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Monday, July 20, 2015

Visit with Dr. Richardson

It was with some relief that I got my next month's supply of Revlimid on Friday.  That means I can continue the maintenance therapy while we are in Peru. Yay!  When I went to the Farber today for my monthly checkup, Kristen, the new transplant nurse, credited me with pointing out to them that they didn't have their ducks lined up for this new follow on protocol.  Things might have worked out anyway, but it doesn't hurt to be proactive.

I'm pleased to say that my numbers looked really good again today, so the beat goes on.

I finally had a chance to meet up with Paul Richardson again. It's OK that I haven't seen him for a while, as it means I'm doing fine. It was really great to meet with him. He greeted me like a long-lost friend, which was really nice. By the way, he was only a little more than an hour late this time, which I think is s new record!  We chatted for a while about politics and the sad state of the world, including their highly-touted new software system, which everybody I've talked to so far says is awful. When he finally got around to my medical stuff, he was very pleased with my numbers and my continued remission.  Because I'm doing so well, I can now reduce my Zometa infusions from every 2 months to every 3 months.  The less often I get that IV needle, the better.

I was concerned about new data showing that while Revlimid shows great result s as a maintenance therapy, there is an enhanced risk of secondary cancers (11%), which seems quite high. Paul reassured me that much of this risk is actually due to the chemotherapy drug melphalin, which I received during my stem cell transplant, but I only received one dose, while many in the database had two or more. Besides, even accounting for that risk, the survival benefits of Rev far outweigh the risks. Also, I am on the minimum possible dose of Rev, which reduces my risk. Nevertheless, I still plan to see my dermatologist next month for my 6 month checkup.

I asked him about what he would recommend if I were to relapse soon. As I suspected, he would probably put me on Pomalyst (since I would have become refractory to Revlimid), coupled with Velcade and dex.  Since there is an ongoing clinical trial, the Pom would be free.  That wouldn't suck.

I also asked him about Kyprolis as an alternative to Velcade, since recent clinical trials have been so positive. He's not so keen on it, as it can have some very serious side effects. Two of his his patients have died from heart problems he thinks we're directly related to the Kyprolis. Velcade has side effects too, mostly peripheral neuropathy.  As he said, neuropathy is uncomfortable, but nobody has died from it. OK then.  Next subject.

I told Paul about my decision to pass up the Yellow Fever shot before going to Peru. He thought that was fine. I'll just plan to swathe myself in Deet while in the rain forest.

The Multiple Myeloma Research Foundation (MMRF) is sponsoring a free seminar next month in Boston on August 22. Dr. Richardson is hosting it. I told him I'd be there and he told me to bring as many family and friends as I could. If you are interested, let me know.

We leave for Peru tomorrow. We're really looking forward to a great trip  It will be awesome to see Holly and Ryan again. Maybe I'll have a picture or two for my next blog post.

Monday, July 13, 2015

Anniversary

Today, July 13, marks the 4th anniversary of my diagnosis with Multiple Myeloma.  It has been an eventful journey since then.  I'm still amazed that it was my initials, W.O., that allowed me to enlist in the Phase I clinical trial for MLN9708.  If you are new to this blog, I'll repeat the story.  the Farber had just filled its allotted slot in this clinical trial, and the next patient was to be selected from another participating cancer center.  However, the day before my appointment, the patient from the Farber backed out.  Normally, they wouldn't be able to nominate another candidate, but the only information they had provided about that patient were his initials:  W.O.  Since I have the same initials, they were able to substitute me into his slot.  How do you figure that?  Hello?

That turned out to be a serendipitous coincidence.  At that time, the oral proteasome inhibitor, MLN9708, was in early stage Phase 1 clinical trials as a possible oral substitute for the infused proteasome inhibitor, Velcade, which has become part of the accepted standard of care for MM.  I responded remarkable well to the MLN9708, achieving a stringent Complete Response after 7 cycles.  It worked amazingly well for me!  Since then, MLN9708 has fared very well in subsequent trials and may receive FDA approval as an alternative for Velcade in the next few months. 

Next, I became eligible to enroll in a transplant clinical trial which had three arms, each including one or two autologous stem cell transplants (ASCT).  I was fortunate enough to get selected for the arm that Dr. Richardson felt was the best of the 3:  a single ASCT, followed by 3 consolidation cycles with Velcade/Revlimid/dexamethasone, and then followed up by 3 years of Revlimid maintenance. He felt that this was the best way to hit MM the hardest and knock it down for the longest time.

Here I am at the end of the three years. I'm thrilled to say that I am still doing great!  Originally, this trial was supposed to end after 36 months, in which case, the plan was that I would go off the maintenance therapy this month.  However, this trial has just been extended for another 3 years, so I should continue to get Revlimid maintenance (free of charge!) as long as I stay in remission.  Awesome!  ( I don't even want to think about how much it would cost if I had to pay for it!)

I can't tell you how lucky I feel to be in this situation.  The combination of being at one of the world's premier cancer centers at the Farber, finding the incomparable Dr. Richardson as my oncologist, getting the benefit of new world-class anti-MM drug treatments, and just being in the right place at the right time is overwhelming for me.  I am so grateful for all of it.

