Blog post 3/11/2017 – Updated 5/24/2017

Here is what I wrote on 3/11/2017, 2 ½ months ago:

Well my last post was over a year ago – on 2/13/2016.  Originally I was not posting because there wasn’t much going on.   There has been some stuff going on recently, but I haven’t posted because I wanted to talk about the resolution of the stuff.  But things are still unresolved, so I’ll talk about what is going on anyway.

First, here is the graph of my numbers, yet again:

 

The red line is Free Lambda.  It starts at the left when my disease was diagnosed in June, 2012, at 1329.  The normal max is 26, so that was 50 times the normal max.  The treatments in summer, 2012, quickly brought things back to normal.  Then in the summer of 2014, the readings began to rise again.  Treating it with Revlimid stopped the rise, but did not send it back down.  Then in early 2015 it rose dramatically again, in spite of the Revlimid.  So Velcade was added, and that brought it down dramatically.  I’ve been on weekly Velcade ever since then.  The Revlimid continued as well until last summer.  Since it was ineffective by itself and since it costs $10,000 per month (5% of which I have to pay, but that is still expensive), I asked why continue it.  So it was dropped in June, 2016.

The above graph is just too small to understand the details.  But it gives you the overview of the 2 major bouts I’ve had with rising Free Lambda numbers.  As you can see to the right, the numbers are on the rise again.  So let’s look at the data since last June.  I’ve removed the Free Kappa values and max, as Free Kappa is not a problem right now.

  

Free Lambda bounced around, mostly going sideways last summer.  It was above its normal max, but not alarmingly so.  Then in November it started to climb.  Back in 2014 when it reached 170, Dr. Levine started to deploy medicines against it.  It reached 183 in mid-December.  The decision was made to reinstate the Revlimid, on the hope that the combination of Velcade, Revlimid, and Dexamethasone would have – combined – effects that the drugs alone were not having.  But then the drug took a while to order, as I was changing Medicare Part D insurance companies, and the old company tried to evade paying for a prescription late in the year.  Once I had the Revlimid, the decision was to delay taking it until we returned from our trip to Tanzania (January 8-22), as a nasty reaction in the middle of nowhere was not something to be desired.  Then when I returned I was still on the anti-malarial drug, which gave me a bit of a rash.  Finally, late in January I did start the Revlimid.  But then I got another rash, and they suspended the Revlimid for a week.

So the latest reading is 270.3, which is 10X the normal max.  But I am feeling quite well.  No symptoms, and I am able to run every morning – although at a crawl’s pace.  Funny thing.  Back in early 2015 when I was on Revlimid alone, I thought there were minimal side effects.  But now that Revlimid has been added to a continuing regime of Velcade, I can see that Revlimid itself is the cause of many side effects.  The soles of my feet feel as if they have double calluses, and I need to take some sennocot every day to facilitate bowel movements.  But if the combined drugs bring the Free Lambda back down, those side effects are minimal.

This is far from the end of the story.  We don’t know what the next Free Lambda reading will be.  We are on pins and needles until 3/28 when the next test will be taken.  If a dramatic turn occurs, we will either continue the current regimen or drastically change it.  The good news is that there are lots of choices for new drugs to take.  You don’t want to change to the new drugs too soon, as Multiple Myeloma is continually evolving, and you want to have as many treatments as possible still effective against the disease.  This continuing mystery is why I haven’t written this blog post sooner.  Unlike Paul Harvey, I cannot provide the “rest of the story”.

