Perjeta/Herceptin/Taxotere

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

    Girls,

     So happy-2 days post tx and feel perfectly normal-no SEs at all. Sure couldn't say that about PHT. I never had any problems with it in the beginning but the last few months were not fun. I think the whole thing was that the year of Taxotere had just made my body toxic.

     It is supposed to be an easy drug and I am ready for easy.last PHT was 4 weeks ago and I am getting some pretty good hair. I had patches of hair from when we dropped the Tax dose to 70%-I kept thinking I should shave but never did-just looked like a dog with mange. well the bald spots are filling in and when i was outside yesterday I saw glints of blond hair on my legs-now that hair I didn;t miss at all!! No eyebrow or eyelash action yet though. My eye docotr wanted me to use some Latisse. I have been in twice recently to get debris removed from doing yard work-even with safety glasses on. He said that is a major function of eyelashes. has anybody had any experience with using it?

     Also never really used any hair regrowth produts so I might look at that when I go out next. i have been using the same size travel shampoo for ages-one benefit-save huge money on hair products, dye and hairdresser. i have been bald almost from the beginning-2 1/2 years ago. The only time I had hair starting was when I did Tykerb/xeloda-and I was only on that for 4 months so it was just a 1/4 inch when I had to move on.

     Someone told my how to pronounce my new drug Kadcyla-it rhymes with godzilla. Not how I was saying it at all. Also only a 90 minute infusion. I will let you know how it goes.

     Wish all of you the best. Was so happy to have lasted a year on this. makes me nuts that it was approved for first line chemo only-it took 6 months of appeals to get it paid for and I got a whole year out of it. Unheard of I think=so wrong that they don;t open it up to anyone.

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  • aic
    aic Member Posts: 417
    edited July 2013

    Lilylady, so great to hear your news... hope this is the one! Yay kingcour! Speedy recovery!

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

    You make a very good point regarding almost being denied this treatment and yet you got to live a year on it! Unconscionable! I was initially denied by my ins co but moved to Medicare and they approved it without question.



    So glad it looks like you're going to have a good symptom free run on TDM 1! And thanks for the pronunciation buy the way....I was curious.



    Maybe you should just wait out the real eyelash growth and be extra cautious in the meanwhile?







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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2013

    Kingcour-hope the surgery healing is going well. Hope to do this myself next month-I'll know for sure after my scan in a week.

    Lilylady-Sure hope you have a long run on Kadcyla with hardly any side effects. You certainly deserve it after doing a year of Tax! I'm one week past tax#6, what yucky stuff, so looking forward to August when I go to just P and H.

    Carla

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

    Carla how many tx before u drop taxotere?

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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2013

    #6 was the last one. Starting August first I get to do just Perjeta/Herceptin. Looking forward to some hair, some tastebuds and feeling back in my fingers!

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

    Carla did you get your scans yet?

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  • fujiimama
    fujiimama Member Posts: 800
    edited July 2013

    Lilylady= Thanks for checking in. I am so glad TDM1 is working for you. Love the pronunciation help. Now I have a new visual to go with it. Kadcyla must be Godzilla's girlfriend? :)



    Carla= Yay for ending taxotere. Hope you start feeling better soon. You'll have hair just in time for winter. :)

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

    Haven't checked in for a little bit...and now I see about your changing regimen Lori... I'm sad.  OK..now, on to fighting those da.. lesions.  Go TDM1...kick the crap outta those buggers!!!!  Thinking of my sisters...always. 

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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2013

    bhd1- Scan coming up next Thursday. Feeling so much better (except for tastebuds) that my plan is to have tons of fun before and after and not even think about it except to remember to show up. Started today with a little retail therapy and taking my daughter to Despicable Me 2-we loved it! I didn't see the first one but my daughter filled me in on the backstory :)

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

    My last Tax was 5weeks ago and my hair is going crazy. it had started coming in patchy after we went to a 70% dose but now the bald spots are filling in. I haven't had hair in over 2 years so it is really wierd.

