QuoteReplyTopic: Please Give Us Your Facts Posted: Jul 03 2007 at 7:50am
It all means that even if you are ER- and Pr - BUT are Her2neu + ..... then the drug Herceptin would be effective as an inhibitor.
On the other hand, if you had ER + and Pr + but were Her2neu -
....... you could get the other class of drugs like Tamoxifen, Femara, or Arimidex.
Therefore, if a person is ER and Pr negative ...... drugs like the Tamoxifen kind would NOT be effective.
However, if the Her2neu status is Positive ...... even though the ER and PR are negative ..........
they could be given the effective drug Herceptin.
To sum it all up:
Cancer Inhibitors > > ER and PR Positive = drugs like Tamoxifen
Her2neu Positive = the drug Herceptin
Triple Negative = NO drugs available Yet!
About the survey: We could gather our own survey info by a category
such as - " Please Give Us Your Facts"
1/ How old are you
2/ Where were your born and where have you lived
3/ What is the specific name of your type of cancer Other than it being
triple negative
4/ What is your blood type
5/ Are you a drinker or a smoker
6/ Has anyone else in your family had Any kind of cancer
7/ How many pregnancies have you had
8/ What childhood diseases have you had : Mumps, Measles, Chicken Pox
9/ Did you have any symptons of your breast cancer
10/ How was your cancer first discovered
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur
12/ How often did you have mammograms Before you were diagnosed
13/ Have you ever had a traumatic blow to your body and where was it
14/ Have you ever had your hormones checked Prior to being diagnosed
15/ Before you were diagnosed, what medications were you on
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed
Etc.
Everyone could add even more questions for Our survey.
Ssclark8267 wrote:
Sorry for my complete lack of understanding on this --
is Her2/neu a gene or a protein?
is Her2/neu what you want to have, rather than positive or negative?
I'm assuming Her2/neu is "neutral" on the status of the gene or protein. But how can you be neutral on a gene? Don't you either have the gene, or not?
Back to the survey idea--
Does the TNBC exec board have a way (or would they be willing) to pull together the data that we put into these emails?
For example, if we send demographic data to this website, could they assimilate it centrally, and then, (just an idea for us to build on)-- send the compilation out once a week so that we can all see the data.?
Or is there a better way to accomplish that? It's easy to think of questions that we can ask each other. But lining them up by person and by answer needs to be handled centrally (at least the way I'm thinking).
Let's say (for simplicity) that we found that ALL of us are blood type A negative, and we all drank Bacardi rum every night, and that we all live near water treatment plants. We need a way to be able to SEE that in one place (like on a matrix).
Any ideas?
Edited by lucky - Jul 03 2007 at 7:58am
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
i am assuming you would like answers to the thoughtful questions you posed so here goes:
1. 60, age 58 at dx
2. lafayette, indiana, now in miami, fl. only lived in indiana & fl
3. IDC, stage 2b, grade 3, basal like, trip neg
4. 0 pos
5. no never have been, other than occasional glass of zinfandel
now extremely allergic to smoke!
6. yes, both paternal and maternal g mothers had ovarian ca, g mothers sister had br ca, father and uncle had prostate ca, uncle and cousing colon cancers, mother cervical ca ..i did genetic testing; brac1,2 neg
7. one pg
8. mumps, measles, chicken pox
9. i had fatigue for one yr prior to dx
10. i discovered my lump (high on my chest, didnt think it was breast tissue) the day after doing some pull up's ...thought it was exercise related muscle pull
11. no, thank god!
12. had frequent mammo's...very dense breast tissue. fibrocystic disease. had a neg mammo just 8 mo prior to finding my lump
13. had 2 mva's (within 2 wks of each other) just 2 months after finishing chemo ....have ongoing neck pain
14. yes, and used vivelle estrogen patch for 10 yrs following total hysterectomy, oophrectomy for severe endometriosis (anectodally, have found quite a few br ca pts have endo)
15. on meds for hypertension, high cholesterol, asthma, gerd
16. many antibiotics for years for ear infections, lung, abcess etc...now have cholesteatoma in ear from repeated ear infections...
maybe we can find some commonality with our answers....hope this helps!
marilyn...happy 4th!
MARILYN from Miami
dx:6-05, trip neg, basoloid, gr 3, stage IIB, lumpectomy,SNB w total axillary node surg 3pos/34 dose dense ACT, 33 rads, BMB (neutropenia) NED!!
I lived for awhile in Miami - near Coral Gables. Was born in New York, and now live in Toronto, Canada. Also lived in Central American for about 4 years.
Hmmm....... interesting about question #9. I also felt alot of fatigue before I was diagnosed. Also, had frequent mammograms and dense breasts. I take Altace for the past 5 years for hypertension. I was diagnosed at 56 - am now 57.
