Perjeta/Herceptin/Taxotere

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  • Spoonchek
    Spoonchek Member Posts: 158
    edited April 2013

    Thanks so much lilylady for your words to me. I've been so sad and worried since finding out. I really really appreciate you taking the time to reply. The tax is definitely a very hard road to travel and so I'm trying to brace myself for a return to that life starting next week again.



    Thanks so much again for saying hi and acknowledging. Like a hug for me

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

    Has anyone had eye twitch and or fluid in ears from tph?

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

    Spoocheck, hopefully the lesions were found early and they'll be quickly zapped! Sooner is better.



    Ronnie, thank goodness for that balance...



    Good news Pearlady1,



    Happy for you lily lady...I can hardly wait for a break to travel a bit...Disney Lol!

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited April 2013

    Barb, I have occasional eye twitch (even as I type, lol) and my first round of tax I had a lot of fluid from one ear, so much so that my ear got raw and chapped. The first round I had such severe side effects that my onc rreduced the tax dose by 20% and I haven't had the ear problem since then.

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

    lori thank you for your response.  this is the greatest support system.  i am so grateful to be able to ask questions, get answers, and share information re bc.   a blessing.  barb

  • Z28Femme
    Z28Femme Member Posts: 99
    edited April 2013

    When did y'all start losing your appetite/taste on pht? I'm steady gaining weight (and I'm not happy!) I still have a giant appetite and I've completed 2 rounds of chemi so far...



    Bhd,

    I've had the fluid in ears...it has since faded away.

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

    After 2 tx I still have a good appetite and probably have gained weight as well

  • fujiimama
    fujiimama Member Posts: 800
    edited April 2013

    I never lost my appetite. In fact it always got worse with taxotere in the mix. I didn't like most of it, but the steroids would make me hungry.

  • aic
    aic Member Posts: 417
    edited April 2013

    Spoonchek, sorry to hear of your news. Big hugs. Barb, I had the eye twitch until I stopped tax. Bethany, I gained weight and never lost my appetite even though everything tasted like crap.

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

    Shhhh, don't tell my docs, but I never took the steriods except as part of the pre-med. I was always caught on infusion day of being sooo tired from the Benadryl and hungry from the steroids. I tried to sleep so I wouldn't eat. I also tried to eat popcorn all night so I could stuff my face without many calories. Then a can of pineapple when that wasn't enough.



    I do take Ritilan everyday for the extra energy and it's an appetite suppressant.



    Really, we loose our breasts, go bald and now we have to gain weight while we worry about death. Something here just isn't fair.

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

    This is the first time I have lost weight on chemo. I have a cast iron stomach so never have had the nausea. This combo gives me the nausea plus the Big D and the crap taste buds so I am down 20lbs since last June. I am probably still a little heavy for my height but they want me toput some pounds back on.

     I have 2  dressy weddings coming up so hard to decide toshop now or wait tiel the last minute. Since I am taking a chemo break fro May I know my appetite will come roaring back-not fair how quick the weight piles back on when it comesoff so slow. My group at work are all doing the Sensa thing-they just startedlast week so hard to say if it will work. I told them I have enough chemicals in my body without sprinkling more on my food.

  • fujiimama
    fujiimama Member Posts: 800
    edited April 2013

    SPAMgirl totally get it. I was the same way. I didn't take my steroids pre or post. But the treatment ones still made me a crazy muncher. I tried keeping veggies around all the time. Ha! still gained each round. Bald, boobless and bloated all at the same time.(a we still look better than snooky)

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

    Same here, on Tuesdays (abraxine) I can eat till the cows come home...sugar, chips, junk day...wed or thurs is D day but nausea is the only thing that stops me from eating...fun when you go to the restaurant and they watch this bald chick stuff herself.



    I'm not on sreriods! Lol, Jo

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

    Been following all your triumps and defeats for a while and know some of you have had to leave this protocol due to either progression or intolerable side effects. I think I might have to do the same. Before getting perjeta approval I was on carbo/tax and not tolerating it well at all. We were excited to move to this but I have been finding it just as intolerable. First couple rounds gave me sore throats and high fevers..the last that landed me in the hospital for a week. Took some time off and went to Florida..came back and had my third treatment. My onc reduced the tax by a little. Aso got a neulasta shot to try to prevent the situation that landed me in the hospital. But this time I got terrible nausea and vomitting..surprised me since nausea doesn't seem to be a common side effect of this and I didn't have it the first two rounds. The carbo gave me regression which I haven't had in over a year but not willing to suffer the side effects. Will scan in a week but judging from tumor markers my onc and I both think this is working. This is another time I almost want progression cause I just can't do this anymore. I might be willing to compromise if she significantly reduces the tax or takes it away altogether. Or maybe an every week schedule instead of every three? Any ideas? I won't see her for a couple weeks when I have my next infusion but I plan to call and leave her a message giving her a heads up that I'm not doing this again unless she can change something significantly. With the exception of smalls breaks here and there my qol has been horrible since the start of the carbo/ tax back in early December. It's just not fun anymore.

