TRIPLE POSITIVE GROUP

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Comments

  • Mommato3
    Mommato3 Member Posts: 633
    edited March 2015

    I love to hear so many talk about pcr with Herceptin and Perjeta. Even though I didn't do neoadjuvant treatment, I feel pretty good about getting both those treatments. What I want to see in the next five to ten years is a high percentage of women who don't have recurrences after getting pcr. There is another poster who talked about getting pcr but it still came back. That made me a little nervous. Of course she did not receive Perjeta.

    Edited to add that there are many women who haven't had recurrences and just received Herceptin. Some didn't even receive that. I didnt want to make anyone feel bad about notgetting Perjeta.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited March 2015

    so what does the perjeta do exactly, my tumors were small under 2 cm. I am still trying to understand it all? One more thing, I have her2+. But is there a hercepton 1 positive? I am getting that notion, and that her2+ is the more aggressive? Or am I just confusing hercepton negative? My chemo nurse said I had to talk to the dr to clear this up.,

  • debiann
    debiann Member Posts: 1,200
    edited March 2015

    Her2 stands for human epidermal growth factor receptor 2. If you are positive for her2 it is considered a more agressive form of cancer and its what earned you a seat in the chemo chair. Herceptin and Perjeta are targeted chemo treatments for her2+cancers. The small size of your tumor may be the reason you weren't offered these, your doctor can explain. 

  • Mommato3
    Mommato3 Member Posts: 633
    edited March 2015

    There is nothing called Herceptin positive or negative. You are either Her2 positive or negative. There are three numbers to show how Her2+ you are. 1, 2, or 3. 1 is considered negative, 2 equivocal, and 3 positive. Herceptin is a targeted therapy drug that is used to treat Her2+ BC. I believe your tumor needed to be 2cm to receive Perjeta.

  • Bren58
    Bren58 Member Posts: 1,048
    edited March 2015

    At a BC conference I went to at Penn, the main MO that spoke said that Her2 did have two evil step sisters. Her1 and Her3. They just don't know the significance of them yet.

  • debiann
    debiann Member Posts: 1,200
    edited March 2015

    Thanks for the info Bren, I googled to understand this better and found there is a family of HER receptors, 1,2,3 and 4. That's why I love this forum, always something new to learn!

  • DavisD
    DavisD Member Posts: 338
    edited March 2015

    I'm triple positive as well and only 6 days into tx. Getting Herceptin, Perjeta, Taxotere and Carboplatin. Having some bad GI issues but managing after starting on larger doses of Imodium. Would like to join your thread. Had DCIS in the same place in 2011, opted for unimx and then had a recurrence this Feb! Hard to comprehend how a 100% ER positive tumor  and morph into a mostly HER 2. Kind of scary.

  • runningcello
    runningcello Member Posts: 110
    edited March 2015

    @davisd, from what it seems like- Perjeta is what brings about that GI problems .. During my regiment, I would have a good 4/5 days of nausea/vomitting .. & then full blown diarrhea for 3-4 days. It persisted through each treatment. It was hard to leave the house because at any moment you had to use the bathroom and it needed to be quick. I'd recommend stocking up on fluids to help your bodu

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2015

    davis - so sorry you have another bout with breast cancer - welcome to this thread!  An ER+ mass doesn't morph into a Her2+ mass - you can be 100% ER+, 100% PR+, and Her2+++, all of that can co-exist in the same mass.  The percentage of estrogen receptors is what the ER percentage shows, and the level of Her2 positiveness shows is the amount of genetic over expression, but they are not mutually exclusive.  Did they do Her2 testing on your DCIS?  Most cases of DCIS are Her2+ but they are just learning about the significance of it, and what to do about it.

  • lago
    lago Member Posts: 17,186
    edited March 2015

    ang7894 I didn't get perjeta either because it was still in trials. Tried to get in a trial but the just changed it to node positive only so I was disqualified.

    DavisD cancer can and does mutate. It's worse than roaches.

  • PMR53
    PMR53 Member Posts: 452
    edited March 2015

    welcome DavisD. I am sorry for your reoccurrence. I had/have many gI issues with TCHP. I had mostly constipation and nausea with taste and smell changes, fatigue, body aches for at least 10 days after each cycle. I have completed 4 cycles and will now get Herceptin every 3 weeks. I recommend being followed by. Naturapathic doctor if you can. He has helped support my body and soul during this time. Good luck and we are here for you.

