Herceptin

Muschi
Muschi Member Posts: 85 Member
edited February 6 in Breast Cancer #1
Does anybody had herception longer than one year and if so how long and why? Somebody told me that it would be too dangerous to have herception more than one year but my onco told me that I have to have it at least for 5 more years. Coming up this September will be one year and my joints already aching like crazzy every morning when I get out of bed or just take a nap in the afternoon. I didn't had any pain doing chemo or rads.
Ilona
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Comments

  • MAJW
    MAJW Member Posts: 2,510 Member
    #2
    Are...
    Are you sure you understood your oncologist? I have never heard of anyone having Herceptin for 5 plus years....I think it's possible you misunderstood what he said...usually after a year of Herceptin you would go on Tamoxifen, which is a pill, that blocks estrogen, for 5 years...You may want to call your oncologist's office and have them clarify this for you....I do believe you misunderstood....
    Hugs, Nancy
  • Muschi
    Muschi Member Posts: 85 Member
    #3
    MAJW said:

    Are...
    Are you sure you understood your oncologist? I have never heard of anyone having Herceptin for 5 plus years....I think it's possible you misunderstood what he said...usually after a year of Herceptin you would go on Tamoxifen, which is a pill, that blocks estrogen, for 5 years...You may want to call your oncologist's office and have them clarify this for you....I do believe you misunderstood....
    Hugs, Nancy

    I am sure
    I am sure because we talked about it in details last time I had my appointment with him. The cancer I have is not hormon related, it is HER2+ it has to do that the cancer I hve feeds on protein and the herception is blocking the protein. He told me that he has cases where other women are on herception for many years. I have every 3 month an echogram for my heart and I think listening to my lungs lets him know how strong these organs are in order to continue with the treatment. This why I like to find out if there are others order to stay on longer than one year.
    Thanks Nancy for your reply.....Ilona
  • MAJW
    MAJW Member Posts: 2,510 Member
    #4
    Muschi said:

    I am sure
    I am sure because we talked about it in details last time I had my appointment with him. The cancer I have is not hormon related, it is HER2+ it has to do that the cancer I hve feeds on protein and the herception is blocking the protein. He told me that he has cases where other women are on herception for many years. I have every 3 month an echogram for my heart and I think listening to my lungs lets him know how strong these organs are in order to continue with the treatment. This why I like to find out if there are others order to stay on longer than one year.
    Thanks Nancy for your reply.....Ilona

    Bumping this up...
    I am bumping this up in hopes that some of the pink sisters can help.....

    Iilona, if I'm not being nosey could you tell us a bit more about your type of breast cancer? I'm not familiar with the type that feeds off of protein...I am triple negative, with a recurrence to my lymph nodes this past June...I am not a candidate for Herceptin....wish I were....

    Wshing you the very best and I hope others on this board are able to help and answer your question...
    Hugs, Nancy
  • Muschi
    Muschi Member Posts: 85 Member
    #5
    MAJW said:

    Bumping this up...
    I am bumping this up in hopes that some of the pink sisters can help.....

    Iilona, if I'm not being nosey could you tell us a bit more about your type of breast cancer? I'm not familiar with the type that feeds off of protein...I am triple negative, with a recurrence to my lymph nodes this past June...I am not a candidate for Herceptin....wish I were....

    Wshing you the very best and I hope others on this board are able to help and answer your question...
    Hugs, Nancy

    Bumping this up
    Hi Nancy
    In Dec 1908 I was dx with stage 1 breastcancer. I thought I could heal myself with a natural (holostic) therapy. I stayed on for a year and than I got so sick my husband had to take me to the ER and there I found out through testing that the cancer had spread to different organs and it was now stage 4. Right away I started with chemo and radiation and the cancer is called HER 2+, very aggressive. Herceptin is the only way to treat this kind of cancer. If you go on GOOGLE and type HER 2+ it will give you all the information about this cancer. Thank you for your interest,
    Ilona
  • SIROD
    SIROD Member Posts: 2,194 Member
    #6
    Muschi said:

