesterday about the follow-on trial, she wasn't aware of it.  I showed her the paperwork which requires me to sign another consent form before continuing with the new trial.  My concern was that unless I dealt with this, I might not get my next month's supply of Revlimid before we head off to Peru on July 21.  Anyway, Kristen looked into it and emailed me today to say that they will continue to supply the Rev and I can sign the consent form next month.  Problem resolved! Although maybe the problem was all of my own making.  If I had simply done nothing, it may have worked out just fine.  But I'd like to think that I saved the day.  Humor me, please.

While there, I got the last of the childhood immunization vaccines that I needed since my ASCT.  It was the Zoster vaccine for shingles, which is a live vaccine.  They have been saving all the live vaccines for the end, because my immune system is still somewhat suppressed.  I am now fully functional as a vaccinated adult.

Good thing, because, today, Gretchen and I went to the Lahey travel clinic to get our immunizations shots for our trip to Peru.  That was a laugh and a half!  Let me put the record straight...there are no required immunizations to visit Peru.  The only one that is highly recommended by the CDC is the yellow fever shot.  That's the one I most wanted to get.

However, when we got there, our nurse practitioner barraged us with a panoply of impressive maladies that could befall us on our trip.  If we had visited her before we made our reservations, we might have had our reservations (so to speak).  If one is visiting Machu Picchu and the rain forest, as we are planning, there are a plethora of possible concerns, including yellow fever, typhoid, Hepatitis A, Hepatitis B, malaria, tetanus, altitude sickness, diarrhea, and rabies, not to mention dengue fever and some kind of monkey fever.   Why would anyone ever want to go to Peru? You might never come back alive!

Anyway, Gretchen ended up with 5 shots and 3 prescriptions.  I think she's in good shape.  However, the NP didn't want to give me the yellow fever shot, the only one I really wanted!  She felt that with my chemo and my age, the shot was "contraindicated".  Bullshit!  Anyway, I emailed Dr. Richardson to get his opinion, and he responded that he thought it was OK, but he cc'd it to his staff to confirm.  That wasn't enough for her, who wanted more affirmative approval from the Farber.  There wasn't enough time to get a response from the infectious disease staff today.  I almost insisted on getting the shot anyway over her objections, but I relented and said I'd come back another time.  I ended up with  2 shots (Hep A and typhoid) and the 3 prescriptions (malaria, altitude, and diarrhea).  The only shot I didn't get was the yellow fever!  Go figure.  I'll probably end up getting dengue fever anyway.  There's no vaccine for that.

On another note, I began volunteering last week for Habitat for Humanity.  They are converting an old convent in Lawrence, MA into 10 condo units.  This project has been going on for a couple of years now, but it is supposed to be completed this fall.  My first project was to help install a floating laminate floor in one of the units.  Here's a picture of the results of my first morning's work with Dan, who taught me a lot.  I'm excited to be back doing volunteer work and contributing back to the community.  I plan to volunteer once a week.  Since I also like building projects, this should be a rewarding experience for me.  The guys I have met so far are great, and it doesn't suck that they usually go down to a local Irish pub for a beer after work.  Now I could really get in to all of this!

ASCO Conference

The annual conference of the American Society of Clinical Oncologists (ASCO) was held last week in Chicago.  Multiple Myeloma was only one of the cancers represented, but there were some interesting MM results presented.

Promising results were presented for two of the leading monoclonal antibodies, elotuzomab and datatumumab.  These two immunotherapies, both of which target the protein CD38, which appears on many MM cancer cells, are both headed for early approval by the FDA.  These two drugs could become potential front line MM immunotherapies in the near future.  A couple of other studies showed the benefits of Kyprolis (carfilzomib) over Velcade, which is good since Kyprolis doesn't have the adverse side effects of peripheral neurophathy that plagues Velcade users.  Kyprolis could soon become the standard front-line therapy option for MM. 

