Breast and Ovarian simultaneously - questions

"John Smith" <[email hidden]> wrote in message
"]news:[email hidden]...

Quoted message said:

I've posted several times over the last few years about my mother,whose had metastatic breast
cancer for 11 years with mets to the bones and Ovarian cancer for 1 year (new primary). For the
Ovarian, she's had a hysterectomy where they removed a 15 pound tumor. Since she's allergic to all
taxanes, she's had a regiment of Carboplatin and Cytoxin (also called cyclophosphamide ). She's
also been given Herceptin for the breast cancer. She is still taking Femara, which is a hormone
therapy for the breast cancer and celebrex. For pain she has Fentenyl patches.

She's been having tremendous difficulty with her red blood count and platelet count and has to
take injections to boost them. Her Onc, who I've come to know pretty well over the years, has
stopped all chemo and said she can't tolerate any more because her blood count is too low and her
bone marrow is badly damaged. She's been in and out of the hospital often for blood transfusions.
Also because of the blood count, she's only been able to get Herceptin once every 2-3 weeks, and
her Onc is concerned that at that dose, its doing more harm then good.

Onc said that her Ovarian markers are rising and she knows that the Breast Cancer is active, and
that she doesn't think there is much more she can do because of the bone marrow. She wants to run
one more test to determine if the bone marrow damage is from the chemo or from the cancer, but she
thinks its from the chemo. She also thinks more radiation is out also because of the marrow
problem. She said that she never likes to give up hope, but she's pretty much run out of options.
I'm not sure what she has in mind for the bone marrow test, but it sounds like if she finds that
the bone marrow suppression is from the chemo, that she feels that all treatment should stop.

Any ideas here? Up until now, Mom's kept just ahead of the research curve and something new seems
to come out just in time (Herceptin has probably extended her life). Is anything new coming along
that someone with damaged bone marrow can tolerate? She lives in Queens in New York City. Are
there promising clinical trials that would be beneficial, or is she really at the end of the line?

Up until now, her Onc has recommended against taking any supplements like I3C (Indole-3-carbinol)
because she was afraid how they would interact with the chemo, but maybe its time to try
experimental things that don't have bad side effects.

Any ideas would be most welcome.

I am afraid I don't have any suggestions to prolong your mother's life any further, it does sound
rather like the end of the line. It is inevitable that eventually she will find herself between a
rock and a hard place and the options will run out.

What you don't mention is how your mother feels about it. Living with so much pain, medication and
general damage must make her quality of life pretty dismal, and I wonder how much she wants to
prolong it like this anyway. It might be better to concentrate on making what she has left as
comfortable as possible.

Tim Jackson

Tim Jackson said:

"John Smith" <[email hidden]> wrote in message <snip>

Quoted message said:

Onc said that her Ovarian markers are rising and she knows that the Breast Cancer is active, and
that she doesn't think there is much more she can do because of the bone marrow. She wants to
run one more test to determine if the bone marrow damage is from the chemo or from the cancer,
but she thinks its from the chemo. She also thinks more radiation is out also because of the
marrow problem. She said that she never likes to give up hope, but she's pretty much run out of
options. I'm not sure what she has in mind for the bone marrow test, but it sounds like if she
finds that the bone marrow suppression is from the chemo, that she feels that all treatment
should stop.

Perhaps to convince you and your mother that everything possible has been done?

Quoted message said:

<snip> I am afraid I don't have any suggestions to prolong your mother's life any further, it does
sound rather like the end of the line. It is inevitable that eventually she will find herself
between a rock and a hard place and the options will run out.

What you don't mention is how your mother feels about it. Living with so much pain, medication and
general damage must make her quality of life pretty dismal, and I wonder how much she wants to
prolong it like this anyway. It might be better to concentrate on making what she has left as
comfortable as possible.

Hi John, I've looked back through your previous archived posts, over the past few years. You've done
everything humanly possible to help your mother.

