Hi Olga--

My name is Meliza, I'm 31 and I have another type of Ewing's Sarcoma
called Desmoplastic Small Round Cell Tumor (DSRCT). My type of
cancer is located in soft-tissue, in my case the abdominal region,
but it is still in the Ewing's Family so there are similarities with
what you've got.

I've completed 15 round of chemo (have 2 more to go) and have to
agree with Scott; going to Mexico after your first round of chemo
might put you in real danger. I know this isn't something you want
to hear since a trip to Mexico sounds like fun and is probably
something you've been planning for a while, but if you travel and
are exposed to bacteria when your white blood cell counts are very
low, you are extremely susceptible to infections and that can spell
real trouble. Your body just doesn't have the defenses to stand up
and fight the bacteria on its own. Like Scott mentioned, it's
imperative to stay on your chemo schedule. If you must go to Mexico,
maybe you could talk to your doctor about putting off your chemo
until you return. Then you'll be able to enjoy your trip and not
worry about infection.

Scott covers a lot in his response and I agree with all of it. My
recovery cycle has been similar, though I'm on 5 different chemo
drugs, not 3 like him. (My treatment protocol includes Vincristine,
Cyclophofamide, Doxurubicin, Ifosfamide and Etoposide.) I'm not sure
if you'll be on the same type of chemo as me (my first 10 rounds
were given in the hospital because the dosages were so intense that
it couldn't be given outpatient), but it should be similar. I'm
guessing you won't have the hospitalization component in your
protocol so I'll just tell you what my recovery has been like now
that I'm getting chemo outpatient.

I have the chemo and have to stay in bed 1-3 days. (It feels like
I've got a bad flu.) I perk up for 1-3 days and then I'm down again,
this time feeling quite flu-ish for 2-5 days. I'm happy to report
I've had almost no nausea. I do think the major changes I made in my
diet is one of the reasons why I haven't had the nausea and vomiting
that some others experience. (I follow the chemo diet from "What to
Eat If You Have Cancer.") I've had mild neuropathy (tingling in only
my left hand and some jaw discomfort), as well as mouth sores and
some stomach aches/constipation. Oh, and the hair loss. (I keep
forgetting about that. I've adapted to my wigs a little too well...
Seriously, I love not having to style my hair every morning. Who
says there aren't any perks to chemo?? :-) I've lost my eyebrows and
eyelashes. I've learned how to draw in my eyebrows and wear my
glasses instead of my contacts to give my eyes some protection.
There are also some side effects that I've experienced a little more
as the toxicity accumulates in my body. Those effects have been more
intense/lingering fatigue and some memory/mind problems.

Unlike Scott, I have had to give myself Neupogen (aka Neulasta-
white blood cell booster) shots for 7-10 days after my chemo since
the beginning. I've also had to do Procrit (once a week, every week
between cycles) to boost my red blood cell production for most of
the time I've been on chemo. Additionally, I've had to have 3 blood
transfusions through the last 10 months of chemo. I've been
hospitalized 2 times when I had temperatures over 101.3. I didn't
have infections (thank goodness) any of those times, but it was
incredibly important for me to be close to hospitals just in case I
got a fever. (Fevers are a natural reaction to the chemo. So are hot
flashes. They didn't tell me about those; I found that one out the
hard way ;-)

I don't want to scare you with all of this Olga, but I've got to be
honest. This is a really tough road we're all on and fighting the
cancer will be the focus of your life for the next year or so. But I
promise things will get easier for you as you learn your recovery
cycle. You'll learn what times you're going to feel better than
others and will be able to plan accordingly. I've been able to take
a few road trips between chemo rounds recently and they've been
great fun. As a matter of fact, I'll be driving Monday from San
Francisco (where I live) down the California coast to Santa Barbara
and LA for a few doctors' appointments and little R&R. As for
everyday life, I can't work (I'm on disability) and I focus on
staying healthy and running errands. I try to avoid driving while
I'm in "recovery mode" since I can get dizzy when I look over my
shoulder for lane changes. There are some days I need to stay in bed
and others that I can run errands and visit with friends or take a
nice long walk somewhere. (My stamina has taken a hit.) In general,
I feel best after day 10 when I've already "recovered" from my chemo
round. Oh and then there are the various doctors appointments and
tests that I have to do. They vary and are scheduled as needed. The
regular blood work I usually have to do is a CBC (complete blood
count) around 8 days after my chemo to make sure my blood counts are
recovering sufficiently, as well as a complete work-up (CBC, liver,
kidney tests and urine analysis) the day before my chemo rounds.

