Herceptin
Comments
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Bumping this up...mariam_11_09 said:Hi Ilona,
You wouldn't be
Hi Ilona,
You wouldn't be getting Herceptin if you weren't Her2+ or borderline Her2. However your type of cancer is not Her2+. The type of cancer is defined by the organ it starts in. For example:
cancer in pancreas is pancreatic cancer
cancer in the colon is colon cancer
Cancer in the breast can be:
in the ducts
or in the lobules
or in the tissue in between
In the case of the ducts or the lobules it can be non-invasive (only in the duct (DCIS) or lobule (LCIS)) or invasive that is is invaded the tissue outside the lobule (ILC) or duct (IDC).
If it started in the duct it is ductal carcinoma, if it started in the lobule it is lobular carcinoma.
Being Her2+ and/or ER+ and/or PR+ is NOT A TYPE of breast cancer it is a 'characteristic' of the breast cancer you have. The doctor's need to know what the characteristic is in order to provide the best treatment.
It may seem that all you need to know is that you are Her2+ in order to understand that you need Herceptin or that you are ER+ to know that you will need tamoxifen (or something similar) for 5 years however most women want to know what 'type' of breast cancer they have, ie
Is your cancer in the
Ducts (IDC)
or
Lobules (ILC)
or
do you have
Inflammatry Breast Cancer (IBC).
Your doctor will know this information.
Lastly, pretty much the only time you have Herceptin for more than a year is when you are stage 4. Typically it is not needed for more than a year if you are stage 0 - 3.
Hope this clears up some of the confusion
Mariam
Mariam explained this very well....Iilona, you need to know the TYPE of breast cancer you have...
Hugs, Nancy0 -
Breast cancer HER2+mariam_11_09 said:Hi Ilona,
You wouldn't be
Hi Ilona,
You wouldn't be getting Herceptin if you weren't Her2+ or borderline Her2. However your type of cancer is not Her2+. The type of cancer is defined by the organ it starts in. For example:
cancer in pancreas is pancreatic cancer
cancer in the colon is colon cancer
Cancer in the breast can be:
in the ducts
or in the lobules
or in the tissue in between
In the case of the ducts or the lobules it can be non-invasive (only in the duct (DCIS) or lobule (LCIS)) or invasive that is is invaded the tissue outside the lobule (ILC) or duct (IDC).
If it started in the duct it is ductal carcinoma, if it started in the lobule it is lobular carcinoma.
Being Her2+ and/or ER+ and/or PR+ is NOT A TYPE of breast cancer it is a 'characteristic' of the breast cancer you have. The doctor's need to know what the characteristic is in order to provide the best treatment.
It may seem that all you need to know is that you are Her2+ in order to understand that you need Herceptin or that you are ER+ to know that you will need tamoxifen (or something similar) for 5 years however most women want to know what 'type' of breast cancer they have, ie
Is your cancer in the
Ducts (IDC)
or
Lobules (ILC)
or
do you have
Inflammatry Breast Cancer (IBC).
Your doctor will know this information.
Lastly, pretty much the only time you have Herceptin for more than a year is when you are stage 4. Typically it is not needed for more than a year if you are stage 0 - 3.
Hope this clears up some of the confusion
Mariam
Hi Miriam, I am impressed about the knowledge you have when it comes to cancer. I am sure my onco knows what cancer I have, I just never gave him the notion that I was interested to know for myself.
1908 I noticed that my left breast looked much different than my right one. I was always healthy like a "horse". I made an appointment to have a mammogram done, I didn't even had a dr to referre me. Anyway I was told it was cancer and I needed surgery, which I had done as soon as possible. The surgeon told me also that he had it all but I still should talk to an oncologist,which I did. The oncologist told me that the cancer I have is not hormonal but has to do with being fed by protein which means it is HER2+, a very aggressive cancer. The rest is history meaning I told the end of the story already once before.
I have my next herceptin coming up this Thursday and I will ask my onco all the questions I need to know. I am very thankfull for all the help from you my dear pink sisters. Even though I don't know the facts, my Dr does and I still believe that I am in good hands with him.
Love you all....Ilona0 -
Hi Ilona,Muschi said:Breast cancer HER2+
Hi Miriam, I am impressed about the knowledge you have when it comes to cancer. I am sure my onco knows what cancer I have, I just never gave him the notion that I was interested to know for myself.
1908 I noticed that my left breast looked much different than my right one. I was always healthy like a "horse". I made an appointment to have a mammogram done, I didn't even had a dr to referre me. Anyway I was told it was cancer and I needed surgery, which I had done as soon as possible. The surgeon told me also that he had it all but I still should talk to an oncologist,which I did. The oncologist told me that the cancer I have is not hormonal but has to do with being fed by protein which means it is HER2+, a very aggressive cancer. The rest is history meaning I told the end of the story already once before.