Ringing in to agree with her onc and Tim. I do hope she's got her affairs in order and you've been
looking into palliative care (at home or in hospice). If so, from here on in, it's all about
creating a lifetime of moments to treasure, short outings as health and injections permit, family
and friend gatherings, anything that adds to her quality of life.

We will be here for you...If there's anything we can be of assist with, please do let us know. J -
alt.support.cancer

"John Smith" <[email hidden]> wrote in message
"]news:[email hidden]...

Quoted message said:

I've posted several times over the last few years about my mother,whose had metastatic breast
cancer for 11 years with mets to the bones and Ovarian cancer for 1 year (new primary). For the
Ovarian, she's had a hysterectomy where they removed a 15 pound tumor. Since she's allergic to all
taxanes, she's had a regiment of Carboplatin and Cytoxin (also called cyclophosphamide ). She's
also been given Herceptin for the breast cancer. She is still taking Femara, which is a hormone
therapy for the breast cancer and celebrex. For pain she has Fentenyl patches.

She's been having tremendous difficulty with her red blood count and platelet count and has to
take injections to boost them. Her Onc, who I've come to know pretty well over the years, has
stopped all chemo and said she can't tolerate any more because her blood count is too low and her
bone marrow is badly damaged. She's been in and out of the hospital often for blood transfusions.
Also because of the blood count, she's only been able to get Herceptin once every 2-3 weeks, and
her Onc is concerned that at that dose, its doing more harm then good.

Onc said that her Ovarian markers are rising and she knows that the Breast Cancer is active, and
that she doesn't think there is much more she can do because of the bone marrow. She wants to run
one more test to determine if the bone marrow damage is from the chemo or from the cancer, but she
thinks its from the chemo. She also thinks more radiation is out also because of the marrow
problem. She said that she never likes to give up hope, but she's pretty much run out of options.
I'm not sure what she has in mind for the bone marrow test, but it sounds like if she finds that
the bone marrow suppression is from the chemo, that she feels that all treatment should stop.

Any ideas here? Up until now, Mom's kept just ahead of the research curve and something new seems
to come out just in time (Herceptin has probably extended her life). Is anything new coming along
that someone with damaged bone marrow can tolerate? She lives in Queens in New York City. Are
there promising clinical trials that would be beneficial, or is she really at the end of the line?

Up until now, her Onc has recommended against taking any supplements like I3C (Indole-3-carbinol)
because she was afraid how they would interact with the chemo, but maybe its time to try
experimental things that don't have bad side effects.

Any ideas would be most welcome.

So really the problem is the chemo is acceerating all of her problems and actually causing most of
them. When people embark on intensive treatments there should be some plan in hand for stopping when
it becomes obvious there is nothing to be gained by carrying on and if there is nothing to be gained
then there is much to lose because chemotherapy (including hormone treatments like femara can cause
harmful side effects. I think your mother should stand back and evaluate where she is going with
further tretment and consider going for quality time at home with good palliative support. Some
counselling may be appropriate at this time. There are no 'alternatives' or 'supplements' that are
going to make her live longer or better but getting away from hospitals certainly will MIKE

"John Smith" <[email hidden]> wrote in message
"]news:[email hidden]...

Quoted message said:

I've posted several times over the last few years about my mother,whose had metastatic breast
cancer for 11 years with mets to the bones and Ovarian cancer for 1 year (new primary). For the
Ovarian, she's had a hysterectomy where they removed a 15 pound tumor. Since she's allergic to all
taxanes, she's had a regiment of Carboplatin and Cytoxin (also called cyclophosphamide ). She's
also been given Herceptin for the breast cancer. She is still taking Femara, which is a hormone
therapy for the breast cancer and celebrex. For pain she has Fentenyl patches.

She's been having tremendous difficulty with her red blood count and platelet count and has to
take injections to boost them. Her Onc, who I've come to know pretty well over the years, has
stopped all chemo and said she can't tolerate any more because her blood count is too low and her
bone marrow is badly damaged. She's been in and out of the hospital often for blood transfusions.
Also because of the blood count, she's only been able to get Herceptin once every 2-3 weeks, and
her Onc is concerned that at that dose, its doing more harm then good.

