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Monday, July 29, 2013

More on Celgene and Richardson

Today's Boston Globe has an interesting article about Celgene investing $100 million into the Boston-based biotech start-up, Acetylon Pharmaceuticals.  Drs. Ken Anderson and James Bradner from the Farber are co-founders of the company.

I've blogged about James Bradner before.  He starred in a YouTube video last year espousing the benefits of the small molecule, JQ1:  jq1: miracle molecule.  The video was quite inspiring.  While JQ1 hasn't shown any promise yet against MM, it now seems to be a promising candidate for a male contraceptive and an anti-HIV drug.  Who knew?  Anyway, Acetylon's leading drug candidate is an anti-myeloma drug ACY-1215, which also goes by the moniker rocilinostat

Rocilinostat, which is among the class of anti-myeloma drugs known as histone deacetylase (HDAC) inhibitors, has undergone promising Phase I clinical trials.  Other HDAC inhibitors currently in clinical trials include Zolinza (vorinostat) and panobinostat.  ACY-1215 differs from the others in that it is more selective in its HDAC targets (it specifically targets HDAC6).  So far, it has shown good preliminary results with fewer side effects than the other broader-based HDAC inhibitors.

Future trials will involve combination therapies, including Celgene's Revlimid, Velcade, and dexamethasone, to extract the maximum synergistic benefits of the combinations.   It is research like this and ongoing clinical trials like these that give enormous hope to us MM patients that a breakthrough to a cure of this disease may not be far off.

Of course, this is only a small subset of the research into MM treatments.  I've written about the promise of monoclonal antibodies as another means of attack against MM.  And there are other lines of research as well.  If you throw enough darts at a dart board, one of them will finally hit the bulls eye.  From my own experience with darts, it takes a lot of them, but hey, who knows when the magic cure will be found?  I have a sneaking suspicion that when and if that happens, Dana-Farber will be heavily involved.

Yesterday, Pat Killingsworth blogged about the great research team at Dana-Farber.  He referred to a recent article that appeared on the Dana-Farber blog:  new-therapies-bring-progress-against-multiple-myeloma/.  As Pat wrote about this team, "Ken Anderson and Paul Richardson are two of the most renowned myeloma specialists in the world.  If they made sets of baseball cards featuring myeloma docs instead, their cards would be most sought after; like Micky Mantle and Willie Mays!".

In  response to one of the comments on Pat's post yesterday about Richardson, Pat replied, "He is one of the smartest, most creative and caring myeloma docs I know…"  Amen!  Dr. Richardson is all of that.  He is an amazing human being.  I have to keep pinching myself to make sure that I really am lucky enough to have him as my doctor. 

I guess I've gotten a bit complacent about my status.  I'm embarrassed to admit that I forgot to note that July 13 was the 2-year anniversary of my initial meeting with Dr. Richardson when he diagnosed me with MM.  How could I have let that milestone slip by unnoticed without so much as a how-do-you-do?  I know that one of these days I'm going to have to face the reality of a relapse.  That will certainly be a slap in the face to wake me up.  In the on!

Thursday, July 25, 2013

Celgene/Richardson Team

After a whirlwind week traveling to New York and back and then to San Francisco, we are finally back home to decompress.  The Jimmy Fallon show was an awesome experience for us all, especially Jason.  In case you missed the show, here is a YouTube video of the segment:  Jason was awesome!  He was a really good sport and played it up to the max.  There were some irreverent comments on the YouTube video about Mike and me holding hands with our blindfolds on, but they were nothing compared to the flak I received from my own family.  Gotta love em!
Jason and admirers

After the show, Jason was mobbed by a number of women wanting to get their pictures taken with the new celebrity.  He seemed to enjoy the attention, but Jessica...not so much.  After a few minutes of watching his female admirers fawning over him, she finally announced, "OK, we're outta here!"

All in all, it was a once in a lifetime experience for us all.  Jason will now have to endure the long process of growing his hair back again, but I'm sure it will be worth it.  As he emailed us afterwards, "I wanna jump thru a ten foot poster of myself every time I enter a building!"

Thursday morning we drove back to Boston in time to re-pack and head to the airport to board a plane to San Francisco.  We had a delightful weekend with Holly and Ryan.  Friday, Ryan and I played 18 holes at the Presidio Golf Club trying to prove to each other who was the worse golfer (it was a tie), while Gretchen spent the day at Holly's school.  Some delicious meals, sightseeing, Farmer's Market, a ferry ride to Tiburon, and just hanging together out all made for a wonderful time.

