Gail,
To be honest with you, I am not sure what a cancer care
nurse specialist is.
My oncologist's office has oncology nurses that administer
the chemo, but no
particular nurse is assigned to each patient. Any questions
that you have
can be directed on the phone through the nurse that is
handling phone calls
that day or you can ask a nurse in person if you are in the
office for your
chemo treatment. The nurse will then talk to your doctor
for an answer &
the nurse will get an answer for you. Or of course you can
ask your
oncologist when you have an appt. with them.
Where would I seek to speak to a cancer care nurse
specialist? You
mentioned a cancerbackup site. What is that? I guess maybe
I sound dumb on
this...
I had to make my decision the other day as far as what I was
going to do
about my whole brain radiation treatments, but the cancer
care nurse
specialist still sounds interesting for info. in the future
- if there is
such a thing in my area.
Thanks!
Mary
-------Original Message-------
From: Gail Vickers
Date: 1/13/2007 4:37:35 AM
To: M. F. Meister
Subject: ***POSSIBLE SPAM*** RE: [ibc] Questions on Whole
Brain Radiation
Have you spoken to your cancer care nurse specialist. she
would probably
have a good feel for what is the local protacols around her
areas. i also
posted a question on the cancerbackup site once and got a
reply from a
specialist nurse there. It is good that you are researching
for yourself.
thats all i can think of!
X gail (mum clear after surgery but waiting to start
radiotherapy to
mastectomy site) so dont have direct experience but keep an
eye on the site
X
========================================
Message Received: Jan 12 2007, 02:28 PM
From: "M. F. Meister"
To: "bc - IBC List"
Cc:
Subject: [ibc] Questions on Whole Brain Radiation
Hello,
As a follow up to me I was wondering if anyone have any
experience that is
fairly recent - in the last year or two or so I guess - as
far as the
treatments
that they went through or on the treatment protocol for
whole brain
radiation therapy as far as as the number of treatments,
etc.?
I did have my appt. on Wednesday (1/10) with the radiation
oncologist. He
was a very nice dr. and was very patient with me and in
answering my
questions. I have heard him speak numerous times at breast
cancer events
that the hospital that he works at has sponsored, but this
is the first time
I have ever spoke to him as a patient, since I have always
received my
radiation treatments at the other hospital in town.
I have not made a decision for sure yet on where I will be
going for my
whole brain radiation therapy and am waiting a few days to
get more
information in order to make my decision. The dr. I saw
yesterday told me
at "his" hospital they give whole brain radiation
therapy in doses of 15
treatments (not 12 like my oncologist thought). He is not
sure what the
other hospital in town does, as far as the number of
treatments that they
recommend. He did say that he would contact the dr. (also a
radiation
oncologist) over there that I had seen back in October and
talk to him about
me & find out how many treatments they use. My concern
is too much
radiation at once causing brain damage, but it sounds like
there may not be
that much of a difference in the treatments after all. The
radiation
oncologist that I had a consult with back in Oct. (at the
other hospital -
not the dr. that I saw Wed.) was not sure if the brain spots
on my brain MRI
were cancerous or not, so that is why they did not put me
through whole
brain radiation at that time since the spots did not look
exactly typical
for cancer. He couldn't say for sure that they were not
cancer, but he just
was not sure enough to want to have to put me through whole
brain radiation.
My oncologist had been monitoring my brain through brain
MRI's and no
change showed up in Nov. at all, but there was quite a bit
of change in Dec.
The spots have grown, but it is still not on that fast of a
rate, but you
cannot ignore growth or change and not do anything.
I am not starting my whole brain radiation till I can get an
answer from the
dr. on the treatment differences so I know what my options
are so I can make
my decision on where to go for my treatments. The radiation
oncologist said
that my tumors appear to be fairly slow growing and waiting
a little shouldn
t hurt (as long as I get started in the next week or so I
would think). I
want to start at least this next week at the latest. I just
don't want to
jump into anything if waiting a few days would give me more
peace of mind
that I was making the right decision. You can't go back and
then decided
you should have done things differently. And hopefully I
will decide that
there is not enough of a difference in the two treatments
options to have
the difference even be a big issue. If that makes sense...