Of most interest to me was the CALGB study, which compared Revlimid vs. a placebo for long-term maintenance after an autologous stem cell transplant (ASCT).  Here is a link to the abstract:

CALGB Revlimid maintenance study

It was comforting to note that long-term maintenance with Rev provided significant benefits for relapse times and overall survival.  However, the downside is that there is an increased possibility for secondary cancers for those on the Rev arm.  Most of the participants in this study are on a regimen of 15 mg/day of Revlimid.  However, because of my issues with low neutrophil counts, I have been on a reduced dose of 5 mg/day for the last 3 years.  On the one hand, that's good, as it probably reduces my risk of a secondary cancer event.  On the other hand, am I getting enough benefit from the Rev at such a low dose?  I think I might want to ask this question of Paul Richardson when I see him in a couple of weeks.

We are preparing for our trip to Peru in July to visit our daughter, Holly, and her fiance, Ryan.  Holly has been there since February teaching pre-school kids in a Montessori school.  We miss her a lot and are really looking forward to our trip.  There are some issues though.  We would like to visit Machu Picchu and also the Amazon rain forest while we are there.  There are immunization shots we have to take, such as yellow fever, and maybe updates on some others  We also need protection from malaria and high altitude.  I think by now I have most of the childhood shots needed, since I had to start from scratch since my ASCT.  I believe I have one more left (I'm not sure which one) which I should get on my next visit to the Farber this month.  Hopefully, I'll be OK to go.  I worry about Gretchen though with her brain injury, but she emailed her brain surgeon to ask if it was OK to go to the high altitudes in Peru.  He responded to say it would be fine.  Whew!  We've scheduled an appointment for June 23 to get the requisite immunizations.  I just hope that between the altitude, the mosquitoes, the heat, and the rain that we will all survive intact.  Personally, I'm really excited about this trip to spend time with family and see some of the wonders of the world.

Celgene Opportunity

The new owners of our old house on the river, Nancy and Shirley, have become good friends.  We had them over for dinner a couple of weeks ago and we got to talking.  Nancy works for Genentech as an advocate for cancer patients to help them afford the costs of their medications.  She has a good friend, Jeff, who works for Celgene, who makes the Revlimid that I have been taking ever since my diagnosis with MM.

Nancy thought that I might make a good patient ambassador for Celgene, given my MM story and history.  She set up a dinner meeting for all of us last night in Kennebunk, Maine at a great restaurant, "When Pigs Fly".  There I met Phil and another manager from Celgene, Tina.  As it turns out, Celgene doesn't have a formal patient ambassador program in place at this time, but they were both very interested in my MM story and will look into any opportunities for me to get involved to provide a patient perspective at some of their meetings.  If it works out, great, but if not, I will find other ways to give back to the MM community.  Whatever happens, the food was awesome and it was a wonderful evening.

I had my monthly visit to the Farber today.  Fortunately, my numbers are still good (knock on wood).  Since it has been a year since my last X-Ray bone scan, I had that done today.  I also had two more immunizations left to be done, so I had my pneumonia shot today.  I now have just one more live virus shot left to do to complete my immunization program since my stem cell transplant.  I plan to get that next month, so I should be in good shape for us to head off to Peru in July.

I am nearing the end of my 3-year stint on the three-armed stem cell transplant clinical trial BMT-CTN 0702.  Since Paul Richardson told me last month at the MMRF race/walk that I would be continuing maintenance therapy with Revlimid, I went online to find out what the story was.  As it turns out, the Protocol 0702 that I'm on runs out after 38 months following assignment to one of the 3 arms of the protocol.  I'm now getting to this point.  However, there is now an extension to this clinical trial that extends it until 2018.  I think what has happened is that Celgene has now decided to extend providing Revlimid for free to trial participants for another 3 years.  They have assigned a new protocol number for this extension.  I believe the new clinical trial is Protocol BMT CTN 07LT.  I presume a new consent form will be required for me to join the trial.  I brought this up with my nurse, Mary, today, but she didn't know anything about it.  I have a feeling I'm way ahead of them on this.  I will have ample opportunity to discuss this with Paul Richardson when I meet with him next month.  We'll see.

On a sad note. one of my favorite people at the Farber, nurse Muriel Gannon, is retiring.  She wasn't there today, so I didn't have a chance to say goodbye to her in person.  She has been a constant helpful presence for me during my entire transplant journey, so I will miss her a lot.  I know the people at the Farber will miss her a lot too.  Have a wonderful retirement, Muriel!

