Perjeta/Herceptin/Taxotere

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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2013

    Barb- I'm not really sure yet. My scan last week showed "ground glass" appearance in both lungs that is new, but we think that's the taxotere causing edema in the lungs (and explains why I've had dry cough and shortness of breath the last 3 cycles!) But now that's something else to watch so I'm guessing 2-3 months.

  • bhd1
    bhd1 Member Posts: 3,874
    edited July 2013

    I hope the new tx without the taxotere is easier and works well for you. Keep us updated. We care. How many tx of taxotere did you have!?

  • CarlaK
    CarlaK Member Posts: 158
    edited August 2013

    Went for my first P/H infusion without the taxotere today-so much quicker! I'm a little achy this evening but nothing some tylenol can't fix. I could get used to this! Hope there's not much "delayed reaction" coming over the next few days cuz I've planned a busy weekend.....

    I finally got to read my scan report from last week, so confusing. The report talks about 6 nodules in my right lung, the one before only mentioned 3. My MO was totally fine with it, but the surgeon is wary (maybe the CT changes are from tax but maybe not).  I guess time will tell and there's nothing to be gained from obsessing about it but it is weird to have that kind of difference of opinion--has this happened to anyone else? You'd think progression vs stable would be cut and dried but apparently not!

  • jocanuck1951
    jocanuck1951 Member Posts: 1,003
    edited August 2013

    So happy Barb that there's improvement! Xoxo Jo

  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    Thanks Jo. The vicks vapo rub has saved me. I feel so much better since I started using it . I Cannot tell you how miserable i was. Thank you so much for sharing this tip. Love. Barb

  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    Formygirls thank you for the support. I hope you made out ok w the srs. You r fighting so hard.

    Carla my inc said we can reduce taxotere dose if I want. I am encouraged that tx is working and it makes the side effects more tolerable. Also thx to Jo and others on this wonderful board I think I have learned how to manage the side effects better. Love to all. Barb

  • kingcour
    kingcour Member Posts: 93
    edited August 2013

    I saw my onc Thurs. He is keeping me on P/H right now. Hopefully my marker will drop since this was the first draw post surgery.



    He asked me what I was doing for fun, and I told him getting my oldest ready to go off to college. I teared up a small amount. I have never taken an antidepressant, but he insisted on writing me a prescription for Paxil to help me through. I have pretty good coping skills and am not sure if I should take it or not. I don't feel depressed...just sadness over a normal life event that cancer makes a little more sad. Do any of you take it or have any words of wisdom? I'm just hanging on to it right now!

  • bhd1
    bhd1 Member Posts: 3,874
    edited September 2013

    I have not used antidepressents because i feel I have good coping skills too. I have a prescription but haven't filled it. The prob is it is not like an asprin that you can just take it as needed. How r you feeling softer your surgery?

  • kingcour
    kingcour Member Posts: 93
    edited August 2013

    The surgery was much easier than I anticipated. It is healing nicely, and I am getting back to "normal".



    You are right a out it not being an aspirin. That is what worries me! I think I will stick to my own skills right now for coping unless someone has great things to say!

  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    good for you kingcour

  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited August 2013

    bhd1...Yippee scans show improvement!  How much longer will you be on the taxotere part?  Sorry it's the culprit behind the rash, but it's definitely working...so, once it gets rid of all the pesky cells, you can say goodbye to it!  Do you think your arm swelling may be lymphedema?  I'm doing some very simple tai chi moves that are really beneficial for lymph fluid movement.  There was a tai chi master on Dr. Oz and the 3 moves he did are so easy and relaxing.  He said 10 min a day & I feel like in the last week, I have less tightness in my armpit area that I really didn't even notice (result of diep flap's new breasts).  Feels good. 

    Carla...Yahoo on stable!  I feel your "ever so slight" disappointment at not being totally disappeared!!!  I felt the same way with my liver.  But stable is awesome.  I'm hoping for the last 20% to be obliterated....then I will welcome stable!!!   Good luck on your mastectomy. 

    Oh Gals...I love hearing hair stories!!!  I'm still thinning.  I actually asked my onc what she thought about eyebrow tattooing...she pretty much asked if I could guarantee no hepatitis.  UGH.  Guess I'll keep brushing them on!!!

    Have a great rest of the weekend, sisters!

