Below, you can read
a sort of reportage of my own experience of a bone marrow
transplant. I underwent the transplant in March 2009 to beat my
Acute Promyelocytic Leukemia. I have been in a sterile room for
about two months and experienced most of the typical effects
that a patients can experience in such situation. I hope my
description is clear enough for you to understand more about
this not very well known procedure. I also hope that my personal
point of view will be both easier and more interesting to read
than most technical information you can find elsewhere on the
internet. You are welcome to comment at the end of the article.
Enjoy!
The moment of the transplant was, as I had
anticipated, magic. Allow me to clarify that a bone
marrow transplant is NOT an operation, and that the
bone marrow is NOT the spinal marrow! It is much
easier to use instead the term “marrow blood” to
indicate the blood that runs inside of our bones,
all of our bones. This blood is particularly rich of
hemopoietic stem cells, that is the ‘mother’ cells
that give birth to all blood cells: red cells, white
cells, and platelets. Every day, these blood cells
die after having done their respective jobs, and
they are substituted by new cells generated by the
mother cells: the hemopoietic stem cells. Leukemia
is the cancer that affects these stem cells, and
leads them to produce wrong quantities of blood
cells, causing severe damages to the body, which can
lead to death if not cured. The most effective way
to cure leukemia today is to completely destroy this
system of out-of-control mother cells, and
substitute it with a new one coming from a healthy
donor. This is called a bone marrow transplant. So
the bone marrow is not white but it’s simply the
blood that runs inside all of our bones, rich in
stem cells.
You had the chance to learn more about the dimension
of donation, thanks to my brother’s article (soon
available here). This blood was taken from him by
means of surgery, inserting needles in his hips
bones in total anesthesia. There also exist another
procedure, less invasive, by means of which this
blood and stem cells are collected from peripheral
blood, after mobilization, like it was a normal
blood donation. There exist advantages and
disadvantages for both donor and recipient, but I
won’t treat these here.
Once taken from my brother, this blood was given to
me via central line. You can see in the photos how
this looks exactly like a normal blood infusion.
This was for me a very emotional moment, I had my
eyes and mouth wide open in wonder, watching every
single drop fall down and enter my body. After two
years fighting this was a very symbolic moment.
However, as I said, the blood infusion is just one
of the phases of a transplant.
The infusion of bone marrow blood, aka the
transplant!
To help you better understand what a bone marrow
transplant is, I will use a metaphor. Imagine an
island surrounded by a barrier reef. The reef is
live marine vegetation, which produces oxygen and
food for the fishes that live around that island.
Now imagine that the reef gets sick, and stops
producing food in the right quantities. The fish
slowly begin to die. At this stage, the only
solution is to kill this sick vegetation, remove it
completely, and plant new, healthy corals, coming
from another reef. This cannot be done by hand. You
can’t take the plants off one by one and substitute
them with adult ones. The only way is to kill the
vegetation with chemical products and radiations.
This is how a bone marrow transplant begins: the
patient is given high dose chemotherapy, sometimes
accompanied by total body irradiation to destroy the
existing sick marrow.
Right after, new ‘seeds’ are sampled from a healthy
reef. These are the donor’s stem cells, that are
laid on the dying reef, with the aim of settling
there and beginning to create a new, healthy
vegetation. For this to take place however, two to
three weeks are necessary. During this time the fish
is left with little to eat, and they have to work
hard to survive. In transplant terms, this means
that the patient needs continuous infusions of fresh
blood and platelets, and remains exposed to a high
risk of infection, because it is not possible to
infuse white cells. For this reason, a BM transplant
is carried out in a sterile room, where the patient
is kept for the whole time necessary for the
process, which is about a month and a half on
average.
Unfortunately, the “chemo+radiation” bombing hits
everything, and involves all rapid-replication cells
of the body, that is for instance the skin cells. In
a healthy body, the superficial skin cells
continuously die, and are substituted by new ones
that are generated beneath. Chemotherapy and
radiation block the process of new cell creation, so
that when the superficial cells die, there are none
ready to substitute them. This takes place
particularly in the oral cavity, stomach, and
intestine, causing what is known as ‘mucositis’.
After a few days from the transplant, I began to
feel pain in my throat, which intensified every day.
It got to the point where it felt like a bee was
stinging me every time I swallowed. Also my mouth
hurt and I lost my voice. There is no way to avoid
this phenomenon, only the pain can be managed. Morphine worked for me, or better they
stoned me to the point that I could sleep and not
think about it. I had to stop eating and drinking,
because my irritated stomach was sending everything
back. Also body hair is rapidly-replicating cells,
this is why people who does chemotherapy lose their
hair: the lost ones are not substituted by new ones
for a while.
After a few weeks the new bone marrow settles inside
the receiver’s bones, and begins to produce new
blood cells. Just like they were ‘seeds’, in this
period you can only wait and be patient, trying to
handle all side effects, and deal with the fever
that comes in most cases.
This phase was particularly tough for me, both from
a physical and psychological point of view. During
these two years I thought I had tried everything,
and I really didn’t expect this one to be so hard.