Pittsburgh Marathon

It's been too long since I last posted.  I apologize for that.  I have no valid excuse except that I have been overwhelmed by our new house, especially with the explosion of springtime plants and flowers as the warm weather has arrived.  There are beautiful gardens here left by the previous owners which are now springing into life.  How beautiful!  I feel the need to take care of these and nurture them.  I  am now their caretaker and I don't want to fail them.  There is a legacy here to be preserved.  It's also a good thing, as it is keeping me busy.  It's been very dry over the last month, so I have been watering a lot.  Fortunately, we have a well for watering the lawn and plants, so I don't have to worry about the water bill.

It is beautiful here...we love it!  It's so peaceful to just sit and look at the woods.  It's very different from the "River House" that we just left.  The Merrimack River was beautiful, but it wasn't always peaceful.  The current was often strong and the wind would gust in from the water and whip up the waves.  It was exciting at times, but not always calm.  We are really enjoying the total relaxation of just looking at the beautiful quiet woods adjoining our back yard.

Over the first weekend in May, I went to Pittsburgh to watch the Pittsburgh Marathon.  Unfortunately, Gretchen couldn't come because she had some previous commitments here.  It was a great trip, as I got to visit my brother Terry and his wife Sherry for a couple of days beforehand.  The 3 of us got play 18 holes of golf on a beautiful Friday.  That didn't suck!  Then on Saturday, I had the pleasure of having dinner with the rest of my extended family.  My sister-in-law Kathy and my niece Meghan and her husband Jon were there with their 2-year old son Chase whom I met for the first time.  I also got to meet my brother Terry's step granddaughter Briarly, also for the first time.  My God, it's been much too long since I have been back to my old home town to catch up with my family.  That was so awesome!

The marathon was wonderful!  40,000 runners competed, and it was amazing.  The weather was fantastic.  My son Brian and his wife Pam both ran the half marathon.  Pam's sister Michelle (who lives in Boston) ran the full marathon (gulp), and Terry's step daughter Bree ran a relay leg in the full marathon.  What a running family!

I had the pleasure of babysitting my grandson Logan for the night before and during the marathon.  I was nervous but it worked out great.  We got up early to get into Pittsburgh in time to see Brian and Pam run. Here is a picture I got at the 3.5 mile point in their run.  Look at them.  My God, it must be great to be young!

This brings up another point.  In my last post, I chronicled the MMRF 5K walk/run fundraiser event we recently attended in Boston.  While we were in Pittsburgh, my family of runners agreed that they would like to come to Boston next April to run in the next MMRF 5K event.  That would be awesome!  I have already emailed Anne Riskin to suggest that we could all join their team of Jeff's Juggernauts to raise money in memory of her husband Jeff who died of MM several years ago.  She will be delighted to have us join her team.  This should be a great opportunity for us to combine a worthy MM fundraising event with a family reunion.  I will keep you informed when we learn the particulars of next year's event, which should be announced some time in January.  I'm really excited about this!  I'm even thinking about training to run the 5K rather than walk it, but don't hold me to that.  It's just a wild thought.

Last week there was a Frontline program featuring the newsman Tom Brokaw, who has Multiple Myeloma.  I think it is awesome that he has gone public to raise awareness of MM.  I missed the broadcast, but the MMRF has made it available to view online.  Here is the link:  http://www.themmrf.org/tom-brokaw/.  It's a very good and personal look at his journey.  If you haven't seen it, I would definitely recommend watching it.  He is a great spokesman for MM patients.  His journey was more difficult than mine, but I'm glad to hear that like me, he is in remission at this time.  He has also written a book that I may buy to get the details of his story.

Until next time...

MMRF 5K Walk/Run

In my last post, I talked about the Boston MMRF Race for Research which happened today.  We got up this morning earlier than I like to get to South Boston in time for the race.  What an experience!  Over 2,000 runners and walkers set out on this picturesque harbor-side course to support this worthy cause.

Although it was chilly, the weather was great for the race.  Our friend, Anne Riskin, lost her husband, Jeff, to MM a few years ago.  She and her family started Jeff's Juggernauts as a fundraiser for the Multiple Myeloma Research Foundation (MMRF) after his diagnosis.  Jeff's Juggernauts did a really terrific job in fundraising this year, bringing in over $19,000 for MM research!    They are actually one of the most successful fundraising teams in the entire event.

