Re: Bone Pain & oncologist

[Guest guest]

Talk about lacking people skills! How does he know? Is he god?

Speaking of oncs, NBC aired an interesting piece on oncologists and

the drugs they not only prescribe, but buy wholesale and sell to the

patients retail. Of course it is usually the insurance company that

picks up the tab. Here is the link.

http://www.msnbc.msn.com/id/14944098/from/ET/

Ruth

PS These docs are making almost half a million dollars a year!

>

My Onc. said it was one of these

> 2 pills or I die. I was Floored. Thank You~!~

>

[Guest guest]

Hi Rhonda,

Does the same apply when the news touts the new cancer treatments?

Herceptin is a miracle drug! Trials stopped early to give women in

the control groups access. Seems to me that for the most part the

media is your friend! Why can Herceptin be given alone for metastatic

breast cancer and not early node negative cancer? I am not taking it

because the second opinion oncologist wanted me to take a course of AC

prior to the Herceptin. Since congestive heart failure along with

dementia runs in the family, I decided to pass. So many questions so

few answers.

Ruth

[Guest guest]

Hi Ruth,

my understanding is that many metastatic women are women who have had

chemo previously, then have a recurrence, so they then take Herceptin. I

believe that there is a lifetime dosage of adriamycin, so if I were to

have a recurrence, that would not be an option for me.

There is no limit that's been determined for Herceptin, but that's

partly because it's so new. Based on the existing data, Herceptin is

more effective when given after AC.

I understand your decision based on your health history not to take

Herceptin. Since starting Herceptin I have borderline high blood

pressure and arthritic-like pain. I'm hoping both problems correct

themselves after treatment.

On the her2support.org forum I read there's a test that can determine

whether you will respond to Herceptin. This is pretty new (wasn't around

when I was diagnosed).

-

[Guest guest]

Ruth,

Actually what the news touts as new cancer treatments is usually not news to

me since I work in research. Take Lapatinib for example. GlaxoKline first

released info about it last December. It will be released in Jan for public

use. The trade name will be Tykerb. It is as revolutionary as Herceptin.

Herceptin only works on one receptor on the outside of the cell. Lapatinib works

on two receptors on the inside of the cell.

Herceptin works for Her 2 neu positive patients. The really odd thing is that

after a her 2 neu positive patient takes Herceptin for a lot of years, their

cells convert to her 2 neu negative. Now, you know they were her 2 neu positive

because the Herceptin worked. It is something, I don't really understand it,

but that is how the pathologist explained it to me and the doctors echoed that

explanation.

I have a patient on the trial that was interrupted because the evidence was so

obvious that the Herceptin was a great advantage to the women who had it. My

patient had been randomized to the arm without the Herceptin. The way the

timing worked out for her, it was perfect. She was not finished with her

Adria/Cytoxan yet when the early findings were reported. The study supplied her

with free Herceptin to go with her Taxol because she had participated in the

trial.

Women were calling in like crazy wanting the Herceptin, but the insurance

companies need time to catch up with the science. Because a doctor cannot just

give medication unless the patient has the right diagnosis code for it. A few

patients did pay out of pocket for it for a few treatments, until their

insurance caught up with it. The others waited. I can't remember if Genentech

had a compassionate program for it or not. Usually the drug companies do have a

compassionate program in that situation.

When cancer drugs are developed, first it is in the test tube, then small

furry animals, then humans with one leg in the grave, then recurrent or

metastatic patients, finally when the drug has proved to cause remission in all

those really sick people, the FDA allows the trials on the newly diagnosed.

That is what happened with that Herceptin trial. It was in the phase where it

was finally being allowed to be proved that it works on the newly diagnosed

adjuvant patient.

I am not a fan of the media. My brother in law was a chemist. He was

interviewed by local TV several times for things. They would clip his words and

sentences, add questions they did not ask him to what they had on tape for

answers to make it sound like he gave a message he did not give. They twisted

his words into a lie.

I do not like all the TV advertisements that people buy into with the whole

" status items " bit. They spend more than they make and want more, more, more.

Who saves money anymore? Really in popular culture, the average joe, don't they

have to have a cell phone for everyone in the family and cable TV, steak on the

grill, but late on the payments. People buy into the commercials they see on TV

and don't live prudently. They don't live without all these modern day

luxuries, no because they call them needs. Every kid NEEDS a cell phone. No

they don't, it is a status item. So they spend all the money they make all

their life and in retirement there is no money saved to live on. Yes, some

people did the best they could and never made enough, but not all. As the

saying goes they did not plan to fail, they just failed to plan.

The advertisers want our money, and they are VERY good at what they do. They

get so many people to part with their money for things, that they don't have

enough money to live on when they are not earning anymore. It is a very sad

deception.

It is good that the media does report when a good treatment comes along.

Herceptin has been around for about 10 years though. I drove a patient across

the state to get it when she got " the lottery " to receive it when it was first

in clinical trial for metastatic disease.