Onc said that her Ovarian markers are rising and she knows that the Breast Cancer is active, and
that she doesn't think there is much more she can do because of the bone marrow. She wants to run
one more test to determine if the bone marrow damage is from the chemo or from the cancer, but she
thinks its from the chemo. She also thinks more radiation is out also because of the marrow
problem. She said that she never likes to give up hope, but she's pretty much run out of options.
I'm not sure what she has in mind for the bone marrow test, but it sounds like if she finds that
the bone marrow suppression is from the chemo, that she feels that all treatment should stop.

Any ideas here? Up until now, Mom's kept just ahead of the research curve and something new seems
to come out just in time (Herceptin has probably extended her life). Is anything new coming along
that someone with damaged bone marrow can tolerate? She lives in Queens in New York City. Are
there promising clinical trials that would be beneficial, or is she really at the end of the line?

Up until now, her Onc has recommended against taking any supplements like I3C (Indole-3-carbinol)
because she was afraid how they would interact with the chemo, but maybe its time to try
experimental things that don't have bad side effects.

Any ideas would be most welcome.

I have no suggestions for your mother, but wonder; do you have any sisters? The combination of
breast and ovarian cancer raises the spector of a possible BCA1 or BCA2 gene, which may increase the
risk of both breast and ovarian cancer. If there are other women in the family, they might wish to
seek genetic counselling or even testing. Testing might begin with your mother--if she does not have
either gene, they can breathe more easily. If they possess the gene, they might wish to consider
early prophylactic mastectomy and/or oophorectomy (removal of the ovaries) to dodge that bullet.

That's an excellent suggestion. I have a 40 year old sister, and two daughters, 11 and 8. My
understanding of genetics is weak. What's actually involved in genetic testing. How much does it
cost? Does it hurt? What do positive results say about the chances that my sister and daughters have
the same genes?

An update on my mom: She fell and broke her right arm, a clean fracture. Her heart function is only
25% and the cardiologist didn't think there was anything he could do to improve it so the
cardiologist thought that necessary surgery would be highly risky. Without the use of her right arm,
she can no longer hold herself up in the walker. The surgeon was willing to do the surgery anyway,
but Mom opted not have any more surgery and wants to move to a Hospice inpatient facility. She
doesn't want Hospice care at home and directed us to clean out and sell her apartment. Her
Oncologist and one of the covering physicians who knows her well agrees with this decision because
her bone mets are so bad and her bones so brittle, that she doesn't think the surgery would have
done any good and recommended hospice care. The Onc also decided against doing the bone marrow
aspiration since whether her problems are due to chemo or metastesis, the result is the same, no
more chemo. The current attending physician and the surgeon want her to have the surgery. No matter,
Mom has told me that she doesn't want to die in surgery. The attending physician is having her
evaluated psychologically to make sure she is competent to make that decision. Fortunately, I am her
healthcare proxy and will make it if they decide she isn't. She mentally fine, but is losing her
hearing. Its actually easier to have a conversation with her by phone than in person.

I'm a little overwhelmed at how rapidly all this has happened. Emotionally, I'm in great pain hence
my writting usenet messages at 5AM on a Saturday morning. I've been up since 3. While I knew this
day would come, the doctors have always called my mom the "Miracle Lady" because she's had stage IV
since 1992. One doctor told me that he saw her back in 2001 and thought she was a Hospice candidate
then, boy was he wrong. She definitely had some good days since then. A week ago she was living by
herself in her apartment with daily help coming in and meals on wheels, but still able to go down to
Queens Blvd on a good day to go to the beauty salon. A month ago, my sister had a combination
Hanukah and 1st birthday party for my nephew. My mother had a great time even though she didn't look
too good. She always makes my girls laugh and vice versa.