My cancer is extremely rare - only 1 - 1.4 % of the population have my kind. ( glycogen rich clear cell carcinoma of the breast ) Grade II/III
My 3 sisters all had Mumps, Measles and Chicken Pox as children.
I never caught those childhood diseases.
Don't smoke - seldom have a glass of red wine.
No incidence of any kind of cancer in my family - even going back several generations.
Used birth control pills for about 5 years when I was in my 20's. Norinyl 1+50 was the name of it.
Have seldom used antibiotics.
Blood type is B Positive
Would everyone else like to answer the list of questions I posted, Please.
I agree - Let's see if we can find a common denominator amongst all of us.
Thanks everyone
MarilyninMiami wrote:
lucky,
i am assuming you would like answers to the thoughtful questions you posed so here goes:
1. 60, age 58 at dx
2. lafayette, indiana, now in miami, fl. only lived in indiana & fl
3. IDC, stage 2b, grade 3, basal like, trip neg
4. 0 pos
5. no never have been, other than occasional glass of zinfandel
now extremely allergic to smoke!
6. yes, both paternal and maternal g mothers had ovarian ca, g mothers sister had br ca, father and uncle had prostate ca, uncle and cousing colon cancers, mother cervical ca ..i did genetic testing; brac1,2 neg
7. one pg
8. mumps, measles, chicken pox
9. i had fatigue for one yr prior to dx
10. i discovered my lump (high on my chest, didnt think it was breast tissue) the day after doing some pull up's ...thought it was exercise related muscle pull
11. no, thank god!
12. had frequent mammo's...very dense breast tissue. fibrocystic disease. had a neg mammo just 8 mo prior to finding my lump
13. had 2 mva's (within 2 wks of each other) just 2 months after finishing chemo ....have ongoing neck pain
14. yes, and used vivelle estrogen patch for 10 yrs following total hysterectomy, oophrectomy for severe endometriosis (anectodally, have found quite a few br ca pts have endo)
15. on meds for hypertension, high cholesterol, asthma, gerd
16. many antibiotics for years for ear infections, lung, abcess etc...now have cholesteatoma in ear from repeated ear infections...
maybe we can find some commonality with our answers....hope this helps!
marilyn...happy 4th!
Edited by lucky - Jul 07 2007 at 1:52pm
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
2/ Where were your born and where have you lived born SE Indiana; lived in MI since 1988. Lived 4 years in Brussels Belgium
3/ What is the specific name of your type of cancer Other than it being
triple negative poorly differentiated invasive ductal carcinoma; left breast
4/ What is your blood type O-pos?
5/ Are you a drinker or a smoker never smoked; regular wine drinker
6/ Has anyone else in your family had Any kind of cancer not immediate family; cousins; one aunt with bc
7/ How many pregnancies have you had 3 live births; 1 miscarriage
8/ What childhood diseases have you had : Mumps, Measles, Chicken Pox chicken pox;
9/ Did you have any symptons of your breast cancer found lump myself; some physical discomfort got me feeling around
10/ How was your cancer first discovered found lump; requested mammogram
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur still in primary treatment
12/ How often did you have mammograms Before you were diagnosed 1
13/ Have you ever had a traumatic blow to your body and where was it no
14/ Have you ever had your hormones checked Prior to being diagnosed no
15/ Before you were diagnosed, what medications were you on Protonix for acid reflux
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed no
1) Have you ever been on birth control? For how long? What kind? yes; ortho-novum; on and off for 10 years
2) If you have children, did you breastfeed? For how long? no;
3) Do you have dense breast tissue? no
4) Have you tested positive for BRCA1/2? tested negative for both 5) Exercise and diet? both are poor; do not regularly exercise. With three kids, fast food 6) weight? about 25 lbs overweight
2/ Where were your born and where have you lived / Ontario Canada/Ohio/Oklahoma
3/ What is the specific name of your type of cancer Other than it being
triple negative IDC
4/ What is your blood type/ not sure
5/ Are you a drinker or a smoker/ not a drinker, did smoke
6/ Has anyone else in your family had Any kind of cancer/ dont know adopted
7/ How many pregnancies have you had/ 5/ 3 miscarrages
8/ What childhood diseases have you had : Mumps, Measles, Chicken Pox/ not sure
9/ Did you have any symptons of your breast cancer/ brusing, tired
10/ How was your cancer first discovered/ I found lump
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur/ out one year last month clear so far :)
12/ How often did you have mammograms Before you were diagnosed/ yearly was 6 months late getting one though
13/ Have you ever had a traumatic blow to your body and where was it/ sure, fell off ladder/fell off step/ knocked out in an attack in a parking garage about 15 years ago/ fall alot but not due to drinking, goofy dogs underfoot :)
14/ Have you ever had your hormones checked Prior to being diagnosed/no
15/ Before you were diagnosed, what medications were you on/ dang estrogen for anout 20 years after hysteresctomy due to cysts, also had several breast cysts
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed/ yes had a dentist doing a root cannal go into sinus, bad infecion, then implanted tooth got infected 6 months later
I've noticed that women who have lived in colder climates seem to have a higher rate of cancer. Could it be from the use of burning coal stacks that industries use to provide heat and energy ??