I have my next herceptin coming up this Thursday and I will ask my onco all the questions I need to know. I am very thankfull for all the help from you my dear pink sisters. Even though I don't know the facts, my Dr does and I still believe that I am in good hands with him.
Love you all....Ilona
At our clinic -
Hi Ilona,
At our clinic - Palo Alto Medical Foundation (PAMF), immediately following a Breast Cancer diagnosis you have an appointment with the 'Breast Educator' before seeing the Breast Surgeon, Oncologist and Radiation Oncologist. Her job is to explain all these things to you and make sure you understand what breast cancer is, your type and characteristics. It was enough information for me to understand and not too much to overwhelm. I was sharing what I had learned.
It is good that you can trust your doctor and it can also be beneficial to know a little more about your cancer. I also understand that too much information can be overwhelming particularly with something like this.
take care and I wish you well
Mariam0 -
Had my new Mammo, Sono andmariam_11_09 said:Hi Ilona,
At our clinic -
Hi Ilona,
At our clinic - Palo Alto Medical Foundation (PAMF), immediately following a Breast Cancer diagnosis you have an appointment with the 'Breast Educator' before seeing the Breast Surgeon, Oncologist and Radiation Oncologist. Her job is to explain all these things to you and make sure you understand what breast cancer is, your type and characteristics. It was enough information for me to understand and not too much to overwhelm. I was sharing what I had learned.
It is good that you can trust your doctor and it can also be beneficial to know a little more about your cancer. I also understand that too much information can be overwhelming particularly with something like this.
take care and I wish you well
Mariam
Had my new Mammo, Sono and needle biopsies on Thurs, and had pathology report the next morning. It was Inflammatory Breast Cancer I saw my Surgeon on Mon., my Radiologist on Wed. and Chemo Dr. on Thurs. Different types of BC have different protocol for treatment. For IBC - chemo is first because it does not form 'lumps' that can be gotten out until after chemo.
My CCI has a Breast Cancer Navigator (she's an LPN and fantastic) to help along the way. If she doesn't have the answer - she'll find it. She made a point of seeing me every time I had chemo just to check in and at least twice a week when on Rads.
We really do need to know more than just positive or negative ER/RP or HER2 tro make decisions with our Drs on what TX we have. In my case there was only one TX suggested if it worked before surgery. After surgery there were a couple of options - I chose the most aggressive one suggested as IBC is the most aggressive form of BC by the statistics.
Knowledge is power.
Susan0 -
Had my new Mammo, Sono andmariam_11_09 said:Hi Ilona,
At our clinic -
Hi Ilona,
At our clinic - Palo Alto Medical Foundation (PAMF), immediately following a Breast Cancer diagnosis you have an appointment with the 'Breast Educator' before seeing the Breast Surgeon, Oncologist and Radiation Oncologist. Her job is to explain all these things to you and make sure you understand what breast cancer is, your type and characteristics. It was enough information for me to understand and not too much to overwhelm. I was sharing what I had learned.
It is good that you can trust your doctor and it can also be beneficial to know a little more about your cancer. I also understand that too much information can be overwhelming particularly with something like this.
take care and I wish you well
Mariam
Had my new Mammo, Sono and needle biopsies on Thurs, and had pathology report the next morning. It was Inflammatory Breast Cancer I saw my Surgeon on Mon., my Radiologist on Wed. and Chemo Dr. on Thurs. Different types of BC have different protocol for treatment. For IBC - chemo is first because it does not form 'lumps' that can be gotten out until after chemo.
My CCI has a Breast Cancer Navigator (she's an LPN and fantastic) to help along the way. If she doesn't have the answer - she'll find it. She made a point of seeing me every time I had chemo just to check in and at least twice a week when on Rads.
We really do need to know more than just positive or negative ER/RP or HER2 tro make decisions with our Drs on what TX we have. In my case there was only one TX suggested if it worked before surgery. After surgery there were a couple of options - I chose the most aggressive one suggested as IBC is the most aggressive form of BC by the statistics.
Knowledge is power.
Susan0 -
Belief In Doctor's AbilityMuschi said:Breast cancer HER2+
Hi Miriam, I am impressed about the knowledge you have when it comes to cancer. I am sure my onco knows what cancer I have, I just never gave him the notion that I was interested to know for myself.
