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.

New Developments

Suddenly it has been 2 ½ months since my last blog post.  In part that was because I didn’t have a clear story to tell.  My free lambda numbers have been bouncing around without a consistent direction.  Here’s the latest:

Yes, they are gradually coming down, but not infrequently they go up.  And if I had any of the recent numbers back in the spring, they would have been close to new records.

I complained that my left leg had stopped healing, and it felt weak.  So, they decided to give me radiation in the left hip and femur.  After initial prep where they put tattoo spots on the target areas so they can aim the radiation accurately, the treatments were quick (10-12 minutes) and uneventful.  That is to say there were no immediate aftereffects.  Even after 10 days of treatments there were no negative effects.  X-rays of the hip and femur still show spots where the bone has been sculpted away, but none of it is concerning to the doctors.  The x-ray sessions occurred November 7 – 20, which may account for some of the reduction in the free lambda readings during that time.

Perhaps of more concern is the fact that my lower left leg has developed a feeling of fragility.  It doesn’t exactly hurt, but it sure tells me not to push off with my calf muscle.  The net result is that I hobble along, limping with my left leg and pushing with my right leg.  I have been taking weekly physical therapy sessions (and actually doing the exercises in between – mostly), so the leg is not weak.  But it sure feels as if I would do harm to myself if I did any drastic motion with that part of my leg.  Within the last 10 days or so I have started to feel the same fragility in my right lower leg.

I happened to have follow-up appointments with both the surgeon who repaired my hip back in May and the doctor who oversees the radiation treatments.  The radiation doctor volunteered to radiate the lower leg, and the surgeon offered a metal pin as a potential solution if the bone were in danger of breaking.  Each sees the situation through his or her own lens.

In the process they did x-rays of the lower leg.  Here is an x-ray of a normal lower leg.  One you can find using Google:

The big bone to the left is the Tibia, which carries most of your weight.  The smaller bone to the right is the fibula, which helps with balance and maneuvering.  Note the contrast between the bone and the surrounding flesh.  The calcium in the bone makes it stand out as white, especially on the outer edges.

In contrast, here is an x-ray of my lower left leg:

The tibia looks pretty robust.  The fibula does not.  The part that is 2/3rds – 3/4ths of the way up the bone has very little contrast with the surrounding flesh.  The surgeon says that is the result of the multiple myeloma causing the component in the blood that absorbs calcium from the bones to have an upper hand over the component that deposits calcium in the bones.  The net result is that I am probably feeling fragile around there because the bone is weak. 

I had a PET scan today taking images of all my bones.  On Monday I will have a session with my oncologist to determine what the course of treatment will be. 

Since the start of December, I have a new oncologist.  My former oncologist, Dr. Nahas, has moved to California to take a job with a biotech company doing research on CAR-T cell therapies.  My new oncologist, Dr. Liegel, is quite young (and pretty).  I have been assured that she is good and that the entire medical team reviews all patients weekly, so she won’t be totally out there on her own.

Meanwhile over the holidays I was extensively exposed to grandchildren, which means I was exposed to multiple germs. I was hopeful that I would get through the exposure without any consequence, but since they have all gone home, I have come down with a pretty bad cold.  Coughing hard or sneezing really causes problems.  It feels as if I have done damage to one of my right ribs, so finding a comfortable position to sleep in is difficult.  The pet scan should show what is going on, and the treatment plan will make everything all better.  I wish.