chemo options & clinical trials

[Guest guest]

I had my first appt with the medical oncologist last week and because of

my age and grade of tumor they recommend chemo. a dose every 3 weeks for

4 doses followed by radiation and that's it since I'm a triple negative.

Are most of you on the A/C? Do you get to choose that? They asked me to

participate in this clinical trial for node negative BC patients. I read

and reread the information and I'm not interested in it. Is that awful?

I just want to get in and get over with this. This trial you could

either get the 4 doses of the A/C or the computer could pick you to go

with 6 doses of 5-FU + epirubicin + cyclophosphamide. Apparently the

latter is the norm in the European countries and the 4 dose A/C is the

norm here in the US. I'd rather be done after 4 doses. I know I'll be

followed for the rest of my life but with this trial you are followed

and need to give blood every 6 months for 5 yrs and then every year

thereafter. Which isn't a HUGE deal but I don't like the 50-50 chance of

receiving the 4 vs 6 doses.

I also received information on a local salon who also helps women with

wigs so I'm calling first thing this morning. It is weird and my husband

is having a hard time understanding why I'm more concerned over losing

my hair than I am about the actual cancer. I can't explain it. I'm

self-conscious to begin with as I'm a larger woman so I've always tried

to appear neat and well-dressed and always took pride in my hair. Weird

I know. Still, he's ok with whatever I want or need to do to get through

this. He read the posts on bald maintenance and wants to shave my head

now! He makes me laugh which is great.

I go in next week for MUGA scan, EKG, and chest x-ray. I hear that is

the norm. Reading about what this drug Adriamycin can do is scary

business. And on top of that they want me to receive a port which is

equally as scary because if I read correctly it goes to one of the veins

of the heart and you could die from that. Do all of you have a port? On

the one hand I'm glad because it is hard to find veins but after my

first biopsy (to remove an area the MRI found to be suspicious just

prior to my lumpectomy. Was benign) they discovered I had sleep apnea.

38 yrs old and gotta deal with that now. So instead of the local I

received the first time which was great, they did a general for the

lumpectomy & SNB and OMG was I sick to the stomach and i sooooo much

pain. I should've been out of there by noone and didn't leave until 4

pm. Ended up sleeping til the next morning. So knowing I must go in

again...well...I'm not looking forward to it. Enough babbling. Just

getting some things off my mind here. Thanks for listening.

--

Ekis

Central PA

DXd 12/7/06

Invasive Ductal Carcinoma

Stage I grade 3

<1 cm ER-/PR- HER2-

node negative

[Guest guest]

,

I wouldn't feel bad if you don't want to do the clinical trial. Its an

individual decision.

I didn't have a port but lots of the ladies have. I am sure they will answer

your questions about it.

I will keep you in my prayers.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

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chemo options & clinical trials

I had my first appt with the medical oncologist last week and because of

my age and grade of tumor they recommend chemo. a dose every 3 weeks for

4 doses followed by radiation and that's it since I'm a triple negative.

Are most of you on the A/C? Do you get to choose that? They asked me to

participate in this clinical trial for node negative BC patients. I read

and reread the information and I'm not interested in it. Is that awful?

I just want to get in and get over with this. This trial you could

either get the 4 doses of the A/C or the computer could pick you to go

with 6 doses of 5-FU + epirubicin + cyclophosphamide. Apparently the

latter is the norm in the European countries and the 4 dose A/C is the

norm here in the US. I'd rather be done after 4 doses. I know I'll be

followed for the rest of my life but with this trial you are followed

and need to give blood every 6 months for 5 yrs and then every year

thereafter. Which isn't a HUGE deal but I don't like the 50-50 chance of

receiving the 4 vs 6 doses.

I also received information on a local salon who also helps women with

wigs so I'm calling first thing this morning. It is weird and my husband

is having a hard time understanding why I'm more concerned over losing

my hair than I am about the actual cancer. I can't explain it. I'm

self-conscious to begin with as I'm a larger woman so I've always tried

to appear neat and well-dressed and always took pride in my hair. Weird

I know. Still, he's ok with whatever I want or need to do to get through

this. He read the posts on bald maintenance and wants to shave my head

now! He makes me laugh which is great.

I go in next week for MUGA scan, EKG, and chest x-ray. I hear that is

the norm. Reading about what this drug Adriamycin can do is scary

business. And on top of that they want me to receive a port which is

equally as scary because if I read correctly it goes to one of the veins

of the heart and you could die from that. Do all of you have a port? On

the one hand I'm glad because it is hard to find veins but after my

first biopsy (to remove an area the MRI found to be suspicious just

prior to my lumpectomy. Was benign) they discovered I had sleep apnea.

