On Tuesday I had an appointment with my hematologist. He has been following the results of my blood work - in particular of the free light chains (serum proteins) in my blood in the aftermath of the stem cell transplant (these are the key indicator of the state of the multiple myeloma and amyloidosis in my body). To his surprise the numbers did not drop to the level that he expected as a result of the stem cell transplant, nor have they remained stable. Instead, they are once again on the increase. This is an unexpected result, given that he had hoped that I would benefit from a lengthy period of remission (perhaps a number of years) before requiring further treatment. However, as all the information about multiple myeloma indicates, every case of this disease is unique unto itself. We are now discovering some of the peculiarities of my version of multiple myeloma and amyloidosis. That's the disappointing news.
The good news
is that there are now other treatments available to me (which were not
available as recently as a few years ago). As a result, I am to begin a
second line of treatment on March 5. Last week my doctor applied to the
BC Cancer agency for approval for me to receive Revlimid
(also known as Lenalidomide - a relative of Thalidomide) and this
request has been granted. Revlimid is an oral chemotherapy drug that is
taken once a day for twenty-one days each month. This means that I do
not need to go to the hospital to receive treatments. I will remain on
Revlimid so long as it is working and does not have negative side
effects that would outweigh the benefits of the drug (some of the
possible side effects are thrombosis, decreased platelets and white
blood cells, skin rash, etc). This treatment may well last for a number
of years until the myeloma returns. Revlimid is given in combination
with Dexamethasone (the same steroid that I was on for three months last June through August).
For the first four months the dose of Dexamethasone is the same as I
was receiving last year. After the first four months the dose is reduced
from twelve days per month to four days per
month which sounds much more manageable to me. I am definitely not
looking forward to four months back on those high doses of steroids and,
I suspect, neither are my family, friends or congregation. I will be
having blood work done every two weeks for the time being so that the
doctor can keep a close eye on the effects of the treatment.
am, of course, disappointed by this turn of events and am sorry to have
to pass the news along. I wish that we could enjoy the benefits of some
years of remission without needing to resort to chemotherapy. Alas,
that is not to be the case. To be honest, I felt like punching the wall
when I heard the news. Fortunately I thought better of that plan and so
my arm is not currently in a cast. At the same time I am
finding myself able, mostly, to accept this new reality and ride with it. This
cancer feels like a strong river current. It is too powerful for me to
try to swim upstream. Instead, it seems best to ride with the current as
the doctors try to slow it down as much as is possible. Because
my only symptoms are bio-chemical ones detected by blood tests it still
seems odd to think that I actually have incurable cancer and amyloidosis.
Nonetheless, I get it. Yes, I am inevitably going to have to deal with
clinical symptoms down the road. In the meantime, I am grateful for the
gift of this time even as I steel myself for four months
of high doses of Dexamethasone.