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.