I read somewhere that firemen are now being given workmens compensation because of their exposure to pollutants on the job - like smoke inhalation. Something equivalent to what coal miners get ( black lung )
This is why I am asking every member on here to Please answer the above questions. We may just have to convince our cities, states, and countries, to stop the use of coal burning.
C'mon ladies - answer the call - the lives we save might be our own !
Thank you !
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
I don't have triple negative cancer but I do have glycogen-rich clear cell carcinoma of the breast - but mine is oestrogen and progesterone positive and grade 1, although veering towards grade 2 (brought down by low proliferation scores). I am blood group B negative
5. I do drink, in past binge drank a bit at parties. I used to smoke, now don't and complain about smokers smelling foul plus making the environment bad
6. My grandmother died of stomach cancer, my great great grandmother got bowel cancer, my uncle got lung cancer but no history of breast cancer
7. No pregnancies
8. mumps, measles, chicken pox, glandular fever (Epstein Barr virus is associated with higher risk of one cancer can't remember which)
9. I felt extremely healthy was walking 8 miles each saturday and climbing five flights of work each morning in work. Noticed bulge in side of breast in mirror.
10. As above, saw a bulge in side of my breast and then felt a mobile rubbery lump
11. No sign of recurrence
12. I had some mammograms in 1997 when I developed breast pain. That was enough to put me off them. Had more in 2003 when I found the lump, but nothing showed up as I have dense breast tissue.
13. Bruised my bosom on one occasion
14. Used pill continuously without breakthrough monthly bleeds through twenties and thirties
There is another lady on this board that has glycogen-rich clear cell carcinoma. She has been trying really hard to learn more about this type of breast cancer.
I did hear from JaneRA that there is another woman here which is why I decided to come although I don't have triple negative cancer, my glycogen-rich clear cell version of breast cancer is oestrogen and progesterone positive.
2/ Where were your born and where have you lived Born in New Jersey; haved live all over the place here and abroad(having grown up in a military family); live in Los Angeles since 1991
3/ What is the specific name of your type of cancer Other than it being
triple negative IDC
4/ What is your blood type B+
5/ Are you a drinker or a smoker I have never smoked. I drink socially.
6/ Has anyone else in your family had Any kind of cancer Two maternal aunts with Breast CA; maternal uncle with bone CA; mother with colo-rectal CA
7/ How many pregnancies have you had 4 pregnancies - two live births
8/ What childhood diseases have you had : Mumps, Measles, Chicken Pox Measles and Chicken Pox
9/ Did you have any symptons of your breast cancer None - discovered on annual mammogram
10/ How was your cancer first discovered Routine annual mammo
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur N/A
12/ How often did you have mammograms Before you were diagnosed Annually since age 40
13/ Have you ever had a traumatic blow to your body and where was it No
14/ Have you ever had your hormones checked Prior to being diagnosed Yes
15/ Before you were diagnosed, what medications were you on Lotensin, Singulair, Pravachol, Celexa, Detrol
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed No
2/ Where were your born and where have you lived Born in New York City and have lived in Rochester, NY since 1986
3/ What is the specific name of your type of cancer Other than it being
triple negative Invasive Ductal Carcinoma
4/ What is your blood type Don't know
5/ Are you a drinker or a smoker Neither
6/ Has anyone else in your family had Any kind of cancer Maternal grandmother had leukemia
7/ How many pregnancies have you had 0
8/ What childhood diseases have you had : Measles, Chicken Pox
9/ Did you have any symptons of your breast cancer Nipple discharge and palpable lump, lump in arm pit
10/ How was your cancer first discovered I felt a breast lump
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur Mets 4 months after completion of treatment to both lungs, chest wall, pleural lining, supraclavicular, neck nodes, and skin on bc breast.
12/ How often did you have mammograms Before you were diagnosed Didn't have any. I recently just turned 41 when I found my lump.
