Perjeta/Herceptin/Taxotere

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  • Bondgirl
    Bondgirl Member Posts: 140
    edited November 2012

    Have most of you needed the neulasta shot after treatment? I got it with TCH but onc acted like it was not a given with this treatment.



    Thanks!



    Tera

  • bhd1
    bhd1 Member Posts: 3,874
    edited November 2012
  • lilylady
    lilylady Member Posts: 1,079
    edited November 2012

    I never needed it with the TCH but got it after every tx this time. Since I am done with the Tax he said we will not do it anymore.

  • aic
    aic Member Posts: 417
    edited November 2012

    Lilylady, glad to hear about p&h...keep me posted on your taste buds. Had my fourth on Monday and taste buds are worse than ever. I agree with scuttlers with the private room for that woman. I can't even imagine witnessing that.

  • kingcour
    kingcour Member Posts: 93
    edited November 2012

    I totally agree Lilylady!



    My grandfather is 90 and in early stages of dementia. My mother is having to make these same choices for him. He has COPD and Congestive heart failure, but no cancer.



    If I don't know what is going on and am a burden to my kids, then let me go!

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited November 2012

    My 2nd tx still sucked. I had hope it would be much better than that. My onc did mention giving me lower weekly doses instead of a bigger one every 3 weeks.



    Out of curiosity, how many of you have had more than 6 tx of taxotere? My PA said there is no lifetime toxicity level so I will get it as long as I'm on Perjeta and Herceptin.

  • kingcour
    kingcour Member Posts: 93
    edited December 2012

    I have been on it every 3 weeks since May 7. My onc wants to keep me on it as long as I am having such good results. I did 4 TCH, and next week will be #7 of TPH. The last two have been relatively easy. I almost feel like my body is finally adjusting some to it. Whatever it takes to keep me alive and living normally! I have 4 kids to raise!

  • kingcour
    kingcour Member Posts: 93
    edited December 2012

    And I remember my second treatment of this being worse than the first one. Then they still sucked until #5.

  • Surly
    Surly Member Posts: 357
    edited December 2012

    SPAMgirl, I was on this combo just three infusions before a scan showed mixed results. The major liver tumor grew significantly even while a smaller or secondary tumor was stable or shrunk slightly--same with other mets. So we stopped and moved on. However, as I was on that regimen, I found that taxotere SEs so awful that I found myself questioning how worthile it was at all. I couldn't help thinking that way, I was so miserable. That third week post treatment was great though--I felt "normal"--and kept me going. I so very much wanted it to work. But I also knew that I didn't think I could physically stay on it indefinitely because of how hard to beat me up. I hope that the herceptin+perjeta combo is adequate for people if they ever need a break from the taxotere. Good luck to you. I hope it kicks the cancer into 2042.

  • lilylady
    lilylady Member Posts: 1,079
    edited December 2012

    I worry about going off the Tax but at the same time was so happy to stop it. I got in trouble last year when I finished TCH then was just on herceptin. When the TCH was done I had 5 tiny pinpoints of cancer left-3 motnhs later after just herceptin I had major progression. I intend to enjpy my break for however long it lasts.

     After almost 4 weeks away from the Tax food is starting to tatse good again. Tomato-ey stuff still bad but green apples tasted good and mustard--these were 2 things on my crave list!!

      The Big D has come to visit (of course) but usually by this time after a tx I was getting the horrible cramping stomach and totally worn down-not happening so all is good.

  • JillThut
    JillThut Member Posts: 1,470
    edited December 2012

    Sorry 2nd treatment sucked, Spamgirl. :(. And yes it seems every week at a lower dose might be more tolerable.



    My ins won't pay for this treatment for me..my onc tried. But I will be starting carbo/tax soon..along with herceptin and zometa. Not looking forward to it but glad to hear, Surly that you at least had the third week to feel normal.

  • Bondgirl
    Bondgirl Member Posts: 140
    edited December 2012

    I had my first treatment on Thursday. Friday and Saturday were just a blur of chemo fog and fatigue. Moved from my bed to my recliner yesterday and was able to do a little laundry but still very tired and incredibly emotional. Also, experiencing mild headaches, total acne breakout on face and chest. My hair feels like it weighs 50 pounds so I know it's only a matter of time. Of course, the taste buds were gone immediately but I was able to enjoy dinner tonight. Worst for me is the taste of water. Today I was fairly active all things considered so I'm just waiting for the big "D" which seems so common. Oh, and heartburn sucks too!



    All crappy but manageable! I've been so focused in the side effects that it's now dawning on me that I really want this too work!



    Continued luck and hugs to all.