I'm not completely sure that I understand the hospice care principle, and all of the
insurance/Medicare issues. She's in a Medicare HMO. Obviously, there will be no more cancer
treatment, or injections with colony-stimulating factors, since her Onc said that they were not
working anymore. However, I would want her to be given antibiotics and blood transfusions to offset
the anemia to the extent that they will make her feel better. I also want her to get a hearing aid.
She hears fine on the phone. While she doesn't want to undergo additional suffering to prolong her
life, she doesn't want to die just yet either. She's expecting new twin grandchildren in April, and
I think she'd like to hang around long enough to meet them if she can do so without great pain.

I'd also like to find a way to get her out to Brooklyn to say goodbye to her 97 year old mother
whose is in a nursing home in Brooklyn. My mother's sister died of brain cancer in 1992, my
mother's brother died of prostate cancer last June, and my grandmother, who had a stroke back in
1987 is wheelchair bound, hearing impaired, speech impaired and leads a miserable existence, will
likely outlive all of her children. I dread the scene when its time for my mom to leave her. God
have mercy.

Anyway, sorry to ramble, thanks for all the support over the years.

"Sandy L" <[email hidden] (Remove occdoc to reply)> wrote in message
news:<[email hidden]>...

Quoted message said:

"John Smith" <[email hidden]> wrote in message
"]news:[email hidden]...

Quoted message said:

I've posted several times over the last few years about my mother,whose had metastatic breast
cancer for 11 years with mets to the bones and Ovarian cancer for 1 year (new primary). For the
Ovarian, she's had a hysterectomy where they removed a 15 pound tumor. Since she's allergic to
all taxanes, she's had a regiment of Carboplatin and Cytoxin (also called cyclophosphamide ).
She's also been given Herceptin for the breast cancer. She is still taking Femara, which is a
hormone therapy for the breast cancer and celebrex. For pain she has Fentenyl patches.

She's been having tremendous difficulty with her red blood count and platelet count and has to
take injections to boost them. Her Onc, who I've come to know pretty well over the years, has
stopped all chemo and said she can't tolerate any more because her blood count is too low and
her bone marrow is badly damaged. She's been in and out of the hospital often for blood
transfusions. Also because of the blood count, she's only been able to get Herceptin once every
2-3 weeks, and her Onc is concerned that at that dose, its doing more harm then good.

Onc said that her Ovarian markers are rising and she knows that the Breast Cancer is active, and
that she doesn't think there is much more she can do because of the bone marrow. She wants to
run one more test to determine if the bone marrow damage is from the chemo or from the cancer,
but she thinks its from the chemo. She also thinks more radiation is out also because of the
marrow problem. She said that she never likes to give up hope, but she's pretty much run out of
options. I'm not sure what she has in mind for the bone marrow test, but it sounds like if she
finds that the bone marrow suppression is from the chemo, that she feels that all treatment
should stop.

Any ideas here? Up until now, Mom's kept just ahead of the research curve and something new
seems to come out just in time (Herceptin has probably extended her life). Is anything new
coming along that someone with damaged bone marrow can tolerate? She lives in Queens in New York
City. Are there promising clinical trials that would be beneficial, or is she really at the end
of the line?

Up until now, her Onc has recommended against taking any supplements like I3C (Indole-3-
carbinol) because she was afraid how they would interact with the chemo, but maybe its time to
try experimental things that don't have bad side effects.

Any ideas would be most welcome.

I have no suggestions for your mother, but wonder; do you have any sisters? The combination of
breast and ovarian cancer raises the spector of a possible BCA1 or BCA2 gene, which may increase
the risk of both breast and ovarian cancer. If there are other women in the family, they might
wish to seek genetic counselling or even testing. Testing might begin with your mother--if she
does not have either gene, they can breathe more easily. If they possess the gene, they might wish
to consider early prophylactic mastectomy and/or oophorectomy (removal of the ovaries) to dodge
that bullet.