Your decision not to take Herceptin is a valid one. Did you decline the Adria

too? My trial patient had to stop the Herceptin because of too much decrease in

her ejection fraction. Heart disease runs in my family too, and I try to keep

my weight down, exercise and avoid the fatty foods too for that reason. Did you

get your ejection fraction checked? The reason I ask is that just like

inherited increased breast cancer risk is possible, it is also possible for the

daughter of a bc patient to not inherit the risk gene. It is also possible that

we did not inherit the heart disease predisposition. It is also possible that

there was not a predisposition really in the family to begin with it was just

all that fatback intake etc. (environmental/eating habits vs. inheritance or

nurture vs. nature).

Now I am really the devils advocate.

The science is all very fascinating to me though. I just love working in

research and learning these things as they are being developed. It is an

exciting time in the development of cancer drugs.

If your ejection fraction was really good, you could start the Herceptin. The

heart tests can be done maybe every 6 weeks (I can't remember). If your

ejection fraction was affected, you can always quit. From what I have seen, the

heart does heal and recover some of the ejection fraction back. The important

thing is that you have been informed, and you make the informed decision that is

best for you.

When a person chooses no treatment that is valid. The doctor's job is to tell

you what the options are, the choice is always up to the patient. Cancer

treatment is no holiday. The important thing is that you are at peace with the

option you choose. It is sad that the options are not necessarily good ones

though.

I wonder if the oncologist would give you one of the cancer treatments that

are less cardio-toxic (not AC), then the Herceptin? Also there is a

cardioprotective drug that can be given right before Adriamycin to try to avoid

some of those cardiac issues. I am not trying to talk you into it, just letting

you know about some of the finer points/details you may not have heard about

yet. There is also dose manipulation, giving you a smaller dose of the Adria,

or 3 cycles instead of 4.

Ideally, giving you the full recommended dose increases the odds of survival

of breast cancer. But sometimes doses have to be lowered because of toxicity

effects to the patient, like low white blood cells, or nausea that cannot get

controlled.

I wish you all the best in your future. Unfortunately, treatment options can

get pretty complicated (too many choices). It is valid to look at the choices

and say " hey, I don't want to take that risk, I like my level of functioning

like it is thank you very much. " Enjoy your health and stamina!

thanks,

Rhonda

ruthiema36 wrote:

Hi Rhonda,

Does the same apply when the news touts the new cancer treatments?

Herceptin is a miracle drug! Trials stopped early to give women in

the control groups access. Seems to me that for the most part the

media is your friend! Why can Herceptin be given alone for metastatic

breast cancer and not early node negative cancer? I am not taking it

because the second opinion oncologist wanted me to take a course of AC

prior to the Herceptin. Since congestive heart failure along with

dementia runs in the family, I decided to pass. So many questions so

few answers.

Ruth

---------------------------------

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

Ruth,

Actually what the news touts as new cancer treatments is usually not news to

me since I work in research. Take Lapatinib for example. GlaxoKline first

released info about it last December. It will be released in Jan for public

use. The trade name will be Tykerb. It is as revolutionary as Herceptin.

Herceptin only works on one receptor on the outside of the cell. Lapatinib works

on two receptors on the inside of the cell.

Herceptin works for Her 2 neu positive patients. The really odd thing is that

after a her 2 neu positive patient takes Herceptin for a lot of years, their

cells convert to her 2 neu negative. Now, you know they were her 2 neu positive

because the Herceptin worked. It is something, I don't really understand it,

but that is how the pathologist explained it to me and the doctors echoed that

explanation.

I have a patient on the trial that was interrupted because the evidence was so

obvious that the Herceptin was a great advantage to the women who had it. My

patient had been randomized to the arm without the Herceptin. The way the

timing worked out for her, it was perfect. She was not finished with her

Adria/Cytoxan yet when the early findings were reported. The study supplied her

with free Herceptin to go with her Taxol because she had participated in the

trial.

Women were calling in like crazy wanting the Herceptin, but the insurance

companies need time to catch up with the science. Because a doctor cannot just

give medication unless the patient has the right diagnosis code for it. A few

patients did pay out of pocket for it for a few treatments, until their

insurance caught up with it. The others waited. I can't remember if Genentech

had a compassionate program for it or not. Usually the drug companies do have a

compassionate program in that situation.

When cancer drugs are developed, first it is in the test tube, then small

furry animals, then humans with one leg in the grave, then recurrent or

metastatic patients, finally when the drug has proved to cause remission in all

those really sick people, the FDA allows the trials on the newly diagnosed.

That is what happened with that Herceptin trial. It was in the phase where it

was finally being allowed to be proved that it works on the newly diagnosed

adjuvant patient.

I am not a fan of the media. My brother in law was a chemist. He was

interviewed by local TV several times for things. They would clip his words and

sentences, add questions they did not ask him to what they had on tape for

answers to make it sound like he gave a message he did not give. They twisted

his words into a lie.

I do not like all the TV advertisements that people buy into with the whole

" status items " bit. They spend more than they make and want more, more, more.

Who saves money anymore? Really in popular culture, the average joe, don't they

have to have a cell phone for everyone in the family and cable TV, steak on the

grill, but late on the payments. People buy into the commercials they see on TV

and don't live prudently. They don't live without all these modern day

luxuries, no because they call them needs. Every kid NEEDS a cell phone. No

they don't, it is a status item. So they spend all the money they make all

their life and in retirement there is no money saved to live on. Yes, some

people did the best they could and never made enough, but not all. As the

saying goes they did not plan to fail, they just failed to plan.