  • jocanuck1951
    jocanuck1951 Member Posts: 1,003
    edited August 2013

    Yikes Ronniekay I hadn't thought of hepatitis! I was thinking about the eyebrow tattoo as well...it's losing the brows and lashes that got me. I looked like an alien😐



    I read on the exercise that your Rx is 2/1 now, does that work out to less chemo? Was that suggested by your onco? Xoxo. Jo

  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    thanks ronnie kay. we can reduce taxotere whenever i want, but i am afraid . i have had 7 failed chemos. yes i have developed lymphedema. i am worried about the impact that will makr on my active lifestyle

  • kingcour
    kingcour Member Posts: 93
    edited August 2013

    Post surgery, my tumor marker jumped 24 points! I had a PET right before surgery that was good. Has anyone ever had a jump for no true reason? Should I push for a brain MRI?

  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited August 2013

    Kingcour: was your onc concerned? Mine went up 9 points~which it did a couple months ago~and she wasn't concerned & said they sawtooth~up, down, but 24 would make me worry. They look for trends, so maybe next month will be better. They say there are lots of reasons for spikes~antibiotics, etc, so that's something to

    consider. Thinking of you.



    Jo...since scans were good in June, she decided to go to 2weeks on/1off w/chemo. That was the unplanned regimen early on due to low white count, when they had to hold it every 3rd week & do neulasta. The new regimen is pretty standard-but she did every week to zap tumors quickly. We'll see how it goes...ever hopeful. Feeling not so good this week-dragging & sore throat & had neulasta last week. Kind of worrisome. Bone marrow needs to get busy!



    Bhd1-from what I've seen with gals who have le, you will be able to be as active as you want~but with some modifications-like wearing your sleeve & glove. There are other things to consider~sun, flying w/sleeve, etc, all things that come w/losing nodes. You'll learn & know what you can do...that's only what I've seen w/others. It still sucks! As they say-cancer, the gift that keeps giving! Enough already, right!!!

  • sueopp
    sueopp Member Posts: 1,541
    edited August 2013

    Hi ladies - Rhonda and Jo:  I have had eyebrows and eyelids done by a highly reputable permanent cosmetics person and wow did it make a difference to me re: my self image.  No hint of hepatitis (was never mentioned to me) - my proceedure was safe and ever so helpful.  Maybe think about it some more?  I suspect you could find evidence of whether the individual doing the work for you is beyond reproach.  Good luck - SUE

  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    I had this done too but would be afraid to have it done while on taxotere.

  • jocanuck1951
    jocanuck1951 Member Posts: 1,003
    edited August 2013

    Thanks Sue & Barb! I'm not on chemo for now just herceptin. I have a scan coming up mid August so if I've stabilized maybe no chemo for a couple of more months. I will definitely look into this next week, line up my ducks....at what point do I get it done? My brows are growing now as are my lashes so....when do you guys think would be a good time...I don't wanna shave my brows!! Xoxo Jo

  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    This is a good time to get it done. You will love it. People kept saying how nice I looked and they didn't know why! If you loved your brows befote. take a pic of them along w you. If not they can create a pretty look. Take time to get the right look. And make sure you go to someone highly recommended. Get references. If they screw it up, you will not be able to fix it. It is the best thing I ever did







  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2013

    Ladies:  I have a chest wall tumors & maybe metastases to the lymph nodes after original BMX only 2 years ago with clear SNB & margins.  Now IDC, ER/PR neg, HER2 positive.  I've been on a chemo regime of Perjeta, herceptin, taxotere AND carboplatin every 3 weeks since April and will have tx#6 tomorrow.  Then I'll be on Perjeta & Herceptin for a year - in addition to more surgery w/new staging, then rads.

    I'm looking for some info about the SEs of Perjeta.  It's so new that all my MO will commit to is potential heart damage and maybe continuing neuropathy.  But I feel like he doesn't worry so much about quality of life issues - which are important to me.  I'd appreciate any experiences you can share about the Perjeta after the taxotere & carbo are done.  Thanks in advance.

    I'm not stage IV but I can't find any other threads that discuss Perjeta so I hope you don't mind me posting here.  I admire you all and you are always in my thoughts & prayers.

  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    Since perjeta is so new and i don't think many

    people have had it alone, i

    Think it will be hard to get accurate facts re side effects.