Hi John, forgive the snipping of text, but in haste. I can't see her having surgery with only 25%
heart function either.

hospiceinfo.orghospiceinfo.orgOpen ↗ The Medicare Hospice Benefit (sidebar)
americanhospice.orglinks.htmOpen ↗ (searchable database by location/state) or look in your
phone book Also Hospice Myths and Facts

Would maybe suggest one central to the family? I saw 2 there for the Brooklyn area. (an example) I'm
pretty sure that radiation therapy can be done in (or out of) hospice but who pays for what, I don't
know. that would be for bone mets, if possible, otherwise she might have to be on sedating pain
meds. Which would mean with her fragility she would probably be in bed and does not bode well for
quality of life. You've got a big job ahead of you so once you pick one, suggest you call and talk
to the social services of that hospice and get as much info as possible. As to what would be (or
not) done for your mother. And the HMO/medicare issues. That's what they're there for or they will
refer you to someone who has all the facts.

Watch for perhaps better replies. I'll be back later to hopefully reply better to your full post. J

"John Smith" <[email hidden]> wrote in message
"]news:[email hidden]...

Quoted message said:

That's an excellent suggestion. I have a 40 year old sister, and two daughters, 11 and 8. My
understanding of genetics is weak. What's actually involved in genetic testing. How much does it
cost? Does it hurt? What do positive results say about the chances that my sister and daughters
have the same genes?

I'm not an expert on this, but will offer what I can. I'm pretty sure that testing is done on
cultured lymphocytes, so a blood draw is all that is required. It is expensive, I think I've read on
another bulletin board $2,000 to $3,000. I don't know if insurance will pay; they often balk at
preventive services.

I believe the gene is an autosomal dominant, so that one copy is all it takes. If that is correct,
and if your mom should have that gene, then your sister is at a 50% risk of inheriting the gene and
trait and your daughters at 25% risk. If it is expressed as a recessive gene, the probability of
inheritance would go way down. Only a small percentage of even those women with breast cancer have
the gene; for most families of breast cancer patients, there is little to worry about. My concern
was that having both conditions shifts the odds upward sharply from around 2% or 3% with breazst
cancer alone.

Quoted message said:

An update on my mom: She fell and broke her right arm, a clean fracture. Her heart function is
only 25% and the cardiologist didn't think there was anything he could do to improve it so the
cardiologist thought that necessary surgery would be highly risky. Without the use of her right
arm, she can no longer hold herself up in the walker. The surgeon was willing to do the surgery
anyway, but Mom opted not have any more surgery and wants to move to a Hospice inpatient facility.
She doesn't want Hospice care at home and directed us to clean out and sell her apartment. Her
Oncologist and one of the covering physicians who knows her well agrees with this decision because
her bone mets are so bad and her bones so brittle, that she doesn't think the surgery would have
done any good and recommended hospice care. The Onc also decided against doing the bone marrow
aspiration since whether her problems are due to chemo or metastesis, the result is the same, no
more chemo. The current attending physician and the surgeon want her to have the surgery. No
matter, Mom has told me that she doesn't want to die in surgery. The attending physician is having
her evaluated psychologically to make sure she is competent to make that decision. Fortunately, I
am her healthcare proxy and will make it if they decide she isn't. She mentally fine, but is
losing her hearing. Its actually easier to have a conversation with her by phone than in person.

This is certainly painful. My mother had a stroke three years ago, could not swallow, and did not
want a feeding tube or gastrostomy. That meant no food or water. She was having trouble speaking but
clearly understood the situation and declined treatment. She died about 10 days later (at age 92).

Quoted message said:

I'm a little overwhelmed at how rapidly all this has happened. Emotionally, I'm in great pain
hence my writting usenet messages at 5AM on a Saturday morning. I've been up since 3. While I knew
this day would come, the doctors have always called my mom the "Miracle Lady" because she's had
stage IV since 1992. One doctor told me that he saw her back in 2001 and thought she was a Hospice
candidate then, boy was he wrong. She definitely had some good days since then. A week ago she was
living by herself in her apartment with daily help coming in and meals on wheels, but still able
to go down to Queens Blvd on a good day to go to the beauty salon. A month ago, my sister had a
combination Hanukah and 1st birthday party for my nephew. My mother had a great time even though
she didn't look too good. She always makes my girls laugh and vice versa.

