Chemo for seven months!

Hello,

I posted a couple of weeks ago (about being diagnosed at 27). Thanks to
EVERYONE for the replies and warm welcome!

I did one chemo treatment the Friday before last and breezed through it
with no side effects. I was supposed to go back December 8th, BUT I
went to my oncologist this past Friday and he changed the treatment
plan on me.

Now, starting this Friday, I'll have to take oral cytoxan every day for
16 weeks. Along with this, I'll have weekly IV treatments of
Adriamycin.

Neupogen shots every day except Fridays.

And following all of this, I start on Taxol when I'm done with the A/C
-- and I think that lasts for 16 weeks as well!

Has anyone else been through this? This seems like an awful lot of
chemotherapy. It's kind of scary. I'm worried about the effects it will
have on my immune system. I know those stupid shots will help with
that, but does anyone have any other suggestions for protecting my
immune system as best I can through all this?

I'd like to keep on working. My oncologist claims that people are able
to work while going through this treatment. He did warn me of side
effects such as mouth sores (which I'm really not looking forward to,
I'm a radio announcer) and possible sores on my hands and feet. He
didn't bother mentioning that Cytoxan can be harmful on the bladder but
everything I've read about it mentions that.

Any ideas on helping manage mouth sores? Also I should be drinking lots
of water, right? Is tap water safe? (I wonder because of parasites??
and being more prone to infection.)

Any suggestions on getting through this are appreciated! Right now it
seems neverending and SCARY!

thanks,
tammy

PS. I'm trying to keep blogs of my experience if anyone is interested
they're at MySpace:
http://www.myspace.com/nellswell

Hello Tammy,

Comments are interspersed below:
> Hello,
>
> I posted a couple of weeks ago (about being diagnosed at 27). Thanks to
> EVERYONE for the replies and warm welcome!
>
> I did one chemo treatment the Friday before last and breezed through it
> with no side effects. I was supposed to go back December 8th, BUT I
> went to my oncologist this past Friday and he changed the treatment
> plan on me.
>
> Now, starting this Friday, I'll have to take oral cytoxan every day for
> 16 weeks. Along with this, I'll have weekly IV treatments of
> Adriamycin.
>
> Neupogen shots every day except Fridays.
>
> And following all of this, I start on Taxol when I'm done with the A/C
> -- and I think that lasts for 16 weeks as well!
>
> Has anyone else been through this? This seems like an awful lot of
> chemotherapy. It's kind of scary. I'm worried about the effects it will
> have on my immune system. I know those stupid shots will help with
> that, but does anyone have any other suggestions for protecting my
> immune system as best I can through all this?


My diagnosis and treatment were twenty three years ago, so the drugs were
somewhat different, but I did chemo for a full year. I had a month of more
intense treatment, with 5FU, Vincristine, Cytoxan and Methotrexate and a
Steroid. This was followed by three weeks on and three weeks off (the same
drugs) for the remainder of the year. They didn't give Neupogen then, so
the counts just had to come back naturally.

>
> I'd like to keep on working. My oncologist claims that people are able
> to work while going through this treatment. He did warn me of side
> effects such as mouth sores (which I'm really not looking forward to,
> I'm a radio announcer) and possible sores on my hands and feet. He
> didn't bother mentioning that Cytoxan can be harmful on the bladder but
> everything I've read about it mentions that.

I worked the entire time as a kindergarten teacher. I had mouth sores once,
but by the time I saw the oncologist, they had disappeared. He gave me a
medication in case they appeared again, but they never did. I was told that
I'd need to go to the bathroom frequently because of the cytoxan....but the
oncologist didn't really realize how difficult that is when one is in a
kindergarten classroom.
>
> Any ideas on helping manage mouth sores? Also I should be drinking lots
> of water, right? Is tap water safe? (I wonder because of parasites??
> and being more prone to infection.)

We have a drilled well, and I only ever drank tap water, but maybe you'd
feel better about it if you could ask an oncology nurse or your Dr. I was
probably "pushing it" to be in a kindergarten classroom around so many
viruses and bacterial infections, but I didn't miss a day of work because of
treatment or my compromised immune system.
>
> Any suggestions on getting through this are appreciated! Right now it
> seems neverending and SCARY!