1908 I noticed that my left breast looked much different than my right one. I was always healthy like a "horse". I made an appointment to have a mammogram done, I didn't even had a dr to referre me. Anyway I was told it was cancer and I needed surgery, which I had done as soon as possible. The surgeon told me also that he had it all but I still should talk to an oncologist,which I did. The oncologist told me that the cancer I have is not hormonal but has to do with being fed by protein which means it is HER2+, a very aggressive cancer. The rest is history meaning I told the end of the story already once before.
I have my next herceptin coming up this Thursday and I will ask my onco all the questions I need to know. I am very thankfull for all the help from you my dear pink sisters. Even though I don't know the facts, my Dr does and I still believe that I am in good hands with him.
Love you all....Ilona
Hi again, llona,
When your stage IV, knowing how to treat you is the most important aspect. Your doctor knows your history as it all happened only a few years ago. The important part is that you are HER2NEU positive and being treated for this type of cancer with Herceptin. A great targeted drug. Where the cancer began at this point in time is not relevant.
My diagnose was in 1994 and though I know where my cancer began it is not important now. My new oncologist never mentions this information in the notes. What is important and was the reason I needed a new biopsy when cancer returned for the 3rd time in 2008. I am highly ER+, there is some PR+ and Her2 but, the numbers are to low to be relevant for my treatments. I am being treated for my ER+ cancer with hormonal therapy.
My best friend and I had the same thoracic surgeon that did our biopsies. She was a nurse and I inquired if she had copies of his notes. She told me "no, she believed in him and didn't want the notes". I on the other hand wanted all the notes. We were different and there isn't anything wrong with either way on this journey with breast cancer.
You believe in your doctors expertise in regards to your cancer and that is very important.
Wishing you successful treatments with Herceptin.
Best,
Doris0 -
Miriammariam_11_09 said:Hi Ilona,
At our clinic -
Hi Ilona,
At our clinic - Palo Alto Medical Foundation (PAMF), immediately following a Breast Cancer diagnosis you have an appointment with the 'Breast Educator' before seeing the Breast Surgeon, Oncologist and Radiation Oncologist. Her job is to explain all these things to you and make sure you understand what breast cancer is, your type and characteristics. It was enough information for me to understand and not too much to overwhelm. I was sharing what I had learned.
It is good that you can trust your doctor and it can also be beneficial to know a little more about your cancer. I also understand that too much information can be overwhelming particularly with something like this.
take care and I wish you well
Mariam
I did not mention the whole conversation I had with my surgion, but he explained the whole thing in details. At that time the cancer was stage I, only after I did the hostolic treatment (only because of my wish)it had spread to cancer stage IV
Ilona0 -
DorisSIROD said:Belief In Doctor's Ability
Hi again, llona,
When your stage IV, knowing how to treat you is the most important aspect. Your doctor knows your history as it all happened only a few years ago. The important part is that you are HER2NEU positive and being treated for this type of cancer with Herceptin. A great targeted drug. Where the cancer began at this point in time is not relevant.
My diagnose was in 1994 and though I know where my cancer began it is not important now. My new oncologist never mentions this information in the notes. What is important and was the reason I needed a new biopsy when cancer returned for the 3rd time in 2008. I am highly ER+, there is some PR+ and Her2 but, the numbers are to low to be relevant for my treatments. I am being treated for my ER+ cancer with hormonal therapy.
My best friend and I had the same thoracic surgeon that did our biopsies. She was a nurse and I inquired if she had copies of his notes. She told me "no, she believed in him and didn't want the notes". I on the other hand wanted all the notes. We were different and there isn't anything wrong with either way on this journey with breast cancer.
You believe in your doctors expertise in regards to your cancer and that is very important.
Wishing you successful treatments with Herceptin.
Best,
Doris
Thank you Doris, I think you really understand where I am coming from. My question to this forum was never about having a good Dr, my question was if somebody had Herceptin longer than one year. Who cares what the cancer is named after I just know that my onco is taking good care of me. I can talk to him and he listen to what I have to say. He is very patient and interested in my feelings and I think that is so very important. I did make research on other web sides and there are people who took Herceptin more than one year and are doing fine, which reassures me that I am on the right track.
Ilona0 -
How is he doing?SIROD said:HER2 Stage IV
A friend of mine was on HER2 for many, many years. She was stage IV too.
I resent my message to you.
Best,
Doris
Hi, can you tell us more information about your friends? I think many needs to know how he was doing. Thanks! - how to control high blood pressure | hpv throat cancer | low blood pressure during pregnancy0 -
Not...Muschi said:Doris
Thank you Doris, I think you really understand where I am coming from. My question to this forum was never about having a good Dr, my question was if somebody had Herceptin longer than one year. Who cares what the cancer is named after I just know that my onco is taking good care of me. I can talk to him and he listen to what I have to say. He is very patient and interested in my feelings and I think that is so very important. I did make research on other web sides and there are people who took Herceptin more than one year and are doing fine, which reassures me that I am on the right track.
