Xeloda
Carolyn
like at a wedding reception Sat.! I am taking niacin to ward off the dreaded
hand and foot pain and bleeding.. I have pain in a vertebrae so I canceled
a planned trip to a resort 3 hrs away where I was to attend a watercolor
workshop for 4 days. It was a good thing because I vomited and felt bad the
day I was to leave. The Dr thinks the back problem is a flare-up but I think
the chemo just isn't effective enough. I cant get radiation because I had
it fully on that spot before so have to resort to the painpills which I
hate. I will get a liver scan in two weeks to tell if the chemo is having
any effect at all. In the meantime friends invited us to go with them to
Santa Fe NM ( We live near Seattle) next week for 5 days. I have been
around the world but not to Santa Fe so I am excited about it.! I decided
my back can hurt in Santa Fe as well as at home..and I can also vomit there!
My liver is not acting up yet so I have a little more" free" time. My
second opinion Dr. said "You may see Xmas if the chemo works."
Catharine, as you can see I wont be at the support meeting Wed., but I hope
you go again and I will be thinking about you as I dine on that wonderful
Southwestern food!
Carolyn Herring
Catharine Cramer
> I decided my back can hurt in Santa Fe as well as
> at home..and I can also vomit there!
That's the spirit! I must say, one thing this disease has taught me is how
to throw up in a ladylike fashion. I have been nauseated and vomiting for
no good reason recently and had to do it in a gas station bathroom the
other day (any ideas that I didn't really have to were vanquished by that
bathroom, let me tell you) and I was proud of the fact that I just went
"bloop" into the toilet and was done! Yay! No muss, no fuss. Just always
carry a toothbrush and paste.
> Catharine, as you can see I wont be at the
> support meeting Wed., but I hope you go again and I will be thinking
> about you as I dine on that wonderful Southwestern food!
Mmm. Yum yum yum. Have some chili verde for me. I'll be there. I'm
planning on going all the time, if they'll have me. I'm afraid I talk too
much, though.
--
Aloha,
Catharine
Character is what you do when no one's watching.
Chris
Hi all,
I've been lurking for a while and figured that I might have something
to add to the discussion. My mother is currently on her 2nd round of
Xeloda, and has been using Kytril to manage nausea. She's actually
gaining weight! (I hope that some of that is due to my cooking...) As
far as she can tell, there have been no noticeable side-effects, other
than mild fatigue.
Apparently, if you buy Kytril at your local pharmacy it will cost a
fortune, but you can get it online much cheaper (try advancerx.com:
the difference is $50 PER pill vs. $1 PER pill)
My mother is 63 and was first diagnosed with BC 3 years ago. She had
surgery, chemo, and radiation, and was thought to be free and clear.
Six months ago she was diagnosed with bone mets, and after completing
a round of radiation is now on Xeloda.
The biggest challenge has been pain management. At 200 mics of
fentanyl and 24mg dilaudid, she was pretty unfocused and nutty. Now
down to 100 mics of fentanyl, the pain can be bad but the brain works
just fine. Such an awful tradeoff.
-Chris
Carolyn
don't need it with the evening dose. I do have some "breakthrough" anti
nausea pills and have used them twice. I seldom vomit but when I do it just
hits me suddenly, haven't done it for awhile. I have no other side effects
( I worry about the hand foot thing)except weak legs but I think they have
gotten weak from all of the other chemos. I have been on chemos for 4 years
and this is the first one that I have had pain with, tumors on my vertebrae
cause the pain and I think this chemo just isn't strong enough . I have
tried several different pain pills and have finally come up with a system
that works for me without my being zonked.. I take a 10 mg Oxycodone, a 12
hr timed release, and about 1 to 2 hrs into it I take a super Tylenol and
that takes care of things for hours. Because the cancer is now in my liver
Tylenol is not good in heavy doses but I can take a small amount, Where is
your mothers pain? I wish her well.