I know that treatment of such long duration can be very daunting. When I
heard the plan for me, I thought I"d never get through it. Now, I'm very
glad I did what was recommended. The only time my dose of chemo drugs was
lowered was when my young daughter got the chicken pox. I didn't have a
problem with that virus, thank goodness. I've been NED since the end of
chemo in 1984----don't have any way of knowing whether the treatment plan
had anything at all to do with my outcome, but I know that I wanted to do
anything possible to lessen my chance of recurrence. As others in this
group have said, "Treatment isn't the finest hobby in the world, but it is
doable". I'm wishing you the very most benefit, with the fewest side
effects possible, Tammy.
>
> thanks,
> tammy
>
> PS. I'm trying to keep blogs of my experience if anyone is interested
> they're at MySpace:
> http://www.myspace.com/nellswell
>

Hi, Tammy,

<darnfloorbigbite@hotmail.com> wrote in message
news:1164659608.809331.291950@f16g2000cwb.googlegr oups.com...
> Hello,
>
> I posted a couple of weeks ago (about being diagnosed at 27). Thanks to
> EVERYONE for the replies and warm welcome!
>
> I did one chemo treatment the Friday before last and breezed through it
> with no side effects.

Excellent! Was that Adriamycin/Cytoxan, too? If so, and the onc's just
switching you to a different treatment schedule, that should bode well for
your future side-effects expectations, too.

> Now, starting this Friday, I'll have to take oral cytoxan every day for
> 16 weeks. Along with this, I'll have weekly IV treatments of
> Adriamycin.

Some people find lighter side effects with more frequent & lower dosing -
though you may not get the "good days, bad days" effect so much . . . which
can be either a good thing or a bad thing, I guess.

> Neupogen shots every day except Fridays.
>
> And following all of this, I start on Taxol when I'm done with the A/C
> -- and I think that lasts for 16 weeks as well!
>
> Has anyone else been through this?

I did 4 Adriamycin/Cytoxan by IV on an every-three-weeks schedule, then 4
Taxol on the same schedule, so you'll be on a more frequent/lower-dose
regimen, but the total time is more similar. It'll be a long slog, but
you'll make it a day at a time. It's pretty normal to do two forms of
chemo, each for 3-4 months, if you have aggressive or more advanced BC. I
think it's normal to treat younger women more aggressively, also.

> This seems like an awful lot of
> chemotherapy. It's kind of scary. I'm worried about the effects it will
> have on my immune system. I know those stupid shots will help with
> that, but does anyone have any other suggestions for protecting my
> immune system as best I can through all this?

All the usual boring stuff: Eat sensibly (they told me to avoid raw,
unpeeled fruit/veg for the duration due to bacterial risks). Get regular
exercise even when you don't feel like it. Get your rest, and on a
consistent schedule. Drink plenty of water. Don't overindulge in alcohol,
nicotine, etc. Don't take supplements without consulting with your docs:
My understanding is that chemo works by doing oxidative damage to cancer
cells, so major doses of anti-oxidants are perhaps not a good idea.

> I'd like to keep on working. My oncologist claims that people are able
> to work while going through this treatment. He did warn me of side
> effects such as mouth sores (which I'm really not looking forward to,
> I'm a radio announcer) and possible sores on my hands and feet. He
> didn't bother mentioning that Cytoxan can be harmful on the bladder but
> everything I've read about it mentions that.

I worked during chemo, though I had to take sick days off because I didn't
tolerate A/C well. I never got mouth sores, or hand/foot sores. There are
lots of possible side effects, of which only a few are near-universal. I'd
say, don't panic until you get there.

> Any ideas on helping manage mouth sores? Also I should be drinking lots
> of water, right? Is tap water safe? (I wonder because of parasites??
> and being more prone to infection.)

There are various mouthwashes & such that folks use for mouth sores if they
develop, and I'm sure that those who had them can advise you about that.

If you have normal city tap water or tested well water, you should be OK.
But if you're worried, get a water-filtering system, or water-filtering
pitcher, and use according to directions. This will include refrigerating
the filtered water to store it rather than leaving it sitting out, because
most of the protective chlorine gets filtered out.

> Any suggestions on getting through this are appreciated! Right now it
> seems neverending and SCARY!