The advertisers want our money, and they are VERY good at what they do. They

get so many people to part with their money for things, that they don't have

enough money to live on when they are not earning anymore. It is a very sad

deception.

It is good that the media does report when a good treatment comes along.

Herceptin has been around for about 10 years though. I drove a patient across

the state to get it when she got " the lottery " to receive it when it was first

in clinical trial for metastatic disease.

Your decision not to take Herceptin is a valid one. Did you decline the Adria

too? My trial patient had to stop the Herceptin because of too much decrease in

her ejection fraction. Heart disease runs in my family too, and I try to keep

my weight down, exercise and avoid the fatty foods too for that reason. Did you

get your ejection fraction checked? The reason I ask is that just like

inherited increased breast cancer risk is possible, it is also possible for the

daughter of a bc patient to not inherit the risk gene. It is also possible that

we did not inherit the heart disease predisposition. It is also possible that

there was not a predisposition really in the family to begin with it was just

all that fatback intake etc. (environmental/eating habits vs. inheritance or

nurture vs. nature).

Now I am really the devils advocate.

The science is all very fascinating to me though. I just love working in

research and learning these things as they are being developed. It is an

exciting time in the development of cancer drugs.

If your ejection fraction was really good, you could start the Herceptin. The

heart tests can be done maybe every 6 weeks (I can't remember). If your

ejection fraction was affected, you can always quit. From what I have seen, the

heart does heal and recover some of the ejection fraction back. The important

thing is that you have been informed, and you make the informed decision that is

best for you.

When a person chooses no treatment that is valid. The doctor's job is to tell

you what the options are, the choice is always up to the patient. Cancer

treatment is no holiday. The important thing is that you are at peace with the

option you choose. It is sad that the options are not necessarily good ones

though.

I wonder if the oncologist would give you one of the cancer treatments that

are less cardio-toxic (not AC), then the Herceptin? Also there is a

cardioprotective drug that can be given right before Adriamycin to try to avoid

some of those cardiac issues. I am not trying to talk you into it, just letting

you know about some of the finer points/details you may not have heard about

yet. There is also dose manipulation, giving you a smaller dose of the Adria,

or 3 cycles instead of 4.

Ideally, giving you the full recommended dose increases the odds of survival

of breast cancer. But sometimes doses have to be lowered because of toxicity

effects to the patient, like low white blood cells, or nausea that cannot get

controlled.

I wish you all the best in your future. Unfortunately, treatment options can

get pretty complicated (too many choices). It is valid to look at the choices

and say " hey, I don't want to take that risk, I like my level of functioning

like it is thank you very much. " Enjoy your health and stamina!

thanks,

Rhonda

ruthiema36 wrote:

Hi Rhonda,

Does the same apply when the news touts the new cancer treatments?

Herceptin is a miracle drug! Trials stopped early to give women in

the control groups access. Seems to me that for the most part the

media is your friend! Why can Herceptin be given alone for metastatic

breast cancer and not early node negative cancer? I am not taking it

because the second opinion oncologist wanted me to take a course of AC

prior to the Herceptin. Since congestive heart failure along with

dementia runs in the family, I decided to pass. So many questions so

few answers.

Ruth

---------------------------------

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

Of course you are relevent, Jen ; ]! My concern is that since

congestive heart failure and dementia, because of, runs in the family

two treatments that can cause congestive heart failure may be a little

more than my heredity compromised ticker could take. I am not willing

to take the chance. Figure if I follow the pattern, I've got 10 maybe

15 good years left. I am willing to risk a recurrance of the cancer

rather than taking a chance with the heart and dementia busines my

mother and grandmother went through. My mother was 88 and I was at

her side, when she died. She started to decline in her early 70s.

I'm not willing to risk even one of those good years.

Ruth

>

> My onc has prescribed Herceptin for me (Her2+ but still node

> negative). If I understand it correctly, the reason he put the

> Herceptin treatments on the " other end " (A/C first, then Taxol)

> was because of the cardio issues. He said he would see

> how well I did with the Taxol, and said if he thought it was safe

> he'd combine it with the Herceptin so I could get the " the end "

> a little faster : ) I had to have a MUGA scan first, and will more

> than likely have several along the way to be sure my ticker is

> ticking properly : )

>

> Hoping I'm relevant....

> - Jen : )

[Guest guest]

Of course you are relevent, Jen ; ]! My concern is that since

congestive heart failure and dementia, because of, runs in the family

two treatments that can cause congestive heart failure may be a little

more than my heredity compromised ticker could take. I am not willing

to take the chance. Figure if I follow the pattern, I've got 10 maybe

15 good years left. I am willing to risk a recurrance of the cancer

rather than taking a chance with the heart and dementia busines my

mother and grandmother went through. My mother was 88 and I was at

her side, when she died. She started to decline in her early 70s.

I'm not willing to risk even one of those good years.