Changing the topic: the Greg’s Legs team will be running/walking in the Multiple Myeloma Research Foundation’s Boston 5K on April 30^th.  We have done this race for the last 3 years, and it is a good time.  If you are in the area and up for some exercise, please join us.  My personal website is walkrun.themmrf.org/Boston/GregsLegs.  You can see last year’s team on the team page: walkrun.themmrf.org/Boston/Team/View/32396/Gregs-Legs.  You can register or donate at either site.  The whole point is raising money for research into Multiple Myeloma.  Last year’s race raised over $500K, and this year’s goal is $540K.  The MMRF runs 11 such races across the country and last year raised $2.9 million.  All of which was put to good use, as last year 4 new MM drugs were approved by the FDA.  Since there is a good chance that I will need to change to new drugs to fight Multiple Myeloma soon, I am extremely grateful that the MMRF has led the way for drug companies to pay attention to this disease.  MM might be the second most prevalent blood cancer, but with only 20,000 new patients per year, until the MMRF came along and organized patients for clinical trials and provided incentives for directed research, the drug industry was ignoring MM.  If I had gotten MM 30 years ago, I would not still be writing this blog, as the average life expectancy then was 2 years.  So, in my humble opinion, this is a good cause and one that I urge you to support.

Continuation on 5/24:

Well the race on 4/30 is long over.  I actually did quite well, finishing in 33:30, a 10:48 mile pace.  Once again I got the first place medal for men over 70.  There were 6 of us.  Barbie also got the first place medal for women over 70, but there were only 3 of them.  Our team raised $8,110, which is far more than we’ve ever raised in the past.  A big THANK-YOU to everybody who donated! The event raised over $640,000, which makes it the highest fund raising event in the MMRF’s roster of athletic events.  I’m sure the MMRF would still accept donations, but not in our team’s name.  But don’t let that stop you!

Now I can tell you the rest of the story.  Here is the latest graph:

On 2/28 the Free Lambda was 270.3, 1028% of the max of the normal range.  On 3/28 the reading was basically the same: 268.3 or 1020% of the normal max.  Then on 4/25 it had a major rise to 411.7 or 1565% of the normal max.  The latest reading is 419.7 or 1596% of the normal max.  When I meet with Dr. Levine, my oncologist, the latest reading is not available, so any decisions are made based on data a month old.  The decision was made to switch from Velcade to Ninlaro, a successor drug to Velcade.  They are both proteasome inhibitors, which means they work by making it so the Multiple Myeloma cells cannot dispose of their wastes.  So they die from their own pollution.  I asked Dr. Levine why Ninlaro would work when Velcade did not.  He said it was in the same class, but not exactly the same.  At any rate, we will soon find out.

Ninlaro is a pill, not a shot.  So I don’t need to go into Beth Israel every Tuesday any more.  But I do have to go through a telephone survey so that the drug company can be sure I know how to take the medication and how to act while on it.  Plus I get to pay for it.  3 pills cost $10,227.44, of which I get to pay $511.37.  So is it worth that much to avoid 3 round trips into Boston?  It certainly is if it brings Free Lambda back under control.

So I am now on a new regimen.  I take Ninlaro for 3 Tuesdays, Revlimid for 2 weeks daily starting on the Tuesday I take the first Ninlaro, and then Dexamethasone on the Tuesday I take the Ninlaro and the next day.  I have a weekly pill array that lets me figure all this out a week at a time.  Actually, I take 11 pills on a normal day, and then extras on the days I am taking any of the 3 described above.

I looked up Ninlaro on the internet to further explain how it works.  But the thing that caught my eye is a study that determined the relative progression-free survival rates:

NINLARO has been proven in a study to help some patients live longer without their multiple myeloma getting worse*

In a study of NINLARO, the NINLARO regimen (NINLARO+lenalidomide+dexamethasone) was proven to work in some people whose multiple myeloma had come back or stopped responding to prior therapy.

This study evaluated progression-free survival (PFS), the length of time during and after treatment that a patient lives with multiple myeloma but it does not get worse.

Treatment with the NINLARO regimen increased the median progression-free survival by about 6 months

20.6 months with the NINLARO regimen

14.7 months with the placebo regimen

 I'm not sure how to read the results of this study.  Will I be good for 20.6 months or 6 months?  I don’t think that I would have the luxury of trying a placebo regimen, as my MM seems to be on the edge of breaking out already.  But if people using the Ninlaro combination get a year and 8 months before things start to turn worse, then that is a good result.  We’ll see.

[I will soon provide another blog post, as 2 days after starting Ninlaro I had a major medical event which resulted in the suspension of my Multiple Myeloma treatments.  More to come soon…]