On Tuesday, July 21, we head off to Peru for two weeks to visit our daughter, Holly, and her fiance, Ryan.  We are very excited about this trip!  We haven't seen Holly since she went down there in February to teach at a Montessori pre-school.  This should be so awesome!  We plan to visit Cusco and Machu Picchu, as well as Puerto Maldonado in the rain forest.  We will also spend a few days at their apartment in Huanchaco (near Trujillo) on the Pacific ocean.

We both have gotten all our shots--except one.  I haven't gotten the yellow fever shot (not required for Peru), and I am now thinking to forgo that, based on my research on how few unvaccinated tourists have gotten the disease in South America.  Not to mention that when I went to the clinic the last time, the NP thought the yellow fever shot was contraindicated for me because of my age and compromised immune system.  Also, we aren't actually staying in the rain forest, but in the town of Puerto Maldonado.  We're taking plenty of Deet bug spray for ourselves and our clothes.  I don't think I want to take the chance of having a bad reaction to the shot, so I might cancel my appointment on Friday.  Any thoughts about this?

Before we leave, I am scheduled to see Paul Richardson next Monday.  I'm really looking forward to seeing him, since it has been a long time since my last appointment.  That's actually a good thing, since I have been doing so well for so long.  I do have a few questions for him.  If I have a chance, I'll update my blog before we leave for Peru.  If not, adios amigos.



















Monday, July 6, 2015

Vacation time

Over the last couple of weeks, we have taken some time to chill.  Two weeks ago we went back to one of our favorite places in the world, the Newagen Seaside Inn in Boothbay Harbor Maine.  We went with two of our friends. Barbara and Andy, and had a wonderful, relaxing time on the beautiful coast of Maine.  The weather was great and we took a delightful schooner sail boat ride around the harbor.  A lobster dinner was a must!  We used to go there every year, but ever since we moved onto the river in West Newbury, we stopped going.  But now that we have moved, revisiting the Newagen Inn was a real treat.

Logan and Pam on the ATV
This past weekend, we went to the farm (our summer place) in upstate Champlain, NY.  Jeff & Christine, and Brian, Pam, & Logan were all there.  The weather was perfect and we had a great time, as usual.  Logan seems to enjoy the farm.  I hope he grows up to love it as Jeff and Brian and I have.  The house was built by my great grandfather in about 1880, so Logan is a fifth generation descendant.  It would be nice to keep the family tradition going.  Our neighbors across the road, Betty and Ed, hosted a wonderful fireworks display on the 4th.

We are supposed to head off to Peru to visit Holly and Ryan in two weeks.  We're hoping to have a wonderful time with them visiting Machu Picchu, the rain forest, and their coastal village of Huanchaco. 

One problem is that my passport expires this week, so I filed a renewal application on May 30.  I have heard nothing since then, so I am getting a bit nervous.  I know they cashed my check on June 3, so I would assume that it's being processed, but when I went on their website today, they didn't have a record of it in the system!  Yikes!  I decided to call my congressman to have him look into it, but in the meantime, after calling about a dozen times and waiting on hold for a half hour, I finally talked to a human being!  He told me that my passport was sent out in the mail today!  Hooray!

Now get this.  He gave me a tracking number for the USPS website.  This is the longest tracking number I have ever seen:  4200198500009205596900893491581302.  OK, let me ask you, why the hell do they have to have a 34-digit tracking number?  I mean seriously.  Again, WTF?  Who comes up with this shit?  Anyway, after laboriously typing it in, I got the response that it is on the way and should be here by Wednesday.  Yippee!  I guess I (we) get to go to Peru after all.

I finally got approval from the Farber to get my yellow fever shot before we go to Peru.  I have scheduled it for July 17, just before we leave.  However, I have been having second thoughts.  I went onto a website that said that there have been 4 cases of yellow fever in South America from unvaccinated tourists since 1975.  That's one every ten years.  Hello!  So why should I take the chance of an adverse reaction to the shot when the probability of getting YF is almost nil?  I may just skip this appointment!  I mean really...why does the CDC recommend getting this shot when the probability of getting YF is so low, especially since the shot itself can give you YF?  Hello again!

I'm meeting with Dr. Richardson on July 20, the day before our trip.  I have a number of questions for him, since I haven't seen him in a long time.  The Farber just installed a new computer system, which means everything is pretty well fucked up.  I have to keep on top of all my appointments, medication schedules, clinical trial paperwork, etc., but in the end, it will still probably get messed up  Oh well.  That's life.  I learned a long time ago that you have to take responsibility for your own medical care.  Even at the world-renowned Farber, you have to stay on top of things all the time.

Tuesday, June 23, 2015

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!


Tuesday, June 9, 2015

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.




Wednesday, May 27, 2015

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!





Thursday, May 14, 2015

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...


Sunday, April 26, 2015

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.

                                              

Tuesday, April 14, 2015

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.





Tuesday, March 31, 2015

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!