It's a long haul, no question, but you'll get through it a day at a time.
And it *is* scary . . . but try not to let the fear & anxiety make it even
worse through anticipation of things that may never materialize. This is a
good time to do some nice things for yourself, pamper yourself, as a
distraction & indulgence. A massage (with your docs OK) is particularly
nice . . . .

You take care, and stay in touch with us, OK?

Ann T.
Remove 'dontsendspam' from address to reply by email

<darnfloorbigbite@hotmail.com> wrote:
> Hello,
> I posted a couple of weeks ago (about being diagnosed at 27). Thanks to
> EVERYONE for the replies and warm welcome!
>
> I did one chemo treatment the Friday before last and breezed through it
> with no side effects. I was supposed to go back December 8th, BUT I
> went to my oncologist this past Friday and he changed the treatment
> plan on me.
>
> Now, starting this Friday, I'll have to take oral cytoxan every day for
> 16 weeks. Along with this, I'll have weekly IV treatments of
> Adriamycin.
>
> Neupogen shots every day except Fridays.
>
> And following all of this, I start on Taxol when I'm done with the A/C
> -- and I think that lasts for 16 weeks as well!
>
> Has anyone else been through this? This seems like an awful lot of
> chemotherapy. It's kind of scary. I'm worried about the effects it will
> have on my immune system. I know those stupid shots will help with
> that, but does anyone have any other suggestions for protecting my
> immune system as best I can through all this?
>
> I'd like to keep on working. My oncologist claims that people are able
> to work while going through this treatment. He did warn me of side
> effects such as mouth sores (which I'm really not looking forward to,
> I'm a radio announcer) and possible sores on my hands and feet. He
> didn't bother mentioning that Cytoxan can be harmful on the bladder but
> everything I've read about it mentions that.
>
> Any ideas on helping manage mouth sores? Also I should be drinking lots
> of water, right? Is tap water safe? (I wonder because of parasites??
> and being more prone to infection.)
>
> Any suggestions on getting through this are appreciated! Right now it
> seems neverending and SCARY!
>
> thanks,
> tammy
>
> PS. I'm trying to keep blogs of my experience if anyone is interested
> they're at MySpace:
> http://www.myspace.com/nellswell
Tammy,

- my treatments we more like Ann's except accelerated. I took treatments
every 2 weeks i/o 3. This was possible because I took a Neulasta shot
the day after every treatment to boost white cell counts.

- I had almost no side effects (coming soon -- a testimony post on
how *little* side-effects are possible.) The Adriamycin is supposed
to be the toughest, yet the only side-effect I had was nausea
but *ONLY* when I didn't take my anti-nausea meds. I only needed
them the 1st four days. Now, mind you, I wasn't necessarily ill every
time I ate it's just that you never know how the smell or taste of
something will affect you. I had the most side effects with the
Taxol (I took my last of 4 treatments 11 days ago). I had no nausea
with that drug at all. I had some moderate to bad joint pain and some
bone pain (one place) starting about 2 days into the round for about
3-4 days or so of the 1st Taxol treatment. Once I got a strong enough
pain killer it took care of it. I never had the bone pain after that one
time.

The joint pain was mainly in my knees and feet -- it basically felt like
my worst case of plantar fasciatis (sp?). Oddly, it actually felt better
if I moved about. Subsequent Taxol treatments resulted in either
zero or barely noticeable reoccurrence of the joint pain. I have had
some minor neuropathy (sp?) more in my toes than fingers and it
is not the entire time and is supposed to be temporary. Some of
this may have been the effect of the Neulasta shot rather than the Taxol.
Minor skin issues; a rash occasionally (OTC Benedryl fixed that);
a few zits here and there (sort of funny at my age). Very dry skin
especially my hands from washing them so much with anti-bacterial
soaps. I have cats so I had to wash them a lot after handling them.
NO mouth sores, NO fatigue. NO whatever else is on the list.
Amazing, huh?

- I was more fearful of getting an infection than of the obvious
side-effects of the drugs. I think Emergency Rooms are very
dangerous places to be so my biggest goal was to stay out of
them and away from hospitals in general. Unfortunately that
meant I could not visit friends in the hospital after they'd been
so kind to visit me. Also my close friends mother was in and
out all summer and I couldn't visit. Unfortunately she passed
away two weeks ago and I couldn't visit her before her passing
or go to the funeral because of a mild stomach virus. But my
friends understood and worried more about me than I did
about them.

