Anyone doing Perjeta for early-stage (pre-surgery)?

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  • marvelher2
    marvelher2 Member Posts: 62
    edited January 2014

    Wow Jan, how encouraging this is!  May I ask what your tumor status was prior to treatment as you don't show it on your posts.  What was your tumor size, I assume you are Her2 positive, but how about ER/PR status?  One or more tumors?  Are you planning a lumpectomy, or do you still plan on a mastectomy?  I would like to have a lumpectomy if possible as my sister had excellent results from hers even though she was stage IIIc 21/25 nodes, but her tumor was much smaller than mine.  She is 11 years NED now!!!  

    Right now with the size of my tumor, my surgeon would do a mastectomy unless the tumor shrinks enough from the neoadjuvent therapy.  I just had an MRI  biopsy on the other side of my breast for a 4mm lesion found only on MRI, not PET or PEM, so I don't know yet how that will effect my chances if the result is positive.  I am resigned to accept either option should I need to, but would rather not deal with mastectomy and reconstruction if I don't have to.  I'd love to follow your course of treatment if it is similar to mine.  Thanks for sharing.

  • Girlstrong
    Girlstrong Member Posts: 438
    edited January 2014


    Hi ladies....nice to meet you.  Please see my diagnoses and treatment below.  I had Perjeta starting in October for a total of 3 treatments (along with Herceptin, but Herceptin I will continue for a year).  I will be having a BMX in 2 weeks.  Stay strong, this is a long road.........

  • funthing42
    funthing42 Member Posts: 418
    edited January 2014

    Hello

    My oncologist said see me after surgery.

    I've decided both breast off.

    2009 Original Dx Stage 1 0.8 cm Er+ and Progesterone + and Her2 - /no nodes. Lumpectomy/Rads/Lupron/Arimadex

    Dec 2013. Dx stage 1b  1 cm Er+ Progesterone - and Her2 +  US needle core biopsy. 

    I guess size doesn't matter in re: to receiving neo adjuvant chemo.

    Thanks for posting. One more phone call to make :).

  • marvelher2
    marvelher2 Member Posts: 62
    edited January 2014

    Starting chemo tomorrow with Taxotere, Carboplatin, Herceptin and Perjeta (TCHP).  Wish me luck!  I'll let you all know how it goes.

  • funthing42
    funthing42 Member Posts: 418
    edited January 2014

    Good Luck 

    Hopefully I will start in Feb so anxious to start.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2014

    marvelher2 - good luck.  You can do it!!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2014

    Marvelher & Funthing - did you both start chemo?  How's it going?

    While I did both Herceptin & Perjeta along with my adjuvent chemo of taxotere & carboplatin, the MO has pulled me back to Herceptin only for the next year due to all my SEs.  And I'm in the middle of radiation too!!  Fun stuff.

  • Jan8500
    Jan8500 Member Posts: 7
    edited March 2014

    Hello Ladies - It only took me three months to check back with this thread but I have more good news.   I completed chemo and had an MRI.   The tumor is nowhere to be found.   I will have a lumpectomy in a few days to remove the markers and some margin area as well as the sentinel lymph nodes and get rid of this damn medi-port.   My oncologist told me it is still necessary to undergo radiation to prevent recurrence in cells that might be on the verge of mutating.  I remain thrilled with the excellent results of the chemotherapy even though it was a very unpleasant experience.  Good luck to all of you and thanks for the responses.


  • Jan8500
    Jan8500 Member Posts: 7
    edited March 2014

    Hello Marvelher2,

    Sorry I forgot to address your questions.  You and I had a very similar diagnosis and I am quite interested in your progress as well.

    Dx: 10/16/2013,  3.5cm, Grade 2, ER-/PR-, HER2+

    Chemotherapy:  Carboplatin, Taxotere

    Targeted Therapy: Herceptin and Perjeta

    I'm not very savvy with the abbreviations yet.  What does IDC stand for?


  • Girlstrong
    Girlstrong Member Posts: 438
    edited March 2014

    hi jan8500: iDC is invasive ductal carcinoma. I'm happy that your MRI showed great results! Do the happy dance!! 

  • Jan8500
    Jan8500 Member Posts: 7
    edited March 2014

    Hi Girlstrong,   I finally filled out a profile the other day and many questions were answered.   Along with IDC I had wondered how everyone had thorough descriptions of dx and therapy at the end of their posts.  :)    I see that you had a mastectomy recently and hope you're doing well.   Wasn't the therapy effective or did you choose to have both breasts removed?

    Not only am I doing the happy dance but I am going ballroom dancing tomorrow (Sunday) before my surgery (partial mastectomy) on Monday.  I have no idea how long it will take after surgery and sentinel lymph node dissection before I can lift my right arm.

    Good luck to you.

  • Girlstrong
    Girlstrong Member Posts: 438
    edited March 2014

    hi Jan8500: I choose the bilateral mastectomy ; lumpectomy was offered but I felt like this was the best decision for me. Your surgery should go well. I know I had trouble with restricted arm motion for about the first month but I really worked at it and now I'm back to normal range if motion :) good luck and have fun dancing...

