Planning the Next Phases of Treatment

Yesterday we met with Dr Levine.  Dr Levine took a bone marrow biopsy on 8/24 to verify the free lambda serum blood test that said the Multiple Myeloma was way down.  The results of the bone marrow biopsy were very positive.  The bone marrow biopsy taken on May 25^th showed 70% plasma cells, most of which were multiple myeloma cells.  The current one shows less than 5% plasma cells, and none of them are the monoclonal variety that make up multiple myeloma.  So the results are as positive as they can be.

Denise Cummings, the nurse coordinator of the Bone Marrow Transplant Program, laid out a schedule for us.  I have a 50^th high school reunion on 9/22, so nothing happens before that date.  The following week there will be a series of tests of my basic functions (heart, lungs, kidneys, liver, etc.) to confirm that I will survive the stem cell transplant.  Then the first week in October I start the stem cell harvest process.  That starts with the administration of a dose of Cytoxan, an aggressive chemical that will (among other things) cause me to lose my hair.  This requires that I be in the hospital overnight.  Then over the next 10 days I will self-administer shots of Neupogen, a drug that causes the stem cells to leave the bone marrow and enter the blood stream.  The actual harvest of my stem cells takes place the week of 10/15.  This may take up to 5 days, although many people generate enough stem cells in 1 or 2 days.  If the harvest takes a full 5 days, I would go into the hospital for the Bone Marrow Transplant (BMT) on 10/26.  The next 2 days (10/27 + 28) I would receive Melphalan, a drug that works by screwing up the DNA of rapidly reproducing cells.  This includes bone marrow, mucus membranes, and hair.  It is supposed to have pretty nasty side effects, and it wipes out your immune system.  Then on 10/30 they will reinfuse my stem cells.  The hospital stay will be 3-5 weeks, depending on how fast the stem cells are able to reestablish my immune system.

So sometime in November, they will release me from the hospital.  They need to monitor you daily for the next 1-3 weeks, and they request that you move into an apartment across the street from the hospital if you live more than 30 minutes away, which we do.  The patient is not supposed to live alone during this time, as someone else needs to perform cleaning and food preparation during this time.  The companion is also responsible for getting the patient to the hospital, which the patient apparently will be unable to do by him or herself.   We may choose to have me stay with Brian and Bridget, who live in Jamaica Plain, but we are assessing whether we want to make such an imposition upon them. 

They have given us a notebook describing the whole stem cell transplant (SCT) process.  It certainly makes the treatments I have had so far look like child’s play.  The danger of infection is quite high, and even with no infection, the damage to your entire gastrointestinal tract as a result of harm to mucus membranes can be quite painful.  There are many possible side effects, most of which sound like no fun.  They do have treatments for most of the side effects, but clearly one of your core body functions is being largely wiped out and reestablished from scratch.

The blog has been quiet for the last 4 weeks because there has been little to report.  I went through the 4^th cycle of chemotherapy with little that was different.  Once again, I had a spike in my INR (the measure of your clotting factors that indicates how much anticoagulation effect the Coumadin I take has) after the 4^th dose of Velcade.  The Emerson anti-coagulation clinic is on top of this, and as long as I remember to have my self-test kit with me, they are able to adjust the dose of Coumadin to keep the INR within reasonable ranges.

I have had 2 weeks off of the phase 1 chemo therapy now.  Things are getting back to normal.  My eyes are much better, the neuropathy in my feet is reduced, and my bowels are no longer so confused.  Both diarrhea and constipation are listed as possible side effects of the treatments.  I had the latter, not the former.  Ultimately they put me on an evening dose of something to ‘hydrate’ the stool and a breakfast of Fiber One to provide raw material.  That resulted in actual movements, but the process still felt quite confused.  Bloated was the best I could describe the resulting feeling.  Getting off the medicines has helped, although they still have residual effects that keep the multiple myeloma in check.

Meanwhile, my son Brian felt obligated to document the event that tested my back and bones in general.  Here is a reenactment of the work to install a light on the oak tree next to our new shack:

I was only 3 steps up when I fell, but the landing area was the rock visible at the lower left.  It was not a soft landing, but all bones survived the test with flying colors!  The doctors have reacted quite strongly to my latest report that I have soreness in my lower back.  They advise that my bones will never be as strong as they were pre-MM.  Yes, I am getting Zometa, which helps restore bone strength, but bone healing takes many months or years.  Meanwhile I am not supposed to lift more than 10 pounds!  I have certainly been doing more than that over the last 2 weeks.  A major readjustment of my expectations will be required to stay within the latest guidelines.