38 yrs old and gotta deal with that now. So instead of the local I

received the first time which was great, they did a general for the

lumpectomy & SNB and OMG was I sick to the stomach and i sooooo much

pain. I should've been out of there by noone and didn't leave until 4

pm. Ended up sleeping til the next morning. So knowing I must go in

again...well...I'm not looking forward to it. Enough babbling. Just

getting some things off my mind here. Thanks for listening.

--

Ekis

Central PA

DXd 12/7/06

Invasive Ductal Carcinoma

Stage I grade 3

<1 cm ER-/PR- HER2-

node negative

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[Guest guest]

,

I was diagnosed almost a month later than you, but I have the same

triple-negative, node-negative Grade 3 cancer you have.

> Are most of you on the A/C? Do you get to choose that?

I don't know if patients get to choose their drugs, because the docs

try to tailor the drugs and treatment to the particular type of

cancer. Even though we all have breast cancer, the receptor status

and aggressiveness of the tumor and the stage determine what

treatment you'll get. I think also whether you've had breast-

conserving surgery or not. If I haven't got things confused,

radiation is generally done with lumpectomies rather than

mastectomies. But I'm sure I'll be corrected by anyone with a

different experience.

In general, they try to give you the treatment that the current

state of knowledge says is the *best* treatment for your type of

cancer. 'Best' to the medical community means in terms of survival

without recurrence to some time out, not that it has minimal side

effects or anything like that.

I think the way the drug approvals work right now is that they

prefer a drug that increases survival over one with less survival

that makes patients more comfortable in the meantime. Or, if both

give equal survival, they'd take the one that makes the patient more

comfortable.

I'm curious how many of us put up with the chemo effects because we

can expect to live longer with it than without it, and are willing

to deal with bad things in the short term? And how many are

consciously willing to feel better but shorten our lives by 2 or 3

or 4 years or more years?

>They asked me to

> participate in this clinical trial for node negative BC

patients. I read

> and reread the information and I'm not interested in it. Is that

awful?

It's not awful at all. It means you are willing to accept the US

treatment, and don't much care if the European treatment is 'better'

or not at this point in time. There is no reason why you have to be

a guinea pig. I would be more likely to accept being in a clinical

trial because I am a statistician, and I feel I need to put my body

where my philosophy is ;-). I have been in clinical trials for

asthma medications, for example. And I have enrolled in a study of

newly-diagnosed BC patients to see how diet, exercise, genetics,

etc. affects survival some time out. But that is not a clinical

trial but an epidimiologic study, because they aren't randomly

assigning me to any diet or exercise regimen - just recording what I

do.

>

>. It is weird and my husband

> is having a hard time understanding why I'm more concerned over

losing

> my hair than I am about the actual cancer. I can't explain it.

The mind does do weird things. But don't worry about it. I think

this might mean your mind is worrying about something it *can* deal

with, rather than something it cannot, so it is probably healthier

for you to have your attitude at this point.

> Still, he's ok with whatever I want or need to do to get through

> this. He read the posts on bald maintenance and wants to shave

my head

> now! He makes me laugh which is great.

I am always glad when I hear about husbands like yours. My ex would

have been gone at ths first sign of trouble, so I'm glad he's long

gone.

> And on top of that they want me to receive a port which is

> equally as scary because if I read correctly it goes to one of

the veins

> of the heart and you could die from that. Do all of you have a

>port?

I think ports are standard these days because it makes it easier for

them to give you the chemo. On the other hand, my older sister was

adamant that she *not* get a port, and changed oncs so that her

wishes there were fulfilled. That was about 7 years ago. I have no

idea if it is easier or harder to find an onc who will support you

on the no-port decision these days. I think we go through enough

with chemo without having invasive things that are there more to

make life easier for the health care provider than for us. If you

have the energy, you might wnat to check out whether there is an onc

in your area who will back you up on this decision.

[Guest guest]

Hi ,

Carol from Ohio here. I have replied to you before through your

personal email and didn't know if you had gotten my messages, so I

thought I'd reply through this site this time.

I am a triple neg also. I had the regimine of the 6 doses of 5 FU,

Epirubicin and Cytoxin that you mentioned was offered to you in a

trial. I was not givrn any other option, and now I am wondering if my

onc put me in some sort of trial and didn't tell me! I do get

bloodwork done every 3 months right now as I am still in my year

after chemo. I have to say that the chemo was not as bad as I had

anticipated. Yes, I lost my hair, but I was amazed that I did not get

sick even once after treatments. Maybe that was due to the anti-

nausea meds they gave me. I don't know for sure. If you have any

questions about the regimen please don't hesitate to ask me, either

through this site or email me personally. Us triple negs have to

stick together because from what I hear there aren't that many of us

and there is less known about what causes our cancers. Trust your own

instincts and I am sure you will make the right decision.

Carol

>

> I had my first appt with the medical oncologist last week and

because of

> my age and grade of tumor they recommend chemo. a dose every 3

weeks for

> 4 doses followed by radiation and that's it since I'm a triple

negative.

