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Wednesday, November 18, 2015

Fall Update

I've been very remiss in updating this blog lately.  I'm not quite sure why, but it may have something to do with the fact that I seem to be in an extended remission so there is nothing new to report about my current status.  I also don't want to bore you all with technical bullshit about all the new therapies coming on line, like I did in the last post.

However, there is some great news on the myeloma therapy front that is worth reporting.  The FDA just approved daratumumab as the first immunotherapy drug for MM!  That's huge.  As of now, it's only approved for patients who have had three or more previous therapies, but that may be extended if the results continue to show the great results it has so far.  This is just another arrow in the ongoing defense against MM.  I'm feeling pretty good right now that when I finally have a relapse (I know it's only a matter of time), there will be a number of new options available, including this.

Anyway, my last visit with the Farber last week was great!  My numbers are still in the normal range and I'm still in remission.  Thank goodness!  While I was there in the waiting room, I saw Kathy Colson, who was the nurse who got me into the MLN9708 clinical trial because my initials serendipitously happened to be WO.  She was talking to another patient but when I was called in to get my vitals by "William O", she looked at me and smiled and cried out "WO"!  I don't think she'll ever forget that magical coincidence that got me into the MLN9708 clinical trial, nor will I.  I will be forever grateful.  Thank you, Kathy!

I just had a bone density test done.  The results showed that my spine is OK, but my pelvis density is low, showing some osteopenia.  That may explain why I have lost almost 3 inches in height in the last number of years.  I have to say though, my bones must not be too bad, since when I fell off the ladder a few years ago from a great height, I only just cracked some rib bones, which have now healed.  I mean really, how many people can fall about 15 feet off a ladder and still be here to say "Hey, I'm OK!"?

This weekend we are going up to the farm in Champlain, NY to close it up for the winter.  I'm sorry to see the season end, but I guess it's time to hunker down for winter.  I sure hope as hell it won't be as bad as the last one.

Happy Thanksgiving to you all!  Please enjoy the bounty of this season.

Sunday, October 11, 2015

Immunization Therapies

I haven't updated my blog in a long time.  I apologize for that.  I don't have a good explanation.  I've just been a bit lazy lately.  On the myeloma front, every thing is still OK with me, so I don't have any news to report.  I am going into the  Farber on Tuesday for my monthly checkup.  I did have Mohs surgery on the squamous-cell carcinoma on my scalp.  Everything went well.  I had 21stiches in my forehead, but it seems to be healing well, and I don't think I will be too disfigured. That's good, not that I care too much about my looks these days.

In my last post, I gave short shrift to the various immunization therapies that are under investigation for MM.  I would like to expand on that in this post.  There are three immunotherapathy drugs that have great potential being tested now:  daratumumab, elotuzumab, and SAR650984.  Each of these does something that has never been done before:  teach the body's own immune system to recognize and attack the myeloma cells.  This post might be a little bit technical, so I won't be upset if you decide to skip some or all of it.

One of the problems with MM therapies is that MM is not a single disease.  It is genetically heterogeneous with multiple clones and subclones evolving over time and under the influence of treatment.  Each patient has a unique genetic risk profile.  This is why it has not been a curable disease to date.  The current advanced treatment therapies, including a proteasone inhibitor (Velcade, Kyprolis), immunomodulatory drug (Revlimid, Thalomid, Pomalyst) and steroid (dexamethasone) have been very successful in extending overall survival (OS) for most MM patients up to 7-10 years.  These treatments have worked well in suppressing the dominant clone.  But in most patients, the disease eventually recurs because of its heterogeneousity.   What could be done to suppress all the remaining recessive clones and subclones so that it will never come back?

Monoclonal antibodies are targeted against proteins on the surface of the MM cells, which are not usually subject to genetic variability, so they are likely to be unaffected by the genetic heterogeneity of the underlying tumor.  This is huge!

Now I want to concentrate on daratumumab (dara).  This drug targets a protein, CD38, which is heavily expressed on malignant MM cells.  In a phase 1-2 study, dara was given to a cohort of patients who had received a median of 4 prior therapies, 79% of whom were refractory to both proteasome inhibitors and immunomodulators.  These patients had a particularly poor prognosis:  the Progression Free Survival (PFS) was 5 months and the OS was 9 months.

In a typical clinical trial with a new drug, a Phase 1 trial will use a single agent with variable dosing to determine a safe dose level and see what effect it might have.  For a good drug candidate, a single agent dose overall response rate (OR) of 20-25% is considered very good, which would allow it to continue trials in combination with other drugs.

