Her 2 Positive

AnnaB · October 2003

I was diagnosed with stage 2 BC in November, 2002. Completed dose dense chemo and radiation. Had 2 positive lymph nodes, ER positive and Her 2 Neu VERY positive. Now on Tamoxifen. And now that I'm now approaching my one year anniversary, I'm obsessing about my HER 2 status. My onc. has told me that the chemo worked to kill the HER 2 genes and doing dose dense worked even harder to do that. Anyone else out there who was HER 2 positive with more years of survivorship behind them? Just want to hear from someone else who is in the same boat!

chemoqueen1 · October 2003

I was Her2+ also. I just finished chemo on July 25th but am in a study that uses Herceptin. Hercpetin was used on women who already had spread and were Her2+ and had very good results. This study is trying it on women before it spreads, it is hoped that the Herceptin will prevent a re-occurance. Here is some information about Herceptin as well as information about another drug called Letrozole that can be used after Tamoxifen treatments are done. Hope this Helps.
http://www.bcirg.org/Internet/Studies/BCIRG+006.htm

http://www.gene.com/gene/pipeline/trials/herceptin/bcirg006/index.jsp

Breast cancer patients who follow up tamoxifen treatment with letrozole, an estrogen suppressor, cut risk of recurrence by nearly half, according to a study published online Thursday by the New England Journal of Medicine. THE STUDY involving more than 5,000 women with the most common form of breast cancer was suspended halfway through its planned five-year timespan because of the surprisingly strong results. The journal also moved up publication of the study, which will appear in the Nov. 6 issue, because of the importance of the findings.
Cutting the study off early prevented more substantive longterm findings but gave all its participants the option of immediately starting letrozole treatment, according to the journal article and two accompanying editorials. Other breast cancer patients also could start on letrozole when they finish tamoxifen treatment.
It is likely that in the coming months there will be much debate over whether the data and safety monitoring committee made the best decision in halting the study, said one of the editorials, titled Letrozole after Tamoxifen for Breast Cancer - What is the Price of Success? by Dr. Norman Wolmark.
At a minimum, suitable patients must be apprised of these important observations and must be given the opportunity to receive letrozole, with an understanding of the limitations of the data, it concluded.

The study found that women with estrogen-sensitive breast cancer who had completed five years of tamoxifen treatment and then took letrozole were about 40 percent less likely to have the cancer return or get a new tumor in the other breast than those who received a dummy pill after tamoxifen.
The estimated magnitude of the benefits ... was substantially greater than expected, Wolmark wrote.
Estrogen fuels the growth of about half of all breast cancers, especially those in older women. Tamoxifen, the top hormonal treatment for estrogen-fueled tumors, is given to almost all such U.S. patients after surgery to help prevent breast tumors from returning.

blossomtime · October 2003

I was diagnosed in june 2002 and completed chemo in Jan 2003 and radiation in March. I had 6 positive nodes, er/pr neg and her2 3+pos. I had 8 rounds chemo and 12 weeks herceptin. I was not in study but lucky to get herceptin. I am not candidate for tamoxifen since hormone receptor neg. That is good point for you, since considered to be poor prognostic factor to be hormone receptor neg. So far so good though and I keep positive outlook most of the time. Good luck to you. Sharon

rizzo15 · October 2003

blossomtime said:
I was diagnosed in june 2002 and completed chemo in Jan 2003 and radiation in March. I had 6 positive nodes, er/pr neg and her2 3+pos. I had 8 rounds chemo and 12 weeks herceptin. I was not in study but lucky to get herceptin. I am not candidate for tamoxifen since hormone receptor neg. That is good point for you, since considered to be poor prognostic factor to be hormone receptor neg. So far so good though and I keep positive outlook most of the time. Good luck to you. Sharon

Blossomtime. Could you tell me where you received herceptin? What clinic or medical group? I was told that herceptin was only available through a clinical trial unless the patient was already diagnosed as stage 4 breast cancer. Maybe they have recently changed the rules on this. I am also er/pr negative and her2 positive (7 positive nodes) and my doctor won't authorize herceptin for me yet.

hummingbyrd · October 2003

AnnaB, I'm a HER2 + diagnosed June 2000, and I am on Herceptin.
Chemoqueen (gotta love that name) had an exceptional answer!
Rizzo, you have a great question.
I asked my doc for herceptin after chemo and was told 'not indicated as a preventative medication'.
WELL! Glory be, I got to have what I want I guess cause sure enough 5 months after chemo we found a bone met....so I was put on herceptin.....that was August 2001. YES! By the grace of God I'm a 3 year survivor, thank You Lord!
I don't understand why they aren't using herceptin
for prevention.
"HEL-LOOOOO? Come on docs...let's shut the barn door BEFORE the horses get out!"
I'm just thankful it is available.
Hope this helps some. God bless.
hummingbyrd

Row*, row*, row* your boat gently down the stream,

LOL just teasing! I'm a few boats ahead, and probably a few bricks short a load non-the-less...

merrilly, merrilly, merrilly life is but a dream!

(((((HUGS)))))

hummb +------- Conquering Cancer Through Christ

blossomtime · October 2003

rizzo15 said:
Blossomtime. Could you tell me where you received herceptin? What clinic or medical group? I was told that herceptin was only available through a clinical trial unless the patient was already diagnosed as stage 4 breast cancer. Maybe they have recently changed the rules on this. I am also er/pr negative and her2 positive (7 positive nodes) and my doctor won't authorize herceptin for me yet.

