-Dear Meliza and Scott!
Thank you very much for your time, support and explanation. All
this information of course is new for me!! I hope, I really hope
that everything is going to be fine!! Now I understand that if I'll
start my chemo soon that we will not go anywhere. I agree that it
can be very dangerous.
The thing is, I can't understand how they can start my chemo if
they didn't finished with my test that need to be done with!!!??
Also, I didn't have an appointment with my future oncologyst yet.
She hasn't seen my results. I need to have a CT done of my whole
body, with byopsy of bone marrow, and also they havn't completely
looked at my first byopsy test???? How can they decide what kind of
chemo I need if they don't know what kind of Ewing's sarcoma I do
have??? This is strange for me!!!!
I'm gonna call tomorrow to the doctor and ask her these
questions?? Maybe I'll have a chance to start my chemo in 2 weeks,
because I wish this vacation. I had a tough summertime!! I had the
bunion surgery on both feet just 4 weeks ago, amd I just need this
vacation before I'll start my surviving for next year or so.

Thank you very much again for your support!! I wish you the best!!!
Be happy and healthy!!!
Could you please tell me a liitle bit about diet during chemo or may
be some references?

Have a great day!
Sincerely,
Olga
-- In ewingssarcoma@yahoogroups.com, "omeliza" <omeliza@...> wrote:
>
> 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
>