In the dara trial, the OR was 36%!  Furthermore, 65% of the patients did not have disease progression after 12 months.  These results are very encouraging!  Because of this, the FDA has recently designated daratumumab as a "breakthrough" drug , allowing its compassionate use for those who have exhausted other lines of therapy.  The FDA is expected to approve dara in the near future. 

I hope to update this blog more often, but we'll see.  I'm not going to promise to adhere to a particular schedule. 


Friday, September 4, 2015


After my biopsy last week, I sported a pretty significant bandage as I went back to work for Habitat for Humanity that day.  That may not have been the best thing for me to do, as after sweating in the heat and crawling around under cabinets installing a kitchen counter top, the bandage basically fell off.  So afterwards I covered the wound with a small band aid.  The affected area is about the size of a dime and it wasn't healing well over the next few days.  The stitch actually pulled out by itself on Wednesday.  I had planned to go back today to get the suture out and get my biopsy result.  I called to see what to do, but the nurse said to just come in today and check it out.

I wasn't too surprised today when Dr. Pauline Reohr gave me the diagnosis of a squamous cell carcinoma.  I have had these before, so I know the drill.  Over 95% of these are treatable without mitastasizing as long as they are found in time.  Since it is on my face, they will do what is known as Mohs Surgery (named after the doctor who pioneered it).  This involves taking the minimum amount from the tumor and sending it to the lab in real time to see if any is left.  If so, more is taken and the process is repeated until it is all gone.

Since my wound is rather large (in my opinion), I asked Pauline whether this might be an issue.  She reassured me that it will be fine.  There is a lot of spare skin on the face and scalp, so the surgery will pull things together reducing the wrinkles, and everything will heal up normally.  As an optimist, I am thinking of this as a free face lift.  I'm looking forward to looking ten years younger again!  I'm scheduled to have this done on September 21.  Don't be surprised if you don't recognize me after this.

I have been following some of the recent blogs and news feeds about MM therapy developments.  It's really an exciting time for MM research.  The biggest buzz these days is about the new immunization drugs that are coming along.  The monoclonal antibodies, Daratumab and Elotuzumab, are both both showing great results in heavily pre-treated patients, and they will likely be approved as standard therapy options in the near future.   Immunotherapy looks to be the future of MM therapies, as well as with many other cancers.  I'm expecting to having multiple options when I finally have a relapse.

I'm really looking forward to having a wonderful Labor Day weekend here with family and friends.  The weather is supposed to be great and we are having a cook out.  I'm going to smoke my famous barbecued ribs.  This is what life is all about.  

Thursday, August 27, 2015


View of Edgartown Harbor from Our Restaurant
Again, another long absence before updating this blog.  I have no real excuse, although I spent most of last week sailing with my friend, Lew.  We sailed to Edgartown on Martha's Vineyard on his 35-foot Cape Dory boat and then on to Cuttyhunk.  It was a wonderful, relaxing time, as usual. The sailing, company, and culinary experiences were delightful.  Now that I am no longer competing in Block Island Race Week, as I have for the past 20 plus years, it is just delightful to be on a sail boat with a good friend and experience the water, winds, and tides.  It's confronting nature at its best (and sometimes worst), which makes it a primeval experience.  The uncertainty always keeps you on your toes.  I also have to say that nothing quite compares with eating fresh-caught grilled swordfish while watching the sun set over the harbor.  These are life experiences that I will never forget.

Unfortunately, because  I was sailing, I missed the seminar sponsored by the MMRF last Saturday, where Paul Richardson was espousing on all the recent advances in MM therapies.  While I'm sorry that I missed it, I also think that I am pretty up to date with the current status of MM research and treatment options.  I'm sure I would have learned something new, but I don't think I've missed any of the important new developments either.  I do try to keep up with the latest news on this.

Last week I went to the Farber for my monthly checkup, and I'm pleased to say that everything is still on track.  This is now my 38th cycle on maintenance therapy with Rev.  This was supposed to be the last cycle of my clinical trial, but I know I'm supposed to be extended for another 3 years.  My nurse, Kristen, said that they are still working on getting the paperwork together for me to sign the consent form for me to continue on to the new clinical trial.  I'm glad I brought this issue to their attention a couple of months ago, but they still haven't gotten their act together on this.  I'm sure it will work out somehow.  Paul Richardson will not let paperwork get in the way of my treatment.  I expect a smooth transition.

Today I had an appointment with my dermatologist, Dr. Reohr.  I knew there was a problem, since I have had a scaly growth on my forehead for the last couple of months.  She zeroed right in on it, and said it is either a cyst or possibly a squamous cell cancer.  She took a biopsy and stitched it up.  I have to go back next week to find out the results and get the stitch out.  I also had about 15 actinic keratoses, mostly on my face, which are pre-cancerous growths.  She treated these with spraying liquid nitrogen on them.  That wasn't a lot of fun.  For the next week or so, I'll look like I've been in a prize fight.  She wanted me to set up an appointment to come back in a year, but with all of this happening, I told her I want to come back in 6 months, so that's what I'm going to do.