    Tera



  • itsmytime2
    itsmytime2 Member Posts: 11
    edited December 2012

    Hello...I started this treatment along with Zometa in October.  After my first round of chemo my markers were down.  I go this Friday for CT Scan.  So I'm looking forward to more positive results.  The first round took a very long time because  they want to see how you react to the meds.  I had a mild reaction to the Taxotere (some itching and throat felt like it wanted to close), so on my second round they gave me benadryl before the Taxotere.  Needless to say that was some good sleep.  Want to add that along with this tx I make organic juices and drink it everyday.  SE's are not too bad.  They usually kick in around day 3 after tx.  Tastebuds are off, but they come back a week before my next round.  Mustard, lime and lemon and pretty bland foods are my desired taste these days.  I put fresh lemon juice in my water.  Fatigue is there the first week and some days. Hair is all gone after second tx.

    I just keep saying to myself, we gotta go through it to get to it.

  • Tiger_Blood
    Tiger_Blood Member Posts: 270
    edited December 2012

    Starting this Tuesday. So scared.

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited December 2012

    While it's not fun, it's better that the red devil.

  • LoriKnous
    LoriKnous Member Posts: 80
    edited December 2012

    Lilylady   I think that would have been bothersome for anyone, let alone if they may have been there for the first time. I've been trying to stay busy for the last few weeks. Tomorrow I have my first scans since I finished the Taxol and the anxiety has been horrrrrrible!!!. I'll still have to wait till next Thurs to get my results so I guess I better just find some patients. I surely don't want to end up on any meds for it

    I went to an Aromatherapy introduction today. Does anyone utilise anything like this or have any imput? Meditation I think might help me as well.

  • Kellygrl77
    Kellygrl77 Member Posts: 41
    edited December 2012

    I wasn't able to log back in awhile. Thank you for the info. Was wondering how perjeta has been working for everyone? I got taken off Taxol for the starting of neropathy &you removed off perjetta for last couple treatments because of possible side effects of severe headaches spasms & dizziness. Also still can't sleep & spells of diarrhea. Still getting herceptin every 3 weeks & only been off perjetta last 2 treatments & possibly skipping one more than guess going back on perjetta. Anyone else with similar side effects or temp stop?

  • Kellygrl77
    Kellygrl77 Member Posts: 41
    edited December 2012

    On the upside my cancer in my breast after starting perjetta that had started at 5cmthe couldn't be seen in the scam & got results from my Lumpectomy what they did remove from my breast &the lymph node removal had no cancer anymore. Going in soon for more tests & radiation soon. That was great news. Guess just waiting if do go back on it after possible side effects.

  • pearlady
    pearlady Member Posts: 882
    edited December 2012

    Hi Everyone.  I haven't been on too much due to a crazy work schedule.  I was wondering if anyone else has had the issue with weight loss.  My markers have improved since being on perjeta/herceptin.  I am not on Taxotere, but am on Afinitor/Aromisin.  Although I have quite a good appetite and not the bad taste buds, I cannot get rid of the big D problem.  My onc tells me that this is just a side effect of the drug, but I was wondering if anyone else has experienced weight loss on this combo.  I never thought I'd be at the point where I said that I was thin enough and wish I would gain a few pounds.

  • respin
    respin Member Posts: 280
    edited December 2012

    Kellygrl, I had a 100 point marker drop after my loading dose of Perjeta.  Doc always gives me the option of a temporary hold if s/es are overwhelming. The only major problem I'm having is diarrhea - my goal is to get my markers nice and low (<50) and then take a Perjeta-holiday.  I probably would have quit Perjeta altogther had I not seen that large marker decline. Good luck on your tests.

  • Kellygrl77
    Kellygrl77 Member Posts: 41
    edited December 2012

    Respin. Thank you. Guess it is just that, it did great than a much needed Holiday from it.


    Pearlady yep definatly was having dreaded D also. Does sound a lil better than spelling it out. Was of corse loosing weight also. My doctor perscribed me lamotal that I tried taking as needed which ended up at least ok for anything lil while & then realized was time for another dose. Having the break from projetta it's not as often & I could have went without gaining all the weight back, was just getting into a pair of jeans I had in the back of my closet. My nurse is a sweetheart each time I have to get on the scale she says "still 125" sweet & GREAT since of humour I like what she reads better. But wether skinny or chunky that kind of weight loss &hate side effect are not good & maybe doctor can help. So many pills for so many side effects than pills for those. Eventually reach somewhere tolerable or hopefully all better.

  • Tiger_Blood
    Tiger_Blood Member Posts: 270
    edited December 2012

    I had my first dose yesterday. For all of you when did your Side Effects begin?

