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Sunday, December 13, 2015

Patient Education Symposium

I spent yesterday at the Farber's Multiple Myeloma Patient Education Symposium.  As usual, it was a fascinating, informative day, which incorporated the latest results from the recent ASH conference in Orlando.  The mood in the MM research and clinical community is ebullient these days.  It has been a banner year for MM advances.  There have been 7 FDA approvals for novel MM therapies this year alone, 3 in the last month!  The total arsenal of available novel drugs to treat this disease has just expanded by 45%.  No wonder everyone is really excited.  There was a palpable buzz of energy and excitement in the room, more so than in previous years.  it was really encouraging to feel the sense of optimism about where things are headed.

Of all the presentations of the day, Ken Anderson's was the pièce de résistance.  I would have made the trip to Boston just to hear him speak.  He has a way of presenting complex facts in a down-to-earth way that makes sense to ordinary people (not so with some of the other presenters).  He's also a great public speaker with a wonderful sense of humor that keeps the audience fully engaged.  He also shared an uplifting vision of where MM research is headed and some of the exciting new therapies on the horizon.  When he finished, he got a prolonged standing ovation, something that I've never seen at one of these meetings before.  Videos of this meeting will be available on YouTube in January.  I'll try to post a link to Ken's talk for any of you who might be interested.  It was amazing!

I'm not going to delve into some of the boring details of the meeting, but I'll try to give a top-level overview of my impressions.  I've had to spend a day sorting it out, because some of it was like trying to drink out of a fire hose.  Here are a few of my general observations:

There is a lot of focus now on the precursor conditions to MM:  MGUS and Smoldering Myeloma (SMM).  The thinking now is that by intervening earlier, not only may some of the bone and organ damage of MM be averted, but perhaps it can be better controlled or (gasp!) cured before full-fledged MM emerges.  Some high-risk SM patients are now being classified as MM and eligible for full therapy options.  There are also clinical trials underway to investigate use of experimental vaccines in SMM patients to help prevent progression to full MM.  This trend is likely to continue.

Long-term clinical trial results are starting to show that with the efficacy of the new novel therapies for newly-diagnosed MM patients, there may be no advantage to doing an early stem cell transplant.  French and American studies differ, but the American study shows that if Revlimid maintenance is continued indefinitely after induction therapy, deferring a stem cell transplant until after relapse may actually be better.  This could eventually result in a change in the current standard of treatment therapy, which now encourages an early transplant.  However, this would go against the Total Therapy approach (Arkansas), which advocates high-dose chemo and early tandem transplants in the expectation of a complete cure for normal risk patients.  Let's just see how this all plays out.

They are very excited about the approval for Ixazumib (MLN9708).  Me too!  It worked great for me.  In addition to being somewhat superior to Velcade, both in response and side effects, having a totally oral regimen is a major plus in terms of convenience for patients.  Aside from the potential insurance coverage difficulties that I posted about earlier, this could be a game changer for MM therapy.

Immunotherapy is the name of the game for the future.  Whether it is the expanded use of immunomodulator agents, (Revlimid, Pomalyst), monoclonal antibodies (Dararatumumab, Elotuzumab, SAR650984), checkpoint inhibitors (PD1-PDL1 blockades), or vaccines, that's where the game is going.  Vaccines are a particularly hot topic.  There are several ways in which vaccines can be employed, some of which involve extracting MM cells from the blood, fusing them with an antigen, and then injecting them back into the patient.  There are several clinical trials planned or underway, and I would expect to see a lot of developing news on that front in the next year or so.

While I was there, I ran into a couple of fellow patients that I had met before.  Paul and I had met a couple of years ago at the Farber, and he continues to follow my blog.  Fortunately, he is still doing well.  I also ran into Dee, with whom I have had previous discussions regarding the association of Lyme Disease with MM.  We both feel that there is a positive link that Lyme may be a precursor to MM.  I hope to communicate more with her and update some of those discussions in the near future

It was a good day.  Until next time.






Monday, November 30, 2015

Post Thanksgiving Musings

I hope all of you had a wonderful Thanksgiving.  This year, Thanksgiving was very special for us.  With the exception of Holly and Ryan who are still in Peru, everyone was here.  Brian, Pam, and Logan came up from New Jersey on Wednesday and stayed for the weekend.  Jeff, Christine, and her mother, Elmas, were here, and Jason came up from Hartford for the day.  We have a wonderful family and have much to be thankful for.   Everyone pitched in to prepare the traditional meal.  The food was to die for:  turkey, sausage stuffing, gravy, mashed potatoes, squash, spinach pie, cranberry sauce, green beans, rice pilaf, pies, cookies, and those are only the dishes I can remember.