Carolyn Herring
Tim Jackson
> Hi all,
>
snip
> The biggest challenge has been pain management. At 200 mics of
> fentanyl and 24mg dilaudid, she was pretty unfocused and nutty. Now
> down to 100 mics of fentanyl, the pain can be bad but the brain works
> just fine. Such an awful tradeoff.
>
> -Chris
When my wife was going through this we were constantly juggling the fentanyl
dosage to strike a balance between pain and unconsciousness. The doctors
let me loose with a bag of patches so that we could chose our own dosage.
She ended up around 160ug and we had to back the dose off a bit at the end
because her liver was going. It got so I could tell by looking at her, how
long the patches had been on, the dose drops off about 10% by the end of the
period, and the change was quite visible. We used NSAIDs, (volterol) a lot
to minimise the amount of fentanyl required, but that had its own problems
with intestinal bleeding. So as well as opioid and NSAID she had to have
laxative and antacid to combat the side effects, plus an anti-emetic. Quite
a stack. Handling the constipation problem is probably the worst thing
because the dose response is so slow. Again you are trying to strike a
balance, but the system takes best part of a week to react to any changes,
longer if it is already bunged up. The trick is once you've got it
something like right, to make small changes slowly and try to avoid getting
into the diahorrea/constipation oscilliatory cycle.
Tim Jackson
Chris
Carolyn,
Would a mechanical brace help out at with your back pain? I've heard
that they can stabilize the spine and reduce pain [although you might
lose some glamour points...] Also, aridia seems to work well for some
folks with bone pain.
My mother's pain is primarily located in the lower vertebrae (L4-5)
and some in the hips. The bone mets went undiscovered for a quite a
while. Just as she was recovering from the initial cancer she was
involved in a traumatic car accident. The radiological bone scan
apparently cannot differentiate between bone mets and physical trauma.
For almost a year she suffered from excruciating pain, until it became
ultimately unbearable. The whole story is difficult for me to even
write about.
She finally checked herself into the hospital (she was in NY, I was in
CA), which was a nightmare in and of itself. She was seen by a dozen
or so caregivers each day (doctors, nurses, specialists, etc...), each
of which seemed averse to talking to the others. This patchwork
approach left huge gaps in care. If family and friends hadn't been
there each day to provide support, I don't know if she would have made
it through alright.
I personally witnessed times when they'd wheel her out to the rad
center for treatment, then bring her back and forget to plug in the
PCA device for intravenous hydromorphone injections. Here is someone
in constant agony, and they forget to plug in the lifeline. Or the
battery in the PCA would run out, and it would need to be reprogrammed
once it was plugged back in, but they would fail to notice. I could
immediately tell that the machine was non-functional, but the nurses
sometimes would not. Or they would try to do draws from the arm with
lymphadema, even when a big sign on the wall said "NO DRAWS FROM RIGHT
ARM!!!". I often had to drag nurses, doctors, social workers, etc.
kicking and screaming into her room to correct some error or problem.
All this happened at a well respected university hospital. They must
have hated me and my clipboard and 1000 questions but who the hell
cares.
She's home now and things are MUCH better.
Tim: Getting that input/output cycle balanced is a really delicate
operation. Did your wife ever try senna based products like Senecot?
One of my Mom's doctors suggested that, but she a little concerned
about creating a large boost in output.
Thank you both for your concern.
- Chris
Tim Jackson
> operation. Did your wife ever try senna based products like Senecot?
> One of my Mom's doctors suggested that, but she a little concerned
> about creating a large boost in output.
Yes, Senna was way too violent for regular use, but it could clear a logjam
if we got it wrong. We were using Fybogel and Lactulose to bulk and soften.
The usual problem was that if things seemed OK then she'd forget to take the
medication until it bunged up again. It is essential to keep the dose
steady. She learnt the hard way, a nasty dose of haemorrhoids.
Tim