Today was my Habitat for Humanity day.  I've been doing a lot of carpentry work since I started this, and I'm having a great time.  Every day is different, and I learn something new each time.  Today, I was helping to install a kitchen counter top.  There was a lot of crawling around on the floor trying to screw things in from awkward angles, but I got it done.  I'm getting a little old for this.  I had to take a nap when I got home.  But it felt good to accomplish something and contribute in a small way to helping other people. 

Tuesday, August 11, 2015

Peru Trip

It's been a long drought since my last post, but part of the explanation is that we spent more than 2 weeks traveling to Peru to see our daughter, Holly, and her fiance, Ryan.  It was an amazing and spectacular trip.  Now that we are back, I am happy to announce that we managed to dodge all of the dangerous maladies that confronted us during our visit to the rain forest, including yellow fever, malaria, hepatitis, typhoid, dengue fever, rabies, and whatever else lingers in the jungle (except that Gretchen was bitten by a fire ant).  Other than that, we made it back unscathed. Hooray for us!

Machu Picchu
It was a magical experience.  We first met up with Holly and Ryan in Cusco, and from there we took a scenic train ride to Aguas Calientes, the nearest town to Machu Picchu.  We spent the night there and took a bus up to Machu Picchu the next morning.  The guide book said to get to the bus stop around 5:00 am to get the first buses up in time to see the sunrise and avoid the crowds.  What a joke!  When we got there around 5:15, there were at least 500 people in line in front of us.  So much for the guide book.

To say that Machu Picchu is beautiful is an understatement.  The views are breathtaking.  It was a bit challenging climbing over all the rocks at that altitude (8,000 ft.), but it was well worth the visit.  I've always wanted to see these spectacular Incan ruins, so now I can cross that off my bucket list.

Group Shot at Lake Sandoval
After spending a couple of days back in Cusco, we flew to Puerto Maldonado, which is part of the Amazon basin rain forest.  Our lodging there was more like a camp, with mosquito netting for the walls and no hot water.  But who needs hot water when it's 90 degrees?  The outdoor shower was actually quite refreshing.  It turned out to be a great relaxing place to stay.  We took a day trip by boat down the river Madre de Dios to Lake Sandoval, which required a 3 km hike through the jungle for us to get to the lake.  We then toured the lake by large canoe, paddled by our guide.  We saw a variety of wildlife, including monkeys, macaws, turtles, caimans (similar to alligators), various beautiful birds, bats, and even a sloth.  It was an exciting day.

We then few back through Lima to Trujillo, in order to spend a few days at Holly and Ryan's apartment in Huanchaco, which is only minutes from the Trujillo airport.  Huanchaco is a small fishing village on the Pacific Ocean, which is a destination for surfers around the world.  Although this is the off season, there were still quite a few surfers doing their thing.  Their apartment is adorable, only 2 blocks from the ocean.  It is very comfortable and has a nice patio with an ocean view.  It was a delightful relaxing finish to what had been a whirlwind vacation until then.
Huanchaco Fishing Boats

The Huanchaco fishermen cling to their old traditions of paddling out over the surf in their odd-shaped, hand-made boats to set their nets.  Every morning, they sell their catch on the beach to local restaurants and vendors.  We had some fabulous fresh fish ceviche while we were there, which is a Peruvian specialty.  If you ever go to Peru, you have to try the ceviche.

We had an opportunity to visit Holly's Montessori pre-school and meet her students: about 27 children aged three to five.  They were adorable!  They love her, and she is obviously doing a great job with them.  We are really proud of her, both for the contribution she is making and how she has coped with this new environment.  She went down there in February speaking no Spanish and had to learn how to shop, find an apartment, and by the way, start teaching a class of children who don't speak any English.  She has learned a great deal of Spanish since, and now is able to communicate with the children as well as get us through the day as an interpreter. She's amazing!

Holly's Escuela
We found the Peruvian people to be a loud, boisterous, happy lot.  They love to make noise, and they seem to really enjoy themselves.  Things were even noisier than normal while we were there, since July 28 is their Independence Day.  They started celebrating days in advance with parades, fireworks, and numerous loud parties every place we visited.  One night, while having trouble sleeping through the mayhem in the jungle, some of us were tempted to get up, grab a drink, and go find the party!

It was a fantastic vacation.  It was wonderful to spend time with Holly and Ryan, as well as get in some good sight seeing.  I'll have to admit though, after two weeks away, it was kind of nice to get back home.

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


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.