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

    Jill I was allergic to taxol but the Abraxine is much better. I get 140mg weekly, 3 on 1 off.

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

    I went to weekly so I didn't feel horrible. I just felt a little icky every week. I too, was secretly want progression so I could get off of it. But I got, "dramatic progression" instead.



    Sometimes, extra fluids can help with the nausea.

  • kingcour
    kingcour Member Posts: 93
    edited April 2013

    My eyes twitched terribly at first, but seem to have gotten better.



    I just finished my 16th tax. Feeling like poo. Ready for this P/H break. This is the most tired I have been, and the cramps and big D moved in early. I have lost 5 lb since Thursday. I just keep telling myself that I will feel better this time next week, and for now, I don't have to dread the next one.



    Well wishes to you all!

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

    Abraxane instead sounds like a good suggestion...have never tried that.



    Glad you weighed in, Spamgirl. I know you got progression and are off this now but I was thinking about you specifically because I knew you tried an every week schedule for a while. According to the nurse I just spoke to about it, she says they don't do taxotere every week...just taxol..at least at that facility.



    I wonder if they'll consider Abraxane as an option instead of taxotere. Glad I at least made the phone call so they know where I stand and they can consider all the other options before I get there for my next infusion.

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

    Is severe nausea two weeks out from treatment an issue for anybody on this? My stomache burns too now like it might be excess acid causing the nausea. Zofran and Ativan aren't touching it. I think it might be the perjeta and not the tax that is causing my problems.



    Going to try Prilosec and tums at the suggestion of the on call fellow I just spoke with. Hope it provides some relief...'cause enough is enough already!

  • Z28Femme
    Z28Femme Member Posts: 99
    edited April 2013

    I'm sorry to hear that Jill. Hoping you can find some relief soon!

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

    Slept all night with NO nausea..Hallelujah! I feel great this morning...plenty of energy too! I feel like sending out announcements! :):):)

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

    So what finally worked Jill? Xox Jo

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

    I think it was the Prilosec and tums that worked actually. Wouldn't help for regular nausea but my stomach was burning quite a bit so I guess that's what was causing the nausea this time.

  • hope4acure
    hope4acure Member Posts: 29
    edited April 2013

    JillThut I have the same problem with severe nausea and vomiting. What helped me was steroids during the second week and priolsec worked wonders for the heartburn.

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

    I had to take Prilosec daily to make it through. I still take it even though I'm feeling better.

  • soleil505
    soleil505 Member Posts: 1,790
    edited April 2013

    Lynn,

    You should call your onc in case its an allergic reaction.  Hopefully it is not .  In that case he can prescribe something for them

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

    I'm sorry, hope4acure, that you have the same problem with severe nausea. It's the pits. I did carbo/tax just before this and I also stayed on the steroids for a week and then tapered off. It did actually help to the point that I no longer vomited but I was still pretty nauseated. This came on me unexpected because I didn't have a lot of nausea with the first two treatments..just fever and sore throat. I am living in such fear of having the same experience. As foolish as it may sound I'm still kind if hoping for progression.

  • hope4acure
    hope4acure Member Posts: 29
    edited April 2013

    I am battleing the fever right now and it sucks cause it refuses to break. I for see a bad night of sleeping. 

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

    Sorry, hope4cure. I had a fever first time around for 4-5 days along with a bad sore throat but my white cells were able to fight it. Second treatment ..same thing..but the tax lowered white cell counts so I spent a week in the hospital with IV antibiotics. My throat was full of mucous and extremely painful. None of that this time..but the nausea knocked me for loop cause it was unexpected and the worse SE to me.



    I spent a good three years on various chemos functioning pretty normally but the last five months have been horrible.



    Hope you can sleep but if you haven't already called your dr you need to to report the fever. They will probably want bloodwork to be sure your neutrophil counts are sufficient to fight it off. You should probably be especially concerned if it refuses to break.

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

    Jill, we have the exact same opinion of this cocktail. I just hate that I got dramatic progression instead of mild progression. I'm glad you think this is one of the worst. This was only my 2nd chemo (I was to hopped up on fentynal to remember navilbine) and this one sucked.

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