Seacoast Science Center
The weather was fantastic.  Wednesday evening we were able to enjoy sitting around the fire pit on the patio.  On Friday we visited the Seacoast Science Center in Rye, N.H.  Logan found the marine exhibits to be very interesting.  Now 5 years old, he's growing up fast and is fun for grandpa to be with. 

Even though we had about a hundred pounds of leftovers in the fridge, we stopped on the way home on Friday at Markey's Lobster Pound to gorge ourselves on lobsters, steamers, oysters on the half shell, fried clams, and french fries.  I'm not sure why we did that, but it sure was delicious!  The Hell with the leftovers!

We are departing from our usual norm this Christmas.  Instead of our long-standing tradition of hosting Christmas at our house, we plan to go to Brian and Pam's home in South Orange.  We're not even getting a Christmas tree this year!  I'm having withdrawal symptoms already.  I don't think I've ever not had a Christmas tree in my entire life!  Jeff, Christine, and Jason may be able to join us in New Jersey (I hope).  I know the Santa Claus thing can be overdone, but I'm really looking forward to seeing Logan on Christmas morning.  The magic of these years won't last for long.

In my last post, I shared that the FDA had just approved daratumumab (Darzalex) as the first MM immunotherapy drug.  Well, they didn't stop there.  On November 20, ixazomib (trade name Ninlaro) was approved for patients with at least one prior therapy!  As you well know, that was my front line Phase I clinical trial therapy in 2011.  I knew it then as MLN-9708.  I'm really pleased that I was able to participate in that clinical trial, that it worked so well for me, and that it has now been approved as a viable therapy option for all Multiple Myeloma patients.  It's exciting to have this oral proteasome inhibitor as an alternative to Velcade, both because of the convenience of not having to visit the clinic for infusions and for its lower side effects.  It may even work better than Velcade.  However, there may be a fly in the ointment.  Most insurance plans cover infusion therapies for cancer, but some do not cover oral remedies under their prescription drug plans.  That's a real bummer.  Hopefully, this issue can be resolved so that Ninlaro may be made available to all those who need it.

But wait!  There's more!  Today, the FDA approved the second immunotherapy drug, elotuzumab (Empliciti), for MM patients with one to three prior therapies!  Wow!  This makes the third MM therapy drug approved by the FDA in the last three weeks and the fourth one this year.  This is such amazing news for us MM patients.  Our options for future treatments have expanded greatly.  It is a great cause for optimism and another reason to be thankful this holiday season.







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. 

Namaste.

Friday, September 4, 2015

Diagnosis

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

Dermatologist

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.
Caiman

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

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!

Monday, March 23, 2015

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.

Monday, March 9, 2015

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!

Tuesday, March 3, 2015

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.


Thursday, February 19, 2015

Immunotherapy

With all the new research being done on fighting cancer, one of the most promising areas is that of immunotherapy.  Today I read that Science magazine has just named immunotherapy, which unleashes the body’s own disease-fighting cells against cancer, as the "Breakthrough of the Year".  Pioneered by Dana Farber scientists, this approach to fighting cancer has shown remarkable promise.  Here is a link to the DFCI report on this article:  immunotherapy-for-cancer-named-breakthrough-of-the-year. 

I really think this is the best hope for the future of fighting cancer.  Harvesting one's immune system to fight cancer cuts right to the chase and avoids all the side effects of chemotherapy.  I have blogged about this approach in the past.  Here is a link to one of my previous entries on this exciting new research area:  immunotherapy-research.

This immunotherapy is already showing very promising results in melanoma, kidney cancer, and non-small cell lung cancer.  There is a lot of hope that this will prove to be of benefit for MM as well. I'm very hopeful that this approach will be a cure or at least a stop gap against many forms of cancer, especially Multiple Myeloma.

After the unbelievable weather we have experienced here lately, we finally got moved into our new home this week.  It was quite an ordeal, but here we are.  We love it!  We still have some small things left to move over here.  Nancy, the new owner of of Old Wharf Road, has been very accommodating, and she will allow us to put off moving some of the more difficult items such as the back deck furniture until the 4 feet of snow melts.  That could be some time in April or May or June?