On my last visit to the Farber, I picked up a copy of their house organ "Impact", which has a very interesting article about Celgene and Dr. Richardson.  There has been a lot of discussion over the years about the close ties between big Pharma and the medical establishment, and whether these relationships constitute some sort of conflict of interest.  While there may be instances where such ties work to the disadvantage of patients, this case is certainly not one of them.  Dr. Richardson is on the Advisory Board of Celgene, and has been active in clinical trials with Celgene products, most notably, Revlimid.  It is Richardson's ground-breaking trials that have resulted in the RVD (Revlimid/Velcade/dexamethasone) drug combination that is now the gold standard treatment for treating Multiple Myeloma.  Obviously, this partnership has benefited everyone.

Recently, Celgene's newest MM drug, Pomalyst, received FDA approval, for which Richardson had a leading role.  Specifically, he demonstrated Pomalyst's efficacy in both Phase I and Phase II trials, with the Phase II study providing the basis for accelerated approval.

This article reports that Celgene has just donated a $1.1 million gift to support Dr. Richardson and his team in future clinical trials.  "Celgene's extraordinarily generous support helps make essential early-stage studies possible," said Richardson.  "Results from our studies suggest that our approach is likely to have an enormous impact on our ability to better fight multiple myeloma at its various stages, an so further improve patient outcome."  As Celgene put it, "This makes the work done over the years by Dr. Richardson the leading edge, and Dr. Richardson a powerful force who has been an ideal partner for Celgene."

Hmmm.  Maybe I should buy some stock.

Tuesday, July 16, 2013

Lyme Disease and Jimmy Fallon

Just as I thought my latest rant on Lyme Disease would calm me down on this topic for a bit, a couple of recent news items have inflamed my passions on this subject once again.

Last Friday, Pamela Weintrab, a CNN contributor, posted an editorial on her fight against Lyme Disease.  Here is the link to her column:  weintraub-lyme-disease.  She recounts the story of her long fight with the medical establishment to get her son properly diagnosed.  After two years after being denied treatment, despite a positive Lyme Disease test, her son "suffered aversion to light, profound fatigue and shooting pains throughout his arms and legs".  Boy is that a familiar story! After being told that her son had a psychiatric problem, it took the next decade struggling for him to get well.

As she points out in her piece, "When doctors attuned to the CDC's rigorous definition resist diagnosing any but the most classic patients -- those with an obvious Lyme rash or highly positive test -- it means patients are left to advance to later, harder-to-treat stages of the disease".  She also states that "standard tests based on legacy technology pick up real patients between just 45% and 75% of the time".  Therefore, anywhere from 25% to 55% of of patients with real Lyme Disease get a false negative on the test and may therefore go untreated.  This is an outrage!  She summarizes with the thought that those deniers in the medical establishment are "circling the wagons around outdated studies, leaving patients desperate and sick while protecting their academic turf".

Then yesterday, the Boston Globe had a front page story on Lyme Disease.  The article was generally critical of the medical establishment's lack of focus on this burgeoning epidemic.  I found the following statistics interesting:  Massachusetts spends more than $10 million on preventing mosquito-borne diseases, and only a few tens of thousands of dollars on tick-disease education.  Last year, there were 33 cases of West Nile virus and 7 cases of Eastern Equine Encephalitis in the state.  That's a spending level of about $250,000 per case of mosquito-borne disease!

However, there were more than 5,000 confirmed cases of Lyme Disease, although the actual cases are believed to be 5 to 10 times greater than reported, because so many patients go undiagnosed or do not fit the stringent reporting criteria. So the state spends about $1 per Lyme Disease case.  Let me ask you:  Are mosquitoes 250,000 times more dangerous than ticks?  I'm just going to let that question hang out there for you all to ponder.  WTF?

Jessica and Jason
Last week, our son, Jason, and his girl friend, Jessica, went to the taping of the Jimmy Fallon show in New York.  Jessica got chosen to do an on-stage skit for part of the show, which was cool. We recorded the show and watched it the next day.  However, after the show, Jason got chosen to come back this Wednesday for a special hair makeover segment.  As you can see from this recent picture, he has quite a head of hair to work with.  He has invited Jess, Gretchen and me to appear on the show with him.  We will be interviewed ahead of time, and then come back on stage after the do-over for the "reveal".  This should be very interesting!  The show will air tomorrow night at 12:30 am.  We are driving down to New York today.  After the taping tomorrow, we will rush back in time to turn around and head to San Francisco for the weekend to visit Holly and Ryan.  This business of being retired can certainly get kind of hectic!