Ruth

>

> My onc has prescribed Herceptin for me (Her2+ but still node

> negative). If I understand it correctly, the reason he put the

> Herceptin treatments on the " other end " (A/C first, then Taxol)

> was because of the cardio issues. He said he would see

> how well I did with the Taxol, and said if he thought it was safe

> he'd combine it with the Herceptin so I could get the " the end "

> a little faster : ) I had to have a MUGA scan first, and will more

> than likely have several along the way to be sure my ticker is

> ticking properly : )

>

> Hoping I'm relevant....

> - Jen : )

[Guest guest]

Thanks Jen!

I know about the headache business! That was me when I was pondering

relative versus absolute statistics. Boy did my head hurt. I like

the idiot proof sites, your head doesn't hurt as bad. I will check

both. I have found breastcancer.org a very user friendly site.

Ruth

PS Could you put some padding over the port before putting on the

bra? I, who do not wear a bra, have been in one (sport) 24/7 for

over 2 weeks! Geese the whole purpose of reconstruction was so I

wouldn't have to do this! I now own more bras than I have in my whole

life!

>

> Ruth:

>

> I found some stuff on the tests if you want to check it out...

>

> http://www.breastcancer.org/research_herceptin_050001.html

> This one has good (idiot friendly - my favorite kind : ) info on

> the two tests used...Checked my notes and mine was a 3+ and

> fully overexpressed (I had the IHC test run).

>

> http://www.her2support.org/vbulletin/archive/index.php?t-20167.html

> This one gave me a headache, but I thought I'd pass it along in

> case your brain cells are in better shape than mine at this time - ha!

>

> Pointless Pondering...

> I am currently thinking that any general surgeon who " installs "

> sub dermal ports should be required to wear a bra during the

> surgery. This will ensure they will NOT put said port directly

> under the bra strap area where it can be snapped by said strap

> SEVERAL times - no matter HOW careful you are (ow!) Am I the

> only one with this dilemma??

>

> A woman on the edge...ready to snap (NOT!)

>

> - Jen : )

>

[Guest guest]

Thanks Jen!

I know about the headache business! That was me when I was pondering

relative versus absolute statistics. Boy did my head hurt. I like

the idiot proof sites, your head doesn't hurt as bad. I will check

both. I have found breastcancer.org a very user friendly site.

Ruth

PS Could you put some padding over the port before putting on the

bra? I, who do not wear a bra, have been in one (sport) 24/7 for

over 2 weeks! Geese the whole purpose of reconstruction was so I

wouldn't have to do this! I now own more bras than I have in my whole

life!

>

> Ruth:

>

> I found some stuff on the tests if you want to check it out...

>

> http://www.breastcancer.org/research_herceptin_050001.html

> This one has good (idiot friendly - my favorite kind : ) info on

> the two tests used...Checked my notes and mine was a 3+ and

> fully overexpressed (I had the IHC test run).

>

> http://www.her2support.org/vbulletin/archive/index.php?t-20167.html

> This one gave me a headache, but I thought I'd pass it along in

> case your brain cells are in better shape than mine at this time - ha!

>

> Pointless Pondering...

> I am currently thinking that any general surgeon who " installs "

> sub dermal ports should be required to wear a bra during the

> surgery. This will ensure they will NOT put said port directly

> under the bra strap area where it can be snapped by said strap

> SEVERAL times - no matter HOW careful you are (ow!) Am I the

> only one with this dilemma??

>

> A woman on the edge...ready to snap (NOT!)

>

> - Jen : )

>

[Guest guest]

Thanks Jen!

I know about the headache business! That was me when I was pondering

relative versus absolute statistics. Boy did my head hurt. I like

the idiot proof sites, your head doesn't hurt as bad. I will check

both. I have found breastcancer.org a very user friendly site.

Ruth

PS Could you put some padding over the port before putting on the

bra? I, who do not wear a bra, have been in one (sport) 24/7 for

over 2 weeks! Geese the whole purpose of reconstruction was so I

wouldn't have to do this! I now own more bras than I have in my whole

life!

>

> Ruth:

>

> I found some stuff on the tests if you want to check it out...

>

> http://www.breastcancer.org/research_herceptin_050001.html

> This one has good (idiot friendly - my favorite kind : ) info on

> the two tests used...Checked my notes and mine was a 3+ and

> fully overexpressed (I had the IHC test run).

>

> http://www.her2support.org/vbulletin/archive/index.php?t-20167.html

> This one gave me a headache, but I thought I'd pass it along in

> case your brain cells are in better shape than mine at this time - ha!

>

> Pointless Pondering...

> I am currently thinking that any general surgeon who " installs "

> sub dermal ports should be required to wear a bra during the

> surgery. This will ensure they will NOT put said port directly

> under the bra strap area where it can be snapped by said strap

> SEVERAL times - no matter HOW careful you are (ow!) Am I the

> only one with this dilemma??

>

> A woman on the edge...ready to snap (NOT!)

>

> - Jen : )

>

[Guest guest]

Hi again, Rhonda,

Ya pretty much hit the nail on the head! I really, really, like my

level of functioning. About 6 weeks after mastectomy I put in my

veggie gardens and have spent a plesent summer tending them. I have

been putting up the fruits of my labors and have been so blessed, that

we had to buy another freezer!