Doing my job

I didn't do the walk, but I have a valid excuse.  I was honored to be assigned to the prestigious duty of holding one end of the finish line tape.  Anne Riskin held the other end.  If I had actually run (yeah right!) or walked in this event, I would not have been available for this important task, for which I think I was eminently qualified.  Things have a way of working out.  ;-)

There are 9 of these MMRF fundraising races held across the country, but the one in Boston is the largest and most successful.  All of the funds raised from this event go specifically into research to find a cure for Multiple Myeloma.  That makes this a particularly important cause for me.

Susan Riskin finishing the 5K

It was really special to be there today.  We watched people of all stripes, athletes and non-athletes, young and old, able and disabled, patients and caregivers, all there for a common purpose:  Let's just beat the hell out of this disease!

It was a pleasure to meet Anne Riskin's daughters today, Karen and Susan, along with the rest of her family and friends.  Susan, who is a marathoner (New York, Boston, et al) ran today.  Here is a picture of her finishing for Jeff's Juggernauts in honor of her father.

After the race, we went back to Anne's house for a brunch, where we got to know their family and friends better.  I'm really psyched to get involved in this next year.  Many years ago, I would have been delighted to enter the race as a runner, but I don't see a running future in my cards.  However, maybe I could do a fast walk.  I want to do all I can to raise awareness of this insidious disease and help fund the research necessary to find a cure.

Paul and me

Dr. Richardson has long been a big supporter and participant in this event, and he was there again today.  I heard that he took the red-eye back from California last night to be here in time to participate.  He spoke to the crowd before the race, but unfortunately, we didn't get there until afterwards.

However, I did have a chance to speak with Paul.  He was really pleased with how well I am doing, and I told him I was about ready to finish my clinical trial including 3 years of Revlimid maintenance and then go off the Rev, which was the original plan.  But Paul said that we need to talk about this, because recent data have shown that continuing maintenance with Rev is better than stopping it.  OK now! That's news.  Maybe Gretchen is right, as she has been concerned about my going off the Rev.

From my previous research, the thought was that continuing Rev maintenance too long might result in one's becoming refractory to it, so it might not work any more if relapse occurred.  Maybe the current thinking has to do with the fact that an alternative IMID, Pomalyst, is now available in case one becomes refractory to Rev. I'm just speculating here.  Anyway, I will be having this conversation with Paul over the next couple of months to see what's next.  I'm anxious to find out what their research is showing and what might be my options.  I'm really looking forward to talking to Paul about all of this soon.

Namaste.

                                              

Bone Marrow Biopsy

Yesterday, spring finally arrived in Massachusetts.  With temps in the 70s, many of us human denizens cautiously emerged from our wintry dens to marvel at that strange bright orb in the sky.  The remaining banks of dirty snow are finally shrinking like the Wicked Witch of the West.  The epic Winter of 2015 is becoming just a nightmare memory.  Thank goodness!

We finally got everything moved out of our former residence into our new house at 10 Dole Place, West Newbury, MA  01985.  What a relief!  We are settling in nicely and we love our new home!  We're slowly figuring out where everything ended up as we continue to unpack. We had Easter dinner here for 13 of us, and it was quite a zoo trying to figure out where all the cookware and serving bowls were, but it worked out great.  My traditional smoked lamb came out awesome, if I do say so myself, as did everything else.  It was a delightful family gathering.

My test results from my recent bone biopsy have now been posted on the Farber Patient Gateway website.  I was pleased and relieved to see that the results are still great!  The Flow Cytometry results show no evidence of any residual disease.  The final note indicates that "Diagnostic histologic features of involvement by a plasma cell neoplasm are not seen."  In layman's terms, "There ain't nothin' there".  That's awesome!  It has now been 3 full years since my ASCT, and I'm still in remission, or as it may be medically described, stringent complete response (sCR) with no minimal residual disease (MRD).  However you describe it, I'm extremely grateful for that.

