Saturday, April 9, 2011

Boring Mayo Clinic Visit

Never. Even though nothing changed this month, I never feel complacent. Forty cycles on the pomalidomide (CC-4047) study are complete, and nothing changed this month, so I could have felt complacent. But I dread the inevitable day that the myeloma figures out how sidestep the pomalidomide - life will change when that happens, maybe not for the worse, there are other treatments, but life will change. Also, I suppose I don't want myeloma's reemergence to be a shock when it happens, and it can't be a shock if I'm always fully aware of the possibility.

Dr RH:

This visit was as routine as any we have. We don't know Dr RH very well, so after the medical stuff was done we chatted a bit, learned a little about each other. We like him - he'll do well for us, replacing Dr KDS, who really is gone now and whom we will miss. We also saw Dr L for a few minutes, a treat.

The Evolution of a Myeloma Recurrence:

With few exceptions, myeloma figures out how to defeat every medication. Maybe now, maybe later, even much later, but it does. I am definitely not a doctor or a biologist or anything of the sort, but I nevertheless have a simpleminded theory about that:
  • Some carcinogen alters the DNA of a plasma cell, or maybe a memory B cell, in such a way that the cell forgets how to die when it ought to, and perhaps with other DNA problems too, but without alerting the body's normal defenses. There may actually be MANY alterations of the cells, but most are detected and squashed, or cause that cell to die, or fail for some other reason, until one suceeds. This is how cancer starts, including myeloma.
  • That cell also has the ability to replicate itself or to produce other myeloma cells. I think there is still some dispute about how this happens - is the original progenitor a stem-like cell or an actual plasma cell? Anyway it multiplies.
  • A medicine (Revlimid, Velcade, melphalan, whatever) is able to kill the myeloma cells or reduce their rate of replication. The tumor burden goes down - yay!
  • But additional carcinogens, or the same carcinogenic influences, continue to make random alterations to the DNA of the remaining myeloma cells, which mat not be very stable to begin with. Most of these changes don't make any difference, or they may even cause the cell to die, but eventually one of those changes, by chance, makes a cell resistant to the current medications.
  • Now, that twice-altered cell is the strongest of the myeloma cells and is able to proliferate faster than the old ones in the face of the medication. It multiplies, replaces the old myeloma cells, and the drug is no good any more.
Anyway that's my theory and I'm sticking to it. If it were true, what would be the implications? Most important, REMOVE AS MANY CARCINOGENIC INFLUENCES AS POSSIBLE! We should do exactly the same things that we should be doing to PREVENT cancer in the first place:
  • Eat the healthiest foods, organic where that is important, to reduce the intake of pesticides.
  • Maintain a healthy weight - studies show that overweight alone is a carcinogen.
  • Exercise several times per week, to keep the body's immune system and other systems healthy.
  • Don't smoke, duh.
  • Stay away or protect ourselves from other common carcinogens such as gasoline, solvents, formaldehide in new construction or furniture, herbicides, pesticides, plus food additives such as nitrites and BHA/BHT.
I wrote more about cancer prevention in a previous post. It's how to live.

Gluten-free oatmeal with organic yogurt, organic strawberries, organic pear, pineapple, kiwi, walnuts. Might be some organic blueberries under there too.


  1. Don, you wrote "...additional carcinogens, ... continue to make random alterations to the DNA...".
    As far as I have understood these alterations may be caused by the drugs used against mm too. I am not a supporter of "alternative medicine". On the contrary I have faced what I consider an aggressive therapy (rev + dex and then tandem transplants). However
    if I were you I would be very happy
    to use a single drug (pomalidomide) and to have even eliminated steroids. Melphalan (used for transplants), cyclophosphamide, and other drugs are known to damage DNA (myeloma beacon :"... a number of chemotherapies commonly used to treat myeloma patients are known to damage DNA, including cyclophosphamide (Cytoxan), melphalan (Alkeran), busulfan (Myleran), cisplatin (Platinol), and etoposide (VP-16)".

  2. Don, I always appreciate your blog and all the information you share. I recently started Pomalidomide as therapy for recurring myeloma following several years of remission from sct.I am taking 2mg. for 28 days with 20 mg dex on first day of each week. The cycles keep going with no time off untill we ge a cr. I was wondering what the details of your initial doses were and what the dose and frequency of the maintenance dose you have been taking since then are. Joe Courtney

  3. Hi Joe,

    I've taken 2 mg pomalidomide every evening for three years. Started with 40 mg dex once weekly, but that was quickly cut to 20 when I showed Dr L a graph of blood sugar during a typical day - it got up to 180.

    The dex was gradually reduced from 20 mg down to zero. I've been off dex for about 16 months. Whew!

    I hope you succeed in getting a CR. I never did - not even a VGPR, just an ordinary PR, m-spike down from 2.7 to 1.0. But the bone lesions went away, so it's good enough for now.