I hear you about keeping up with the Jonses. I have a sister like

that. Hubby and I never made more than 50 grand a year, raised three

kids, put them through college and thanks to very good investing and

planning, on our part, will have no money worries in our retirement.

I could actually afford to pay for the Herceptin, off label, if

insurance wouldn't pick it up without AC first.

Ruth

PS We always believed in living simply, but well and gave our kids

many experiences their friends never had.

> I wish you all the best in your future. Unfortunately, treatment

options can get pretty complicated (too many choices). It is valid to

look at the choices and say " hey, I don't want to take that risk, I

like my level of functioning like it is thank you very much. " Enjoy

your health and stamina!

>

> thanks,

>

> Rhonda

[Guest guest]

Hi again, Rhonda,

Ya pretty much hit the nail on the head! I really, really, like my

level of functioning. About 6 weeks after mastectomy I put in my

veggie gardens and have spent a plesent summer tending them. I have

been putting up the fruits of my labors and have been so blessed, that

we had to buy another freezer!

I hear you about keeping up with the Jonses. I have a sister like

that. Hubby and I never made more than 50 grand a year, raised three

kids, put them through college and thanks to very good investing and

planning, on our part, will have no money worries in our retirement.

I could actually afford to pay for the Herceptin, off label, if

insurance wouldn't pick it up without AC first.

Ruth

PS We always believed in living simply, but well and gave our kids

many experiences their friends never had.

> I wish you all the best in your future. Unfortunately, treatment

options can get pretty complicated (too many choices). It is valid to

look at the choices and say " hey, I don't want to take that risk, I

like my level of functioning like it is thank you very much. " Enjoy

your health and stamina!

>

> thanks,

>

> Rhonda

[Guest guest]

Ruth:

It's a tough call...my husband (former Ironworker) fell off a

building in his 20's - 35 feet to the concrete (eew!). First the

docs said he wouldn't make it to 40 (he's 52), or have

children (we have two). His sister died of a heart attack at

age 42 and his family history is lousy with cancer and heart

trouble (but you see which one of us got the cancer, don't

you? I'm only 40 and in great physical shape - well... now I

sometimes feel like I belong in the dented can section-ha : )

My mom's dad died at age 60 with heart trouble and she

was just sure either she or her sister inherited " that gene " ,

but mom's 70 (mastectomy and chemo at 65) and her sister

is 76 and still going strong, so I guess you never know how

it will all play out...have you thought about calling the Cancer

Treatment Center of America? My husband talked to them

when I was first diagnosed...it seems to be a cool bunch of

folks that specialize in tricky treatments - might be worth a

shot : ) I found great medical folks here, so we didn't pursue

that route - but they were awfully good at answering Rickey's

questions at 2:00 in the morning when he called...

Off to the treadmill I go... (and stay : )

- Jen

On Mon, 25 Sep 2006 02:14:44 -0000 " ruthiema36 "

writes:

> Of course you are relevent, Jen ; ]! My concern is that since

> congestive heart failure and dementia, because of, runs in the

> family

> two treatments that can cause congestive heart failure may be a

> little

> more than my heredity compromised ticker could take. I am not

> willing

> to take the chance. Figure if I follow the pattern, I've got 10

> maybe

> 15 good years left. I am willing to risk a recurrance of the cancer

> rather than taking a chance with the heart and dementia busines my

> mother and grandmother went through. My mother was 88 and I was at

> her side, when she died. She started to decline in her early 70s.

>

> I'm not willing to risk even one of those good years.

>

> Ruth

[Guest guest]

Ruth:

It's a tough call...my husband (former Ironworker) fell off a

building in his 20's - 35 feet to the concrete (eew!). First the

docs said he wouldn't make it to 40 (he's 52), or have

children (we have two). His sister died of a heart attack at

age 42 and his family history is lousy with cancer and heart

trouble (but you see which one of us got the cancer, don't

you? I'm only 40 and in great physical shape - well... now I

sometimes feel like I belong in the dented can section-ha : )

My mom's dad died at age 60 with heart trouble and she

was just sure either she or her sister inherited " that gene " ,

but mom's 70 (mastectomy and chemo at 65) and her sister

is 76 and still going strong, so I guess you never know how

it will all play out...have you thought about calling the Cancer

Treatment Center of America? My husband talked to them

when I was first diagnosed...it seems to be a cool bunch of

folks that specialize in tricky treatments - might be worth a

shot : ) I found great medical folks here, so we didn't pursue

that route - but they were awfully good at answering Rickey's

questions at 2:00 in the morning when he called...

Off to the treadmill I go... (and stay : )

- Jen

On Mon, 25 Sep 2006 02:14:44 -0000 " ruthiema36 "

writes:

> Of course you are relevent, Jen ; ]! My concern is that since

> congestive heart failure and dementia, because of, runs in the

> family

> two treatments that can cause congestive heart failure may be a

> little

> more than my heredity compromised ticker could take. I am not

> willing

> to take the chance. Figure if I follow the pattern, I've got 10

> maybe

> 15 good years left. I am willing to risk a recurrance of the cancer

> rather than taking a chance with the heart and dementia busines my

> mother and grandmother went through. My mother was 88 and I was at

> her side, when she died. She started to decline in her early 70s.