I do have one teeny tinsy concern, though.  It was noted that the bone marrow aspirate smear findings showed "mildly increased plasma cells" of 6%.  One of the criteria for stringent Complete Response (sCR) is for there to be less than 5% of plasma cells in the marrow.  So maybe I'm not in sCR after all.  I went back to my 2013 biopsy results, which showed only 3% plasma cells.  Hmmm.  Is this of concern?  I was going to email Dr. Richardson and ask him about this, but I then went back to my 2012 results, which showed 5% plasma cells.  It seems as if these numbers have bounced around within a very small range over the last 2 years, so I decided not to be a worry wart about it.  I might just mention it to Mary at my next visit on April 27 though, just in case nobody noticed it.  As a reference point, when I first checked in to the Farber in July 2011, my bone marrow biopsy showed that my marrow was 62% plasma cells.  Yikes!  I'll take 6% over that any day.

In a few short months, I will be at the end of the 3-year stem cell transplant clinical trial.  At that time, I will go off the Revlimid maintenance regimen completely.  Then I'll be on my own.  It will be a little bit like the first time I flew an airplane solo.  I was a bit nervous.  How is this landing going to go without my flight instructor?  I was just hoping I didn't crash and burn.  I didn't, so hopefully this will go the same way.  I guess we'll find out. 

Since my MM diagnosis, we have become friendly through a mutual friend with Anne Riskin, whose husband, Jeff, succumbed to MM about 6 years ago.  She and her family have been very active for many years in fundraising for the Multiple Myeloma Research Foundation (MMRF).  The MMRF sponsors wonderful research which has resulted in great advances in MM treatment therapies.  Every year, the MMRF holds 5K walk/run race in Boston to raise money for MM research.  This year's race will be held in South Boston on April 26.  Dr. Richardson is the honorary chair of this event and will speak before the race.  Here is a link to this year's MMRF race website:  MMRF Boston 5K Walk/Run 2015.

Anne and her family have formed a team called Jeff's Juggernauts, who participate in this race yearly to raise funds for MM research.  Unfortunately, we have had conflicts over the past couple of years and haven't been able to attend.  This year, however, we plan to be there for this exciting event on April 26.  We have made a contribution to Jeff's Juggernauts, but we won't actually do the walk (forget about run) this year, but maybe we will join Jeff's Juggernauts as active participants next year and try to raise money for the cause ourselves.  Here is a link to their website:  Jeff's Juggernauts.  I would encourage you to visit this website and make a contribution if you can to help them meet their fundraising goal for this year.  It would be greatly appreciated by me, as well as Anne and her family, and all those who suffer the burden of MM along with their loved ones.  Thank you.

Farber Visit

Yesterday I went to the Farber again for my monthly checkup and (gulp!) a bone marrow biopsy.  Fortunately, my blood test numbers still look great.  The biopsy was another matter altogether.  My nurse practitioner, Katherine, was very sweet, but I missed Zack.  Zack was very good, so I was apprehensive without him.  My concern may have contributed to my being more sensitive to the pain of the procedure.  Ouch!  In any case, it was pretty uncomfortable, so Katherine suggested that the next time I should consider using medication.  I agreed with her, so next time I plan to be in la la land during the biopsy and it will be great!  I think I'm done with this macho routine.  As I get older, I think I'm ready to let go of my readiness to meet the challenges of life with all this bravado.  OK, just give me medicine.  It's not like I'm a war prisoner trying to protect our country's secrets.  I don't think I'd be very good at that.  So just knock me out, OK?

In my last post, I failed to note a significant milestone in my life.  On March 20, I celebrated my 3rd birthday anniversary of my new immune system.  We were in Hawaii at the time, so the event kind of passed unnoticed.  I'd like to take the time now to celebrate that.  Yippee!  Happy third birthday to me!  I am still in remission, which is awesome!  In another few months, I will be done with the Protocol I'm on, and I will stop taking the Revlimid.  After that, I will just go on living my life and wait for the inevitable to happen...eventual remission.

How long will that take?  I don't know.  I just read an online article about the utility of using flow cytometry to measure Minimal Residual Disease (MRD) in MM.  Here is a link to the article:
http://www.bloodjournal.org/content/125/12/1932?sso-checked=true.  The basic message is that no MRD after initial induction is a really good thing and provides an independent measure of future prognosis.

