Multiple Myeloma - 6/1/12

We got a call from Dr. Levine Thursday (5/31) saying the results of the bone marrow biopsy were in, and we should keep the appointment on Friday.  So then we were on pins and needles wondering what the results were.  Well, they were positive.  Despite some conflicting symptoms, I have Multiple Myeloma (MM).  Dr. Levine was quick to point out that MM is currently quite a treatable disease.  When he started out in this area 20 years ago, the life expectancy of a MM patient was 3 years.  Things are moving so fast that he doesn’t really have a statistic of life expectancy now, as there are too many survivors who have not yet kicked the bucket, so they don’t know how to count them.  For example, on one extreme he has a woman he treated 12 years ago whose MM has been in remission ever since.  On the other extreme he had a patient who did not respond to one combination of drugs.  Nor did he respond to the second combination.  By the time they switched to a 3^rd combination, it was too late.

Barbie asked what stage MM do I have?  Dr. Levine said he only has a snapshot of my symptoms, so it is difficult to say what stage it is in.  Furthermore, unlike some other cancers, the stage does not really affect the treatment plan, so he did not spend much time on that issue.  For example, if you have early stage lung cancer, you can operate and remove the small tumor.  Whereas in advanced stage lung cancer the tumor would have grown beyond where it could be cut out, so you have to use a different treatment.  With MM, there is a tumor in the sense that there is uncontrolled growth.  But the result is dispersed throughout the bone marrow instead of being rooted to one spot.  As a result the treatment is the same, so Dr. Levine did not really answer the question.

Dr. Levine gave us some brochures that explain both the disease and the treatment(s).  We have not yet finished reading the brochures.  Dr. Levine spent quite a long time explaining both.  There are clinical trials of new treatment protocols being conducted at Dana Farber, which is adjacent to Beth Israel.  Dr. Levine had gotten the forms to enroll me in one of those trials, but it turns out you have to be 65 or younger to qualify.  I am TFO.  So I will receive the “current” standard protocol.  The general idea is that they use a cocktail of drugs to suppress the MM.  That takes about 3 months.  Then they harvest your plasma stem cells.  They put your blood through a process that extracts the stem cells and returns the blood minus the stem cells back into your veins.  They freeze the stem cells for use later.  Then they put you into the hospital and use very aggressive chemo-therapy to attack any remaining MM in your body.  This is done in the hospital because your immune system is compromised, and you need to be in isolation to avoid infection.  After all your plasma cells are the ones that create antibodies, and without antibodies, you are completely open to infection.  Then when you are on death’s door, they reintroduce the plasma stem cells, and they regenerate plasma cells without MM.

The first step is to perform 4-6 three-week MM suppression cycles.  Each cycle consists of 2 weeks of 2 days per week of drug treatments.  Then you have a week off to flush the toxins from your system.  They perform blood tests before each drug application, and adjust the dose depending upon the results.  Once they get the dosage correct, the treatment should not be debilitating.  Dr. Levine has treated a physician colleague who was able to maintain his practice while receiving the drugs.  You just have to be able to adjust your schedule to include 2 visits per week to the hospital of 2+ hours each.

So we have a diagnosis, at last.  It may not be what we would have chosen, but who gets to choose?  Barbie points out that it is a good thing that this is not a result of something stupid I did, as in that case I would be the object of the full brunt of her anger.  Thank heaven I am innocent, as I doubt I could withstand that!  This will certainly make for a ‘different’ summer.  There probably was additional information that Dr. Levine gave us, but given the weight of the initial message, we really weren’t taking everything in.  It is one think to know, really know you are mortal.  It is another thing to be told you have cancer.  Yes it may be treatable, but it still is cancer, and your life expectancy is suddenly different.  We will certainly pick things up and attack this latest challenge, but for right now we are still absorbing the message.