  • Jan8500
    Jan8500 Member Posts: 7
    edited April 2014

    Hi Girlstrong,

    This is Saturday and I had my surgery 5 days ago.  I feel great, especially with the mediport removed.  My surgeon told me that it had been implanted improperly and that part of it was lodged in the muscle.  That's why I had so much discomfort all those months.   My pathology reports came back and surgeon called to tell me that I had a complete pathological response to the targeted chemotherapy.  No cancer was found in any the tissue removed.   I will begin radiation in a month and wonder how you're doing with the rads.   Are you using any special creams.   Hope things are going well.

  • Girlstrong
    Girlstrong Member Posts: 438
    edited April 2014

    hi Jan8500: great news about your surgery. I'm happy for you. Currently I have completed 18/30 rads. My skin looks pink; like I have a slight tan and I have little brown spots all over. I guess they kinda look like freckles. I am told that this is a normal response. I gave been using aquaphor twice a day and washing with Aveeno non scented shower gel . I'm also trying to wear as much loose clothing as possible . It has gone by fast but still...I have about 2more weeks to go. Then I will be onto reconstruction.  Oy!!! This is a long process. 

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited April 2014

    Jan8500 - Glad your surgery's done w/such a great response.  I used Miaderm - made especially for radiation dermatitis, and had very little skin damage.  Of course who knows if that's the cream or my individual reaction, but I found the cream worth the price.  Got it on Amazon.

    Are you both continuing Heceptin AND Perjeta?  I'm doing only the Herceptin now since I'm worried about my CIPN.  Many days I wish I'd kept up with the Perjeta after the initial chemo but there are some hard decisions when a drug is that new.

  • Jan8500
    Jan8500 Member Posts: 7
    edited April 2014

    Thanks for the updates ladies.  I will begin radiation at the end of this month and your tips are valuable.   Since my major chemo ended on Feb. 24th I have had two infusions of Herceptin only.   My oncologist never offered me the option of continuing Perjeta.  I'm so happy to have had that port removed during surgery and it was a snap doing the Herceptin through an IV.   I found that Herceptin makes my tongue feel weird for a day or two but nothing like the effects from Taxotere and Carboplatin.  Minus Two - you've sure been going through this for a long period of time.  What are gummies?  Girlstrong - may I ask where you live in Michigan?   I am thankful to this discussion group for all the support.  Jan

  • Girlstrong
    Girlstrong Member Posts: 438
    edited April 2014

    hi jan800 : I have 1 week left of rads. Unfortunately I still have my port in place, my mO said not to remove it until I'm done with Herceptin :(  like you, I did not continue on with Perjeta. It's not FDA approved post surgery for early BC and so insurance may not pay. I live near East Lansing, Mi. I think write about 1.5 hours apart . Small world. Good luck with starting rads in a few weeks, I will think of you ! 

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited April 2014

    Jan -Unfortunately I had a recurrence that turned to IDC instead of DCIS.  Gummies are Allergan 410 anatomical shaped implants.  I agree w/Girlstrong - it's difficult to get approval for Perjeta but my MO was able to get it because this is a recurrence.  That said - I'm still holding off.  

    I agree about the tongue issues.  And it seems that Herceptin is messing w/my taste buds.  Nothing like taxotere & carboplatin, but still don't care for many foods.  Also I seem to have minor headaches and leg & knee aches for a day or two after Herceptin.  

    I'll keep my port until the Herceptin is done & maybe beyond.  I love the ease of infusions and the fact that I don't have to worry about blood draws or needle sticks and Lymphadema.  I've been told that a port only has to be flushed every 8 weeks, but that's not an issue now since I get Herceptin every 3 weeks.

    Jan - good luck w/rads.  Girlstrong - let us know when you're done so we can send a high 5.  Rads was so much easier for me than either chemo.

  • Kite
    Kite Member Posts: 265
    edited April 2014

    I've been scouring these boards for a week trying to find some ladies who have had Perjeta. I just started it last week. In 2012 I did TCH x 6. (herceptain continued for a year) I was just recently diagnosed with bone and liver mets. After cutting the liver cancer out and radiation treatments I began the Taxatere, Herceptin, Perjeta. It's been so rough! I've felt awful for 7 days now. Broke out in a rash, restless legs, insomnia, fatigue, pain. I'm just over it. How are you ladies doing after finishing all this up?? 

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited April 2014

    Kite:  So sorry about your mets.  I did TCH+perjeta x 6 before surgery for my chest wall recurrence.  After the surgery I did Adrimycin & Cytoxan, then radiation.  A month later I started back on the Heceptin for the rest of the year but told my MO I wanted to hold off on the Perjeta.  One of the listed SEs is neuropathy, so even though one of the docs at MD Anderson says "never happen", I'm trying to monitor my CIPN before I add something else that might make it worse.  He agreed to "hold Perjeta in reserve for next time".  Now there's some hopeful thinking (not).