Rizzo, I live in Texas. When I was first diagnosed my doctor recommended herceptin and I made up my mind that is what I wanted. I have several poor prognostic factor, ie. tumor size, er/pr neg, # positive nodes and her 2 pos. I went for 2nd opinion at MD Anderson and it was recommended also. Noone ever told me there was an issue about only give with stage IV breast cancer and mine was IIB. I came back to my home town and proceeded with recommended treatment. It was only after I heard of other women taking for as long as a yr that I started asking questions about maybe I should too. That is when I learned that it is mostly given in metastatic cases. When I went back to MD Anderson in July they asked if my insurance paid for it and I said yes. He said I was lucky. I dont see the big deal, if it is supposed to be directed at her 2 pos people then do it and do it at the beginning and hopefully prevent it from progressing on to stage IV. That doesnt make any sense to have something to help and withhold it until it gets worse. Why put a person thru that. I dont know what to tell you to do. It seemed so easy, get it prescribed, go to day surgery and done. Good luck. sharon

inkblot · October 2003

Hello AnnaB:

I'm a Her/2neu survivor. Two years, if counting from completion of treatments. Over two and a half years if counting from dx.

I was dx'd 02/01. Lumpectomy, sentinel node dissection. Hormone neg. Her/2neu 3+, pre menopausal at dx..

Three nodes were removed at surgery. Testing revealed only one node to have a few microcells.
(they actually counted them and there were 7)
Isn't 7 supposed to be a lucky number or something? lol Most docs consider this "not" to be spread. Read on though...

I got 3 opinions. Sloan Kettering, Fox Chase and Cancer Institute of New Jersey. My surgeon was the Director of a breast care center at a large hosp. in New Jersey (not affiliated with Cancer Inst. of NJ) and his opinion also was that A/C chemo, with rads, was aggressive in my case. I was Stage I and tumor was small at barely 1cm.

Of all the opinions, only the team at Fox Chase recommended that I follow the A/C/rads treatment with Herceptin. They had a trial at the time. They said that my "qualifying" point was the few microcells in the one node. Those few cells actually placed me on the fence, scientifically speaking. The team at Fox could choose to call it "over the fence", in order to put me into the trial. (I'd have been taking it for 52 weeks) Beyond that, they couldn't justify the recommendation. All the other docs strongly disagreed and I had to question their validity of offering it to me, considering the then current trial criteria.

I researched, studied and talked with various docs about Herceptin. Four of us were researching for almost 2 weeks. In the end, I couldn't justify placing myself at additional risk for early bc. So, I declined. I have no regrets about that.

If you go to some of the websites which detail the nationally available trials, you should find the qualifying criteria. I haven't read anything on Herceptin in quite some time and don't know if the general criteria has changed. I think it must have had some very flexible parameters, even two years ago.

I completed all treatment, exactly two years ago today and I feel great and have good check ups and mammo's. No complaints.

Regarding Herceptin's availability in early breast cancer and about trials in general:

Say I had chosen to be in that trial. Say I didn't have side effects which would have caused me to be taken out of it. Say I had no cardiotoxicity to date. Say I did just as well as I'm doing now. To what would we assign my doing so well? In the trial records, I'd be counted as someone whose survival was attributed to Herceptin. Whether 2, years, 5 years, or 20 years later, that would not change. Meanwhile, women who perhaps better met the qualifications,
women whose cancer was more advanced, also taking Herceptin in the same trial, may experience mets and/or lose their battle. That would bring the effectiveness of the drug down, while my excellent response would serve to better balance the results of the trial. Do you see the point? Just as some renowned hospitals have a tremendous reputation for, say, heart surgeries and/or organ transplants, investigative reports have revealed that they sometimes choose candidates who's chances of surviving very well, at the outset, will almost certainly tip the scales and up their touted "success" and/or "effectiveness" rates.
Things in the world of trials are not always what they seem.

There was a piece on Prime Time, last night, which revealed some unethical practices at several Chicago hospitals regarding liver transplants. That the famed Northwestern University Hospitals' name was mentioned, really got my attention! According to the report, people were being bumped up on the list who were far more well, while other's were dying while waiting. It was a whole big, detailed thing, with a respected physician actually losing his job when he discovered the goings on and blew the whistle. A federal investigation is ongoing. There are many millions (even billions) of dollars in research and cutting edge technology and it's wonderful what can be done today in saving lives and preserving quality of life. Still, it's a fact of life that some will manipulate the system to their advantage. Why? More research funds flow in. Reputation building. Even individual career building. All too often, serious flaws are found in protocols which can render trials/experimental procedures very difficult to accurately interpret. Record keeping can be incomplete, initial histories may be incomplete and even follow up procedures are allowed to derail. This happens at some of the top research facilities and we're left shaking our heads and wondering how it could happen.

That my bc was early stage just didn't warrant a trial of that nature. I know women who've had everything from regional recurrence to distant mets, at seven years, ten years, even 15 years and know other's who've survived over 20 years with an initial poor prognosis.

***With a more advanced stage at dx, recurrence or a met, then we certainly have to consider trials with a different thought process, for the obvious reasons.***

None of us wants to become a guinea pig or pawn on the wheel of trials, unnecessarily. When trials are our only option, then thank goodness for them.

Why is Herceptin still undergoing so many extensive trials though? If it is applicable in early stage bc, then why has it not been approved and given to everyone, period? Clearly, the trials have not yet answered these and many other questions.

