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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.