I'm not completely sure that I understand the hospice care principle, and all of the
insurance/Medicare issues. She's in a Medicare HMO. Obviously, there will be no more cancer
treatment, or injections with colony-stimulating factors, since her Onc said that they were not
working anymore. However, I would want her to be given antibiotics and blood transfusions to
offset the anemia to the extent that they will make her feel better. I also want her to get a
hearing aid. She hears fine on the phone. While she doesn't want to undergo additional suffering
to prolong her life, she doesn't want to die just yet either. She's expecting new twin
grandchildren in April, and I think she'd like to hang around long enough to meet them if she can
do so without great pain.

I'd also like to find a way to get her out to Brooklyn to say goodbye to her 97 year old mother
whose is in a nursing home in Brooklyn. My mother's sister died of brain cancer in 1992, my
mother's brother died of prostate cancer last June, and my grandmother, who had a stroke back in
1987 is wheelchair bound, hearing impaired, speech impaired and leads a miserable existence, will
likely outlive all of her children. I dread the scene when its time for my mom to leave her. God
have mercy.

Anyway, sorry to ramble, thanks for all the support over the years.

"Sandy L" <[email hidden] (Remove occdoc to reply)> wrote

in message news:<[email hidden]>...

Quoted message said:

Quoted message said:

"John Smith" <[email hidden]> wrote in message
"]news:[email hidden]...

Quoted message said:

I've posted several times over the last few years about my mother,whose had metastatic breast
cancer for 11 years with mets

to

Quoted message said:

Quoted message said:

Quoted message said:

the bones and Ovarian cancer for 1 year (new primary). For the Ovarian, she's had a
hysterectomy where they removed a 15 pound

tumor.

Quoted message said:

Quoted message said:

Quoted message said:

Since she's allergic to all taxanes, she's had a regiment of Carboplatin and Cytoxin (also
called cyclophosphamide ). She's

also

Quoted message said:

Quoted message said:

Quoted message said:

been given Herceptin for the breast cancer. She is still taking Femara, which is a hormone
therapy for the breast cancer and

celebrex.

Quoted message said:

Quoted message said:

Quoted message said:

For pain she has Fentenyl patches.

She's been having tremendous difficulty with her red blood count

and

Quoted message said:

Quoted message said:

Quoted message said:

platelet count and has to take injections to boost them. Her Onc,

who

Quoted message said:

Quoted message said:

Quoted message said:

I've come to know pretty well over the years, has stopped all

chemo

Quoted message said:

Quoted message said:

Quoted message said:

and said she can't tolerate any more because her blood count is

too

Quoted message said:

Quoted message said:

Quoted message said:

low and her bone marrow is badly damaged. She's been in and out of

the

Quoted message said:

Quoted message said:

Quoted message said:

hospital often for blood transfusions. Also because of the blood count, she's only been able
to get Herceptin once every 2-3

weeks,

Quoted message said:

Quoted message said:

Quoted message said:

and her Onc is concerned that at that dose, its doing more harm

then

Quoted message said:

Quoted message said:

Quoted message said:

good.

Onc said that her Ovarian markers are rising and she knows that

the

Quoted message said:

Quoted message said:

Quoted message said:

Breast Cancer is active, and that she doesn't think there is much

more

Quoted message said:

Quoted message said:

Quoted message said:

she can do because of the bone marrow. She wants to run one more

test

Quoted message said:

Quoted message said:

Quoted message said:

to determine if the bone marrow damage is from the chemo or from

the

Quoted message said:

Quoted message said:

Quoted message said:

cancer, but she thinks its from the chemo. She also thinks more radiation is out also because
of the marrow problem. She said that

she

Quoted message said:

Quoted message said:

Quoted message said:

never likes to give up hope, but she's pretty much run out of

options.