We don't want to allow panick to push us into to something which could be dangerous for us or unnecessary, when our stage of cancer doesn't warrant it. Additional expert opinions are absolutely essential in trying to make such decisions. Chemo drugs are extremely potent and toxic. Otherwise they couldn't do what they do to cancer. Ideally, we want cancer killing drugs which do the least harm to our otherwise healthy selves. If we have a recurrence/met, no one can tell us why it happened. If we don't, no one can tell us why we didn't. Science can't answer this, yet we want to know that we've taken every reasonable step to survive, considering our particular stage of cancer. Is it possible to over treat early stage cancers? Is there a drug resistance-building thresh hold? I'd suppose that this is why doctor's treat the same stages of cancer with different and varying drugs. It seems, AnnaB, as if you had very good care and treatment and here you are, a year later!

I just happen to be of a conservative mind set and unless I had more advanced cancer, I would never submit to any trial designed for more advanced cancer...didn't when I had the choice. A risk to benefit question.

Hoping you can relax and find ways to feel more confident about your initial treatment decisions. You deserve that, you know.

Best wishes for continued good health and congrats on your upcoming 1 year anniversary!
Make it special.

Love, light and laughter,
Ink

hummingbyrd · October 2003

inkblot said:
Hello AnnaB:

I'm a Her/2neu survivor. Two years, if counting from completion of treatments. Over two and a half years if counting from dx.

I was dx'd 02/01. Lumpectomy, sentinel node dissection. Hormone neg. Her/2neu 3+, pre menopausal at dx..

Three nodes were removed at surgery. Testing revealed only one node to have a few microcells.
(they actually counted them and there were 7)
Isn't 7 supposed to be a lucky number or something? lol Most docs consider this "not" to be spread. Read on though...

I got 3 opinions. Sloan Kettering, Fox Chase and Cancer Institute of New Jersey. My surgeon was the Director of a breast care center at a large hosp. in New Jersey (not affiliated with Cancer Inst. of NJ) and his opinion also was that A/C chemo, with rads, was aggressive in my case. I was Stage I and tumor was small at barely 1cm.

Of all the opinions, only the team at Fox Chase recommended that I follow the A/C/rads treatment with Herceptin. They had a trial at the time. They said that my "qualifying" point was the few microcells in the one node. Those few cells actually placed me on the fence, scientifically speaking. The team at Fox could choose to call it "over the fence", in order to put me into the trial. (I'd have been taking it for 52 weeks) Beyond that, they couldn't justify the recommendation. All the other docs strongly disagreed and I had to question their validity of offering it to me, considering the then current trial criteria.

I researched, studied and talked with various docs about Herceptin. Four of us were researching for almost 2 weeks. In the end, I couldn't justify placing myself at additional risk for early bc. So, I declined. I have no regrets about that.

If you go to some of the websites which detail the nationally available trials, you should find the qualifying criteria. I haven't read anything on Herceptin in quite some time and don't know if the general criteria has changed. I think it must have had some very flexible parameters, even two years ago.

I completed all treatment, exactly two years ago today and I feel great and have good check ups and mammo's. No complaints.

Regarding Herceptin's availability in early breast cancer and about trials in general:

Say I had chosen to be in that trial. Say I didn't have side effects which would have caused me to be taken out of it. Say I had no cardiotoxicity to date. Say I did just as well as I'm doing now. To what would we assign my doing so well? In the trial records, I'd be counted as someone whose survival was attributed to Herceptin. Whether 2, years, 5 years, or 20 years later, that would not change. Meanwhile, women who perhaps better met the qualifications,
women whose cancer was more advanced, also taking Herceptin in the same trial, may experience mets and/or lose their battle. That would bring the effectiveness of the drug down, while my excellent response would serve to better balance the results of the trial. Do you see the point? Just as some renowned hospitals have a tremendous reputation for, say, heart surgeries and/or organ transplants, investigative reports have revealed that they sometimes choose candidates who's chances of surviving very well, at the outset, will almost certainly tip the scales and up their touted "success" and/or "effectiveness" rates.
Things in the world of trials are not always what they seem.

There was a piece on Prime Time, last night, which revealed some unethical practices at several Chicago hospitals regarding liver transplants. That the famed Northwestern University Hospitals' name was mentioned, really got my attention! According to the report, people were being bumped up on the list who were far more well, while other's were dying while waiting. It was a whole big, detailed thing, with a respected physician actually losing his job when he discovered the goings on and blew the whistle. A federal investigation is ongoing. There are many millions (even billions) of dollars in research and cutting edge technology and it's wonderful what can be done today in saving lives and preserving quality of life. Still, it's a fact of life that some will manipulate the system to their advantage. Why? More research funds flow in. Reputation building. Even individual career building. All too often, serious flaws are found in protocols which can render trials/experimental procedures very difficult to accurately interpret. Record keeping can be incomplete, initial histories may be incomplete and even follow up procedures are allowed to derail. This happens at some of the top research facilities and we're left shaking our heads and wondering how it could happen.

That my bc was early stage just didn't warrant a trial of that nature. I know women who've had everything from regional recurrence to distant mets, at seven years, ten years, even 15 years and know other's who've survived over 20 years with an initial poor prognosis.

***With a more advanced stage at dx, recurrence or a met, then we certainly have to consider trials with a different thought process, for the obvious reasons.***

None of us wants to become a guinea pig or pawn on the wheel of trials, unnecessarily. When trials are our only option, then thank goodness for them.

Why is Herceptin still undergoing so many extensive trials though? If it is applicable in early stage bc, then why has it not been approved and given to everyone, period? Clearly, the trials have not yet answered these and many other questions.