Wednesday, July 10, 2013

Farber Update

Here is one of the pictures of us racing the yacht Dreamcatcher at Block Island Race Week (I'm the geek in the canary yellow).  Jeff, as usual, is crouched over a winch ready to trim the jib, an exhausting job fit only for the young, especially in heavy weather.  I don't think we old farts could have handled it.  It was a chilly day and we were waiting for the rain, which fortunately never materialized.  Despite my not feeling 100% most of that week, I had a great time! 

After not feeling so well a week ago, I have been doing a lot better since.  I feel like I have completely recovered, except I am still more tired than usual.  My blood test results last week were pretty good, except for an exceptionally high reading for alkaline phosphatase, which could indicate either bone or liver problems.  Dr. Guidi wanted to make sure that I got that retested this week.

Yesterday was my monthly visit to the Farber, and I was pleased to discover that all my blood test results had either returned to normal or to my "normally abnormal" range.  My alkaline phosphatase level was back to normal, which was somewhat puzzling.  My nurse, Mary, opined that the previous elevated count may have been caused by some sort of viral infection.'s OK now.  My absolute neutrophil count at 1.36 was below previous months, but might have been even lower if I hadn't taken a week's holiday from the Revlimid.  I am now back on my normal schedule of 5 mg per day of Revlimid.  So far, so good.

I read in the Farber newsletter yesterday that clinical trial data show that long-term therapy with Revlimid is very beneficial for older patients with a form of chronic blood cancer.  While this doesn't necessarily relate directly to MM, many blood cancers show some common characteristics, so I take that as an encouraging sign that my long-term maintenance strategy with Rev is probably a good thing.

Tuesday, July 2, 2013

Back from Sailing

For any of you who followed our progress on Dreamcatcher at Block Island Race Week, you know that we didn't fare too well in the competition.  For the week, we tied for 6th place out of the 10 yachts.  We usually do better than that, but the field was intensely competitive this year.  For example, on one day we finished 7th in corrected time over the approximately 3-hour race.  However, had we been 3 minutes quicker, we would have been 3rd.  Here is a picture of our boat, a 58-foot Swan.  It weighs 36,000 pounds, so it is hard to get it going in light airs, like we had most of the week.

That's OK though.  We had a wonderful time, as usual.  After missing last year due to illness (both mine and the skipper's), it was a real joy for us both to be healthy enough to enjoy this annual event again.  We're already looking forward to next year.

The week took a bit of a toll on me, however.  I came down with some kind of low-grade infection, which resulted in my feeling crappy and tired most of the week.  I was exhausted after every day of racing, so I napped before dinner and went to bed as soon a possible afterwards.  I have to say, however, that once I got on the water and began racing, I felt perfectly fine!  I was glad to get home on Saturday and catch up on some much-needed rest.

Since I am still not feeling 100% I called Mary McKenney, Dr. Richardson's nurse today.  She told me to immediately stop taking my daily Revlimid dose and get my blood tested ASAP.  So I'm off to see my PCP to get my white blood cell counts checked...

...OK, I'm back.  I had my CBC-diff blood draw taken, and I go back tomorrow morning to get the results.  I was also running a mild fever of 100 degrees, which probably explains why I still don't feel top notch.  I hope that suspending the Revlimid for the next week will help my body recover more quickly.  My regular monthly visit to the Farber is next Tuesday.

In the meantime, the whole famn damily (except Holly) is headed up to Champlain, NY, to celebrate the 4th at the farm.  I will be transporting contraband fireworks that I bought in New Hampshire, but have been storing in Massachusetts, where they are (inexplicably) illegal, one of only 4 states that ban fireworks.  To compound my scofflawness, I will be hauling this illegal cache up to New York, another state where they are (inexplicably) banned, for a July 4th extravaganza display.  Brian, Pam, and Logan will be coming up from New Jersey, where they are also banned.  If Joe Biden were to drop in for the festivities, we would have all 4 states that ban fireworks represented (Delaware is the 4th).  In a perverse way, I get a bit of a kick out of thumbing my nose at such a stupid nanny-state law.  And if I get caught?  Maybe I'd never qualify for a security clearance again.  Boohoo.