Tuesday, December 17, 2019

Not Dead Yet

Not even close, doing pretty well actually, though I should post more often. I was diagnosed with myeloma in July, 2003, and according to my math that's well over 16 years ago. My family and I go to two different support groups, and I get celebrated as one of the long-timers. I like that, so very preferable to being dead, I think.

I've been on Pomalyst (Pom) since March of 2008, with the exception of one year when the Pom trial ended. Trials of three different experimental regimens failed me then, but Darzalex became approved and the combo of Darzalex, Pom, and dexamethasone (dex) brought my numbers way back down. Eventually we eased up a bit, gradually dropping the dex altogether and reducing the Pom from every day to 21 days out of 28. That may have been a mistake.

Mayo Clinic Rochester MN
IgG and M-Spike stayed way down for three years, but last spring my shoulder began to hurt and my lambda light chains crept up almost to the top of their range. A PET scan showed a bright, colorful lesion in the right scapula, even though IgG and M-Spike said nothing about it.

The radiation treatments started the very next Monday, 10 daily sessions with breaks only for weekends. When that doctor heard that I was 16 years from diagnosis, he allowed that my myeloma must be "indolent," like a lazy schoolboy. Well OK, but here it was threatening the use of my right arm! Happily, the PET scan after that treatment showed only a very small lesion remaining in the scapula. Doc did good.

I'm back on Pom every day, Darzalex once a month, and dex 12 mg/week. The arm feels great, IgG and M-Spike are fine, and lambda light chains are right in the center where they belong. We'll find out more with another PET scan in March at Mayo Clinic.


  1. Don, I have been following your blog site since 1/2011, just two months since my own diagnosis. Thank you for making an effort to update your site especially since you have had recent changes in your status.

  2. Thanks for commenting Cynthia,
    I didn't post very often during the last few years of the https://www.facebook.com/ERACECANCER campaign, but that's finished now and I'll try to keep up better. The good news is that there's really no bad news - not much is changing. The scapula problem appears solved, and numbers are at a very comfortable place.
    I hope you are doing well.

  3. Dan
    I was diagnosed with MGUS in 2004, MM in 2012. Have only had velcade, however, 4 broken bones later, we are looking at a different protocol.

    How do you handle the side effects of constant medication? I've been resistant to constant treatment, however, am also exhausted from the broken bones! Starting radiation on Monday for the latest. Good news, no surgeries. Velcade seems to knock down my Lambdas, IGGs, and Mspike when I take a time off and the resume treatment.

    I believe we are looking at Pom on Monday as well as low dose Dex.

    Thank you for all of your insights. You give me such hope and inspiration!!


    1. Hi Ann,
      I've never had Velcade, and probably won't because I was on a trial of a similar drug that I failed because of neuropathy (and it didn't work, anyway).

      Happily for me, the side effects of Pom and Darzalex have been quite modest. I don't mind being on that regimen at all.

      Because of a recent lesion in a scapula (eliminated by radiation) I've had to add dexamethasone, and I don't like the side effects of that, but it's livable and I like to live.

      Take care,


    2. Hi Don, thanks for your comments. My mother is Multiple Myeloma patient for 6 months. She used Velcade-Revlimide-Dexametazone for 3 months. Her first 2 stages were good, igg and free kappa down but after 3 stage, igg and free kappa climb up again. She had throat ache at the end of 3.stage. can this throat infection cause igg and free kappa up? my morale is so bad. is it the end of way for her?

    3. Hi Mr Tom,
      It is definitely not the end for your mother. That regimen (Velcade-Revlimid-Dex) is something that doctors try in the beginning. If it fails, they have lots of other tools to use. I'm on Pomalyst-Darzalex-Dex, so as you see the only common drug is Dex. My best advice is to have a doctor who treats a LOT of myeloma patients. You need an expert, if you don't have one already.
      Wishing you and your mother well,

  4. Hi Don
    I have been reading your blog off and on for 9 years now. I am writing because you and I are about the same age, although I have had MM only since 2011 we seem to be on the same protocol. For the last one and a half years I was on maintenance, (3mg of Pom and monthly Dara) and was in remission until March blood work showed that my “M” went from 0 to .2, Myeloma always finds a way to bet the Meds. Now I take Pom 4mg (21 on- 7 off), Darzalex once a month and Dex 12mg (3 pills) every Wednesday. I talked to my oncologist about you and told him you were on the original clinical trial for Pomalyst and if I understood you correctly on a 28 day cycle, but I am not sure of the dosage. With that he asked me if you were still in the trail. Naturally I said I did not know. He was curious because he had tried to get a patient of his that could not tolerate the 21/7 3mg protocol to a 28 day 2mg protocol but was refused by Celgene. Anything you can add to my Dr’s question would be appreciated. I am certainly not as active as you, how you do it I am amazed, but unlike many, the cancer has not caused me any physical problems, I ski all winter and sailboard and play pickleball in the summer, at least until 3 months ago. Did the 21 of 28 days not work for you?
    Yesterday I had my monthly infusion, Daratumumab was administered with subcutaneous injection for the first time, this may be old hat to you, Mayo Clinic and all.
    Thank you in advanced for your input.
    Joe Pagano
    Rochester NY, not Minnesota