As for the weather here, at this point I just say "bring it on!"  We have survived this far, so let's just go for the record books now.  I want to look back and say we made it through the worst winter ever.  So now I'm hoping for another storm or two to cement us in the historical record.

Saturday, I leave for our golf week in Ocean Isle Beach, North Carolina.  The weather forecast there isn't so great, as they have been hammered by the same Arctic weather that we have.  However, golfing down there in the 40's still beats shivering up here in the teens.  It's all relative.  I feel bad leaving Gretchen to pick up the remaining pieces of our move while I'm gone, but there isn't much left to do. 

It's all good.  Fore!


  


Monday, February 9, 2015

Snowmageddon

I don't believe this!  I have never seen more snow in my life.  This has been a real ordeal.  Not only am I having to keep this place shoveled out, but I have to keep digging out the new house with the snow blower almost on a daily basis for the last two weeks.  This is absurd!  We hired a mover, our friend, Chris, to come last Monday for an estimate.  We plan to do the move next Monday, weather permitting.  However, Chris said that our driveway was too narrow for the van, and we had to widen it.  I had our snow plow guy come back last week to make it wider.  He did what he could, but he said he couldn't go any further.  Since then, we've had another couple of feet of snow, so I don't know what we can do now.  We may have to hire a back hoe to clear enough room for the moving van.

Inundated deck
Oh, and that's not all.  I have to shovel out the back deck so they can get to the furniture out there to move it.  This picture was taken last week, so it's even worse now.  I have to clear a way to get all of this accessible by Monday.  Oh yes, and I have all my workshop equipment in the basement, so I have to clear a path from the bulkhead so they can get that stuff out and to the truck.  How am I going to to that?  Help!

But that's only one of the problems.  The oil delivery man came last week and said he couldn't get to the back of our house to fill the tank until I cleared a path.  So I shoveled a path through about 3 feet of snow to the back of our house so he could fill the tank to the apartment.  Since I also wanted him to fill the tank at the new house, I went over there and used the snow blower to clear a path to that fill pipe. Unfortunately, I didn't know where the bushes were located, so I ran over a bush and broke the belt in the snow blower.  It was still snowing, as usual, so I was at a bit of a loss.  I called my normal fix-it guy, and he said it would be a week or more before he could come get it to try to fix it.  Great!  Anyway, my next door neighbor, Jeff, had given me the name of a local guy, Bob, who he said was really good.  What a gift!  Bob came that day to pick up the snow blower, fixed it, and delivered back the next day.  Wow!  I was thrilled.  I was back in business.

Tough to shovel over these snowbanks
Now we have the third major storm underway in as many weeks.  Jeesh!  I shoveled here yesterday and again this morning.  As you can see from this picture, it's getting harder and harder to find a place to put the snow.  These banks are getting pretty high.  I'm getting too old for this shit!

Then I went to the new house and cleared all the paths with the snow blower.  Thank goodness for that snow blower!  Unfortunately, I found that the oil man had gotten there before I could clear his path.  Rats!  I called the company later and apologized for making him wade through all the new snow to get to the fill pipe. It's still snowing, by the way, so I have to repeat all this tomorrow again.  Oh yes, and on Thursday we are supposed to get another snow storm.  How great is that?  When will this all end?

I have to tell you that keeping two houses up and operating through this madness while we are in the midst of packing is a daunting task.  We better get moved by next week, because I'm leaving for Ocean Isle Beach in North Carolina for my yearly golf vacation on February 21.  As much as I'm looking forward to getting out of Dodge right now, I don't want to leave Gretchen with lots of stuff to do while I'm gone.  So the next couple of weeks are going to be pretty intense.  Oh yes, and on March 12, we are leaving for a family vacation in Maui, Hawaii for 9 days.  That beautiful warm beach is looking pretty inviting right now.

Monday, January 26, 2015

Blizzard

It's Monday night, and we're hunkered down for the expected Blizzard of 2015.  As a survivor of the infamous Blizzard of '78, there's nothing in my mind that could compare to that classic.  That being said, I have to admit to being a bit nervous about the next 24-48 hours.  We have a backup generator, which has saved our asses in the past during the power outages that accompany most major storms here, but today I had trouble getting it started.  I got the ancient thing going twice for a short time before it just quit on me.  I tried again later with no success.  Now I have to cross my fingers and hope we don't lose power (unlikely), or I find a way to somehow rejuvenate this venerable piece of equipment back to life.  So tonight is an exciting time.  We have a fire going in the fireplace, which we will try to keep going through this storm.  We've stocked in food (and wine, of course) for the next couple of days, and if we still have power, I've planned a nice chicken dish for tomorrow.  If not, well, maybe some canned soup heated over our gas stove will suffice while we shiver in our coats.