We don't want to allow panick to push us into to something which could be dangerous for us or unnecessary, when our stage of cancer doesn't warrant it. Additional expert opinions are absolutely essential in trying to make such decisions. Chemo drugs are extremely potent and toxic. Otherwise they couldn't do what they do to cancer. Ideally, we want cancer killing drugs which do the least harm to our otherwise healthy selves. If we have a recurrence/met, no one can tell us why it happened. If we don't, no one can tell us why we didn't. Science can't answer this, yet we want to know that we've taken every reasonable step to survive, considering our particular stage of cancer. Is it possible to over treat early stage cancers? Is there a drug resistance-building thresh hold? I'd suppose that this is why doctor's treat the same stages of cancer with different and varying drugs. It seems, AnnaB, as if you had very good care and treatment and here you are, a year later!

I just happen to be of a conservative mind set and unless I had more advanced cancer, I would never submit to any trial designed for more advanced cancer...didn't when I had the choice. A risk to benefit question.

Hoping you can relax and find ways to feel more confident about your initial treatment decisions. You deserve that, you know.

Best wishes for continued good health and congrats on your upcoming 1 year anniversary!
Make it special.

Love, light and laughter,
Ink

Good point Ink. Cancer is big business, studies and trials can be manipulated anyway they want, and effective drugs can be nixed at any stage of the game.
Unfortunatly.....it ain't physics that makes the world go 'round, it's the almighty dollar.
I do want to clarify one thing for AnnaB...I'm sorry I neglected to include this...my tumor was 4 cm with 13 out of 27+ lymph nodes. I knew in my heart, when I quit chemo, it was going to metasasis. Didn't think about mets till last chemo and then had a panic attack. Last chemo was April 2001, met was actually present on x-ray May 2001, they just missed it. Called it a bone cyst they told me later. Based on my tumor, nodes and panic attack and what I had read about herceptin, brought me to the conclusion I needed to be treated with it. So, lots of things to consider! Bottom line...you are your own best patient advocate and knowledge is a powerful thing.
Not as powerful as prayer, but still powerful. :-)
God bless. hummb

AnnaB · October 2003

inkblot said:
Hello AnnaB:

I'm a Her/2neu survivor. Two years, if counting from completion of treatments. Over two and a half years if counting from dx.

I was dx'd 02/01. Lumpectomy, sentinel node dissection. Hormone neg. Her/2neu 3+, pre menopausal at dx..

Three nodes were removed at surgery. Testing revealed only one node to have a few microcells.
(they actually counted them and there were 7)
Isn't 7 supposed to be a lucky number or something? lol Most docs consider this "not" to be spread. Read on though...

I got 3 opinions. Sloan Kettering, Fox Chase and Cancer Institute of New Jersey. My surgeon was the Director of a breast care center at a large hosp. in New Jersey (not affiliated with Cancer Inst. of NJ) and his opinion also was that A/C chemo, with rads, was aggressive in my case. I was Stage I and tumor was small at barely 1cm.

Of all the opinions, only the team at Fox Chase recommended that I follow the A/C/rads treatment with Herceptin. They had a trial at the time. They said that my "qualifying" point was the few microcells in the one node. Those few cells actually placed me on the fence, scientifically speaking. The team at Fox could choose to call it "over the fence", in order to put me into the trial. (I'd have been taking it for 52 weeks) Beyond that, they couldn't justify the recommendation. All the other docs strongly disagreed and I had to question their validity of offering it to me, considering the then current trial criteria.

I researched, studied and talked with various docs about Herceptin. Four of us were researching for almost 2 weeks. In the end, I couldn't justify placing myself at additional risk for early bc. So, I declined. I have no regrets about that.

If you go to some of the websites which detail the nationally available trials, you should find the qualifying criteria. I haven't read anything on Herceptin in quite some time and don't know if the general criteria has changed. I think it must have had some very flexible parameters, even two years ago.

I completed all treatment, exactly two years ago today and I feel great and have good check ups and mammo's. No complaints.

Regarding Herceptin's availability in early breast cancer and about trials in general:

Say I had chosen to be in that trial. Say I didn't have side effects which would have caused me to be taken out of it. Say I had no cardiotoxicity to date. Say I did just as well as I'm doing now. To what would we assign my doing so well? In the trial records, I'd be counted as someone whose survival was attributed to Herceptin. Whether 2, years, 5 years, or 20 years later, that would not change. Meanwhile, women who perhaps better met the qualifications,
women whose cancer was more advanced, also taking Herceptin in the same trial, may experience mets and/or lose their battle. That would bring the effectiveness of the drug down, while my excellent response would serve to better balance the results of the trial. Do you see the point? Just as some renowned hospitals have a tremendous reputation for, say, heart surgeries and/or organ transplants, investigative reports have revealed that they sometimes choose candidates who's chances of surviving very well, at the outset, will almost certainly tip the scales and up their touted "success" and/or "effectiveness" rates.
Things in the world of trials are not always what they seem.

There was a piece on Prime Time, last night, which revealed some unethical practices at several Chicago hospitals regarding liver transplants. That the famed Northwestern University Hospitals' name was mentioned, really got my attention! According to the report, people were being bumped up on the list who were far more well, while other's were dying while waiting. It was a whole big, detailed thing, with a respected physician actually losing his job when he discovered the goings on and blew the whistle. A federal investigation is ongoing. There are many millions (even billions) of dollars in research and cutting edge technology and it's wonderful what can be done today in saving lives and preserving quality of life. Still, it's a fact of life that some will manipulate the system to their advantage. Why? More research funds flow in. Reputation building. Even individual career building. All too often, serious flaws are found in protocols which can render trials/experimental procedures very difficult to accurately interpret. Record keeping can be incomplete, initial histories may be incomplete and even follow up procedures are allowed to derail. This happens at some of the top research facilities and we're left shaking our heads and wondering how it could happen.

