Perjeta/Herceptin/Taxotere

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  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited March 2013

    I was told the steroids are for water retention, too. They don't give me the IV steroids, just pills. I don't find it increases my appetite much myself. Everything is kind of tasteless after chemo.

  • kingcour
    kingcour Member Posts: 93
    edited March 2013

    Someone asked earlier about liver enzymes elevating...mine bounce around. Up then down. It almost alternates each cycle. My doc says it isn't anything to worry about. Chemo does elevate them especially during tissue death because your liver has to filter out what the chemo is attacking. I don't know your exact numbers, but I understand your concern. It scares me too!

    I got to do a cycle of just p and h an skip the tax. I felt awesome! It was perfect timing as we spent a week at Disney World with the four kids! I just went back on the full three this past Thursday. Two more and then he's going to let me try just p and h for a while.

    Prayers to all of you that these new treatments work!

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

    Kingcour I hope you had a great time in Disney with your family!

  • Kaelia
    Kaelia Member Posts: 163
    edited March 2013

    Kingcour, I am happy to hear you got a break from the tax for your Disney vacation! Yay! Reading your post makes me look forward to try P and H -if my next scans are good.

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

    It's official . I begin thp thurs dh was on phone 4 hrs today re insurance. He worked the magic.

  • Bondgirl
    Bondgirl Member Posts: 140
    edited March 2013

    Kingcour, woohoo on Disney vacation.  My husband and I considered taking our daughter for spring break but with the crowds and just finishing my 6th round at that time I think it will be too much. So God willing there are no bumps and treatment doesn't change we are headed to Amelia Island for spring break.  3 days on the beach. Even with a 4 year old is has to have some relaxation, right....? lol.

    Bhd1, congrats on getting insurance to approve.  I hope the t/h/p works magic for you!

  • kingcour
    kingcour Member Posts: 93
    edited March 2013

    Wishing you relaxation Bondgirl! Disney sure doesn't leave you feeling relaxed, but I love it anyway!



    I got my labs back from the cycle I spent off of taxotere. My TMs dropped 7 points- down to 23. I hope that's a positive sign for the future. Some of my liver enzymes were up and some were down. I am scheduled for a PET scan Tuesday. Please say a prayer for calm nerves and good news!



    I made the decision to retire from teaching. I am only 38, but I had in 12 years, so I was able to get a decent monthly pension that my husband will still get after I go. Hopefully I will be enjoying it for a long time. I am thankful the state of Georgia had this available to me.



    God is in control. Praying for everyone!

  • Bondgirl
    Bondgirl Member Posts: 140
    edited March 2013

    Kingcour, I "retired" from the legal world at 35. No pension but disability benefits for me and my daughter. Totally worth it!



    Where in GA are you? I live in northern burbs of Atlanta.

  • kingcour
    kingcour Member Posts: 93
    edited March 2013

    Bondgirl- I am north Georgia- Dalton...aka the Carpet Capital of the World. Haha



    I was told I could get SS disability too. That would be nice and very helpful! ;)



    We do most of our shopping in Atlanta and Kennesaw.

  • CrawMomma4
    CrawMomma4 Member Posts: 16
    edited March 2013

    I started this regimen along with a shot of Xgeva and a Neulasta shot the day after on 2/20/13. On my 4th day out I started getting this rash which looked like ance. I went to the ER twice for it and seen the dermatologist last week who said I have pustular psoriasis from the Herceptin. He said it is very common? Has anyone else felt with this incredibly painful, itchy crazy 'rash'? It's really depressing me considering everything else, I was just hoping to at least have flawless skin out it it all :(

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

    I have a rash from tdm1. What did the dermatologist give u for it?

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

    Thanks crawmsa. Will u be on this med long term?

  • hope4acure
    hope4acure Member Posts: 29
    edited March 2013

    ango74 the same thing happened to me while i was on TDM1. Liver mets taken care of but i had progression of my lung mets and also found out that i had three new brain mets lesions to battle. So my opinion on TDM1 is not very good at the moment.

  • hope4acure
    hope4acure Member Posts: 29
    edited March 2013

    A quick question ladies how did you all manage the perjeta diarrhea?. I have it so bad that it is causing me to have vomiting. I was wondering if any of you have experienced this.

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited March 2013

    Imodium, pepto, more pepto, mor Imodium, more pepto. I'm pretty sure I went over the recommended dosage. I was told to make sure to drink Gatorade, but I'm still trying to loose weight from those >}]#+^}€~ steroids, I don't want to drink it. I found some MIOs with electrolytes.



    I'm always so constipated that I try to find the balance of when to start taking the pepto and clearing out.

  • Kjones13
    Kjones13 Member Posts: 1,520
    edited March 2013

    It does see to be a balancing act! My doctor prescribed lomotil...it is my saving grace. I think over the last 18 weeks, I've only had to take the entire days amount twice. I found that staying away from sugar (as much as possible) was key. And I'm a sugar holic! I only drank water and drank lots of it, every 15 minutes. I think the tax probably stops you up and then all that water comes out next. Sorry,don't mean to be gross. But maybe take colase the day before chemo and day of and see if your system might balance out....that is if your are constipated right after chemo. Now that I am now just on h/p, the dirarehea is much more managable.

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

    i had first tx of tph.  red warm rash on cheeks.  any sugguestions what to do for it?  thanks. barb

  • Jlynn0807
    Jlynn0807 Member Posts: 89
    edited March 2013

    Good morning,

    Started Perjeta this past Friday.  Long day.  Showed up at onc's office at 8:45, left at 4:15.  Boring day, but boring for a first time chemo infusion is good!  No reactions.  The nurses were friendly, and watchful, and the heated chemo chair and the added Ativan....not so bad!!  Plus, my wonderful husband was there to support me, as always.