Quoted message said:

Quoted message said:

Quoted message said:

I'm not sure what she has in mind for the bone marrow test, but it sounds like if she finds
that the bone marrow suppression is from

the

Quoted message said:

Quoted message said:

Quoted message said:

chemo, that she feels that all treatment should stop.

Any ideas here? Up until now, Mom's kept just ahead of the

research

Quoted message said:

Quoted message said:

Quoted message said:

curve and something new seems to come out just in time (Herceptin

has

Quoted message said:

Quoted message said:

Quoted message said:

probably extended her life). Is anything new coming along that

someone

Quoted message said:

Quoted message said:

Quoted message said:

with damaged bone marrow can tolerate? She lives in Queens in New

York

Quoted message said:

Quoted message said:

Quoted message said:

City. Are there promising clinical trials that would be

beneficial, or

Quoted message said:

Quoted message said:

Quoted message said:

is she really at the end of the line?

Up until now, her Onc has recommended against taking any

supplements

Quoted message said:

Quoted message said:

Quoted message said:

like I3C (Indole-3-carbinol) because she was afraid how they would interact with the chemo,
but maybe its time to try experimental

things

Quoted message said:

Quoted message said:

Quoted message said:

that don't have bad side effects.

Any ideas would be most welcome.

I have no suggestions for your mother, but wonder; do you have any sisters? The combination of
breast and ovarian cancer raises the spector of a possible BCA1 or BCA2 gene, which may increase
the risk

of

Quoted message said:

Quoted message said:

both breast and ovarian cancer. If there are other women in the

family,

Quoted message said:

Quoted message said:

they might wish to seek genetic counselling or even testing.

Testing

Quoted message said:

Quoted message said:

might begin with your mother--if she does not have either gene, they

can

Quoted message said:

Quoted message said:

breathe more easily. If they possess the gene, they might wish to consider early prophylactic
mastectomy and/or oophorectomy (removal

of

Quoted message said:

Quoted message said:

the ovaries) to dodge that bullet.

(John Smith) said:

That's an excellent suggestion. I have a 40 year old sister, and two daughters, 11 and 8. My
understanding of genetics is weak. What's actually involved in genetic testing. How much does it
cost? Does it hurt? What do positive results say about the chances that my sister and daughters
have the same genes?

Quoted message said:

An update on my mom: She fell and broke her right arm, a clean fracture. Her heart function is
only 25% and the cardiologist didn't think there was anything he could do to improve it so the
cardiologist thought that necessary surgery would be highly risky. Without the use of her right
arm, she can no longer hold herself up in the walker. The surgeon was willing to do the surgery
anyway, but Mom opted not have any more surgery and wants to move to a Hospice inpatient facility.
She doesn't want Hospice care at home and directed us to clean out and sell her apartment. Her
Oncologist and one of the covering physicians who knows her well agrees with this decision because
her bone mets are so bad and her bones so brittle, that she doesn't think the surgery would have
done any good and recommended hospice care. The Onc also decided against doing the bone marrow
aspiration since whether her problems are due to chemo or metastesis, the result is the same, no
more chemo. The current attending physician and the surgeon want her to have the surgery. No
matter, Mom has told me that she doesn't want to die in surgery. The attending physician is having
her evaluated psychologically to make sure she is competent to make that decision. Fortunately, I
am her healthcare proxy and will make it if they decide she isn't. She mentally fine, but is
losing her hearing. Its actually easier to have a conversation with her by phone than in person.

I'm a little overwhelmed at how rapidly all this has happened. Emotionally, I'm in great pain
hence my writting usenet messages at 5AM on a Saturday morning. I've been up since 3. While I knew
this day would come, the doctors have always called my mom the "Miracle Lady" because she's had
stage IV since 1992. One doctor told me that he saw her back in 2001 and thought she was a Hospice
candidate then, boy was he wrong. She definitely had some good days since then. A week ago she was
living by herself in her apartment with daily help coming in and meals on wheels, but still able
to go down to Queens Blvd on a good day to go to the beauty salon. A month ago, my sister had a
combination Hanukah and 1st birthday party for my nephew. My mother had a great time even though
she didn't look too good. She always makes my girls laugh and vice versa.