That my bc was early stage just didn't warrant a trial of that nature. I know women who've had everything from regional recurrence to distant mets, at seven years, ten years, even 15 years and know other's who've survived over 20 years with an initial poor prognosis.

***With a more advanced stage at dx, recurrence or a met, then we certainly have to consider trials with a different thought process, for the obvious reasons.***

None of us wants to become a guinea pig or pawn on the wheel of trials, unnecessarily. When trials are our only option, then thank goodness for them.

Why is Herceptin still undergoing so many extensive trials though? If it is applicable in early stage bc, then why has it not been approved and given to everyone, period? Clearly, the trials have not yet answered these and many other questions.

We don't want to allow panick to push us into to something which could be dangerous for us or unnecessary, when our stage of cancer doesn't warrant it. Additional expert opinions are absolutely essential in trying to make such decisions. Chemo drugs are extremely potent and toxic. Otherwise they couldn't do what they do to cancer. Ideally, we want cancer killing drugs which do the least harm to our otherwise healthy selves. If we have a recurrence/met, no one can tell us why it happened. If we don't, no one can tell us why we didn't. Science can't answer this, yet we want to know that we've taken every reasonable step to survive, considering our particular stage of cancer. Is it possible to over treat early stage cancers? Is there a drug resistance-building thresh hold? I'd suppose that this is why doctor's treat the same stages of cancer with different and varying drugs. It seems, AnnaB, as if you had very good care and treatment and here you are, a year later!

I just happen to be of a conservative mind set and unless I had more advanced cancer, I would never submit to any trial designed for more advanced cancer...didn't when I had the choice. A risk to benefit question.

Hoping you can relax and find ways to feel more confident about your initial treatment decisions. You deserve that, you know.

Best wishes for continued good health and congrats on your upcoming 1 year anniversary!
Make it special.

Love, light and laughter,
Ink

Dear Ink,
Thank you so much for your thoughtful response. I was made aware of the Herceptin clinical trial at the onset of my chemo. I opted to not participate, based on some of the reasons you mention, namely cardiac problems. I also wanted to do dose dense and that was not an option with the clinical trial. I check with my oncologist on a regular basis to see if there are any notable results with the clinical trial. Certainly, if the Herceptin works, I want it! Anyway, he tells me that if the clinical trial were proving to be highly successful in early cancers, it would be stopped and all Her 2 Neu patients would be able to get it. Fortunately, I received treatments at a cancer center and I do feel like I'm well informed. I have no regrets on any of my treatment decisions and feel like I have done everything I could possibly do. Thanks to all for your feedback. In this first year, I have certainly learned a lot. And, the most wonderful part is the support of complete strangers who share the bond of cancer survivorship.

blossomtime · October 2003

I agree with alot of what Inkblot has to say, drugs are big business and I am sure that at times the scales can be manipulated to make things appear more favorable. But in my case in addition to the things I listed earlier, my tumor was large at 4.5 cm with nuclear grade III. My doctor had nothing to gain by recommending I consider this drug as part of treatment. For me I am grateful to have received it and would do it again in a heartbeat. But we are all different inside and out with different factors to consider. So do what is right for you and try not to look back. Sharon

inkblot · October 2003

blossomtime said:
I agree with alot of what Inkblot has to say, drugs are big business and I am sure that at times the scales can be manipulated to make things appear more favorable. But in my case in addition to the things I listed earlier, my tumor was large at 4.5 cm with nuclear grade III. My doctor had nothing to gain by recommending I consider this drug as part of treatment. For me I am grateful to have received it and would do it again in a heartbeat. But we are all different inside and out with different factors to consider. So do what is right for you and try not to look back. Sharon

Sharon:

I agree completely! It's so important to make our best decisions and be confident about having done so.

It's really an arduous task, at the outset of our dx's, to get organized and get all the information
we need to proceed rationally.

Another point you mentioned is trust in your physician. That's extremely important. In your case, with a larger, higher grade tumor, you
had much to gain. As did Humm with her met. A time to just be thankful that it's available. This is proper procedure. Above board, straight forward with the patient being the only person with something to gain.

Love, light and laughter,
Ink

jlc · October 2003

Hi everyone I was diagnosed with stage 2 in Jan 03 had a mast. I was also on a trial I had the chemo. AC,Taxall,Hercpt. I had the reg.4 doses of AC. had ot be taken off the taxall early because it cause to much numbing in my fingers and feet,so I had 10 weeks of this along with the hercpt. Then I just had the Hercpt. I had 3weeks of radation. I was suppose to have the Hercpt for a full year and 7 weeks of radation. But I have stopped everything. Due to finances. Already lost my house. This is what happened to me I went for my check up in Oct.02 the Doc found a lump so I went to have a Mamo. done and also had a ultrasound done they told me that was just a cyst not to worry about it. 2 months later I noticed a dimple in the same area. Called the doc. back ask if this was normal since I knew there was a cyst there. She told me to come in and have it looked at I then was sent to have another ultrasound done that same day. The doc. who did the ultrasound this time said that I would need to have a bios. done. Later that evening my Doc. called me and said I needed to see the surg. the next day. So I went to see him he old me that I had to have a mast. because he said that it was proably 4cm. I asked him about it being a cyst. He said this could have been behind the cyst and not noticeable at he time I was 41yrs old and the breast tissues are densed he said. Then after my surgery I found out I had 5 nodes positive and I had the her2neu postive an Er postive.
I am not sure if I made the right choice to quit but I need my energy back my employers had modifed my job duties because of my treatments. I need to work full time now. I have gone into Premanopause, But have been having real back cramps and some spotting. Went to the doc. 2 days ago. She did a ultrasound said that I had a real thick linnig in my uterus so I need to have a biospy done. that will happen next week.
Is this too soon for a reacurance? Did I make the wrong decision? AnnaB I know you can beat this. Keep in touch.

