TRIPLE POSITIVE GROUP

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  • kae_md99
    kae_md99 Member Posts: 621
    edited May 2017

    Soxfan75,thanks. pls upadate us on how that goes coz i also want to come can continue perjeta along with herceptin.thanks

  • Mommato3
    Mommato3 Member Posts: 633
    edited May 2017

    Moody, I've never seen Taxotere/Taxol, Carboplatin and Herceptin given weekly. It's usually every two weeks (sometimes three) for 6-8 treatments. The regimen that is given weekly for twelve weeks is usually Taxol and Herceptin.

    I received Benadryl with my infusions too. They made me a little sleepy but I felt fine by the time I had to leave. They give you the Benadryl to help counteract any allergic reaction you would have to the treatment.

  • Upheld
    Upheld Member Posts: 71
    edited May 2017

    Got the results from my PET scan today.  Besides the three positive tumors in my breat and the positive lymph node, the PET scan revealed a left internal mammary lymph node metastasis.  In addition, a tiny spot was found on my iliac bone (on the sacram) which the radiologist said he could not rule out bone metastases.  The oncologist said he could not say it was cancer mets either as it is not in an area that can easily be biopsied.

    So, his recommendation is to go ahead with the TCHP course of 6 cycles over the next 18 weeks and then another PET scan before a mastectomy to see if the chemo worked.  What are you thoughts?

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2017

    Hmm... Well, PET scans are notorious for producing false positives. Three PET scans showed "something" on my left femoral neck (hip). However, it never showed up in a CT scan or an MRI. So, my oncologist considers that to have been a false positive.

    I did get a "before" PET scan and an "after" PET scan. The latter showed that the chemo worked! It showed that the active cancer was gone from my breast and compromised node. It gave me the confidence to get a lumpectomy rather than a mastectomy.

    I would do the chemo, and hope that the second PET scan shows that it has worked. ((Hugs))

  • kae_md99
    kae_md99 Member Posts: 621
    edited May 2017

    i never got a pet scan. but i do wanna get one after chemo. when is the best time after to get a pet scan after chemo to prevent false positives you think?

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2017

    kae,

    I don't think that timing necessarily matters. Just make sure that the radiologist knows about all the various surgeries and injuries you've endured because they might light up. For example, the site of my port insertion lit up.

  • coachvicky
    coachvicky Member Posts: 1,057
    edited May 2017

    I get so confused reading how treatments are done.

    I had bilateral mastectomies and then my chemo.

    I read that some get chemo and then surgery.

    Can anyone explain with the difference?

    Thank you.

    Coach Vicky



  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2017

    Coach Vicky,

    I did chemo before surgery for two reasons. First, my lump was big (5 cm+), and the surgeon hoped that chemo would shrink it and give me more surgical options. Secondly, the easiest way to get Perjeta (the relatively new targeted therapy for HER2+) is to do chemo before surgery. If your HER2+ lump is bigger than 2 cm, national guidelines recommend Perjeta as part of the neoadjuvant regimen. Because my MO was following the national guidelines, we had no problem getting insurance to approve it.

    Now, there are many HER2+ breast care patients who have managed to get Perjeta as part of their post-surgery (adjuvant) treatment as well. Their medical oncologists were able to convince insurance to approve it. So, there's that.

    A final benefit to neoadjuvant chemo is that you can see if it worked for your particular cancer. In my case, we did pre-chemo MRI and PET scans, and then post-chemo MRI and PET scans. Since the post-chemo scans showed no active cancer, I was able to choose a lumpectomy and forego a mastectomy.

    Hope this helps!

  • coachvicky
    coachvicky Member Posts: 1,057
    edited May 2017

    Yes, ElaineThere, this is very helpful.

    I will ask my MO about Perjeta again. I have a nagging feeling my chemo is not aggressive enough.

    Because my DCIS was invasive and without clear margins from my June lumpectomy, I knew I would lose my left breast from the beginning. I opted for the bilateral because my Surgeon and Plastic Surgeon said symmetry would be impossible and my percentages for recurrence in the right breast was high. When a 4cm lobular carcinoma was found via MRI in the right breast, that one was a "goner" too!

    I am unsure why I am so reflective on this some 10 months later. I long for a day when I never think about this again. I wonder will that day ever come.

    Coach Vicky

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2017

    kae - I would wait a couple of months minimum before doing a PET post-chemo to give any inflamed tissues the time to calm down.