I'm not completely sure that I understand the hospice care principle, and all of the
insurance/Medicare issues. She's in a Medicare HMO. Obviously, there will be no more cancer
treatment, or injections with colony-stimulating factors, since her Onc said that they were not
working anymore. However, I would want her to be given antibiotics and blood transfusions to
offset the anemia to the extent that they will make her feel better. I also want her to get a
hearing aid. She hears fine on the phone. While she doesn't want to undergo additional suffering
to prolong her life, she doesn't want to die just yet either. She's expecting new twin
grandchildren in April, and I think she'd like to hang around long enough to meet them if she can
do so without great pain.

I'd also like to find a way to get her out to Brooklyn to say goodbye to her 97 year old mother
whose is in a nursing home in Brooklyn. My mother's sister died of brain cancer in 1992, my
mother's brother died of prostate cancer last June, and my grandmother, who had a stroke back in
1987 is wheelchair bound, hearing impaired, speech impaired and leads a miserable existence, will
likely outlive all of her children. I dread the scene when its time for my mom to leave her. God
have mercy.

Anyway, sorry to ramble, thanks for all the support over the years.

Apologies for the previous empty post.

(John Smith) said:

That's an excellent suggestion. I have a 40 year old sister, and two daughters, 11 and 8. My
understanding of genetics is weak. What's actually involved in genetic testing. How much does it
cost? Does it hurt? What do positive results say about the chances that my sister and daughters
have the same genes?

The genetics test involves an interview, survey and a blood draw, if I remember what my aunt told me
correctly. Positive results on the index case in the family means the other family members need to
get tested. When my aunt was tested (I believe the insurance paid ~$2000 to conduct the testing),
her negative result meant that the geneticist did not recommend further testing for the rest of us.

Quoted message said:

I'm a little overwhelmed at how rapidly all this has happened. Emotionally, I'm in great pain
hence my writting usenet messages at 5AM on a Saturday morning. I've been up since 3. While I knew
this day would come, the doctors have always called my mom the "Miracle Lady" because she's had
stage IV since 1992.

Wow, that's amazing she's held on that long. We lost my mother this past summer, a year and a half
after she progressed to stage four. I feel for your overwhelmed-ness, and I'm so sorry for your mom,
you and your family.

Quoted message said:

I'm not completely sure that I understand the hospice care principle, and all of the
insurance/Medicare issues. She's in a Medicare HMO. Obviously, there will be no more cancer
treatment, or injections with colony-stimulating factors, since her Onc said that they were not
working anymore. However, I would want her to be given antibiotics and blood transfusions to
offset the anemia to the extent that they will make her feel better. I also want her to get a
hearing aid. She hears fine on the phone. While she doesn't want to undergo additional suffering
to prolong her life, she doesn't want to die just yet either. She's expecting new twin
grandchildren in April, and I think she'd like to hang around long enough to meet them if she can
do so without great pain.

I'm afraid I can't help with the hospice questions. When my mother was in hospice, she didn't
receive any antibiotics, but she wasn't fighting infections either. I will say that all of the
hospice folks who were involved with our family were very caring and supportive, and I hope your
family has a similar experience.

(My gut suggests that blood transfusions won't be done, and you may need to pay cash for the hearing
aid, but again, that's just my gut reaction.)

Quoted message said:

I'd also like to find a way to get her out to Brooklyn to say goodbye to her 97 year old mother
whose is in a nursing home in Brooklyn. My mother's sister died of brain cancer in 1992, my
mother's brother died of prostate cancer last June, and my grandmother, who had a stroke back in
1987 is wheelchair bound, hearing impaired, speech impaired and leads a miserable existence, will
likely outlive all of her children. I dread the scene when its time for my mom to leave her. God
have mercy.

If you can't find a good way to get your mom to grandma, is it possible to get grandma to mom?

Best of luck to all of you.