>

> I'm not willing to risk even one of those good years.

>

> Ruth

[Guest guest]

Ruth:

It's a tough call...my husband (former Ironworker) fell off a

building in his 20's - 35 feet to the concrete (eew!). First the

docs said he wouldn't make it to 40 (he's 52), or have

children (we have two). His sister died of a heart attack at

age 42 and his family history is lousy with cancer and heart

trouble (but you see which one of us got the cancer, don't

you? I'm only 40 and in great physical shape - well... now I

sometimes feel like I belong in the dented can section-ha : )

My mom's dad died at age 60 with heart trouble and she

was just sure either she or her sister inherited " that gene " ,

but mom's 70 (mastectomy and chemo at 65) and her sister

is 76 and still going strong, so I guess you never know how

it will all play out...have you thought about calling the Cancer

Treatment Center of America? My husband talked to them

when I was first diagnosed...it seems to be a cool bunch of

folks that specialize in tricky treatments - might be worth a

shot : ) I found great medical folks here, so we didn't pursue

that route - but they were awfully good at answering Rickey's

questions at 2:00 in the morning when he called...

Off to the treadmill I go... (and stay : )

- Jen

On Mon, 25 Sep 2006 02:14:44 -0000 " ruthiema36 "

writes:

> Of course you are relevent, Jen ; ]! My concern is that since

> congestive heart failure and dementia, because of, runs in the

> family

> two treatments that can cause congestive heart failure may be a

> little

> more than my heredity compromised ticker could take. I am not

> willing

> to take the chance. Figure if I follow the pattern, I've got 10

> maybe

> 15 good years left. I am willing to risk a recurrance of the cancer

> rather than taking a chance with the heart and dementia busines my

> mother and grandmother went through. My mother was 88 and I was at

> her side, when she died. She started to decline in her early 70s.

>

> I'm not willing to risk even one of those good years.

>

> Ruth

[Guest guest]

I think it is a 's Law issue...I'm pretty sure it won't hurt after

the port site is completely healed, but it falls under the category

of " injury sustainment " ...You know, you have a bad bruise some-

place that is REALLY sore so you make sure that you whack it

repeatedly on anything and everything in order to prolong the fun...

- Jen : )

> PS Could you put some padding over the port before putting on the

> bra? I, who do not wear a bra, have been in one (sport) 24/7 for

> over 2 weeks! Geese the whole purpose of reconstruction was so I

> wouldn't have to do this! I now own more bras than I have in my

> whole

> life!

>Ruth

[Guest guest]

I think it is a 's Law issue...I'm pretty sure it won't hurt after

the port site is completely healed, but it falls under the category

of " injury sustainment " ...You know, you have a bad bruise some-

place that is REALLY sore so you make sure that you whack it

repeatedly on anything and everything in order to prolong the fun...

- Jen : )

> PS Could you put some padding over the port before putting on the

> bra? I, who do not wear a bra, have been in one (sport) 24/7 for

> over 2 weeks! Geese the whole purpose of reconstruction was so I

> wouldn't have to do this! I now own more bras than I have in my

> whole

> life!

>Ruth

[Guest guest]

I think it is a 's Law issue...I'm pretty sure it won't hurt after

the port site is completely healed, but it falls under the category

of " injury sustainment " ...You know, you have a bad bruise some-

place that is REALLY sore so you make sure that you whack it

repeatedly on anything and everything in order to prolong the fun...

- Jen : )

> PS Could you put some padding over the port before putting on the

> bra? I, who do not wear a bra, have been in one (sport) 24/7 for

> over 2 weeks! Geese the whole purpose of reconstruction was so I

> wouldn't have to do this! I now own more bras than I have in my

> whole

> life!

>Ruth

[Guest guest]

Jen,

Yeah, the herceptin is all about whether you are Her 2 neu positive or not.

The chemo is given first to kill any stray cells you have. The herceptin, which

is an antibody, is given later to plug the receptors you have. It is like a

starving mechanism. People can get some fatigue on herceptin alone. Letting

you recover from AC and get a feel for how you are on Taxol sounds like a good

plan.

It's tough when the Taxol makes you tired or nauseous, and then the herceptin

makes you tired or achey. It all adds up.

Good luck, I hope you sail through it.

Rhonda

jbuzzard@... wrote:

My onc has prescribed Herceptin for me (Her2+ but still node

negative). If I understand it correctly, the reason he put the

Herceptin treatments on the " other end " (A/C first, then Taxol)

was because of the cardio issues. He said he would see

how well I did with the Taxol, and said if he thought it was safe

he'd combine it with the Herceptin so I could get the " the end "

a little faster : ) I had to have a MUGA scan first, and will more

than likely have several along the way to be sure my ticker is

ticking properly : )

Hoping I'm relevant....

- Jen : )

On Sun, 24 Sep 2006 16:02:30 -0000 " ruthiema36 "

writes:

> Hi Rhonda,

> Does the same apply when the news touts the new cancer treatments?

