Thursday, March 10, 2016

The Study Is Over

For me.  Sad to say, because this treatment was the easiest I've ever been on, and it has worked well for other people (with other blood cancers).  Yesterday's blood tests and PET/CT show progression of the myeloma, however, and after 13 weeks (a quarter of a year!) it certainly should be heading the other way.

According to Dr WG the PET/CT does not show any new lesions in my bones, which probably means that the study treatment was doing some good.  However, it does show increased activity in the existing lesions.  For a while we wondered if that increasing activity was "flare," caused by my own immune system attacking the myeloma.  There may indeed be some flare, but we have reached the point where it doesn't matter, because the myeloma is clearly not backing down.

To underscore that point, the blood tests also show progression in the last three weeks.  M-spike is level at 1.5 g/dL, but IgG increased by 9% from 1600 to 1740 mg/dL, the seventh increase in a row, except for one sharp bump up and back down when I was quite sick with the stomach flu. Furthermore my Lambda Light Chains almost doubled from three weeks ago, from 4.46 to 8.60 mg/dL, while Kappa chains went down.  I'm not sure what this means but no one believes that it can be good.

I gave the study a good try, but it's over.  Sigh.  So what's next?

Happily, I do have a little Pomalyst left, not expired yet, so I can start taking that immediately, with the blessing of Dr WG.  I'll also take 20 mg of dexamethasone (DEX) tonight, and then 40 mg Monday night, no doubt the first of many Monday nights.  I like to take the weekly DEX on Monday so that its side effects are mostly gone by the weekend, which is when I run marathons. Also, I like to take it at bedtime because, surprisingly, it interferes with my sleep the least that way.

Dr WG is still considering a second drug to take with the Pomalyst and DEX, or perhaps eventually with Revlimid and DEX.  Daratumumab (Darzalex) is a great choice, though I'm certainly no fan of Janssen Biotech, the company that is "commercializing" it, because of past criminal activity.  Elotuzumab (Empliciti) is a possibility as well.  Pembrolizumab (Keytruda) has also shown promise in early trials with Pomalyst or Revlimid and DEX.  It is FDA approved for melanoma (it saved President Carter), but is not yet approved for myeloma and thus may present an insurance issue.  All of those are monoclonal antibodies, not unlike the study drugs that I have been taking, but with demonstrated efficacy when combined with an IMiD like Pomalyst or Revlimid.

Another choice is an IMiD with a proteasome inhibitor and DEX - the standard of care for newly-diagnosed patients.  Unfortunately, though, I have already tried one proteasome inhibitor, which did nothing for the myeloma but did cause peripheral neuropathy.  Proteasome inhibitors work miracles for most patients, but may not be in my future.  The one possibility is carfilzomib (Kyprolis), as it may be the least apt to cause side effects.

It's great to have choices! I'll post as soon as a plan is finalized.

9 comments:

  1. Appreciate your well written posts. Darzalex has also shown to be effective as a single drug. Would you and your doctors consider that to mitigate side effects?

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    1. That might be a good idea, Mike. Right now I'm using Pom because I have it on hand, but I will discuss this with my doctor.

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  2. Sorry hear this, Don. But you still have lots of choices to fight with. keep us posted and I wish you the best. And Keep running!!!

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    1. Thanks Christina, good to hear from you

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  3. Hi Don, I've followed your blog and FB for years. Sorry your MM #s are increasing, but it sounds like you have lots of options! It's horrible to have myeloma, but for all of us, it's a "good" time with all the research and new meds available. I left Rev + Dex in the dust late last year, and am on Kyprolis + Dex (20mg) since Nov 2015. It's working well for me. I did do a little experiment of Kyprolis alone, no Dex, but my IgA and M Protein increased in just one month, so back to Dex 20mg I went this month. I skipped past Velcade because of the reported Neuropathy, as you mention, and I am pleased to say that Kyprolis gives me minimal Neuropathy. I have GI side effects from Kyprolis and Dex, but nothing like Rev and Dex. Hope things improve for you, and thanks for being such an amazing myeloma marathoner role model!

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  4. My Doc says "Everything works better with DEX." I wish it were not so. Glad to hear that Kyprolis is working for you - that drug is quite likely to be in my future too. When I was diagnosed 12 years ago the standard prognosis was 3 to 5 years and Thalidomide was just in trials, the first new drug for myeloma in years. Times are MUCH better now!

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  5. Hi Don' Been pulling for you the last five years. My wife has MM. Started with Rev/Dex in 2011 with M-spike 0f 3.4. Worked ok till last year. Went on SubQ Velcade. Doesn't hardly do anything. Added Cytoxan and ended up in the ICU with SAIDS after the second infusion. It worked pretty well for that month. Got M-spike and free lights down. When they started going back up went on 25mg Rev again with the SubQ/dex. It was like a reset and the Rev worked again until last month. So, the Pomalyst may work for you again.... She recently started on Pomalyst 4mg with Dex and SubQ Velcade. Does not seem to be working. Another cycle to see if it will work or she needs to change. I've read that Kyprolis may cause some heart or lung problems. Have you heard anything like that? Her oncologist has about 10 patients on Darzalex for the past two months. He said all seem to be responding and no infusion reactions. I think if she starts the Dara, we'll continue with the SubQ Velcade/Dex/Pomalyst. I just hope the Pomalyst starts to kick in. It's easy even with the twice a week Subq. Thanks for all you share. It's invaluable. Hope you can get on something that kicks MM to the curb.

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    1. Hi Michael,
      Thanks for pulling and for commenting. I hadn't heard about heart issues with Kyprolis - something to study up on. Anyway my doc is pointing me toward Darzalex, so that's probably the direction for me, for now.

      I wish you and your wife health and long lives.

      Don

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  6. Hi Don - I am with LIVESTRONG as well as a former staffer at the Shamrock Marathon in Virginia Beach. We are having a get together on Friday night that I would love to invite you to. It's very casual, you can bring your wife and daughter if they are in town with you. Really a celebration of a 5 year partnership and the wonderful things that the Shamrock Marathon does for LIVESTRONG. Will you join us? If you can, please email me at stephanie.myers@livestrong.org. Best wishes to you. We will be cheering you on at the "yellow mile" as you make a left to get on the boardwalk for your last .5 mile stretch.

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