Ilona
Not sure any one questioned whether or not your doctor was a good one...what was confusing to most was your insistence that HER2 was your type of bc...and yes, it makes no difference now that you are stage IV...most were just trying to understand and for you to clarify WHY your physician wants you on Herceptin for longer than a year...as 1 year is usually the standard....but you've done that...
So, I wish you the very best..0 -
Not...MAJW said:Not...
Not sure any one questioned whether or not your doctor was a good one...what was confusing to most was your insistence that HER2 was your type of bc...and yes, it makes no difference now that you are stage IV...most were just trying to understand and for you to clarify WHY your physician wants you on Herceptin for longer than a year...as 1 year is usually the standard....but you've done that...
So, I wish you the very best..
sorry I am not used to belong to a "group"...... I felt attacked. I only wrote about the cancer what I knew, well I guess it was a misunderstanding from my side. We are all in the "same boat" so to say, one thing I got out of all that...... having more than one year herceptin will be ok. Next week Thursday I have "herceptin day" and I will talk more to my Dr.
You all my dear pink sisters have a nice week-end,
Ilona0 -
MuschiMuschi said:Not...
sorry I am not used to belong to a "group"...... I felt attacked. I only wrote about the cancer what I knew, well I guess it was a misunderstanding from my side. We are all in the "same boat" so to say, one thing I got out of all that...... having more than one year herceptin will be ok. Next week Thursday I have "herceptin day" and I will talk more to my Dr.
You all my dear pink sisters have a nice week-end,
Ilona
good luck to u next week.hugs and love to u0 -
breast cancer
Hi Muschi,
I just wanted to tell you that I'm praying for you and wish you all the best. There have been people on Herceptin for many years and have done fine on it. One person I know of is stage four with bone mets and had to have replacements of hips and they came through it and are still on Herceptin. Just keep your chin up and your eyes on the stars. We all know that life is precious. And even though this terrible disease has invaded our bodies we each are different as far as are makeup goes and that makes each of us indifferent as to how medicine works in our bodies. Herceptin is a miracle drug as I have been told and it is holding up to its reputaion in many many cases. Latest is one person has done Herceptin for 7 years. Wonderful that we all have a greater chance at a longer life and the help of this great drug to help us fight this cancer. Hope for a cure soon and with Herceptin we have made great strides and are working hard in the labs everyday to be able to wipe out all cancers. And as far as the type of cancer you have goes it is very confusing for anyone who is not in the medical field to understand alll the medical names and stages and miotic scores. The doctor will be glad to explain everything about your case to you dear. You take care and the power of love be with you.0 -
Same here. I found the lump myself but didn't think it was serious waited about a year and then I noticed that I had to keep buying new bras every other week. So I told my mom and she made me go to the doctor. Well needless to say when they did the three D ultra sound you could see the calcium around the lump and without a biopsy we knew it was cancerous.
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I took was HER2+ and I did herceptin for one year and mine was aggressively growing as well. I did not do the pill after that or any other treatment besides the double mastectomy. So I'm just wondering if that is why I'm always tired and constantly sleeping. Also my hair and eyebrows are falling out again. So I took have questions. I have been in remission for 3 years now
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If you are currently not on any chemo drugs I would have a discussion with your Oncologist about why all of a sudden your eyebrows and hair are falling out now. The chemo drugs like docetaxel, carboplatin, and targeted drugs Herceptin and Perjeta for HER2+ cancer can cause this but it usually stops several months after you've finished the treatments. Also, contact the company/manufacturer and the FDA since they approve these drugs and want to know about all side effects.
FWIW, I've never heard of Herceptin being used for more than 1 year. There are now more targeted drugs for residual and/or HER2+ Met cancer. T-DM1 is one of them. There's another one that was recently approved.
I'm HER2+ and ER/PR- and just finishing up the docetaxel, but will have Herceptin and Perjeta until the tumor and sentinel lymph nodes are removed and tested to determine if there's any "residual cancer". If no residual cancer is detected I'll be on Herceptin and Perjeta for another 6 months. Otherwise it will be T-DM1 for upto 14 cycles to kill the specific HER2+ cancer cells buzzing around in the blood or hiding in my body. It's a Trojan Horse type chemo drug that attaches to the Her2+ cancer cells via Herceptin, and the payload chemo that is attached to it is "chemically injected" into the cell and kills it. It's not supposed to kill the good cells. It's very targeted but it can damage your liver and other organs like Herceptin.
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