Fortunately, I was diagnosed with no MRD after my initial MLN9708 treatment and also after my ASCT.  So I should be on the upside of the survival statistics.  Yes, I am, but from these data, that doesn't bring me a whole lot of comfort.  For those who achieved MRD, the median Progression Free Survival (PFS) was about 5 years, and the Overall Survival (OS) was about 7-8 years.  Wholly crap!  Based on these statistics, I don't have a lot of time left.  On the bright side, these data were based on earlier treatment regimens and don't account for all the new research and the myriad of recent treatments available for MM patients.  Therefore, I remain hopeful for a number of years of PFS remaining, and when the inevitable recurs, I expect a host of new options to extend my OS for a long time. So that's my optimistic assessment on all this.

There is a great miniseries now airing on PBS:  "Cancer, The Emperor of All Maladies".  It is presented in three 2-hour segments which aired yesterday, today and tomorrow.  I read the book and it is outstanding.  If you aren't watching it, look for it to repeat.  It illustrates how important Dr. Sidney Farber's influence was in the fight against cancer, along with many others.  It's a very thorough analysis of a very difficult disease but gives a lot of hope for the future.

It's all good!

Back from Hawaii

Sunrise over Haleakala volcano

After 8 days in beautiful Maui, we're back to the frozen tundra of Massachusetts.  Whoopee!  The calendar says it's spring now, but you'd never know it.  There is still snow on our roof!  Oh well. It was a wonderful family vacation.  One of the highlights was to take a tour to the top of the 10,000 foot altitude inactive volcano, Haleakala, to watch the sunrise.  We had to leave our hotel at 2:30 am (grog!), but it was so worth it.  What a beautiful sight!  Unforgettable.  Some of our group took a different tour which provided bicycle rides down the mountain after the sunrise.  We didn't do that, but I can live with it.

Sunset from the Marriott Hotel

We spent most of
the rest of our time at the Ka'anapoli Hyatt Regency hotel beach and pools, which was lovely.  I basically parked my ass on the beach while watching the younger, fitter members of our family swim, snorkel and surf the waves.  I was somewhat wistful thinking about how I would have been out there doing all that in days past.  Damn!  Some parts of getting older are not that much fun.

I passed a milestone while in Hawaii.  On March 20, I celebrated my 3rd birthday with my new stem cells!  I almost forgot about it, until someone reminded me.  One should never forget ones birthday.  Happy birthday to me!  I am so lucky to still be in complete response after three years.

All in all, it's good to be back home.  While we were away, our home decorator, Amy, did a lot to help unpack, organize and add homey touches to the house.  It looked great when we got back!  We love our new home, and we are starting to get settled in.  For anybody who cares, our new address is 10 Dole Place, West Newbury, MA  01985. 

Next Monday, I go back to the Farber for a bone marrow biopsy (ugh!)  My favorite PA, Zack, is no longer at the Farber, so I have to trust myself to one of the other PAs.  At best, the experience is not pleasant, but I just hope it is not too painful.  I'm also scheduled to get my final set of immunization shots, which include live viruses.  Mary and Muriel decided to postpone those shots until after our vacation because of possible adverse reactions to the shots. 

It's all good.

Prostate Followup

As you know, I had an elevated PSA (prostate specific antigen) test result of 10.5 last November.  That's above the normal range of 6.5-7.5 for someone my age, and well above the 2.0 result of my last test back in 2009.  We decided then to wait a couple of months and retest to see if that result was an anomaly or indicative of a possible problem (i.e., prostate cancer).

Last week I had my blood drawn for the PSA test again, and today I followed up with my PA, Susan Palmer to get the results.  She burst into the exam room and blurted out, "Don't you just love good news"?  I responded, "Does that mean that you bring me good tidings of great joy?", or something to that effect.  We sat down at her computer and she showed me the latest results.  My PSA level has dropped nearly in half to 5.3!  Wow!  That is the kind of tiding I like to get. She didn't have an explanation for why there was such a dramatic difference, but she did say that if prostate cancer was present, the numbers would keep going up, not drop like that. 

We then had a discussion about what to do next, if anything.  They typically advise that men aged 75 or older stop taking the PSA test, because even if prostate cancer is diagnosed, life expectancy is not necessarily increased by undergoing treatment, which has its own risks and side effects.  Their recommended cutoff age for PSA testing is even younger for men with "comorbidities".  That's a fancy medical term for a concomitant but unrelated pathology or disease that may shorten life expectancy.  In my case, the elephant comorbidity in the room rhymes with Multiple Myeloma.  Based on that, I would have a good reason at the age of 72 to say "Sayonara, Susan", and forget about ever getting my PSA tested again in the future.  After all, look at the much ado about nothing that all this botheration came to.  If I hadn't had that test done in November, I would still be fat, dumb, and happy.