  • pearlady
    pearlady Member Posts: 882
    edited December 2012

    Thanks Kellygrl.  The weight loss thing was starting to concern me.  I felt a bit better when I found out that my markers have been continually coming down.  Not quickly, but slow and steady which my onc says is good.  I am hoping that when the TDM1 is available, I can take a holiday from the perjeta or at least maybe less often.  Although I've had the big D with other drugs, including Afinitor which I am also on, this is very different.  I really felt that the food was not getting digested properly with the perjeta and that was part of the reason for the huge weight loss.  I've gotten some new enzymes from the holistic pharmacist and also a protein powder which I take in the afternoon.  I think it's helping.  The last few days have been better with the D.  Also, found out that my potassium was low.  Onc says this is due to the ongoing D, so now taking potassium. So many pills to handle so many things.  The funny thing is most people tell me I never looked better.  Still, I was much more comfortable weighing 118 rather than my current 108.  Going on a much needed vacation, so will have a one week reprieve from the perjeta.  I'd be happy to come back 3 or 4 lbs. heavier. 

  • MichelleAM
    MichelleAM Member Posts: 12
    edited December 2012

    I had issues with the D, too. Then, I completely cut out dairy and haven't had an issue since. My doctor has me on calcium and vitamin D, supplements. I am finding other ways to get my calcium in. Eating lots of fruits and veggies. I do miss cheese and dairy, not going to lie. But, when you know the alternative is spending the day in the bathroom, the choice is easy.

  • pearlady
    pearlady Member Posts: 882
    edited December 2012

    Michelle I tried cutting out dairy and have found that it had no effect on me.  The only dairy I really will eat is cheese and yogurt.  Actually sugar seemed to be more of a problem than dairy.  But when the D is bad, nothing that I eat or do not eat helps.  I was eating large quantities of white rice and bananas and when it was bad, there was no effect.  Over the past few days it seems to have eased up significantly.  What a relief.  I now have two weeks until my next treatment, so I'm hoping that it stays this way.  Also hoping I gain a few pounds.  I honestly never thought I'd ever wish to gain weight, but again, as long as it stays stable and I don't lose any more, I'll adjust. 

  • MichelleAM
    MichelleAM Member Posts: 12
    edited December 2012

    Oh, I am so sorry to hear that cutting dairy didn't work for you. Just sharing what worked for me. Now, I am no help at all. :( I don't eat any sugar, other than limited amounts from fruits and carbs. During the time I was on taxotere, I had diarrhea and nausea most of the time. Horrible. Usually about a week after treatment, it was the worst. But, I was eating dairy and sugar during that time, too. Who knows? Now, I am just on perjeta/herceptin and tamoxifen; so, that could be a big part of it. I was diagnosed at stage 4, so trying to do things that make me feel like I have control over something that I don't have much control over. And, trying to feel better in the process.

  • cypher
    cypher Member Posts: 508
    edited December 2012

    Hi, does anyone have high phosphorus levels not caused by bone mets?  Wondering whether pertuzamab might cause that.

  • pearlady
    pearlady Member Posts: 882
    edited December 2012

     Michelle please don't feel that you are no help.  It's good to share what works for you.  I had also thought that the dairy was not good, but as I said, when it's a bad day, no matter what I do, nothing helps.  The past few days have been better so I am going to experiment a bit.  I always suspected that milk only made the situation worse.  I don't seem to have a problem with hard cheeses.  When it comes to fruit, I can only eat limited fruits.  Some fruits really make the D problem much worse.  I think in most cases, we do have some control over the progress of the disease.  I have been stage 1V since 2001.  I know part of it is luck, but I'd also like to think that the positive things that I've done with supplements and diet have contributed to my long term survival.  Prayers and positive thoughts to all of us.

  • MichelleAM
    MichelleAM Member Posts: 12
    edited December 2012

    Glad to hear that the positive changes you have made with supplements and diet have helped in your long term survival, pearlady1! :) I have only recently felt well enough to run again. Running was always my stress relief and surprisingly, having cancer is stressful. :/ I hope and pray everyday that a cure will be found for all of us. So many good people facing this ugly monster.

  • kingcour
    kingcour Member Posts: 93
    edited December 2012

    Just did Tx #7. I am finding that the last 3 have gotten progressively better. This time my taste changes hardly happened at all, I have had two dances with the big D, and that is without taking my lomotil. My TM hovers around 18-20, so my onc is keeping me on this as long as I am tolerating it so well. After #6 on a Thursday, I traveled that weekend to UGA to the football game and then have been moving and remodeling my new house while keeping up with my four kids and Christmas shopping/decorating in between. My onc is afraid to mess up this good run by dropping the tax unless we have to. My hair is even growing back. It's very strange. I was curious of anyone else has done the tax this long. I did 4 TCH immediately prior to starting the Perjeta regimen, so I have done 11 straight taxotere treatments in a row.

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