Hi folks, I'm a lurker. I live in Canada and my wife, Lynne, has metastatic
breast cancer. She was originally diagnosed in July 2004 with inflammatory
breast cancer with 3 distinct tumours in her breast. One was attached to the
chest wall and apparently to one of her ribs. A biopsy of the lumps and of
the sentinel lymph node was positive for breast cancer. The ultrasound, CT,
X-ray, bone scan and MRI examinations showed 8 spots of possible mets in the
liver (described as very small and hardly measurable, however, they grew and
by the time any treatment was effective, three of them were over 2 cm in
size). The cancer was found to be PR+ and strongly Her2 positive. We later
learned that there were some "speckles" on her pelvis and a node in each
lung. With this picture, the prognosis has never been rosy, but not
hopeless. Lynne has had 2 cycles of Herceptin and 7 of Adriamycin. She had a
partial response to the Adriamycin with reduction of the liver mets by about
60 percent. A week ago, she started on a bisphosphonate (Clodronate),
however stopped after the first day when she developed serious nausea and
suffered vomiting. We have a palliative care physician who got her admitted
to hospital. While in hospital, they did a contrast enhanced CT of her
brain. it revealed 3 lesions, the largest just over 2 cm. in size.
We have an appointment with a radiation oncologist next Thursday (the 21st)
and I'm working on getting an early appointment with the treating oncologist
earlier in the week, maybe Tuesday.
The information I've been able to find on the net is confusing. In most
cases it paints a very poor picture of Lynne's future, in some cases, even
with treatment 2 months, but, in most about 7 months. With the multiple
lesions, it looks like surgery is not a probable option and that we will be
looking at whole brain radiation. Many of the items indicated that the
outcome was linked more to the progress against the underlying disease than
to the treatment of the brain mets. I found one recent study published in
March 2005 that gave a much better prognosis with the use of Herceptin.
I have a list of questions I want to ask the 2 oncologists but thought this
might be fodder for the grist mill of this group. I haven't posted my list
as this post is already long enough, suffice it to say that they deal with
the worsening prognosis, the area of the brain involved, the probability of
side effects of the radiation treatment as well as general questions about
the continuing treatment of the bone, liver and lung mets.
Any other suggestions greatly appreciated, thanks in advance.
Bryan
Tim Jackson - 17 Apr 2005 11:31 GMT
> Hi folks, I'm a lurker.
Not any more :-) Welcome to the group.
> I live in Canada and my wife, Lynne, has metastatic
> breast cancer. She was originally diagnosed in July 2004 with inflammatory
[quoted text clipped - 12 lines]
> however stopped after the first day when she developed serious nausea and
> suffered vomiting.
I didn't think anyone used that any more. My wife had it in 1999, but
there have been two more generations of bisphosphonates since then which
are many times more powerful, such as Zometa. Not that they will do
much about the cancer, they only address limiting and repairing the
damage it causes to bones.
> We have a palliative care physician who got her admitted
> to hospital. While in hospital, they did a contrast enhanced CT of her
[quoted text clipped - 5 lines]
> cases it paints a very poor picture of Lynne's future, in some cases, even
> with treatment 2 months, but, in most about 7 months.
I am afraid so.
> With the multiple
> lesions, it looks like surgery is not a probable option and that we will be
> looking at whole brain radiation.
I think that is right.
> Many of the items indicated that the
> outcome was linked more to the progress against the underlying disease than
> to the treatment of the brain mets. I found one recent study published in
> March 2005 that gave a much better prognosis with the use of Herceptin.
I understand that while Herceptin can be very effective for some people,
there are quite a lot of patients who are HER2+ for whom it nonetheless
doesn't work. It's unlikely to cure her - her condition sounds very
advanced - but it might buy some more time. And buy is the operative
word, it is rather expensive for whoever has to pay for it.
> I have a list of questions I want to ask the 2 oncologists but thought this
> might be fodder for the grist mill of this group. I haven't posted my list
> as this post is already long enough, suffice it to say that they deal with
> the worsening prognosis, the area of the brain involved, the probability of
> side effects of the radiation treatment as well as general questions about
> the continuing treatment of the bone, liver and lung mets.
I'll leave others to answer about brain radiation, but I don't think the
side effects are usually severe.
Radiotherapy is very effective at holding bone mets in abeyance. A shot
on a troublesome tumour will set back its development by a couple of
years, and will take about six week s to take effect. There is a limit
to how much radiation can be fired at any given spot, so it is generally
best to reserve this for tumours which are causing pain or threat of
fracture.
Steph who often answers radiotherapy questions on alt.support.cancer is
an expert on this sort of stuff, and is based in Canada.
Lung mets may be treatable by surgery if necessary, or by treatment of
symptoms. The liver mets are probably the most threatening and hardest
to deal with. This is where Herceptin might benefit most.

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Tim Jackson
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allan grossman - 17 Apr 2005 21:15 GMT
Hi, Bryan -
I can only add one thing to Tim's response - but it does bear
investigating.
Herceptin saved my wife's life (knock on wood) but is largely
ineffective in treating brain mets, I'm afraid. The reason Herceptin
is less-than-effective is that it's a large-molecule drug and does not
pass through the blood-brain barrier easily. I saw a study awhile
back that showed the concentration of Herceptin in someone's blood is
on the order of 300 times the concentration in the same patient's
spinal fluid.
But - I have heard of drug trials where Herceptin was administered by
spinal infusion and this might be worth investigating if she does
respond to the drug.
Duke University has done some intracerebral infusion of Herceptin in
rats - you can read about it here:
http://www.duke.edu/~sampson/HER2002_3106.pdf
Good luck, Bryan - and welcome.

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allan
we don't see things as they are, we see them as we are.
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Tony Lima - 20 Apr 2005 00:57 GMT
>earlier in the week, maybe Tuesday.
>The information I've been able to find on the net is confusing. In most
>cases it paints a very poor picture of Lynne's future, in some cases, even
>with treatment 2 months, but, in most about 7 months. With the multiple
>lesions, it looks like surgery is not a probable option and that we will be
>looking at whole brain radiation. Many of the items indicated that the
Bryan, please ask your doctors to investigate Temodar. It's
an oral drug that enhances the effectiveness of whole brain
radiation. Somewhere around here I have the actual clinical
trial reference that demonstrates this. If you can't find
it or your doctors are reluctant to do the homework please
e-mail me and I'll track down the information.
You are correct that the prognosis is not good but please
don't give up. With cancer each individual is different and
responds differently to treatment. There is still hope. -
Tony Lima
Bryan Dawe - 20 Apr 2005 00:59 GMT
>Thank you for your input.
We have an appointment with the radiation oncologist on Thursday and
suspect that with the multiple mets, it'll be whole brain radiation.
All of the other therapies for bone, liver and lung mets are taking a
back seat to this new threat.
We're not expecting miracles, just a little more time.