> Herceptin is a miracle drug! Trials stopped early to give women in

> the control groups access. Seems to me that for the most part the

> media is your friend! Why can Herceptin be given alone for

> metastatic

> breast cancer and not early node negative cancer? I am not taking

> it

> because the second opinion oncologist wanted me to take a course of

> AC

> prior to the Herceptin. Since congestive heart failure along with

> dementia runs in the family, I decided to pass. So many questions

> so

> few answers.

> Ruth

>

>

>

>

---------------------------------

Get your email and more, right on the new Yahoo.com

[Guest guest]

Jen,

Yeah, the herceptin is all about whether you are Her 2 neu positive or not.

The chemo is given first to kill any stray cells you have. The herceptin, which

is an antibody, is given later to plug the receptors you have. It is like a

starving mechanism. People can get some fatigue on herceptin alone. Letting

you recover from AC and get a feel for how you are on Taxol sounds like a good

plan.

It's tough when the Taxol makes you tired or nauseous, and then the herceptin

makes you tired or achey. It all adds up.

Good luck, I hope you sail through it.

Rhonda

jbuzzard@... wrote:

My onc has prescribed Herceptin for me (Her2+ but still node

negative). If I understand it correctly, the reason he put the

Herceptin treatments on the " other end " (A/C first, then Taxol)

was because of the cardio issues. He said he would see

how well I did with the Taxol, and said if he thought it was safe

he'd combine it with the Herceptin so I could get the " the end "

a little faster : ) I had to have a MUGA scan first, and will more

than likely have several along the way to be sure my ticker is

ticking properly : )

Hoping I'm relevant....

- Jen : )

On Sun, 24 Sep 2006 16:02:30 -0000 " ruthiema36 "

writes:

> Hi Rhonda,

> Does the same apply when the news touts the new cancer treatments?

> Herceptin is a miracle drug! Trials stopped early to give women in

> the control groups access. Seems to me that for the most part the

> media is your friend! Why can Herceptin be given alone for

> metastatic

> breast cancer and not early node negative cancer? I am not taking

> it

> because the second opinion oncologist wanted me to take a course of

> AC

> prior to the Herceptin. Since congestive heart failure along with

> dementia runs in the family, I decided to pass. So many questions

> so

> few answers.

> Ruth

>

>

>

>

---------------------------------

Get your email and more, right on the new Yahoo.com

[Guest guest]

Jen,

Yeah, the herceptin is all about whether you are Her 2 neu positive or not.

The chemo is given first to kill any stray cells you have. The herceptin, which

is an antibody, is given later to plug the receptors you have. It is like a

starving mechanism. People can get some fatigue on herceptin alone. Letting

you recover from AC and get a feel for how you are on Taxol sounds like a good

plan.

It's tough when the Taxol makes you tired or nauseous, and then the herceptin

makes you tired or achey. It all adds up.

Good luck, I hope you sail through it.

Rhonda

jbuzzard@... wrote:

My onc has prescribed Herceptin for me (Her2+ but still node

negative). If I understand it correctly, the reason he put the

Herceptin treatments on the " other end " (A/C first, then Taxol)

was because of the cardio issues. He said he would see

how well I did with the Taxol, and said if he thought it was safe

he'd combine it with the Herceptin so I could get the " the end "

a little faster : ) I had to have a MUGA scan first, and will more

than likely have several along the way to be sure my ticker is

ticking properly : )

Hoping I'm relevant....

- Jen : )

On Sun, 24 Sep 2006 16:02:30 -0000 " ruthiema36 "

writes:

> Hi Rhonda,

> Does the same apply when the news touts the new cancer treatments?

> Herceptin is a miracle drug! Trials stopped early to give women in

> the control groups access. Seems to me that for the most part the

> media is your friend! Why can Herceptin be given alone for

> metastatic

> breast cancer and not early node negative cancer? I am not taking

> it

> because the second opinion oncologist wanted me to take a course of

> AC

> prior to the Herceptin. Since congestive heart failure along with

> dementia runs in the family, I decided to pass. So many questions

> so

> few answers.

> Ruth

>

>

>

>

---------------------------------

Get your email and more, right on the new Yahoo.com

[Guest guest]

Ruth,

That is wonderful. We love to garden too, but we are only up to one freezer!

I love getting the freshest salad in town right out of my own back yard. Hey,

produce is expensive!

We try to never pay interest on anything and stay out of debt. We've worked

hard to get there, but it is such freedom. I just love it.

happy harvesting!

Rhonda

ruthiema36 wrote:

Hi again, Rhonda,

Ya pretty much hit the nail on the head! I really, really, like my

level of functioning. About 6 weeks after mastectomy I put in my

veggie gardens and have spent a plesent summer tending them. I have

been putting up the fruits of my labors and have been so blessed, that

we had to buy another freezer!

I hear you about keeping up with the Jonses. I have a sister like

that. Hubby and I never made more than 50 grand a year, raised three

kids, put them through college and thanks to very good investing and

planning, on our part, will have no money worries in our retirement.

I could actually afford to pay for the Herceptin, off label, if

insurance wouldn't pick it up without AC first.

Ruth

PS We always believed in living simply, but well and gave our kids

many experiences their friends never had.

