Leukemia cells - the enemy
I had hoped that this blog update would be a celebration of
the end of overnight hospital treatments.
Indeed, I completed my last round of Hyper CVAD treatment on Feb 4 and
happily skipped out of Cedars Sinai expecting not to be admitted back for any
admissions. However, I spiked a fever the following Friday and was readmitted
for the weekend. The fever was a not
unexpected result of the amount of chemo my bone marrow has received. There was
no associated infection. It was just
that my bone marrow had taken quite a beating with 12 chemo sessions over the
past 9 months. My immunity levels were
near zero. In fact, I had NO white blood
cells for about a day. But, as expected,
I began to recover and was sent home on Monday with the expectation that I
would just get progressively better. And I have been. Right now, I feel pretty normal.
Last week, I went in for a bone marrow biopsy, which is the
test that shows whether or not any leukemia cells could be detected. This is my 4th since my diagnosis
last Spring and the other three results were MRD-, meaning no cancer cells
could be detected. I was expecting the
same result with this one. But…
The results showed that 1 in 10,000 cells did look suspiciously
like a cancer cell. That one cell can
replicate quickly and result in full blown leukemia. In other words, I’m not in remission…I’m in
relapse. So, continued treatment is
necessary.
Here is the plan:
More chemo won’t help. I’ve already had a shit-ton. So, starting March 11, I will be admitted to
Cedars. A PICC line will be reinserted
(the one I had was removed last week) and it will be connected to a fanny pack sized
pouch that contains a medication called Blinatumomab. This is an immunotherapy medication that specifically
targets the antibodies that were detected in the biopsy. They
will keep me in the hospital for 2-3 days to see how well I tolerate this
medication…as the side effects can be very severe if my body doesn’t like
it. Assuming all goes well, I’ll go home
and wear this “fanny pack” for 4 weeks while it continuously infuses me with
the medication. After four weeks, I’ll
get another biopsy and if it there are not active cells, that will probably
take care of this phase of the treatment.
If not, I’ll be connected for 4 more weeks.
I will also be headed for a transplant using cells from a
donor. Good news here is that a donor has
surfaced and he is a perfect 10/10 match.
Assuming he can be contacted, is healthy and is willing to do it, I’ll
be scheduled for a transplant in a few months.
If the transplant goes well, I’ll be cured of both the leukemia and the
myeloma.
This continued plan generates many concerns. Such
as:
- Finding the best transplant match. If the 10/10 can’t do it, we would have to settle for a less good match…which increases the potential for me to experience some level of cell rejection…called graft versus host disease (GVHD). This can be mild…such as a recurring skin rash or dry eyes…or severe…can’t get out of bed. The better the match, the less likely I’ll experience anything significant.
- The blinatumomab: First of all, it is a very expensive medication. $189,000/month. It is labeled for use when cancer cells are 1 in 1,000. Since my percentage is currently much lower, we will have an argument with insurance…although my doctor has done it before and feels confident we can get them to cover it. Meanwhile, as indicated earlier, the medication can cause some very severe issues, although these will be apparent at the outset..which is why I’ll be under hospital observation for the first several days. After that, there doesn’t seem to be much to worry about, expect that I’ll have this damn pouch connected to me 24/7 for a month. The normal side effects are minimal.
What
is the long-term prognosis? At this point, according to my doctor, it will
depend on a lot of things such as the donor characteristics, my overall health etc. So that merits further discussion.
Needless
to say, I’m depressed that I’m not finished with treatment and anxious about
both the short-term discomfort and the long-term prospects. My gut says I’ll be OK. And of course, I’m willing to endure all of
this if it results in a cure. Nothing is
certain, but I intend to soldier forward as I always do. I’ve already been through a transplant, so I
basically know what to expect there. This
will be a little different is that I have an outside donor, so I’ll have to
take anti-rejection meds for a few months after the transplant. Side effects are usually pretty benign.
So
that’s the latest. As always, I appreciate
your love and support. I’ll update you
as things come together.
Ed, you are in our prayers and will be until you shimmy out of Cedars on your own, two feet.
ReplyDeleteThe De Salvo's
Praying for you and your successfully matched transplant. Love you!
ReplyDeleteOh, Ed. I’m really sorry to hear about this setback. You’ll surmount it, I’m sure—with your spirit. As the cat on the poster says, “Hang in there.” Wishing you the very best. (:-)
ReplyDeleteEd, you are one resilient guy. This is a battle I pray you win.
ReplyDeleteEd call me when your home, bored and feel like chatting. I'm free on weekends....although, this Sunday im prepping for my colonoscopy.
ReplyDeleteMy cell is 310 529 0448 .Jay
DeleteYour in my thoughts and prayers. You have an excellent strategy and disposition to see this through! All the best. You’ll in the stretch and will beat this once and for all.
ReplyDeleteSo the accomplished battler and survivor is called upon for another act. You'd think by now that disease would recognize the futility in challenging you. Sending energy your way, as always!
ReplyDeleteEd: Soldier on! Your body has been through so much with the harsh chemo treatments infused in your veins. Your team of oncologists have been amazing with their knowledge and the new fanny pack costly treatment. I so admire your inner strength. I admire your positive can do attitude and your zest for life. Press on my friend. You are an inspiration to all of us that have followed you on this challenging journey. All the best.
ReplyDeleteNot the best outcome but the 10/10 sounds promising! Stay positive.... for us novices, what is the “cost” to the donor? I don’t mean monetarily, but otherwise. Why is it that some people volunteer for a donor list but then choose not to do it?
ReplyDeleteThinking of you and wishing you the best.
ReplyDelete