- I paid more attention to my hands and feet -- taking care not
to bump or cut fingers etc. -- watch out for paper cuts even.
Do not cut your cuticles. Get an orange stick and some good
cuticle oil. Also, if you have any neuropathy be careful testing
hot water or handling things around the stove. Burns can
become infected as well.

- I went back to work 2 months into the treatments. Had I known
how mild they'd be I could have worked the whole time (I have
a desk job, though). Like Ann, I'd just take the treatment day
off and sometimes part of the next day (sometimes the clinic
was so busy it took 2 hours to wait for a shot. I actually
missed more time from 2 silly viruses than anything else.

- As to diet -- ditto what Ann T. and Barb said. One note:
I'm not a big water drinker but one chemo nurse told me
fruit juice is considered the kind of fluids they mean. I
don't know where you are but if you're in the U.S. look
for Edy's frozen fruit bars -- they're yummy. Also if
you should have any nausea issues, cold food is more
tolerable than room temp or hot food.

- Dry skin -- I'm not a fan of greasy type lotions. I found
that a good anti-bacterial liquid soap that contained lotion
and Vit A&E worked well (mine came from Bath & Body
Works -- many malls have this store). Also switching to
a milder soap containing lotion, eg Dove, instead of my
usual Dial helped.

- They should have told you this but just in case; do not
take any meds containing ibuprophen.

I had more to say than I thought! I think I had a rather
light time of it and am so grateful. I prayed a lot more
(should have done that before, right? ;-) So, don't be
afraid and consider you have a younger body (I'm 53)
and can likely handle more than me! Oh, one last thing:
when people ask if there is anything they can do, they
probably are very sincere about it. Take them up on it.
Think past the obvious like bringing food etc. Just
letting them know when they can call or asking them to
send you a card occasionally (hopefully they'd do that
anyway), helping you dust or vacuum, etc. One of
my friends did a couple of hours of yard work for me.
One friend came over and played my piano for me.

Well, I've gone on too long. Tammy the time will be
gone before you know it. I read many books and still
got upset with myself because I didn't complete my
list of things to do and read.

Prayers for You,
Marsha

"A.P. Thorsen" <annthorsendontsendspam@yahoo.com> wrote in message
news:ekg8b3$gat$1@news.msu.edu...

>
> I worked during chemo, though I had to take sick days off because I didn't
> tolerate A/C well. I never got mouth sores, or hand/foot sores. There
are
> lots of possible side effects, of which only a few are near-universal.
I'd
> say, don't panic until you get there.
>
> > Any ideas on helping manage mouth sores? Also I should be drinking lots
> > of water, right? Is tap water safe? (I wonder because of parasites??
> > and being more prone to infection.)
>
> There are various mouthwashes & such that folks use for mouth sores if
they
> develop, and I'm sure that those who had them can advise you about that.
------------------
I, on the other hand, had terrible mouth sores, terrible sores on my hands
and feet, terrible everything. And that was before I started Taxotere, and
my *real* troubles began!!! But....that was in 2004, and here it is exactly
2 years since I finished chemo....and I'm still alive. (Knock wood.) And
that's what counts. I had an enormous, aggressive tumor, and the chemo
shrank it down to nothing, and all the pain and misery I went through was
worth it because I'm still alive. (Knock wood.)

When I had the mouth sores, I lived on tapioca pudding, applesauce, and
Campbell's tomato rice soup. These are all things I ordinarily never eat.

My boyfriend got me a blender so I could make whey-protein milkshakes. They
are a lot tastier than Boost or Ensure, both of which I find nauseating.
You can get whey protein in a health food store, or sometimes Target might
have it in the aisle with the Slim-Fast type stuff. One scoop of it gives
you 20 grams of protein, so it's very good to have when you can't tolerate
eating meat or fish.

I didn't find the mouthwashes helpful, unfortunately. One thing that helped
was this stuff called Biotene toothpaste. I couldn't tolerate brushing my
teeth because regular toothpaste burned my tongue, but this Biotene stuff
was tolerable.

Keep your eyes on the prize, as they say....and the prize is your life!
Please keep posting whenever you need to; you will find a lot of support
here.

All the best, Eva