Once again on April 26th the Greg’s Legs team
will run in the Multiple Myeloma Research Foundation Team for Cures race/walk
in Boston. Right now it is hard to imagine, as we have more than 4' of snow on the ground. Here is a picture of me raking the snow from our porch roof. Note I am standing on a pile of snow at least 6' high:
Much of that snow came down from the roof, but with me standing on it, it is quite compressed. Quite an impressive amount of snow! But presumably by April the snow will be gone,
and we will have a gorgeous spring morning for the race. I will soon be sending out invitations for
people to join the team or support the team financially. Thanks in advance for your support.
I haven’t blogged since before last spring’s race. For most of the time that was because at
least in terms of Multiple Myeloma, nothing much was going on. But that has changed in the last half
year. The blood marker that tracks my
version of the disease is called Free Lambda.
White blood cells are built from 4 building blocks. 2 light chains join to 2 heavy chains to
create one white blood cell. Each of the
components is built from plasma cells, and Multiple Myeloma causes the
production of one of them to go berserk.
In my case it is the lambda light chain that is over-produced. The normal range for free lambda is
6-26. Last summer my free lambda went
over the top of the normal range, but not alarmingly so. By September it was up to 170, and my
oncologist said I might have to go back on Revlimid to control it. Before doing that he wanted to take one more
test, as he said the test has a high level of inherent variability. He wanted to confirm that he wasn’t just
seeing a series of tests that were on the high side of the variability window. Well, that final confirming test was 435, so
it was indeed confirming that the Multiple Myeloma was back. Here is a graph of my Free Lambda tests:
Back in June of 2012, when I was first diagnosed with
Multiple Myeloma, my free lambda value was 1300 (50 times the normal maximum),
so 435 is child’s play. Still, I’ve been
back on Revlimid for 3 ½ cycles now. A
cycle is 21 days of daily pills followed by 7 days of no pills so your body can
recover. So far I’ve not had many side
effects from the medicine, which is lucky.
As you can see by the graph, the effect of the medicine has not been
uniform. The initial 2 readings were
down, but the third went back up again.
So they added a steroid for the first 4 days of each cycle to enhance
the effect of the Revlimid. The
combination appears to be working.
After the last cycle, the doctors were alarmed that my white
blood count (WBC) was low. Apparently
this is one of the side effects they are concerned about. Revlimid is in the same family of drugs as
Thalidomide, so they assume it can cause deformed babies. One is not to have unprotected sex with a
fertile female, give blood or semen, or to come into physical contact with the
contents of the capsules. So they
delayed the start of the next cycle by a week, and had me come back in for a
WBC test. It was back at a level where
they could go ahead, so they allowed me to begin the 4th cycle. Here is a graph of my white blood count:
The start of the graph is back in November, 2012, when I was
in the hospital for a stem cell transplant.
All your stem cells are blasted away, and your white blood cells only
last 2-3 days, so they literally went to zero.
Clearly my WBC tends to be on the low side, but when it was less than
half the minimum (1.6), the doctors called a halt. But when it approached the low end of the normal
range (3.2) they said it was close enough to resume the Revlimid. Generally your white blood cells are what
fights infection. Luckily, I have been
quite well this winter. I have visited
the grandchildren, but generally I have kept my distance, as they always have
runny noses or sniffles.
The doctors say that I will probably be on a maintenance
dose of Revlimid for the duration. This
is a bit of a financial setback, as Revlimid is an expensive drug. It price is $10,000 for one cycle. Luckily, Medicare Part D insurance covers
much of the cost, but still the first cycle each year ends up costing
$2800. Then you quickly blast through
the “donut hole”, and you are in what they refer to as catastrophic coverage. During catastrophic coverage the patient pays
5% of the cost of the drug, in this case $500.
So each year ends up costing about $8,000. So whenever Barbie and I have an argument
about money, she rails against my cost of drugs. In my case staying alive is an expensive
habit.
Much more interesting news: we now have 5
grandchildren. Two new baby boys joined
the Jones clans in late January and early February. Gabriel in Vermont and Jack in Jamaica
Plain. All appear to be doing fine, and
the families are adjusting to having 2 or 3 children. Much like 2 or 3-ring circuses. At least one of the older siblings is just
beginning to learn that the world no longer revolves around him. Quite a shock! Here is Barbie holding Jack, the new addition to Jamaica Plain:
Right now I am somewhat hobbled because I overdid it
clearing snow from our roof here in Stow and helping Brian clear snow from the
back porch roof in Jamaica Plain. But
once the bruised back recovers, I will be back out running so that I can at
least hobble for 5K on April 26th.
