Wednesday, October 14, 2015

Two More Bone Lesions

We have known for months now that the (unnamed) oral study regimen I've been taking was doing nothing for my numbers, IgG and M-Spike, except holding them stable.  We held out some hope, however, that it might at least take care of the lesion in my T5 vertebra.

Alas, the opposite has happened.  Last Friday's PET/CT shows that the T5 lesion has increased in intensity from 6.3 to 10.1 SUV max.  Further, there is a "tiny" lesion with SUV max of 3.7 in T9, and one in the right scapula with SUV max of 5.2.  The study regimen works very well for some people, I'm told, but my myeloma isn't fazed by it.  Of course I am now finished with that regimen, and I have other reasons to be pleased about that.

What's next?  I don't know yet.  Happily there is no emergency - according to the doctors all three of the lesions are still small and unlikely to cause a bone fracture soon.  Two doctors at Mayo have agreed with me that Kyprolis and Pomalyst together might be a powerful regimen for me, but one of those doctors said, "that combination will always be available," encouraging me to enter a trial of something new instead.  Moreover, Kyprolis (carfilzomib) is an injection/infusion on two consecutive days each week, for three weeks out of each four, so I would have to arrange my marathoning schedule to be home for that.

Pomalyst gave me a wonderful seven-year ride as a single agent, and I started on it as part of an early study.  I would like to do that again - who wouldn't?  Right now two of the best myeloma specialists on the planet are researching studies that might be appropriate for me, even looking into a particular one that is currently not recruiting.  I expect some news from them soon, perhaps today.

Most certainly I will blog about it.


  1. hang in there. At least the lesions are small and a new drug combo may just do it. Pomalyst(just ended my 5th cycle, unfortunately isn't doing much except holding steady my numbers. But I'd like them to decrease. I haven't got my m spike bake yet so that'll be the deciding factor. I too will go to Krypolis if pom doesn't do it.
    Best to you and always so amazed at your running!

    1. Thanks Christina - I'm with you. Stable is OK, but I really want the numbers to go down!

    2. Don, keep us posted. I'm still hanging tough w/ Revlimid, but I am Keeping my eye on what could be next. Myeloma is a baffling disease. Good luck. Rneb

  2. Don:

    Did you see 3 new drugs app'd in 60 days ??? What are your folks @ Mayos telling you ?

    I read in Oncology Live, that very promising news about treatments is just around the corner. ( No real need for Stem cell Procedures, as Novel drugs and RNA testing will better match disease with treatments).

    Have a great turkey day, Don.

  3. My Husband has been recently Diagnosed with MM and still in process of being staged. So many Emotions going through us at the moment that it is overwhelming. I feel like God is guiding us to Bligs that bring hope. At this time , we are fighting with Insurance Company to just get somewhere. My husband is 53 and we have 2 teenage boys.
    We are looking at Arkansas or Moffit in Flirida where we live. My Name is Carole and My Husband is Jeff , if anyone sees this and wants to Reach out my email is