    Bumping this up
    Hi Nancy
    In Dec 1908 I was dx with stage 1 breastcancer. I thought I could heal myself with a natural (holostic) therapy. I stayed on for a year and than I got so sick my husband had to take me to the ER and there I found out through testing that the cancer had spread to different organs and it was now stage 4. Right away I started with chemo and radiation and the cancer is called HER 2+, very aggressive. Herceptin is the only way to treat this kind of cancer. If you go on GOOGLE and type HER 2+ it will give you all the information about this cancer. Thank you for your interest,
    Ilona

    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
  • Rague
    Rague Member Posts: 3,653 Member
    #7
    Muschi said:

    Bumping this up
    Hi Nancy
    In Dec 1908 I was dx with stage 1 breastcancer. I thought I could heal myself with a natural (holostic) therapy. I stayed on for a year and than I got so sick my husband had to take me to the ER and there I found out through testing that the cancer had spread to different organs and it was now stage 4. Right away I started with chemo and radiation and the cancer is called HER 2+, very aggressive. Herceptin is the only way to treat this kind of cancer. If you go on GOOGLE and type HER 2+ it will give you all the information about this cancer. Thank you for your interest,
    Ilona

    What type cancer?
    HER2 is not the type - it's a sub type just like ER/PR is. The type is DCIS (Ductal Carcinoma In Situ), LCIS (Lobular Carcinoma In Situ), IDC (Invasive Ductal Carcinoma), ILC (Invasive Lobular Carcinoma) or IBC (Inflammatory Breast Cancer). I'm IBC, ER+/PR-, HER2 -.

    As I'm HER2 -, I've never looked it up. Being ER+, I was originally told I'd be on Femara for 5 years but found out the last time I saw Dr T. that the latest research is for IBC to stay on it forever. IBC is the most aggressive form - especially TN ( Triple Negtive - ER-/PR- and HER2-)
  • Muschi
    Muschi Member Posts: 85 Member
    #8
    Rague said:

    What type cancer?
    HER2 is not the type - it's a sub type just like ER/PR is. The type is DCIS (Ductal Carcinoma In Situ), LCIS (Lobular Carcinoma In Situ), IDC (Invasive Ductal Carcinoma), ILC (Invasive Lobular Carcinoma) or IBC (Inflammatory Breast Cancer). I'm IBC, ER+/PR-, HER2 -.

    As I'm HER2 -, I've never looked it up. Being ER+, I was originally told I'd be on Femara for 5 years but found out the last time I saw Dr T. that the latest research is for IBC to stay on it forever. IBC is the most aggressive form - especially TN ( Triple Negtive - ER-/PR- and HER2-)

    The cancer
    The cancer I have is called HER2+ which is more agressive than HER2 - at least that I was told by my Dr and I also read it in all my research on the web.
    Ilona
  • Muschi
    Muschi Member Posts: 85 Member
    #9
    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

    HER2 Stage IV
    Doris, how is your friend doing and how long was she on Herceptin?
    Ilona
  • Rague
    Rague Member Posts: 3,653 Member
    #10
    Muschi said:

    The cancer
    The cancer I have is called HER2+ which is more agressive than HER2 - at least that I was told by my Dr and I also read it in all my research on the web.
    Ilona

    Try googling 'Types of
    Try googling 'Types of Breast Cancer' - you will find the types. HER2 is not the type, neither is ER/PR, but is associated with whichever type you are and the. TX.

    I'm really not understanding your time line. You were DX'd in '08 and did holistic stuff? Then got sick and Hubby took you to hospital and they DX'd you again? Then you had Chemo and Rads but according to you only Herceptin can be used if HER2+? Now you're Stage IV and the only thing being done is Herceptin?
  • Muschi
    Muschi Member Posts: 85 Member
    #11
    Rague said:

    Try googling 'Types of
    Try googling 'Types of Breast Cancer' - you will find the types. HER2 is not the type, neither is ER/PR, but is associated with whichever type you are and the. TX.

    I'm really not understanding your time line. You were DX'd in '08 and did holistic stuff? Then got sick and Hubby took you to hospital and they DX'd you again? Then you had Chemo and Rads but according to you only Herceptin can be used if HER2+? Now you're Stage IV and the only thing being done is Herceptin?