  • BeautifullyBroken4284
    BeautifullyBroken4284 Member Posts: 45
    edited May 2017

    ok ladies has anyone in this group experienced nipple necrosis??? I'm freaking the hell out! I've posted in the surgery boards and well I get ignored grrr!!!! Please help! I had surgery on 5/8. I'm willing to pm pics. Please someone talk to me who may have experiences this

  • Char1110
    Char1110 Member Posts: 61
    edited May 2017

    Hi beautifully broken! I don't have any experience but I hope someone responds with their experience soon. Sending hugs your way!

  • deni1661
    deni1661 Member Posts: 463
    edited May 2017
    Hi Hapb - I pray your recovery from surgery is going well.

    My BS provided the same reasoning for bilateral i.e. evidence does not indicate better survival by taking healthy breast. She did say it was a personal choice and about 50% of her patients opt for bilateral if they are overally anxious about getting cancer in the other breast. I had to have mastectomy because I had multiple tumors and it was safest option to ensure not even one cancer cell would be left behind. My BS said that was the critical factor against HER2 triple recurrence.






  • deni1661
    deni1661 Member Posts: 463
    edited May 2017

    I'm doing a clinical trial using Herceptin and Perjeta every 3 weeks for one full year. I am stage 1 with multiple tumors. My situation may be different as this is not standard of care at the moment. I just had DIEP recon surgery last week and start up HP infusions again this Wednesday. I only have 7 left. I did 11 treatments before surgery. I have to give the HP combo credit for my all clear results but since I didn't do any other treatment how do we really know which combo works.
  • deni1661
    deni1661 Member Posts: 463
    edited May 2017

    Beautifully-I'm sorry you didn't get a response. I don't know what it is and they couldn't save my nipple (cancer cells were too close). I hope someone can answer your questions soon. Hang in there

  • Suburbs
    Suburbs Member Posts: 429
    edited May 2017
    coachVicky, I hear you and can relate. Draw a line at 2 cm and some get perjeta and some don't. Go the perjeta neoadjuvant route, delay surgery. Perjeta is the carrot.
    Some know their node status early. Some wait for surgery. Some get ct scans, pet scans, and MRIs. Some don't.

    The guidelines and their application seem arbitrary and inconsistent. Then we read articles saying we are being over treated.

    I'm not surprised that you are looking back. I think it takes a big leap of faith in the early going and that means there is no time to consider.
  • deni1661
    deni1661 Member Posts: 463
    edited May 2017
    Thanks Hapb, it's a slow process for sure - I'm not used to moving at this speed lol.

    Sending prayers your way as well for the best possible path results 👍
  • deni1661
    deni1661 Member Posts: 463
    edited May 2017

    I agree- so much inconsistency with HER2 treatments. Makes it really tough for newbies to know which route to take. Thank God for this board, it helps to know we're not alone
  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2017

    Beautifully, I am so sorry to hear this and what a frightening thing to happen. I'm sure Special K will post here soon or someone else who knows about this.

  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited May 2017

    beautifully, so sorry. I didnt have that surgery, but call your PS. You can send him a pic. If there is some pink skin anywhere, they can probably save it. But im sure he will get the page and he can give you a number to send him pics . Or he will wait til tbe morning. But calm down and as long as youre not running a fever youll be ok. Take a deep breath. Hugs and much love

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2017

    beautifully - I had a lot of necrosis bi-laterally after BMX. While most of the necrotic skin was on the front of each side, I had a small amount of involvement with both (I had skin and nipple sparing surgery) nipples. I used Silvadene cream (a silver based Rx), but others here on BCO have used nitroglycerin ointment specifically on necrotic nipples or skin, often almost immediately after nipple sparing surgery to encourage formation of blood supply. I did not lose either nipple, but the healing took a long time

  • moodyblues
    moodyblues Member Posts: 470
    edited May 2017

    Love you post coachvicky, I love your sweet potato friend....don't we all need someone like that in our life?  You are blessed.

  • coachvicky
    coachvicky Member Posts: 1,057
    edited May 2017

    I planted my garden this morning with hubby's help.

    It felt normal.

    Coach Vicky

  • deni1661
    deni1661 Member Posts: 463
    edited May 2017

    coach vicky, woo hoo! thanks for posting your sunshine news, it lets the rest of us know that our normal is up ahead. enjoy the day :)

  • moodyblues
    moodyblues Member Posts: 470
    edited May 2017

    Yay CoachVicky!  Applause!