Fever got me on a Sunday morning, and at the same
time the pain from the radiation burnings
intensified, particularly on my chest, neck, back,
and hands, until it became really hard to stand. My
hands were particularly problematic because you use
them for everything, and when they are burnt
touching any object is torture (imagine even just
taking a shower or brushing your teeth!).
Hand burning caused by total body
irradiation (TBI)
From a psychological point of view, fever at 40C
that doesn’t go down, while your white cells count
is zero, is a very scary condition. As human beings,
we are so used to being on top of the food chain
that we never feel threatened by anything, to the
poinSkin rash caused by the graft versus host
disease (GVHD)
Then my values recovered and I began to feel better
every day. We also had to deal with a graft versus
host disease (GVHD). This happens when the donor’s
marrow recognizes certain tissues of the
receiver/host as an enemy, and attacks it. In my
case it turned into further skin burnings, that then
gradually disappeared thanks to high doses of
cortisone. The new marrow is now working great and
producing good values (thank you Mickey, this marrow
rocks!:). In a few days we will test my new bone
marrow to see how things are going. They could let
me go home soon (but I’m superstitious and would
rather not talk about this), and it seems like the
next months will be determinant. The therapies I was
subject to were the strongest possible ones, and my
whole body, not only my immune system, will need
much time to recover completely. Further, the first
six months from the transplant are statistically the
most delicate ones. If I manage to get through
without further trouble, then I’ll really be able to
relax. A bit more patience then, but boy it’s worth
it!
I care about being sincere with you, and telling you
t that we seek extreme emotions climbing mountains
or jumping off airplanes with a parachute. Being
without defenses exposes you to invisible predators,
virus and bacteria, that can be fatal to you. The
sensation of being fighting every second for
survival, in the hope that the new marrow starts
working soon and come to your rescue before the
micro-predators take over, is true adrenalin.
Skydiving is for beginners!
Skin rash caused by the graft versus host disease
(GVHD)
Then my values recovered and I began to feel better
every day. We also had to deal with a graft versus
host disease (GVHD). This happens when the donor’s
marrow recognizes certain tissues of the
receiver/host as an enemy, and attacks it. In my
case it turned into further skin burnings, that then
gradually disappeared thanks to high doses of
cortisone. The new marrow is now working great and
producing good values (thank you Mickey, this marrow
rocks!:). In a few days we will test my new bone
marrow to see how things are going. They could let
me go home soon (but I’m superstitious and would
rather not talk about this), and it seems like the
next months will be determinant. The therapies I was
subject to were the strongest possible ones, and my
whole body, not only my immune system, will need
much time to recover completely. Further, the first
six months from the transplant are statistically the
most delicate ones. If I manage to get through
without further trouble, then I’ll really be able to
relax. A bit more patience then, but boy it’s worth
it!
I care about being sincere with you, and telling you
the truth about this disease, and the transplant.
The reason for all this weeping is certainly not to
attract your sympathy, but rather allow you to
understand something that maybe nobody else will
have the courage or will to tell you. Life is hard
for ANY cancer patient, ANY type of cancer, and if
one of these told you that her therapy was a piece
of cake, know that she only did that cause she
didn’t want to bother you, or because in her head
she thought that you can’t understand anyway. True
that there is nothing like trying it yourself, but
it is not right that the person involved remain
alone, and the people around remain ignorant.
I think I can be credible if I tell you that this
transplant, carried out at full throttle, was
seriously heavy. After two years experiencing all
sort of things, including intensive care (twice),
emergency surgery, hematology, and now the
transplant centre, I think I can almost objectively
tell how bad is ‘bad’. The reason I’m telling you
this is that I really can’t think of even just one
other person having to experience what I have been
through. Cancer incidence is increasing; ever more
people get sick, and ever younger. I realized this
especially in the day hospital, where I had the
chance to meet so much young people. With this
situation, we can no longer play the musical chairs
game just hoping that it won’t be us the unlucky
ones standing when the music stops. Chances are too
high, and we can’t keep on hiding our heads in the
sand and pretend the problem doesn’t exist simply
because it scares us to even just talk about it.
It’s time to face reality.
At diagnosis, I wondered why didn’t I do something
when it was in my power to change things. I don’t
want anyone to find himself in the same situation,
with the same regret.
The good news is that, together, we CAN change our
future. For this reason, I encourage you to act
RIGHT NOW, checking out the page “Help BL” of this
website, where you can find the list of reliable
organizations that fight leukemia in your country.
There you’ll be able to choose in what way you
intend to join the fight, whether as donors,
volunteers, or by becoming blood and/or bone marrow
donors. If your country is not in the list but you
know a reliable local organization, please let me
know about it so I can add it. If your country is
not present and you don’t know where to contribute,
know that research networks are global, and results
are shared in real time between scientists, so it
doesn’t matter where or how you contribute, your
help will still have an impact.
Let’s kick this ball back in the face of the sender.
We didn’t ask for it, and we don’t deserve it.
www.beat-leukemia.org
Fondazione Beat Leukemia Dr Alessandro Cevenini - CF 94618790151 | Legal Notices | Realizzazione sito web: Progetto Web