    Hercptin for HER2 +
    I had surgery 2008, I forgot to mention it and than alternativ for one year and than chemo/rads and now herceptin. As I read about others with the same cancer type they all had the same treatment as me. Herceptin is for cancer type HER2 +, nothing else would help anymore.
    Ilona
  • Margeaux
    Margeaux Member Posts: 84
    #12
    Herceptin
    Dear Ilona:
    What a beautiful picture of you and your gorgeous cat! I am so sorry to hear you are stage IV. My diagnosis in fall of 2009 was as follows - Stage IIB, Grade III, hormone receptors negative (ER/PR), HER positive. Grade III is the most agressive grade of cancer, HER+ is also an agressive cancer. 2 cancerous lymph nodews as well. I had 6 months of chemo, followed by surgery and radiation. Since my cancer was HER+ I also had one year of Herceptin. I had regular echo cardiograms to check on my heart function, especially since I had cardiac arrythmia in the past. I always thought that Hercepin was given for only one year. All advertising I read for Herceptin talked about "1 year". When I was faced with the diagnosis I spent countless hours on the internet, but soon found this to be a two-edged sword. On the one hand I educated myself about breast cancer on reputable websites such as the American Cancer Society and others, on the other hand I soon realized there is also a lot of erroneous stuff floating around. I always made notes to ask the doctor and wrote his answers down (it helped I still remembered some shorthand). Husband, too, was given the task of listening. You will find a lot of knowledgable sisters on this website.
    Good luck to you and keep us informed.
    Margeaux
  • SIROD
    SIROD Member Posts: 2,194 Member
    #13
    Muschi said:

    Hercptin for HER2 +
    I had surgery 2008, I forgot to mention it and than alternativ for one year and than chemo/rads and now herceptin. As I read about others with the same cancer type they all had the same treatment as me. Herceptin is for cancer type HER2 +, nothing else would help anymore.
    Ilona

    To llona

    Hi again llona,

    I believe the poster above is inquiring about the following:

    A single agent in patients who have already received one or more chemotherapy regimens

    Every person who has HER2+ breast cancer is unique, and no cancer treatment works the same for everyone.


    I always love the story of Barbara Bradfield, one of the first women to be tested with this drug. She was stage IV and is still alive today. This is her story:

    http://her2support.org/community/member-stories/215-the-first-life-saved


    Wishing you well llona, know that Herceptin is known as the miracle drug.

    Doris
  • SIROD
    SIROD Member Posts: 2,194 Member
    #14
    Muschi said:

    HER2 Stage IV
    Doris, how is your friend doing and how long was she on Herceptin?
    Ilona

    My friend used herceptin for years. She became stage IV in the spring of 2000. She hesitated at first and went on herceptin either in December 2000 or January 2001. She died in 2005. The disease was in her bones (extensive), lung lining, brain, skin and she did develop a tumor in her other breast. Her first diagnose was in '94 and was ER+ but when it returned it was ER- but, Her2 positive. Cancer often mutates.

    I am repeating what I have told you in case other women might be interested in HER2.

    Best,

    Doris
  • Rague
    Rague Member Posts: 3,653 Member
    #15
    SIROD said:

    To llona

    Hi again llona,

    I believe the poster above is inquiring about the following:

    A single agent in patients who have already received one or more chemotherapy regimens

    Every person who has HER2+ breast cancer is unique, and no cancer treatment works the same for everyone.


    I always love the story of Barbara Bradfield, one of the first women to be tested with this drug. She was stage IV and is still alive today. This is her story:

    http://her2support.org/community/member-stories/215-the-first-life-saved


    Wishing you well llona, know that Herceptin is known as the miracle drug.

    Doris

    Been very clear.
    Don't try to say what I was asking abbout! What TYPE Breast Cancer (DCIS, IDC, LCIS, ILC, IBC). HER2+ is not the type. Yes. HER2+ is treated with Herceptrin just as ER+ is treated with estrogen blockers but neither are the type of cancer.