We do have a last resort.  If we have no heat and our new house doesn't lose power, we could always go over there and sleep on the floor, since we have no furniture.  That doesn't sound real appealing.  That's way down on my list of options for now.  I think I'd almost rather find a homeless shelter with a bed.

I went back to the Farber last Wednesday for my monthly checkup.  Everything was still great, except I had come down with a cold, so they stopped my Revlimid for a week.  I got a prescription for a 5-day azythromycin antibiotic pack, which I started on Thursday.  I felt shitty for a couple of days, but fortunately, I have recovered and feel much better now.  The bad news is that I gave my cold to Gretchen, and now she is suffering.  If the weather permits, I will go back to the Farber on Wednesday and resume my normal schedule of Rev.

This has been a crazy time with the impending move.  We keep boxing up things to move and filling trash bags with things to throw out.  We also donated a ton of things to Big Brother Big Sister last week.  I almost think we are ahead of the game, but then I remember the 100 things I haven't dealt with yet.  Yikes!

The new house interior has been painted, and it looks awesome!  New rugs and furniture and granite counter tops are in the works.   My smartest move to date?  I rented the previous owner's snow blower for the winter.  Even though we hired our plow guy to do the driveway, we have 2 long walks from the driveway to the front and back of our new house.  I can't imagine having to shovel those, especially after the 3 feet of snow we are about to get.   Good move, Bill!  I'll try not to break my arm patting myself on the back.

In the meantime, we're just hunkering down and waiting this one out.  I'll let you know if we make it through.




Wednesday, January 14, 2015

Moving Frenzy

I want to apologize to all of you faithful followers who have been waiting with bated breath for me to update my blog...well, maybe 2 or 3 of you at most.  Anyway, it has been a hectic time as we prepare to move into our new home in West Newbury.  We closed on our new home on January 3, but it wasn't without some last minute drama.  At the last minute, our mortgage application was denied because we didn't show a monthly "pension" income from our investments, a new requirement from Fannie May and Freddie Mac.  WTF?  Anyway, we scrambled around to cover the deficit in order to close on time.  We've arranged things to make that problem go away and will re-apply for the mortgage.  Serendipitously, the rates have dropped over the last month or so, so we might come out smelling like a rose.  Somehow things have a way of working out.

We have been so fortunate that Nancy, the new owner of our current abode, has graciously allowed us to stay here as renters until we are ready to make the move.  That has given us time to sort through our stuff while we pack and schlep boxes on a daily basis to the new place.  Our deadline is the end of February, but we hope to complete everything well before then.  We damn well better be out before then, because I'm spending the last week of February in North Carolina on my annual golf outing with my brother, Terry, and a bunch of friends.  Our friend, Barbara, has been a Simon Legree, whipping us into action to get us moving (so to speak).  When we look at what we've done so far, it seems like a lot, but then when we look at what's left...Holy crap!  We've got a long way to go.

As a closet hoarder, I have accumulated a prodigious amount of useless items over the years that I am agonizingly sorting through to decide what is really important.  The college notebooks that I don't even understand anymore had to go, because it's embarrassing to realize how stupid I've become over the years.  Who was this seemingly intelligent person that I used to be?  Duh.  It's interesting to note that my focus has shifted from what might I be interested in looking at again to what might Gretchen and the kids care about looking at again when I'm no longer here.  To tell you the truth, other than family pictures and memorabilia, not much!  It's humbling.

We decided to hire, Amy, the decorator who staged our house successfully for the sale, to help us figure out what to do with our new home.  While we could actually move in without any major changes, there is a lot we want to do before the move...painting, upgrading the kitchen counters, some new furniture, etc.  We still don't know where to put everything, so we need lots of help.  Amy, HELP!!! 

I'm still feeling good, and I go back to the Farber next week for my monthly checkup and Zometa infusion.  After I prodded them last month, they realized that I still need some of my childhood immunization shots to protect my new immune system, so I'm scheduled to get those.  That should bring me up to date on that score.