  • kmac68
    kmac68 Member Posts: 9
    edited May 2017

    Hi Ladies, I had my first chemo today (TCH-P). Everything leading up to this point has been a whirlwind.  I had my mediport put in yesterday, boy am I sore from that.  I'm not feeling to bad from the chemo so far.... a little tired, mild headache.  I will go every 3 weeks for 6 cycles then and additional 12 cycles of Herceptin.  I am fortunate my MO infuses me with Benadryl, two anti-nausea meds (Emend & palonosetron) and Dexamethasone before each treatment.  I was also able to get the Neulasta auto injector applied so I do not have to return to MO office to receive it. I am aware that the more treatments, the worse the side effects: nausea, vomiting, diarrhea, mouth sores, dehydration and of course hair loss. I cut my hair short Monday and from what I have read here and been told that the hair will be falling out by weeks 2-3. I have so much love, support and encouragement, I feel very blessed. I have been very open about my DX, humor has helped a lot. However, I am scared, angry, overwhelmed and worry for my family and how they are doing.  I would love to hear from others in all stages of treatment/post treatment with words of wisdom and advice. When to expect certain things. I will not have surgery until after I finish the 6 cycles of TCH-P.  I had to stop my Estrogen hormone patch cold turkey. I am taking Relizen and it helps some. does the TCH-P make the hot flashes, not sweats, etc. worse?  Sorry for the long post. 

    Best wishes to all!

  • Upheld
    Upheld Member Posts: 71
    edited May 2017

    Hello kmac! I'm scheduled to begin chemo May 30th and will be on the exact same regimen that you are. So I will be watching your posts with interest.

    As for side effects, are you icing your hands and feet with the taxotere infusion? Are you chewing on ice chips to prevent mouth sores while you're getting your infusion? Are you taking Claritin with the neulasta?

    Ask for your family, a friend gave me some wonderful advice. Your family, and everyone, is going to take their cues from you. If you are okay, then your family will be okay. I can watch my husband and son visibly relax when they see me at the breakfast and I am calm and positive. That's not to say that I am going to be fake or hide. But the presentation will be as positive and uplifting as I can make it. I was a nine year old when my mother got sick and 14 when she died of breast cancer. I am determined to not put my family through what she did.

    I will be thinking of you in the next few days and prayers for you not to have side effects.


  • kmac68
    kmac68 Member Posts: 9
    edited May 2017

    Hello Upheld, I actually forgot about icing my feet and hands until you just reminded me. I will put that on my list.  I haven't chewed on ice chips because I have been drinking something all day long. My MO told me to mix 1 cup warm water, 1/4 teaspoon baking soda and 1/8 teaspoon salt: take small sips swish and when done rinse with just water to help reduce ulcers in the mouth, can do every 3 hours.  I have also read that Biotene mouthwash is good as well. I took a Claritin today will take again tomorrow before my Neulasta pump injects. Probably my biggest issue right now is that my headache is getting worse and of course tired. I think my family is doing pretty well. Like I said, a lot of humor. I would say I have only had 3 big breakdowns and they didn't last long. I'll be thinking about you on the 30th. Let me know how you do. 

  • Suburbs
    Suburbs Member Posts: 429
    edited May 2017

    Kmac68, I just finished TCHP number 6 today and like you will have another 12 rounds of H only. Congratulations on making it through. The first one is the most difficult as it takes a bit longer and the fear of the unknown drives up the anxiety.

    About hot flashes, this regimen puts one in instant menopause. I have experienced hot flashes only since starting with the TCHP, though they are infrequent and do not last very long. Everyone is different.

    On neulasta, there are many proponents of pre dosing with claritin to minimize the side effects (bone pain) of the neulasta. You can ask your oncologist. Most dose a day or two before infusion. I follow a chemo group which has been very helpful.

    The neoadjuvant route leaves lots of time to consider your options for surgery and looking back at testing for staging. I have struggled with these topics.

    There are a few uber experts on this triple positive board that touch down like a helicopter and drop the information you need in no time. Ask all your questions.

    Triple positives are special. Welcome to the club.


  • kmac68
    kmac68 Member Posts: 9
    edited May 2017

    Suburbs, thank you! I have been taking HRT for 6 years as I already went through menopause 6 years ago. I've been having some since I stopped my HRT 2.5 weeks ago and I know that has something to do with it as well. My MO did say to take Claritin for the bone pain. How long was it until your hair started falling out? I have also heard cycles 4,5 & 6 are the hardest because the chemo is cumulative and just keeps building up. I will go back and read some of your previous post.  Congratulations on the completion of TCH-P!

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