Well Olga (and everyone else), I hope I've answered some of your
questions and have been helpful. Please don't hesitate to contact me
either through this group or privately if you have any further
questions. I'd be more than happy to help.

Wishing you and everyone else here the best,
Meliza

--- In ewingssarcoma@yahoogroups.com, "Bernice/Scott Alcott"
<scottbernice@...> wrote:
>
> Olga,
>
> I think you will learn soon that this is quite serious and will
take most of
> your full time attention for about a year. It is generally not
something you
> will squeeze in between normal life. Your question is the wrong
one. It
> isn't just a question about how you feel that determines the
possibility of
> going to mexico. There are many other factors beyond "how you
feel" that you
> need to be aware of.
>
> In addition to the chemo being given every 21 days and having a
large
> physical and mental impact on you, you will have to have other
appointments,
> checks and follow-ups during the treatment; you will have many
side effects,
> possibility of hospitalization, many drugs to take. The treatment
is heavy.
> It does damage. It needs to be monitored. The treatment itself can
land you
> in the hospital any time. There are administrative things that are
> important. Typically you will have a doctor's appointment 7-14
days after
> chemo--not something to cancel, they will check that you are safe,
you will
> have blood work taken at a lab to check on things like your liver
function
> and overall toxicity from the chemo, you will have a shot during
your cycle
> to boost white blood cells. This is serious stuff and has to
happen on
> schedule every time to be sure they can read your patterns
consistently.
> There's much to do, much to monitor and lots of events that happen
and can
> go wrong DURING the chemo cycle. It isn't like getting a shot and
then you
> run.
>
> At around day 10-14, chemo will lower your white blood count to
their lowest
> and you will be open to serious infection--something that can
hospitalize
> you if a fever hits 100.5--and an infection is something that can
kill you
> if untreated in this state. During that time you can't eat certain
things,
> need to avoid crowds (like airplanes), you will be rinsing your
mouth
> constantly, disinfecting your hands, staying in. It's probably the
exact
> wrong thing to do to be in an airplane, around crowds and exposed
to the
> known bacteria in mexican foods, at day 10.
>
> Everyone reacts differently to chemo. There are stages you move
through
> within the 21 day treatment cycle. You need to do it a few times
to know
> your typical pattern. Probably a bad idea during the first
treatment BEFORE
> you know your cycle to be faraway and in mexico.
>
> Here's the program and how I reacted and the timing. You may have
a
> different reaction on different days. You will be on 3 drugs,
several
> anti-nausea medicines, steroids and a drug to boost your white
blood cells
> (eventually):
>
> *Day 1-2: Most of these days lost/full time getting chemo injected
(feel ok
> but poisoned)
> *Day 3: doctor appointment to get neulasta shot (white blood cell
booster)
> *Day 1-8: BIG fatigue, mentally not very sharp, feel overall
poisoned, no
> vomiting but lots of stomach burn and cramps and hiccups (side
effects from
> steroids and anti-nausea meds). Able to walk and talk and function
but feel
> crappy. First time it was the worst probably because i didn't know
what to
> expect.
> *Day 10-14: white blood cell nadir (low point) for me it's day 10-
12,
> physically feel worn out, low fever going up and down, avoiding
people and
> crowds, and uncooked foods...Mouth sores show up. Coughing from
flem in
> mouth throat.Very typical time to be hospitalized due to side
effects.
> *Day 12-15: starting to feel normal again...(usually for me it was
day 11),
> white blood cells coming back, chemo mostly out of my system and
doing ok.
> Mouth sores dissipating. Coughing decreasing.
> Day 14-21: pretty much feel TOTALLY normal and able to do anything.
>
> The above can vary. Your toxicity level cumulates. AS you take
additional
> treatments, you will develop new risks and new problems. Toxic
cumulation
> will impact everything from your heart to tingling in your hands
and feet.
> You will lose your hair, even your eyebrows and eye lashes
starting around
> the 2nd treatment, you will find your endurance falls and you got
out of
> breath easier.
>
> I tolerated chemo very well. I went out to restaurants, walked and
talked,
> did email/phone work, saw family and friends, made a road trip by
car 800
> miles and even played tennis through it. I did most of this after
having
> solid knowledge of my cycle/timing and body reactions. I avoided
> hospitalization but got close twice. It is all possible but
requires a
> serious approach and lots of planning. For me, mexico 10 days
after first
> ever treatment sounds like a really bad idea.
>
> Best regards,
> Scott