    So, I've been looking for others who are Perjeta users too, and think I've finally found my way!  Nobody on the Stage IV boards seem to be on it, or the Triple positive thread either.

    Curious to see how you girls are doing?  SEs?  So far, for me, I've just found an icky stomach ache, but nothing too unmanageable.  I've been eating Activia, and drinking Dole smoothies with this probiotic "stuff" in it.  I stopped the steroids effective the last two last night, so feeling not quite so much like Superwoman today.  Little tired.  Slept five hours straight on an Ambien ER though, which after having two steroids at 7, isn't too bad and I'll take it. 

    Are the ses from this cocktail less mild?  How is everyone feeling?  I actually said to my husband that they must have made a mistake, because I just don't feel so bad yet.  How about you ladies?

    Warm wishes to all of you!

    Lynn

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

    After reading most of what I've missed, being off the boards for a month, all I can say is thank heavens for Navelbine!  It's the chemo my onc has me on w/liver mets and it causes constipation!  My cocktail is navelbine/herceptin/perjeta (no arom inhib, Pearl) and I truly think the navelbine const/perjeta diarh has evened my system out.  I have neither const or diarh.  I actually feel like I shouldn't put it into writing but am feeling very grateful right now.  When I was getting my loading dose of perjeta, my nurse said that if I needed more than 8 Immodium in one day to call her.  I'd taken 2 in my entire life!  The only thing I notice with the perjeta is the funky tongue/mouth.  It seems a bit better after my 3rd dose but it reminds me of my first go around with taxotere & carbo.  I get perjeta ever 3rd week.  Is this the same treatment for most?  Just wondered if that may be making a difference. 

    Thinking healing thoughts for all of us! 

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited March 2013

    I changed my taxotere to weekly instead of once/ 3 weeks. Now I do smaller doses of taxotere for 3 weeks, take 1 week off and then take the whole cocktail, with perjta) on the 4th week.



    I get my infusion on Monday and I don't start my close relationship with the toilet until Fi or Sat.

  • aic
    aic Member Posts: 417
    edited March 2013

    Good luck kingcour! Keep us posted!!!

  • fujiimama
    fujiimama Member Posts: 800
    edited March 2013

    I've had the rash. My mo gave me a mild antibiotic minecycline, it usually cleared up in a few days. Now that I've been on just p/h since it's getting better on it's own.

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

    Got scan results yesterday-all things STABLE. Xmas scans were done after dropping the Tax for the 2 tx prior and the results were not good. Tax added back in Jan and got the good results. So Boo for me not getting to do just the Per/Her without the Tax. Going to try a reduced dose starting today. I am beat up. I have been on Tax since last July. That is a long time for that toxic a drug.

     WE are also going to try muscle relaxants for the 5 days after tx. I get suh severe cramps in my rib cage, up the back of my neck, in my jaw, ankles. I can't find a position to stretch most of them out wither. After they stop then the bathroom stuff starts. I really am hating cchemo these days

  • Bondgirl
    Bondgirl Member Posts: 140
    edited March 2013

    Lilylady, first congrats on stable. I know you were disappointed to have progressed when they took you off tax. So even at a reduced dose are they keeping you on it for forseaable future?  Have they discussed a gentler chemo?  I just finished round 5 with the taxotere and I just can't imagine being on this much longer even though I think I manage pretty well. Although in the end I will do whatever it takes for stable, regression or the holy grail of breast cancer -NED! 

    Good luck and I hope the reduced dose keeps you stable and allows you to feel better.

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

    ah ily i am sorry the tax is so tough for all of us, keep fighting

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

    does the diarreah get worse w each tx

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

    My days are pretty predictable. I get tx today and really don;t start with the bathroom stuff til Friday. fri/Sat will be pretty miserable then it tapers off for a few days. Even with treating the D I cant be far away from a bathroom. It usually shows up again later on in the second week. I can say in over 2 years of tx I have had D the entire time. Doesn;t matter what the drug my body always reacts the same way.

    So I think today will be my 13 Tax since last summer. You know when you are counting down the tx knowing there wil be and end to it you know you can tolerate it somehow. When it stretches out ahead of you with no end in sight you get pretty discouraged. I wont scan again til May-to me that says I am going to have a crappy spring. Maybe the dose reduction will help. He has been wanting me to do it for a while but after the bad scan in Dec I wouldn't let him do it. And I know if I had to I could still do the full dose---

    I miss food so much. At first the taste buds would be bad for a week or so-now maybe the 2 days before the next tx I can eat things and they taste good. I have lost about 25lbs since i started this last summer. No appetite (wierd for me) or just not worth what eating will do to me bathroom wise.

     What the report spent the most time talking about is "pervasive thickening of the sigmoid colon along a long focal length with neoplasms. Not seen in earlier studies and should be followed up. " Onc never mentioned that. I am way past the age when I should have had a colonoscopy but once I started with this I decided it was more than I wanted to deal with. I have it on my list of things to talk about with him today.

     I will llet you guys know what he has to say after my visit today

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

    Glad for the stable at least Lilylady. I've never had a colonoscopy but according to my onc you can't do it while on chemo. I did 17 months of taxol and didn't mind it but taxotere or maybe the perjeta is kicking my butt. Second round of it and still no diarrhea for me though. Still taking three Sennas and three stool softeners every night to stay on to of the constipation.

  • Jlynn0807
    Jlynn0807 Member Posts: 89
    edited March 2013

    Just wondering..

    Started Perjeta cocktail Friday. Covered in red "sores" (not sure what they are really) all over my face.  They don't itch or anything, they're just kinda nasty.

    Did anyone else have this, and if so, is there anything that I can call my onc for to use?

    Thanks.

    Lynn

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