marisabilbo · January 2004

jlc said:
Hi everyone I was diagnosed with stage 2 in Jan 03 had a mast. I was also on a trial I had the chemo. AC,Taxall,Hercpt. I had the reg.4 doses of AC. had ot be taken off the taxall early because it cause to much numbing in my fingers and feet,so I had 10 weeks of this along with the hercpt. Then I just had the Hercpt. I had 3weeks of radation. I was suppose to have the Hercpt for a full year and 7 weeks of radation. But I have stopped everything. Due to finances. Already lost my house. This is what happened to me I went for my check up in Oct.02 the Doc found a lump so I went to have a Mamo. done and also had a ultrasound done they told me that was just a cyst not to worry about it. 2 months later I noticed a dimple in the same area. Called the doc. back ask if this was normal since I knew there was a cyst there. She told me to come in and have it looked at I then was sent to have another ultrasound done that same day. The doc. who did the ultrasound this time said that I would need to have a bios. done. Later that evening my Doc. called me and said I needed to see the surg. the next day. So I went to see him he old me that I had to have a mast. because he said that it was proably 4cm. I asked him about it being a cyst. He said this could have been behind the cyst and not noticeable at he time I was 41yrs old and the breast tissues are densed he said. Then after my surgery I found out I had 5 nodes positive and I had the her2neu postive an Er postive.
I am not sure if I made the right choice to quit but I need my energy back my employers had modifed my job duties because of my treatments. I need to work full time now. I have gone into Premanopause, But have been having real back cramps and some spotting. Went to the doc. 2 days ago. She did a ultrasound said that I had a real thick linnig in my uterus so I need to have a biospy done. that will happen next week.
Is this too soon for a reacurance? Did I make the wrong decision? AnnaB I know you can beat this. Keep in touch.

You should check whith a social service every oncologist or hospital has one some of them know better than others . I

georgia there is a program that women under 65 whit no insurance are cover by medicaid so have the treatments you need radiation is good . Sometimes they aloud you to pay small amounts every month . Trust in the Lord He will make it possible .Accept any help they offer you . Spmetimes is not easy to accept help because we are use to help others now we need to let them help us another time they will have to be helped. That is part of life. Sorry about your house and about what you are going through. I pray for all of us . Love Marisa

woddy · August 2004

inkblot said:
Hello AnnaB:

I'm a Her/2neu survivor. Two years, if counting from completion of treatments. Over two and a half years if counting from dx.

I was dx'd 02/01. Lumpectomy, sentinel node dissection. Hormone neg. Her/2neu 3+, pre menopausal at dx..

Three nodes were removed at surgery. Testing revealed only one node to have a few microcells.
(they actually counted them and there were 7)
Isn't 7 supposed to be a lucky number or something? lol Most docs consider this "not" to be spread. Read on though...

I got 3 opinions. Sloan Kettering, Fox Chase and Cancer Institute of New Jersey. My surgeon was the Director of a breast care center at a large hosp. in New Jersey (not affiliated with Cancer Inst. of NJ) and his opinion also was that A/C chemo, with rads, was aggressive in my case. I was Stage I and tumor was small at barely 1cm.

Of all the opinions, only the team at Fox Chase recommended that I follow the A/C/rads treatment with Herceptin. They had a trial at the time. They said that my "qualifying" point was the few microcells in the one node. Those few cells actually placed me on the fence, scientifically speaking. The team at Fox could choose to call it "over the fence", in order to put me into the trial. (I'd have been taking it for 52 weeks) Beyond that, they couldn't justify the recommendation. All the other docs strongly disagreed and I had to question their validity of offering it to me, considering the then current trial criteria.

I researched, studied and talked with various docs about Herceptin. Four of us were researching for almost 2 weeks. In the end, I couldn't justify placing myself at additional risk for early bc. So, I declined. I have no regrets about that.

If you go to some of the websites which detail the nationally available trials, you should find the qualifying criteria. I haven't read anything on Herceptin in quite some time and don't know if the general criteria has changed. I think it must have had some very flexible parameters, even two years ago.

I completed all treatment, exactly two years ago today and I feel great and have good check ups and mammo's. No complaints.

Regarding Herceptin's availability in early breast cancer and about trials in general:

Say I had chosen to be in that trial. Say I didn't have side effects which would have caused me to be taken out of it. Say I had no cardiotoxicity to date. Say I did just as well as I'm doing now. To what would we assign my doing so well? In the trial records, I'd be counted as someone whose survival was attributed to Herceptin. Whether 2, years, 5 years, or 20 years later, that would not change. Meanwhile, women who perhaps better met the qualifications,
women whose cancer was more advanced, also taking Herceptin in the same trial, may experience mets and/or lose their battle. That would bring the effectiveness of the drug down, while my excellent response would serve to better balance the results of the trial. Do you see the point? Just as some renowned hospitals have a tremendous reputation for, say, heart surgeries and/or organ transplants, investigative reports have revealed that they sometimes choose candidates who's chances of surviving very well, at the outset, will almost certainly tip the scales and up their touted "success" and/or "effectiveness" rates.
Things in the world of trials are not always what they seem.