> I wish you all the best in your future. Unfortunately, treatment

options can get pretty complicated (too many choices). It is valid to

look at the choices and say " hey, I don't want to take that risk, I

like my level of functioning like it is thank you very much. " Enjoy

your health and stamina!

>

> thanks,

>

> Rhonda

---------------------------------

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

Ruth,

That is wonderful. We love to garden too, but we are only up to one freezer!

I love getting the freshest salad in town right out of my own back yard. Hey,

produce is expensive!

We try to never pay interest on anything and stay out of debt. We've worked

hard to get there, but it is such freedom. I just love it.

happy harvesting!

Rhonda

ruthiema36 wrote:

Hi again, Rhonda,

Ya pretty much hit the nail on the head! I really, really, like my

level of functioning. About 6 weeks after mastectomy I put in my

veggie gardens and have spent a plesent summer tending them. I have

been putting up the fruits of my labors and have been so blessed, that

we had to buy another freezer!

I hear you about keeping up with the Jonses. I have a sister like

that. Hubby and I never made more than 50 grand a year, raised three

kids, put them through college and thanks to very good investing and

planning, on our part, will have no money worries in our retirement.

I could actually afford to pay for the Herceptin, off label, if

insurance wouldn't pick it up without AC first.

Ruth

PS We always believed in living simply, but well and gave our kids

many experiences their friends never had.

> I wish you all the best in your future. Unfortunately, treatment

options can get pretty complicated (too many choices). It is valid to

look at the choices and say " hey, I don't want to take that risk, I

like my level of functioning like it is thank you very much. " Enjoy

your health and stamina!

>

> thanks,

>

> Rhonda

---------------------------------

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

Ruth,

That is wonderful. We love to garden too, but we are only up to one freezer!

I love getting the freshest salad in town right out of my own back yard. Hey,

produce is expensive!

We try to never pay interest on anything and stay out of debt. We've worked

hard to get there, but it is such freedom. I just love it.

happy harvesting!

Rhonda

ruthiema36 wrote:

Hi again, Rhonda,

Ya pretty much hit the nail on the head! I really, really, like my

level of functioning. About 6 weeks after mastectomy I put in my

veggie gardens and have spent a plesent summer tending them. I have

been putting up the fruits of my labors and have been so blessed, that

we had to buy another freezer!

I hear you about keeping up with the Jonses. I have a sister like

that. Hubby and I never made more than 50 grand a year, raised three

kids, put them through college and thanks to very good investing and

planning, on our part, will have no money worries in our retirement.

I could actually afford to pay for the Herceptin, off label, if

insurance wouldn't pick it up without AC first.

Ruth

PS We always believed in living simply, but well and gave our kids

many experiences their friends never had.

> I wish you all the best in your future. Unfortunately, treatment

options can get pretty complicated (too many choices). It is valid to

look at the choices and say " hey, I don't want to take that risk, I

like my level of functioning like it is thank you very much. " Enjoy

your health and stamina!

>

> thanks,

>

> Rhonda

---------------------------------

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

Thanks Rhonda! I sure hope I'll be sailing (and not sinking : )

- Jen : )

On Mon, 25 Sep 2006 17:25:58 -0700 (PDT) Rhonda Karl

writes:

> Jen,

>

> Yeah, the herceptin is all about whether you are Her 2 neu

> positive or not. The chemo is given first to kill any stray cells

> you have. The herceptin, which is an antibody, is given later to

> plug the receptors you have. It is like a starving mechanism.

> People can get some fatigue on herceptin alone. Letting you recover

> from AC and get a feel for how you are on Taxol sounds like a good

> plan.

>

> It's tough when the Taxol makes you tired or nauseous, and then

> the herceptin makes you tired or achey. It all adds up.

>

> Good luck, I hope you sail through it.

>

> Rhonda

>

> jbuzzard@... wrote:

> My onc has prescribed Herceptin for me (Her2+ but still

> node

> negative). If I understand it correctly, the reason he put the

> Herceptin treatments on the " other end " (A/C first, then Taxol)

> was because of the cardio issues. He said he would see

> how well I did with the Taxol, and said if he thought it was safe

> he'd combine it with the Herceptin so I could get the " the end "

> a little faster : ) I had to have a MUGA scan first, and will more

> than likely have several along the way to be sure my ticker is

> ticking properly : )

>

> Hoping I'm relevant....

> - Jen : )

>

> On Sun, 24 Sep 2006 16:02:30 -0000 " ruthiema36 "

>

> writes:

> > Hi Rhonda,

> > Does the same apply when the news touts the new cancer treatments?

>

> > Herceptin is a miracle drug! Trials stopped early to give women in

> > the control groups access. Seems to me that for the most part the

> > media is your friend! Why can Herceptin be given alone for

> > metastatic

> > breast cancer and not early node negative cancer? I am not taking

> > it

> > because the second opinion oncologist wanted me to take a course

> of

> > AC

> > prior to the Herceptin. Since congestive heart failure along with

> > dementia runs in the family, I decided to pass. So many questions

> > so

> > few answers.

> > Ruth

> >

> >

> >

> >

>

>

>

>

>

>

> ---------------------------------

> Get your email and more, right on the new Yahoo.com

>

>