    I think most of your SEs are from the Taxotere or the Carbo.  Other than the Big D, I didn't have any problems the two times I had only H&P.  Good luck.

  • Kite
    Kite Member Posts: 265
    edited April 2014

    thanks for replying, minustwo. I sure hope it's not this bad every time. If only I could get a good nights sleep! Had a PET scan this afternoon so I should get the results at the MO today. Here's to hoping the rads got most of the bone mets. 

  • ben50
    ben50 Member Posts: 46
    edited April 2014

    Kite, I'm sorry for your side effects. I would say, however, they are probably more likely from the Taxotere than the Perjeta as Taxotere is a heavy-hitting chemo drug. Perjeta has generally mild side effects akin to Herceptin. If the side effects persists at this level, you might be able to ask your onc if it's possible to change up the treatment course (i.e. spreading out treatment more, taking smaller doses every week vs  larger doses every 3 weeks). I know it sucks, but feel good knowing you're getting totally cutting edge medicine that blew away the clinical trials (Perjeta)! Also, because you have metastatic disease, I would asks your docs about TDM-1, it's like the supercharged version of Herceptin and shown outstanding results for mets in the latest clinical trials. 

  • windgirl
    windgirl Member Posts: 340
    edited August 2014

    Hi,

    I just started the same treatment TCHP, and am 11 days post first infusion. I was searching for posts to see what others' experiences have been for hair loss (loss over few days vs few weeks), and I came across your post. I must say yours is the only one i saw with partial hair loss, I hope you were able to keep it! Was there anything you did in particular that could have helped you keep it that long? I did consider the cold caps but eventually decided against it. Thanks and I hope all has gone well for you.

  • Scoobycat
    Scoobycat Member Posts: 8
    edited August 2014

    I have been receiving TCH+perjeta since end of May. Just had my 5th out of 6 treatments. The biggest thing I've noticed that has been attributed to the Perjeta is diarrhea. It's worse the week following the big treatment -- but nothing that can't be managed with Imodium. I feel very fortunate that this drug was available for me. Best of luck to you!

  • Collerick
    Collerick Member Posts: 1
    edited September 2014


    I am 50. October 2013 Mammo and February 2014 multiple US did not yield any indication of cancer. In May 2014 I was Dx with advanced Stage III triple-positive IDC. I was a bit unusual because I presented with inverted nipple, entire breast swelling and pain as first indicators. They ruled out Inflamatory Breast Cancer. However, May 2014 MRI clearly displayed 8cm x 8cm x 4cm mass with no defined edges. There is axilla node involvement, but no further, thank goodness. On May 30th began the first of 9 cycles of Taxotere, Herceptin, Perjeta. I've had a fair amount of side effects from the treatment, but managing to work 2 out of every 3 weeks. After the second cycle, it was apparent from clinical exam that the mass had shrunk consideribly. I have 3 more infusions of the 'cocktail' and will then have Herceptin for an additional 6 months (12 months total). Surgery has not yet been scheduled but current planning is mastectomy on right and at least lumpectomy on left. I have not found any other patients scheduled for 9 cycles of Taxotere, Herceptin, Perjeta. Has anyone else be scheudled for 9 cycles of this as neoadjunctive treatment?

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2014

    Collerick - Welcome but sorry you're having to join us.  I had 6 cycles of Taxotere, Carboplatin, Herceptin & Perjeta three weeks apart, but someone else will probably chime in.  I am still having Herceptin for a year but decided not to continue the Perjeta since I was already suffering neuropathy from the taxotere & that's a possible Perjeta side effect.  You should probably post on one of the Taxotere threads too, or a Fall 2014 chemo thread.  Even if they're not getting the Perjeta, there will be lots of pertinent info.  Good luck with your treatment and the SEs.

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    Perjeta Boosts Overall Survival in HER2-Positive Metastatic Breast Cancer September 30, 2014

    Final results from the CLEOPATRA study showed that women diagnosed with HER2-positive metastatic breast cancer who got Perjeta, Herceptin, and Taxotere lived about 1.5 years longer than women who got only Herceptin and Taxotere. Read more...

    The Mods

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2014

    Thanks mods!!!

  • linzer
    linzer Member Posts: 164
    edited October 2014

    I'm living proof that Perjeta is a rockstar (along with taxol and Herceptin). I finished 12 THP treatments (4 H and 4 P), had my lumpectomy on 9/17 and got the "no evidence of disease, pathologic complete response" note on my path report! I'm beyond thrilled. I had a 2 cm. ER/PR- with lymph node involvement. All clear! Still having to finish treatment. Meeting with MO tomorrow. Likely will still be AC x 4 and rads. But, what a relief to enter into those NED! Happy dance. Hoping many of you are / have gotten this same news!

  • pamelalea1110
    pamelalea1110 Member Posts: 2
    edited December 2014

    Did you loose your hair while on Perjeta and TCH?

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