>

> Are most of you on the A/C? Do you get to choose that? They asked

me to

> participate in this clinical trial for node negative BC patients. I

read

> and reread the information and I'm not interested in it. Is that

awful?

> I just want to get in and get over with this. This trial you could

> either get the 4 doses of the A/C or the computer could pick you to

go

> with 6 doses of 5-FU + epirubicin + cyclophosphamide. Apparently

the

> latter is the norm in the European countries and the 4 dose A/C is

the

> norm here in the US. I'd rather be done after 4 doses. I know I'll

be

> followed for the rest of my life but with this trial you are

followed

> and need to give blood every 6 months for 5 yrs and then every year

> thereafter. Which isn't a HUGE deal but I don't like the 50-50

chance of

> receiving the 4 vs 6 doses.

>

> I also received information on a local salon who also helps women

with

> wigs so I'm calling first thing this morning. It is weird and my

husband

> is having a hard time understanding why I'm more concerned over

losing

> my hair than I am about the actual cancer. I can't explain it. I'm

> self-conscious to begin with as I'm a larger woman so I've always

tried

> to appear neat and well-dressed and always took pride in my hair.

Weird

> I know. Still, he's ok with whatever I want or need to do to get

through

> this. He read the posts on bald maintenance and wants to shave my

head

> now! He makes me laugh which is great.

>

> I go in next week for MUGA scan, EKG, and chest x-ray. I hear that

is

> the norm. Reading about what this drug Adriamycin can do is scary

> business. And on top of that they want me to receive a port which

is

> equally as scary because if I read correctly it goes to one of the

veins

> of the heart and you could die from that. Do all of you have a

port? On

> the one hand I'm glad because it is hard to find veins but after my

> first biopsy (to remove an area the MRI found to be suspicious just

> prior to my lumpectomy. Was benign) they discovered I had sleep

apnea.

> 38 yrs old and gotta deal with that now. So instead of the local I

> received the first time which was great, they did a general for the

> lumpectomy & SNB and OMG was I sick to the stomach and i sooooo

much

> pain. I should've been out of there by noone and didn't leave until

4

> pm. Ended up sleeping til the next morning. So knowing I must go in

> again...well...I'm not looking forward to it. Enough babbling. Just

> getting some things off my mind here. Thanks for listening.

>

> --

> Ekis

> Central PA

> DXd 12/7/06

> Invasive Ductal Carcinoma

> Stage I grade 3

> <1 cm ER-/PR- HER2-

> node negative

>

[Guest guest]

>

> Hi ,

> Carol from Ohio here. I have replied to you before through your

> personal email and didn't know if you had gotten my messages, so I

> thought I'd reply through this site this time.

> I am a triple neg also. I had the regimine of the 6 doses of 5 FU,

> Epirubicin and Cytoxin that you mentioned was offered to you in a

> trial. I was not givrn any other option, and now I am wondering if my

> onc put me in some sort of trial and didn't tell me!

Your onc cannot put you into a clinical trial without your informed

consent. Period. If s/he did do that, s/he could have his/her medical

license revoked.

I really haven't heard of oncs telling people which chemo to choose

from. The treatment is usually based on the best judgement of the

doctor for that type of cancer.

It may be that this treatment - which is the standard in Europe - is

the one s/he prefers. The trial would be to see which one is *better*

(on average, of course), with having you randomized to one treatment or

the other.

You might want to ask why s/he chose that particular combination at

your next visit. But I very much doubt that you were in a trial without

consent.

Ann

[Guest guest]

How did you handle your chemo. I was in the hospital 3 time with 4 treatments

of FEC. That was last april 06 and them received 3 treaments of another chemo

which gave me terrible nerapathy that never left my feet and then 2 final does

of taxol. I have never been well since.

annk_71679 ann.kalinowski@...> wrote:

>

> Hi ,

> Carol from Ohio here. I have replied to you before through your

> personal email and didn't know if you had gotten my messages, so I

> thought I'd reply through this site this time.

> I am a triple neg also. I had the regimine of the 6 doses of 5 FU,

> Epirubicin and Cytoxin that you mentioned was offered to you in a

> trial. I was not givrn any other option, and now I am wondering if my

> onc put me in some sort of trial and didn't tell me!

Your onc cannot put you into a clinical trial without your informed

consent. Period. If s/he did do that, s/he could have his/her medical

license revoked.

I really haven't heard of oncs telling people which chemo to choose

from. The treatment is usually based on the best judgement of the

doctor for that type of cancer.

It may be that this treatment - which is the standard in Europe - is

the one s/he prefers. The trial would be to see which one is *better*

(on average, of course), with having you randomized to one treatment or

the other.

You might want to ask why s/he chose that particular combination at

your next visit. But I very much doubt that you were in a trial without

consent.

Ann

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