New Treatment

Evolution is pretty clever.  While a certain treatment for multiple myeloma may be effective for a while, eventually the disease figures a way around it.  Basically, the law of large numbers works against you.  A single drop of blood contains 10 million blood cells.  So, when a treatment kills 99.9999% of the bad guys, it still leaves .0001% that it did not kill.  That is 1,000 in a drop of blood.  Science.answers.com says there are 120,000 drops of blood in the human body.  So that means that 120 million of the bad guys survive the treatment.   And those proliferate to become the new normal, and at that point the treatment no longer works.  I believe I recently reached that stage.  Here is my latest graph of Free Lambda:

The latest spike (6399) was the day Dr Liegel decided to move me to a new treatment regimen.  The next reading (3673) was the very next day.  That indicates more the variability of the measurement than the effectiveness of the new treatment.  The new treatment is called enhanced KRD, which stands for Carfilzomib, Revlimid, & Dexamethasone with Daratumumab as the enhancer.  Yes, Carfilzomib begins with C, not K, but maybe the acronym reflects the fact that it is pronounced with a hard C.  In fact, the first treatment did not include Revlimid, as I had not yet received the drug, which you get through UPS package delivery.  Plus my platelet count was too low to allow me to go back on Lovenox, which is a blood clot preventer.  One possible side effect of Revlimid is pulmonary embolisms.  I have had 2 such embolisms, so I need to be on Lovenox when taking Revlimid, much though I hate injecting it into my tummy every morning.

The net result is a significant increase in the effects of the disease.  The prior post featured an x-ray of my left lower leg, showing the weakness of my fibula.  That has spread to the right lower leg as well, so I am walking with a double-sided limp.  Plus right about the time the new treatment started, I tested positive for Flu.  Presumably as a result of exposure to people over the holidays, in spite of the fact that nobody else in the family had the flu.  They put me on antibiotics, but I still did a lot of coughing.  In fact, my lungs gurgled as I breathed.  All that would have been OK, except for the fact that when I coughed, it really hurt.  I believe I ended up cracking a couple of ribs from the coughing, and there is residual pain in my back from the exertions.  Then a week later a chest x-ray indicated I had pneumonia in one of my lungs, so there was another treatment for that.  As of the latest treatment (1/21) the lung congestion is gone, and there is only minimal coughing.  But the level of bone pain in my back, my left shoulder, and my ribs is still significant.  They have had me double the dose of pain killers, and I really notice when the pain killers wear off.

The net result is that I am moving much more slowly and weakly.  Stairs are out of the question and Barbie is driving me to all my appointments.  I get around the house with walkers (one upstairs and one downstairs).  I navigate between the floors with the stair chair, which once again is coming in very handy.  A major issue is the passage between the upstairs corridor and my office.  We added a second stairway when we renovated the house in 1994-95.  There really was not room for a stairway that would adhere to the codes for steepness.  The solution was to split the stairway at the top, creating a landing and 2 steps up to either side. 

The net result is that you have to climb down 2 steps, across a landing with an indented side, and then climb up 2 stairs.  This is a challenge with a cane, especially if your legs feel so shaky that they might give way at any time.  Barbie set out to solve this problem.  After assessing the situation and making a few calls, Marcia Rising suggested that a local fellow, J T Toole, dealt with mobility problems for seniors in town.  He came over right away and suggested adding 2 grab bars on the doorway to the attic, which is at the end of the stairs.  He also suggested adding a fold-out handle to the back of the bookshelf on the corridor side of the stairway, but that needed to be ordered and is expected in later this week.  But for now the 2 handles are making negotiating the stairs much more reliable. 

I can grab onto the handles while descending or ascending the stairs from the landing, and I no longer feel in danger of losing my balance and falling down the larger stairway.  A major relief.  Thank you Barbie, Marcia, and J T.

Meanwhile, we had plans to spend 1/18 – 1/25 in Cancun.  Barbie made these plans in conjunction with my sister Margo early in January, before things turned bad for me.  We set up plans to get a treatment just before leaving and then immediately upon return.  Barbie’s sister Dowie recommended a particular resort where she had attended a wedding.  She had gotten her husband Bob there in a wheelchair.  But the onset of the flu and the spike in the free lambda happened less than a week ahead of the planned trip, and we called in the trip insurance with great reluctance.  Margo and Philip went on the trip anyway, and they report that it is warm, gorgeous, and luxurious.  Being in a resort surrounded by those in less fortunate circumstances does make them feel guilty, but they have found nearby ruins fascinating, especially Margo, who is an architect. Our absence as the opposition takes card games such as bridge out of the equation, but they report having a very nice time.  I am not sad we cancelled, as a long plane ride and the ground connections are not something my body needs at this time.  Brian speculated that cancelling the trip would result in a sudden rally on my part, and although the flu and pneumonia are gone, the basic immobility remains.  Maybe some other time.

As always, we are extremely grateful for all the support and good wishes of our friends and family.  Treatments are frequent and long; the drive to Boston just far enough to make it significant, especially if one has to travel during morning or evening rush hours.  Having friends help with transport is especially appreciated.  We hope that the new treatment will kick in soon, reducing the effects of the myeloma on these weary bones.