13/ Have you ever had a traumatic blow to your body and where was it No
14/ Have you ever had your hormones checked Prior to being diagnosed Yes
15/ Before you were diagnosed, what medications were you on Theophylline, Albuterol, Fluticasone
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed Yes
5/ Are you a drinker or a smoker drink moderately 2-4 glasses wine/week, smoked moderately from age 14 to 21
6/ Has anyone else in your family had Any kind of cancer paternal
grandmother - breast cancer, paternal great-aunt - stomach cancer,
paternal grandfather - colon cancer, maternal great-aunt - breast
cancer, maternal great-uncle - bone cancer
7/ How many pregnancies have you had 2
8/ What childhood diseases have you had : Mumps, Measles, Chicken Pox Chicken Pox
9/ Did you have any symptons of your breast cancer lump
10/ How was your cancer first discovered felt lump in shower
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur no recurrence yet (5 years)
12/ How often did you have mammograms Before you were diagnosed never
13/ Have you ever had a traumatic blow to your body and where was it no
14/ Have you ever had your hormones checked Prior to being diagnosed no
15/ Before you were diagnosed, what medications were you on prozac and bc pills
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed when I was a teenager and had bronchitis/pneumonia for several years in a row
2/ Where were your born and where have you lived ? UK all of life - born in Epping, Essex. Grew up in Hunstanton, Norfolk. Living in Cumbria for past 18 years.
3/ What is the specific name of your type of cancer Other than it being
triple negative? IDC, stage 1, grade 3
4/ What is your blood type? A positive
5/ Are you a drinker or a smoker? Non-smoker, drinker at Christmas only!
6/ Has anyone else in your family had Any kind of cancer? I have a personal history of Hodgkin's lymphoma Stage 2a at age 24. My Mum had Ovarian Cancer 14 years ago & now has Clear Cell Renal Carcinoma + mets. Maternal aunt died of Breast Cancer. Maternal grandfather died of Lung Cancer. Maternal Gt Grandmother died of Cervical Cancer. Paternal Grandfather had Prostate Cancer.
7/ How many pregnancies have you had? 5 - 1 miscarriage, 1 stillbirth, 3 live births
8/ What childhood diseases have you had? Mumps, Measles, Chicken Pox? Only chicken pox at age 27!
9/ Did you have any symptons of your breast cancer? None at all.
10/ How was your cancer first discovered? On my annual mammogram - I'm on a programme of annual mammograms since 2004 because the mantle field radiotherapy for Hodgkin's Lymphoma I received in 1992 has increased my BC risk to between 1 in 3 and 1 in 7 before I reach 50. The risk goes up more after 50.
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur? Finished chemo in Feb2007 - no recurrence :-)
12/ How often did you have mammograms Before you were diagnosed? Annually since age 36 - see qu.10
13/ Have you ever had a traumatic blow to your body and where was it? Fell down an iron fire escape, top to bottom, 7 years ago... I had my son, Will, in my arms at the time (just a baby) so couldn't use my arms to stop us & so bunched up to protect him but he still got a bump on the forehead - he was checked at hospital & told the bump was thankfully very minor and he had no other injuries. I got a massive blow to the hip, back & bum . My hip's never been the same since... still haunts me.
14/ Have you ever had your hormones checked Prior to being diagnosed? Only thyroid function tests, TSH levels & pituitary function.
15/ Before you were diagnosed, what medications were you on? Levothyroxine, Cocodamol, Voltarol, Iron tablets, Citalopram, Salbutamol
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed? Regularly as a child for recurrent ear infections, but not as an adult.
A couple other questions that quickly come to mind:
1) Have you ever been on birth control? For how long? What kind? Yes, for only about 4 years, over 20 years ago. Can't remember what.
2) If you have children, did you breastfeed? For how long? Bottlefed only.
3) Do you have dense breast tissue? No, but cystic lumpiness
4) Have you tested positive for BRCA1/2? Not yet tested
IDC, Stage1, 17mm - clear nodes & margins, Grade3, 3neg, NED ! BC post-Hodgkin's rads to mantle field, family history of BC & OC
2/ Where were your born and where have you lived Pennsylvania
3/ What is the specific name of your type of cancer Other than it being
triple negative IDC
4/ What is your blood type O-
5/ Are you a drinker or a smoker I quit smoking 1 month ago (pack a day) drink 2-4 glasses of red wine a week
6/ Has anyone else in your family had Any kind of cancer Maternal grandmother IDC (12 year survivor now) ER PR +, maternal aunt DCIS (20 year survivor now) maternal great grandfather don't know specifics, all had double masectomies
7/ How many pregnancies have you had 4---2 live births
8/ What childhood diseases have you had : Mumps, Measles, Chicken Pox Measles and Chicken Pox
9/ Did you have any symptons of your breast cancer No
10/ How was your cancer first discovered I discovered my lump
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur
12/ How often did you have mammograms Before you were diagnosed 1 year almost to the day of finding the lump
13/ Have you ever had a traumatic blow to your body and where was it yes but cant remember them
14/ Have you ever had your hormones checked Prior to being diagnosed No
15/ Before you were diagnosed, what medications were you on Prempro 5 years ago, none in the last 4 years
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed No
Etc.
Diagnosed 6/12/07 IDC Stage II, grade 3, trip negative, 7 negative nodes, 8 rounds of chemo 4xA/C done, 4x Taxol, almost done with chemo, then onto 35 rads
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