I did have an appt. at my oncologist's office in the
afternoon. I did not
have an appt. with my oncologist as I was just there to get
my blood checked
and get some treatments, but I was able to speak to her a
minute or two in
the chemo treatment room. She prefers that I not receive my
chemo
(Navelbine) while I get radiation, so I did not get chemo
yesterday & just
got some other non-chemo treatments that I receive. So I do
need to get
started on my whole brain radiation therapy treatments
pretty soon & it
would also be good to get the whole brain radiation therapy
over with sooner
so I can get back on chemo. She said that she talked to
another oncologist
(medical oncologist, not a radiation oncologist) in her
practice & he
believes that the other hospital does the whole brain
radiation in 4 weeks
(20 treatments) now maybe instead of 5 weeks or 6 weeks like
she had thought
So if that is the case, I don't think I would worry that
much in the
treatment strength difference if it is only a difference
between 3 and 4
weeks. We will see what the radiation oncologist that I
talked to yesterday
is able to find out for me from the other hospital though.
If it is only a difference between 15 treatments (3 weeks)
at one hospital
and 20 treatments (4 weeks) at the other hospital possibly,
then the
strength of the treatments would not vary enough to have any
significance on
the brain as far as damage because of the treatment
strength. They do make
sure the treatment strength is the same in the long run (so
the 15 treatment
plan would have each treatment a little bit stronger each
time than the 20
treatment plan). Like I said though, I don't know yet what
the difference
is for sure between what the two hospitals do.
That is just why I wondered what anyone's recent experiences
has been.
Things have changed over the years and what they used to do
has changed, so
that is why it isn't very relative on what someone may have
done maybe even
2 -5 years ago. The dr. did tell me that used to give the
whole brain
radiation therapy 3 times a week and each of those
treatments were pretty
strong and did cause more damage to the brain. That is why
they changed it
to 5 times a week in smaller doses. It has also changed from
hospital to
hospital in how many weeks that have you come and therefore
how much they
break up each treatment over the whole run of whole brain
radiation therapy
- if that makes sense. Some drs. & hospitals believe it
is safe to do it in
a shorter amount of time and some still want to stretch it
out longer.
My oncologist believes that it is safe to do it quicker, but
as the patient
you still worry since you feel it is your brain that is
getting fried
possibly. She had told me about giving a patient whole brain
radiation
therapy two times and the patient ending up being brain
damaged, so the
possibility is there for damage if too much radiation is
done. As I
mentioned, maybe I am being paranoid over worrying about the
difference in
the strength of the treatments (3 weeks vs. 4 or 5 weeks)
having a risk for
me, but I still worry.
Thanks for listening - and any info. would be greatly
appreciated in helping
me decide what to do...
Love,
Mary M. - Ohio
-------Original Message-------
From: M. F. Meister
Date: 1/10/2007 10:13:50 AM
To: bc - IBC List
Subject: More Of An Update on Mary
I will be seeing the radiation therapy oncologist this
morning (Wed., 1/10)
to discuss the options for my whole brain radiation therapy
for me to decide
what route I wish to go with my treatments for my brain
metastasis. If I
could have prayers please for today I would appreciate it. I
have been
thinking about whether it is better to have the stepped up
dosages to
receive the treatments in the 2 1/2 week period of time or
whether it would
be better to receive the regular dosage over the the 30 day
period of time
and what might be best side affect and brain wise. We (my
mom & I) will see
what the the radiation therapy doctor at the hospital that
does the
treatments in 2 1/2 weeks has to say this morning. I may be
starting my
whole brain radiation therapy treatments yet later this
week, depending on
what is decided.
Mary Meister - Ohio
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