There was a piece on Prime Time, last night, which revealed some unethical practices at several Chicago hospitals regarding liver transplants. That the famed Northwestern University Hospitals' name was mentioned, really got my attention! According to the report, people were being bumped up on the list who were far more well, while other's were dying while waiting. It was a whole big, detailed thing, with a respected physician actually losing his job when he discovered the goings on and blew the whistle. A federal investigation is ongoing. There are many millions (even billions) of dollars in research and cutting edge technology and it's wonderful what can be done today in saving lives and preserving quality of life. Still, it's a fact of life that some will manipulate the system to their advantage. Why? More research funds flow in. Reputation building. Even individual career building. All too often, serious flaws are found in protocols which can render trials/experimental procedures very difficult to accurately interpret. Record keeping can be incomplete, initial histories may be incomplete and even follow up procedures are allowed to derail. This happens at some of the top research facilities and we're left shaking our heads and wondering how it could happen.

That my bc was early stage just didn't warrant a trial of that nature. I know women who've had everything from regional recurrence to distant mets, at seven years, ten years, even 15 years and know other's who've survived over 20 years with an initial poor prognosis.

***With a more advanced stage at dx, recurrence or a met, then we certainly have to consider trials with a different thought process, for the obvious reasons.***

None of us wants to become a guinea pig or pawn on the wheel of trials, unnecessarily. When trials are our only option, then thank goodness for them.

Why is Herceptin still undergoing so many extensive trials though? If it is applicable in early stage bc, then why has it not been approved and given to everyone, period? Clearly, the trials have not yet answered these and many other questions.

We don't want to allow panick to push us into to something which could be dangerous for us or unnecessary, when our stage of cancer doesn't warrant it. Additional expert opinions are absolutely essential in trying to make such decisions. Chemo drugs are extremely potent and toxic. Otherwise they couldn't do what they do to cancer. Ideally, we want cancer killing drugs which do the least harm to our otherwise healthy selves. If we have a recurrence/met, no one can tell us why it happened. If we don't, no one can tell us why we didn't. Science can't answer this, yet we want to know that we've taken every reasonable step to survive, considering our particular stage of cancer. Is it possible to over treat early stage cancers? Is there a drug resistance-building thresh hold? I'd suppose that this is why doctor's treat the same stages of cancer with different and varying drugs. It seems, AnnaB, as if you had very good care and treatment and here you are, a year later!

I just happen to be of a conservative mind set and unless I had more advanced cancer, I would never submit to any trial designed for more advanced cancer...didn't when I had the choice. A risk to benefit question.

Hoping you can relax and find ways to feel more confident about your initial treatment decisions. You deserve that, you know.

Best wishes for continued good health and congrats on your upcoming 1 year anniversary!
Make it special.

Love, light and laughter,
Ink

I hope you are still out there. My brother was "treated" at Sloan Kettering in a trial! He was a "tumor" Dr.had no ethics! I also had cancer and know what good treatment is. Would love to speake with you. Woddy

Sunny7 · October 2010

Hormone Receptor positive HER 2nd time around
Hello all, I would like to find someone with similar situation as mine. And for those wondering about Herceptin I wish I had received it. In 2001 I was diagnosed with stage 3 breast cancer HER positive. I took part in the clinical trials that are being discussed. The group I was in did not receive herceptin. I had many chemo treatments along with radition a lumpectomy and lympectomy, (9 positve lymp nodes) Cancer free for 8 years, this week I was rediagnosed with same cancer. Is there anyone who has experienced this type of breast cancer and did not receive herceptin? Also I am looking for oncologist that can help. Willing to travel as I live in small eastern Kentucky town. At the time of my treatment I lived in Massachusetts. If you have a oncologist that you are happy with and cancer center please let me know. I need to decide quickly on where I am going, or if you have suggestion I would love to hear from you. If I can give more information let me know. Glad to help and anxious for help, Sunny7

Sher43009 · October 2010

Sunny7 said:
Hormone Receptor positive HER 2nd time around
Hello all, I would like to find someone with similar situation as mine. And for those wondering about Herceptin I wish I had received it. In 2001 I was diagnosed with stage 3 breast cancer HER positive. I took part in the clinical trials that are being discussed. The group I was in did not receive herceptin. I had many chemo treatments along with radition a lumpectomy and lympectomy, (9 positve lymp nodes) Cancer free for 8 years, this week I was rediagnosed with same cancer. Is there anyone who has experienced this type of breast cancer and did not receive herceptin? Also I am looking for oncologist that can help. Willing to travel as I live in small eastern Kentucky town. At the time of my treatment I lived in Massachusetts. If you have a oncologist that you are happy with and cancer center please let me know. I need to decide quickly on where I am going, or if you have suggestion I would love to hear from you. If I can give more information let me know. Glad to help and anxious for help, Sunny7

FDA Approval
Herceptin has only been approved by the FDA for early bc since 2006. The drug company that "owns" herceptin is Genentech. You can go on their website to get the timeline of herceptin and the trial/approval dates.

A great movie to see is "Living Proof" with Harry Connick, Jr. about Dr. Dennis Slamon, the researcher that developed herceptin.

Sher

Megan M · October 2010

blossomtime said:
I was diagnosed in june 2002 and completed chemo in Jan 2003 and radiation in March. I had 6 positive nodes, er/pr neg and her2 3+pos. I had 8 rounds chemo and 12 weeks herceptin. I was not in study but lucky to get herceptin. I am not candidate for tamoxifen since hormone receptor neg. That is good point for you, since considered to be poor prognostic factor to be hormone receptor neg. So far so good though and I keep positive outlook most of the time. Good luck to you. Sharon

I am HER2 negative Anna,
I am HER2 negative Anna, but, just saying hi and it looks like you have gotten a lot of info from other sisters in pink that are HER2 positive.