    Patty

  • sheshe3
    sheshe3 Member Posts: 70
    edited March 2015
  • sheshe3
    sheshe3 Member Posts: 70
    edited March 2015

    Hi, I'm new to the boards. This is my second go round with bc. My first time was 13 years ago rt breast IDC. This time almost identical in my lft breast. I haven't started my tx yet, but my MO says I'll get Taxotere, Carbo, Herceptin & Perjeta. I'll be getting neoadjuvant tx and then surgery and then radiation. I just got my port on 3/19. Will get a muga scan on 3/26 and then can get started. Just flabbergasted to be doing all of this again! So far handling things fairly well, but then these are all new chemo drugs for me. We'll see how it goes... So glad to find this board. I've learned a lot already from you!

  • Bren58
    Bren58 Member Posts: 1,048
    edited March 2015

    sheshe, welcome to this thread. I too recurred 12 years after my first dx, although mine was on the same side. Things have come a long way since our first dx. There are some very knowledgeable ladies here that can help you get through this!

  • CassieCat
    CassieCat Member Posts: 1,257
    edited March 2015

    sheshe3, I'm sorry you're going through this again, but welcome to the thread. These are some very helpful and knowledgable women. I did TCHP first, then surgery and am currently in the final weeks of radiation. I'm sure hopeful that this will be my only go-round with cancer!

  • sheshe3
    sheshe3 Member Posts: 70
    edited March 2015

    Bren58 Thanks for the welcome! I definitely have seen lots of changes since my first bc in 2002. I'm just ready to get rolling. My diagnosis was on 2/05/15 and a month and a half later, still waiting for tx! Soon I think....

    Cassiecat congrats on being so close to the finish line! I hoping along with you that you'll be done for good!

  • Mommato3
    Mommato3 Member Posts: 633
    edited March 2015

    Welcome sheshe3. I'm so sorry you have to deal with this again. This is a great thread! You'll find lots of info here.

  • lago
    lago Member Posts: 17,186
    edited March 2015

    Sheshe the changes are amazing. They changed things since I was diagnosed and treated in 2010! We're here for you.

  • chrissie29
    chrissie29 Member Posts: 121
    edited March 2015

    Bren38-with having a mastectomy, did you find the recurrence?

  • PMR53
    PMR53 Member Posts: 452
    edited March 2015

    SheShe

    Glad you found this site. These discussion boards and women have been so supportive and helpful. I am sorry you have a new BC. I just finished 4 rounds of TCHP. Learn all you can to prepare by reading older discussions. They helped me get through it. We are here for you.

    Patty

  • sophie14
    sophie14 Member Posts: 44
    edited March 2015

    Hi everyone ... I hope everyone is doing ok considering this journey we are on... I have been dealing with a lot of fatigue again ... The MO reduced the dosage of my 4th and last A/C treatment, but the fatigue is still tough.... Tomorrow I get my echocardiogram done, and next week I go for blood work and a teaching class before starting the next phase of treatments. I am HER2 3+, stage 2a , 2.5 cm. mass. The next medicines are going to be taxol, herceptin, and perjecta. If my blood work stays high enough I hope to finish in late June ... I have been reading some of the post about the SE of herceptin and perjecta. I sure hope it does get to bad ...

  • Mommato3
    Mommato3 Member Posts: 633
    edited March 2015

    Sophie, I had the same treatment you are getting. AC was much harder for me than THP. The third treatment was the worst. I didn't feel like doing anything. The fatigue seemed to build up over time with the Taxol but nothing like AC. I did get the big D at times from the Perjeta. Overall I thought it was pretty easy...for chemo! :)

  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited March 2015

    Things have changed! I didn't get Perjeta because it wasn't released yet. I was also under 2 cm so I might not have gotten it anyway. and had to stop Hercptin due to heart trouble. So I'm keeping my fingers crossed.

    What I want to say is Diarrhea is not just a joke and is not just perjeta. I got a very bad case of it on just TCH. I ended up in the hospital! Dehydration caused kidney failure. Yeah. Don't joke around with this. If you are taking the maximum Immodium you need prescription meds. Oh. And the sleeping pills look just like the diarrhea pills. Ask e how I know that.... LOL

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited March 2015

    thanks for some of the clarifications on the her2+. I understand that the world of genetics is going to be playing a big part of this whole BC disease, I had some liver issues a few years back and was worried since it could not be confirmed with what I had, They were talking about hepatitis g,h I, already on the forefront, but no conclusive ideas which are by far worse, other than hep c for now, Luckily mine turned out to be dietary and that cleared my mind a bit. Because cirrhosis was not what I wanted to head for. In the meantime, sorry we are all here, but have lots to discover and share.

