Hi J. Mom had her first appointment with her oncologists on Thursday
since leaving the hospital a couple of weeks ago. We/they believe the
problems she had were due to her not drinking enough fluids. She was/is
living with my brother, and he and his wife work and so my mom would
sleep all day/night, and unfortunately no one in that house understood
the importance of drinking fluids throughout the day. Her first chemo
infusion made this even worse, as her kidneys slowed down to a stop and,
well, that week was a flat out nightmare.

Since getting out of the hospital she's been much better, but tired all
day as usual. Her medications were stopped almost completely while in
the hospital because they weren't sure if the medications she was on was
causing all of the problems she had. Since leaving the hospital they
changed her medications, and she seems to be in much better shape day by
day. For example, prior to going into the hospital, she was on 90mg of
MS Contin slow release per day, along with numerous breakthrough pills
of 15mg instant release morphine. Since leaving the hospital she is on
30mg of MS Contin and takes one, and maybe a second, MSIR. That's it.
She feels much better too. We have no idea what to attribute this to yet.

So yesterday we went to see her oncologists. My mom was very worried
that they would not go forward with her second chemo infusion. One of
the reasons I've not posted much in this NG is that the consensus
opinion from many seems to be just give up, it's hopeless, hospice is
the way to go, etc. My mom wants none of that. She had been in great
pain for many months, so the thought of not doing treatment was not an
option for her. It's amazing to me how unlucky she is, when I walk into
fox chase cancer center with her and most of the folks there look like
they're totally pain/symptom free. Unfortunately my mom does not have
that type of cancer. But today, a day after her second infusion, she's
feeling the best she has in months. We're hoping her comfort level
increases.

Her doctors were a bit iffy about putting her through the chemo. They
asked a lot of questions of her. In the end, they said they feel she
should go ahead with the infusion as planned. They also scheduled a CT
scan in 2 weeks to "see if you are benefitting from this before we put
you through even more" (or something to that effect). So we'll see on
June 6th whether her cancer has been reduced due to the chemo.

One of the big problems she's been having has been blood pressure.
Lately it has been very low. Prior to the cancer she was (and still is)
on hi bp medications. They scaled those back. I believe that is probably
what is making her feel better as well. Also, they started the Aranesp,
so maybe that will give her more energy in time. I was hoping she might
get something like Procrit, and it appears that Aranesp is a
newer/better procrit. We'll see.

All in all, things are looking much better and I hope she continues to
improve. She is staying at my place through the weekend as she knows
there is always someone here (my wife and 2 young kids are here during
the day) so if she gets very sick like she did the last time someone
will look after her. She's been, at my request, drinking tons of fluids
- water, gatorade, orange juice (she said she loves orange juice all of
a sudden...). I don't have to remind her to drink though - she doesn't
want what happened the last time to happen again. If it does, they'll
surely stop the treatments, and she is very afraid of that.

Mom still believes that a miracle is going to happen and she'll somehow
beat this cancer. I guess I hope for it too. I'm well aware of the
statistics. But there's always hope. A fellow in the waiting room at fox
chase yesterday was walking around beaming and bragging about how his
tumors have almost shrunk to nothing. From stage IV. He was practically
kissing every doctor/nurse he could see there. They were joking with him
that they're going to get a tv crew in there to get him on tv for the
commercials. There's always hope I suppose.

SO the next few days are critical. If mom's condition somehow starts
deteriorating over the next few days, she'll have some decisions to make
for sure in regards to treatment going forward. I'm sure though that her
doctors will make it for her - to stop it. I am optimistic and hopeful
that that won't happen. I'll let you know.

mark

Thanks Jeff. We were told by the chemo nurse that there should be no
side effects for this drug for my mom, so she was all for it. Main thing
is burning when injected, but my mom had it injected into her stomach
and said it wasn't bad at all. We'll see how it works out.

Thanks,

mark

Back on Xeloda now and still reduced dosage?
Just a month to go now eh, Jeff?
Good luck to you and Bonnie from
J