I am now into the 3rd week of Cycle 3, where I
have no more chemo-therapy sessions. I
do take a final Revlimid pill tonight, but then only “normal” pills for the
rest of the week. I am feeling much
better. I am getting around with just 1
cane when out and about. If I am just
moving about the house, handrails or just trying to walk up straight suffice. I am still hunched over in the upper back and
hunched under in the lower back, so the back does get tired fast. But it has been a long time since I’ve broken
anything, and everything feels as if it has healed as much as it is going to.
The key blood test, named Free Lambda, Serum, continues to
improve dramatically. At the start of
Cycle 1 it was 1329. At the start of
Cycle 2 it was 317, a reduction to 24% of the starting number. That merited a call from Katie Conway, the
Physician’s Assistant, to congratulate me.
On 7/17 the number was 54, a reduction to 17% of the prior number. This didn’t generate a phone call, but the
substitute PA last week did say that it was a very good reading. Normal is still 5.7 – 26.3, so I have a ways
to go, but so far the progress has been dramatic and encouraging.
Here is a simple graph of the progress:
The issue this past week is that my INR spiked. The INR is a measure of how much you are
anti-coagulated. I am back on Coumadin because
Revlimid causes a 30% increase in blood clots.
Since I have had 2 pulmonary embolisms, I am pre-disposed to blood
clots. Furthermore, having cracked bones
and having cancer both increase the likelihood of blood clots. Add in the Revlimid, and the danger for me of
a blood clot goes way up. For the
longest time my target range for INR was 1.5 – 2.5 because I was playing
soccer, and they didn’t want a bruise to cause undo internal bleeding. But since I am no longer playing soccer and
they want full anti-coagulation, the target range is now 2-3. [Normal people who are not on an
anti-coagulant have an INR of 1.] Well,
once in Cycle 2 my INR spiked to 4.4. That
reading was dismissed as possibly an invalid test. This past Friday, the reading came back as
4.7. I was told to self-test once I got
home, to verify the test. Well, when I
got home, the self-test INR was 5.5. So
clearly this was not a spurious test. I
have not been dealing with the Coumadin Clinic since May, as I was assuming
BIDMC was taking over that role. But
they were called in, and recommended skipping the Coumadin for Saturday +
Sunday and retesting Monday. The Monday
test was 2.2, well within the range. So
I am to resume my normal dosage, and everybody will monitor what other
medicines I am taking to see what corresponds to increases in my INR
levels. 5.5 is quite high, but it is
only of concern if you are actually bleeding, as you are highly unlikely to
clot, thus making the bleeding a problem.
Should I have a bleeding episode while the INR is high, the antidote is
Vitamin K.
Friday afternoon, I saw a back surgeon at Beth Israel, Dr
Kevin McGuire. Dr Levine had said to see
the back doctor well before the stem cell transplant, as if they wanted to do
any corrective surgery, it needed to happen before my immune system is wiped
out. Dr McGuire pointed out several
vertebrae that are no longer their normal square shape. Instead they are triangular, which results in
my back being hunched over in the upper back or hunched under in the lower back. I asked if there was any mechanical fix. Dr McGuire said there was, but he would not
recommend it. The fix is to fuse various
vertebrae and to stick in metal rods.
But the failure rate is quite high, and in 20% of the cases, there are
issues where leg function is lost.
Instead, he prescribed physical therapy.
Both to strengthen the back muscles and to loosen the hip or leg muscles
that hold the back in place so that my posture can be as vertical as possible. Certainly physical therapy was able to do
wonders after my hip surgery. I
certainly hope it is able to play a similar role for my back.
Barbie & I are now in Vermont, babysitting for our
grandson, Tyler. He is 2 years, 5
months, a wonderful age. Jabbering away
and excited about everything in life. A
joy to be with. On Wednesday we return
to Lake Winnipesaukee, where I discovered that swimming with a life vest does
cause the back to stretch out and relax more than regular swimming.
Thanks for the update. All that support in the water for your back must be great!
ReplyDeleteWe are thinking of you. As always, let us know if we can do anything to help.