  • sueopp
    sueopp Member Posts: 1,541
    edited August 2013

    Dear folks - I have information to share, and perhaps it would be useful to some on this thread.  Since mid-June I have been on a new chemo regimen of herceptin/perjeta plus navelbine (rather than taxol).  I had my scans recently (early - haven't yet completed the first 3 months) and they showed reduction of lung mets by 1/3 to 1/2.  My mets are tricky, I have never seen the mysterious NED, and so me and my family are doing cartwheels.  I was wondering if any of our sisters who are suffering so much from the taxol might receive the same (good?) effects by taking navelbine instead?  Maybe something to explore with the oncologist.

    IMPT DISCLAIMER - it is true that I have experienced a very rare pain reaction to the navelbine and we are trying to straighten that out.  I am told however that this happens to nobody else and is extremely rare.  I am told that navelbine is a really easy chemo to tolerate (unless you are me).  Just food for thought.   Hope that everyone is doing well.   SUE

  • lilylady
    lilylady Member Posts: 1,079
    edited August 2013

    Ladies I am popping back over to say how great life is on Kadcyla. I just got my second tx yesterday. I am 6 weeks out from my last PHT and the last of the SEs are finally fading. After a year of this treatment my body was as beat up as it has ever been.

     Now I am like a normal person. I go to the bathroom like a normal person. People have no idea how freeing it is to not have to plan your whole life around wether there is a bathroom available. I go to parks and concerts and walk my dog for miles and don't even think about it. Every day I am stronger physically too. I can almost feel my blood surging I feel so good. May be too soon to say because I did just get my second tx but this is too easy to even believe. I had a few days of dizzy spells but they faded as the day went along.

     I am grateful for the year I got out of PHT but I paid a price for it. I hope all of you continue to do well.

  • JillThut
    JillThut Member Posts: 1,470
    edited August 2013

    Glad to hear it, Lilylady! You deserve it! I'll be joining you there soon and can't wait...because I am so not liking taxotere!!!

  • aic
    aic Member Posts: 417
    edited August 2013

    Congrats Barb!!! Lilylady, so happy for you.

  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    thanks lilylady, as you know i am paying a high price for it

  • Suniday
    Suniday Member Posts: 4
    edited August 2013

    I am sooo happy to have found this forum!  I was diagnoised a few weeks ago with stage IV breast cancer.  I have a mass in my liver, and 1 "hot" lymph node.  My chemo "cocktail" (I was told this is what it's called) is perjeta/herceptin/taxatere.  Scared??  Well YESSSS I am.  I had my first chemo session on Fri. Aug. 2, 2013, and although I had planned a pretty low key weekend, I got along pretty darn well. Just a little tired, but otherwise I felt pretty normal. Then on Mon. Aug. 5, I had an injection of Neulasta. I have struggled all week with unbearable bone pain to the point that I could barely raise my head from my pillow.  Extra strength Tylenol, Aleve and Vicoden only gave me minimal releif for a few hours.  I am scheduled for 6 P/H/T treatment(three weeks apart) with Neulasta after each one. My onc has offered pain meds with codine for the next time, but I am really hesitant about the Neulasta drug.  Now, whether the combination of the first P/H/T AND Neulasta just threw my body for a loop, or whether it will be as bad next time is very concerning.  By the way, my dear Mother was a 24 year breast cancer survivor who passed way 11 months ago of the disease.  So needless to say, I know what "FIGHT" looks like, and I am up for it:)  Her whole medical regime was quite different than mine will be, for many different reasons.  Looking for support, advice and guidance and willing to share mine:) Love, Debbie

  • Moderators
    Moderators Member Posts: 25,912
    edited August 2013

    Hello Suniday/Debbie, and welcome to Breastcancer.org. We're glad you found this forum too!

    The main Breastcancer.org site has some information about Neulasta pain, and a way that many members have found successful in dealing with it.

    • The Mods

  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    Welcome Sunday. I have been on pht for 8 tx and have never had neulasta. I have been told however that Claritin. ( yes the allergy drug). Will help w the side effects from neulasta shot. It is rot th a try

  • CarlaK
    CarlaK Member Posts: 158
    edited August 2013

    Hello Suniday- I had P/H/T every 3 weeks for 6 rounds and never had Neulasta. By the time we got to the day before the next infusion, my white count was fine. I know that when they do "dose dense" chemo with infusions every 2 weeks, the Neulasta is needed to get your white count back up in time for the next one--but if you are getting chemo every 3 weeks, why not let your body take care of it without extra drugs (assuming your counts can bounce back and you don't have any infections/fevers etc) Ask your onc why they want to use it routinely...

    I hope P/H/T is easy on you!

    Carla

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