    Every person is unique - not just the limited group who are also HER2+.
  • Muschi
    Muschi Member Posts: 85 Member
    #16
    SIROD said:

    To llona

    Hi again llona,

    I believe the poster above is inquiring about the following:

    A single agent in patients who have already received one or more chemotherapy regimens

    Every person who has HER2+ breast cancer is unique, and no cancer treatment works the same for everyone.


    I always love the story of Barbara Bradfield, one of the first women to be tested with this drug. She was stage IV and is still alive today. This is her story:

    http://her2support.org/community/member-stories/215-the-first-life-saved


    Wishing you well llona, know that Herceptin is known as the miracle drug.

    Doris

    Barbara Bradfield
    I did read her story and we had a few things in comon. Remember when I told my story that I did for one year the holostic treatment, that was the treatment Barbara was ready to do, the Gerson Treatment, 13 juices and 3 to 4 coffee enemas a day to clean the toxin out of the body. Her and me are Jehovah's Witnesses and we truly believe that Jehovah God is guiding us to do the right thing, that don't mean we get miraculous healed but we can do the best there is. Anyway this makes me even more to believe in my onco because I can talk to him about everything, he is very open.
    Ilona
  • ladybug22
    ladybug22 Member Posts: 646
    #17
    herceptin
    i was dx with I B C breast cancer i was her2. i was on herceptin for 1 year . i do know of a lady that has been ob herceptin for at least 8 years. she was dx wit I B C. good luck to u Iona
  • Muschi
    Muschi Member Posts: 85 Member
    #18
    ladybug22 said:

    herceptin
    i was dx with I B C breast cancer i was her2. i was on herceptin for 1 year . i do know of a lady that has been ob herceptin for at least 8 years. she was dx wit I B C. good luck to u Iona

    8 years
    Thank you ladybug22, it always makes me feel good and reassured that my onc know what he is doing, because he told me I have to be on more than just one year. How is the lady doing? Is she still alive? I know even though herceptin is a "wonderfull drug" that don't mean we always get healed. Thanks again .....Ilona
  • camul
    camul Member Posts: 2,537
    #19
    Hi Ilona
    I too am on Herceptin. I have stage iv, IDC Grade 3, Invasive Ductal Carcinoma is the type of cancer that I have. I am pr and er positive, which he says are receptors (what is feeding the cancer). I was treated for her2 -, but the cancer was not responsive and very aggressive. I was borderline her2 positive so with my new chemo, he added Herceptin. I have weekly infusions of it. He has never said only one year. He just said if it works we continue it. I have had 2 echo cardiograms so far and my heart functions are perfect.

    You may want to ask your oncologist what your cancer type is. That may make a difference as to why he wants to keep you on the Herceptin longer. If it is working, he may even be lowering the dose and keeping you on a maintenance dose. But I surely would ask him what type of breast cancer you have.

    Carol
  • Muschi
    Muschi Member Posts: 85 Member
    #20
    camul said:

    Hi Ilona
    I too am on Herceptin. I have stage iv, IDC Grade 3, Invasive Ductal Carcinoma is the type of cancer that I have. I am pr and er positive, which he says are receptors (what is feeding the cancer). I was treated for her2 -, but the cancer was not responsive and very aggressive. I was borderline her2 positive so with my new chemo, he added Herceptin. I have weekly infusions of it. He has never said only one year. He just said if it works we continue it. I have had 2 echo cardiograms so far and my heart functions are perfect.

    You may want to ask your oncologist what your cancer type is. That may make a difference as to why he wants to keep you on the Herceptin longer. If it is working, he may even be lowering the dose and keeping you on a maintenance dose. But I surely would ask him what type of breast cancer you have.

    Carol

    I always
    I always thought what I have is HER2+ and that is what my Dr. calls it. Some of the pink sisters made me daught about the name of the cancer I have.
    Ilona
  • mariam_11_09
    mariam_11_09 Member Posts: 691 Member
    #21
    Muschi said:

    I always
    I always thought what I have is HER2+ and that is what my Dr. calls it. Some of the pink sisters made me daught about the name of the cancer I have.
    Ilona

    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

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