However, I'm optimistic, and I'm not ready to treat my MM comorbidity as an early death sentence.  At least not yet.  Considering that I am still in stringent complete response and with all the recent progress in developing new drugs and treatment options, I'm planning on giving Methuselah a run for his money.  Therefore, I have opted to get my PSA tested again a year from now.  If it's OK then, I may do it again one more time and then fuggedaboutit!

We are slowly moving into our new house.  We are still surrounded by random unmarked boxes and of course, I can't find anything.  Today the house cleaners came to Old Wharf Road for the final cleaning, and we had a new granite kitchen installed at the new house.  However, the plumber still has to come to hook up the fixtures.  Tomorrow the lawnmower guy will pick up my riding mower from the old house to do a spring service and then deliver it back to the new house sometime.  Wednesday, we do the final walk through with the new owner, Nancy, and turn over the keys.  We still have to pack, as we are leaving for a Hawaiia vacation with the family on Thursday.  I have to say that we are both in a bit of a tizzy right now.  We haven't yet had a chance to look forward to our vacation, but I think that it is going to feel really good to leave this winter from Hell behind us and sink our toes into the soft warm sandy beaches of Maui.  Aaaah.  Aloha!

I'm Back

When I last blogged, I was looking forward to leaving the subzero weather in Massachusetts to golf in 40 degree weather in Ocean Isle Beach, North Carolina.  Well, as it turns out, that was pretty optimistic as the weather was mostly in the 30's there last week.  Considering that it was 9 degrees below zero here the morning I left here (!!), I can't really complain.  Thank goodness I packed warm clothes!  We had two decent golf days with weather in the 40's, but we had to really bundle up for the rest of the week.  One day got washed out completely with torrential rains, and the fairways were pretty slushy for most of the week.  But you know what?  We still had a great time!  It's an awesome group and we enjoyed each others' company, with lots of jokes, ribbing, and banter.  The meals, prepared by our resident cooks, Paul and Joe, were delicious as usual.  What a great time!  It was a nice respite from the craziness of the move.  I felt bad about leaving Gretchen alone to deal with all the unpacking, but she assures me that she was fine with it.  She had a lot of friends helping her last week, and she said she had a lot of fun, so I guess it worked out well.

I went to the Farber yesterday for my checkup and Zometa infusion.  I'm happy to say that my numbers are still great!  My recent iron infusion has still overcome my previous anemia, so those numbers remain good as well.  My most very favorite nurse, Heather, administered my Zometa infusion, and she asked how I was doing.  She was very happy for me, but she also told me about how many patients she sees who are not doing so well.  It then really hit me again how very lucky I am right now!  I need to count my blessings every day that I am still disease free!  It has been almost 3 years since my stem cell transplant, which is amazing.  Thank you Paul Richardson, thank you for the clinical trial with MLN9708, thank you for the stem cell transplant clinical trial, and thank you Dana Farber Cancer Institute.  What more can I say?

I recently blogged about my MM patient friend, Steve, from Buffalo, who enlisted in a clinical trial for MM at the Farber for the experimental drug, ibrutinib.  Here is a link to that posting:  Ibrutinib clinical trial.  Unfortunately, Steve didn't find a benefit for himself from this trial, so he has dropped out, but there is encouraging news about ibrutinib.  I picked up the most recent issue of "Inside the Institute" at the Farber yesterday, and it had an article about the FDA approving ibrutinib for a rare blood cancer closely related to MM: Waldenstrom's macroglobulinemia.  Ibrutinib targets a protein called BTK in malignant B cells.  It has already been approved for three other types of blood cancers.    This shows that a single agent can be effective against multiple types of cancers, providing they spring from the same molecular mechanism.  There is still hope that it can be effective against MM.

There are more and more results coming out these days about therapies that work for multiple cancer types.  Ibrutinib is just another example.  Despite my friend Steve's disappointing experience, this drug may provide some benefit to other MM patients.  It is just another arrow in the growing quiver of drugs that may provide either a control or possibly even a cure for Multiple Myeloma.  Let's hope.