Hugs to you,

Megan

pscheer · October 2010

Sunny7 said:
Hormone Receptor positive HER 2nd time around
Hello all, I would like to find someone with similar situation as mine. And for those wondering about Herceptin I wish I had received it. In 2001 I was diagnosed with stage 3 breast cancer HER positive. I took part in the clinical trials that are being discussed. The group I was in did not receive herceptin. I had many chemo treatments along with radition a lumpectomy and lympectomy, (9 positve lymp nodes) Cancer free for 8 years, this week I was rediagnosed with same cancer. Is there anyone who has experienced this type of breast cancer and did not receive herceptin? Also I am looking for oncologist that can help. Willing to travel as I live in small eastern Kentucky town. At the time of my treatment I lived in Massachusetts. If you have a oncologist that you are happy with and cancer center please let me know. I need to decide quickly on where I am going, or if you have suggestion I would love to hear from you. If I can give more information let me know. Glad to help and anxious for help, Sunny7

http://www.mdanderson.org/loc
http://www.mdanderson.org/locations/index.html

The link I provided is a large cancer center in Houston, TX. I go to the satelite clinic because it is much closer to my house than the Medical Center in Houston. The satelite clinic is listed in the locations of MD Anderson as "Bay Area". My onc is Dr. Kovitz. I have had almost one year of herceptin. Two infusions left and I have had no problems with it at all.

lauri67 · October 2010

Sunny7 said:
Hormone Receptor positive HER 2nd time around
Hello all, I would like to find someone with similar situation as mine. And for those wondering about Herceptin I wish I had received it. In 2001 I was diagnosed with stage 3 breast cancer HER positive. I took part in the clinical trials that are being discussed. The group I was in did not receive herceptin. I had many chemo treatments along with radition a lumpectomy and lympectomy, (9 positve lymp nodes) Cancer free for 8 years, this week I was rediagnosed with same cancer. Is there anyone who has experienced this type of breast cancer and did not receive herceptin? Also I am looking for oncologist that can help. Willing to travel as I live in small eastern Kentucky town. At the time of my treatment I lived in Massachusetts. If you have a oncologist that you are happy with and cancer center please let me know. I need to decide quickly on where I am going, or if you have suggestion I would love to hear from you. If I can give more information let me know. Glad to help and anxious for help, Sunny7

HER2 positive and Herceptin
Sunny-will you be getting herceptin this time around? I was diagnosed in june HER2, BRCA2 er/pr positive. Waiting for the pathology report from my lumpectomy and nodes I had last friday. They plan on chemo, herceptin, mastectomy w/reconstruction. I ask about future prognosis and they said with my treatment reoccurance is very low but....

lauri67 · October 2010

Sunny7 said:
Hormone Receptor positive HER 2nd time around
Hello all, I would like to find someone with similar situation as mine. And for those wondering about Herceptin I wish I had received it. In 2001 I was diagnosed with stage 3 breast cancer HER positive. I took part in the clinical trials that are being discussed. The group I was in did not receive herceptin. I had many chemo treatments along with radition a lumpectomy and lympectomy, (9 positve lymp nodes) Cancer free for 8 years, this week I was rediagnosed with same cancer. Is there anyone who has experienced this type of breast cancer and did not receive herceptin? Also I am looking for oncologist that can help. Willing to travel as I live in small eastern Kentucky town. At the time of my treatment I lived in Massachusetts. If you have a oncologist that you are happy with and cancer center please let me know. I need to decide quickly on where I am going, or if you have suggestion I would love to hear from you. If I can give more information let me know. Glad to help and anxious for help, Sunny7

HER2 positive and Herceptin
Sunny-will you be getting herceptin this time around? I was diagnosed in june HER2, BRCA2 er/pr positive. Waiting for the pathology report from my lumpectomy and nodes I had last friday. They plan on chemo, herceptin, mastectomy w/reconstruction. I ask about future prognosis and they said with my treatment reoccurance is very low but....

lauri67 · October 2010

Sunny7 said:
Hormone Receptor positive HER 2nd time around
Hello all, I would like to find someone with similar situation as mine. And for those wondering about Herceptin I wish I had received it. In 2001 I was diagnosed with stage 3 breast cancer HER positive. I took part in the clinical trials that are being discussed. The group I was in did not receive herceptin. I had many chemo treatments along with radition a lumpectomy and lympectomy, (9 positve lymp nodes) Cancer free for 8 years, this week I was rediagnosed with same cancer. Is there anyone who has experienced this type of breast cancer and did not receive herceptin? Also I am looking for oncologist that can help. Willing to travel as I live in small eastern Kentucky town. At the time of my treatment I lived in Massachusetts. If you have a oncologist that you are happy with and cancer center please let me know. I need to decide quickly on where I am going, or if you have suggestion I would love to hear from you. If I can give more information let me know. Glad to help and anxious for help, Sunny7

HER2 positive and Herceptin
Sunny-will you be getting herceptin this time around? I was diagnosed in june HER2, BRCA2 er/pr positive. Waiting for the pathology report from my lumpectomy and nodes I had last friday. They plan on chemo, herceptin, mastectomy w/reconstruction. I ask about future prognosis and they said with my treatment reoccurance is very low but....

Her 2 Positive

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