    My biggest advise is the hydrate, hydrate, hydrate days before and all thru the days, this is saving mefrom a horrible repeat of round 1 so far of chemo. I am praying for all of us here and in the past and future, as we are the explorers in this up down world of breast cancer with only some answers and future hopes of success.

    Maryann

  • Bren58
    Bren58 Member Posts: 1,048
    edited March 2015

    yes chrissie, I found a small lump under my arm along the scar tissue that turned out to be a cancerous lymph node. Most people that have a BMX for early stage DCIS do not go on to recur. It is only about 1-2% that do.

  • knmtwins
    knmtwins Member Posts: 598
    edited March 2015

    Welcome all you new ladies! For those in chemo, get on your starting chemo MONTH page also. I found it a wonderful resource, as you learned what was working for others and sometimes it helped you too. As to TCHP, for me, it was bad taste, constipation, nausea, diarrhea,heartburn; then the other things, neuropothy, runny eyes and nose, fatigue, etc. Get the constipation under control before the 'big D, as we called it' comes. My chemo day was Wed, my best rounds were when I took Miralax Wed, drank Mag Citrate Thurs night and/or Friday night. Magnesium Citrate is AWFUL, I drank 1/2 bottle with same amount of red gaterade. My MO says, drink your constipation meds as fast as you can, it helps them work better. Normally around 8 the morning after mag citrate, would be liquid coming out, with some cramping, but not much. If you get that first batch out of you, when the 'D' kicks in, it can come out, so although bad, not TERRIFYING. If imodium isn't working, ask for an Rx for lomotil. Always have reading material, it takes your mind off the amount of time on the comode. Raise your feet, by placing each one on a roll of TP, it will improve your circulation. If you have 'heartburn', get meds for that. I was on Rx 40mg Protonix morning and night and some days would still drink the Rx Carafate and eat tums. Now only on 20mg in the morning, and probably will be able to stop soon, although tomato sauce is still an issue. Hydrate Hydrate Hydrate. I told my MO I was drinking Gaterade, although I hated it, on big D days. He said, drink water and eat potato chips instead, if that is better for you. So water and salt. Listen to your body. I had days I craved spinach, and would eat 1/2 a package of cooked frozen spinach (get much more than a spinach salad), I had days I'd eat a banana, I had days I craved roast beef. My numbers were always good, in my MOs opinion. You can do it, we are the warriors. Oh, and most importantly something someone said to me 1 month in. BC is NOT a sprint, it is a MARATHON. Therefore, your expectsations are in the right place.

  • Blownaway
    Blownaway Member Posts: 760
    edited March 2015

    Moonflwr912 - Looks like you and I are in the same boat.  I was taken off Herceptin after about 4 months due to heart damage - LVEF dropped from 56 to 35 in a short period of time.  My original onco wanted me to do 6 rounds of TCH but that was stopped after 4 rounds by my new (much younger) onco who decided I wasn't doing very well, based on blood work and my side effects.  It's worrisome to hear so much about Herceptin being the wonder drug for HER2+++ and not being able to complete the recommended year.  At this point, I feel great.  My treatment has been over since before Thanksgiving.  My yearly mammo is scheduled for late April and I admit to some nervousness since I didn't completely finish anything except the 36 rads that was part of my original regimen.

  • debiann
    debiann Member Posts: 1,200
    edited March 2015

    I just finished 14 rounds of herceptin. My MO asked if I wanted to stop. I'm not having any bad SE's so I said I'd like to finish the full year. He said ok, but added a full year isn't really necessary. By now the herceptin has either done its job or it isn't working and another couple rounds won't make a difference. So for those of you not completing the full year, you likely got all you need.

  • Blownaway
    Blownaway Member Posts: 760
    edited March 2015

    Yeah but I only got 7 rounds of Herceptin before it damaged my heart.

  • CassieCat
    CassieCat Member Posts: 1,257
    edited March 2015

    BlownAway, was that 7 total or 7 after having it alongside chemo?

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