     Food is starting to taste like food but since I have ongoing stomach issues I haven't been able to indulge as I had planned. All they can offer is maybe the longer I am off Tax will fix it or several treatments of Kadcyla will beat it back if it is cancer. Still no real SEs. Little dizzy spells Fri/Sat but no biggie.

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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2013

    Glad the new treatment is treating you gently so far Lilylady. And I'm so excited to hear about your taste buds coming back after tax! I could be bald the rest of my life and be ok, but if my sense of taste stayed screwed up like it is now I'd be so depressed. Have your stomach issues improved any since you switched treatments? I sure hope that's the explanation and they just go away. Thanks for checking in!  Carla

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

    Just came back from seeing Despicable Me 2 with my almost four year old grandson. Thanks for the recommendation, Carla!

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

    Despicable Me is next on the list. Turbo got the vote with 4 1/2 and 2 1/2 year old grandsons.  It's a must see as well :)

    Carla...hoping & praying your scan is great!   Happy you're feeling good, too.   Lily...Yahoo for hair. Is it crazy curly????  Two years without it...omg.  My hair is thinning so much on perjeta (I'm on navelbine, which isn't a big hair-loss drug).  I had a ton of hair but not anymore & my eyelashes are thinner & eyebrows are gone.  UGH.  I know, small price to pay for shrinking tumors but....  I guess when I was on taxotere it was just understood that I'd lose it all...guess I had a different mindset this time. 

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  • fujiimama
    fujiimama Member Posts: 800
    edited July 2013

    Jill glad to hear Despicable 2 is good. My DH got to vote this time. We saw Pacific Rim. I really liked it,but I like Science fiction/action movies.



    Carla praying for fantastic scans.



    Lilylady I'm glad your hair is coming back.



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

    Is everyone else just fine with perjeta?  To me, it feels like the evil empire!!!!   My poor mouth.  My lips are ok on the outside, but on the inside they're red & very sensitive.  I tried eating salsa yesterday...ugh.  I'm usually very careful, not eating citrus, etc., but this was very mild salsa.  And it's only my lips, not inside my mouth.  I had a whopping coldsore a few weeks ago, I'm sure from low counts & sun, but that is pretty much gone.  And my hair thinning is....ugh....I know, enough whining, right?  Did anyone have good grow out after taxotere, even though still on perjeta?  Just wondering.  I think since perjeta is relatively new, my onc hasn't seen a whole lot of ses.  I usually have few ses...I say my body likes hard drugs :)   Anyhoo...I'm A-OK with it prolonging my life...and onc says she's using my good results to change others' regimens...so, just venting :)   Have a great Wednesday....this is my first Wednesday without treatment since Jan 10th!!!  Starting 2 weeks on/1 off w/chemo & herceptin moving to every third week w/perjeta.  I"M HAPPY & I think my body will be too!!!!   XOXO

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

    RonnieKay i think they dont know much re the side effects of perjeta alone since it is so new.  my onc looked into my mouth for the first time last visit.  i guess they know about that se.  do you have any problem w rashes? 

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  • kingcour
    kingcour Member Posts: 93
    edited July 2013

    Since ditching the tax, I have been great on just p/h. Full thick hair coming back, and the big D is even getting better! I think the taxotere is the bigger enemy in the combo- for me at least!



    I'm headed to Florida to the beach with my kiddos! Got great news from my surgery that there were no cancer cells in any of the breast tissue, only the tumor itself. My doctors were thrilled, so we planned a spontaneous trip with my kiddos! My mom is going along too, but I'm feeling like me again!

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

    Great news Kingcour. Have a nice trip.

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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2013

    Wow, Kingcour, that's great!

    Next week I get to try P/H alone for the first time--I'm a little worried about Big D with no taxotere to counteract that.

    Got my scan this morning so now I'm waaaiiiiting......Smile  My onc leaves on vacation tomorrow and she wanted to see it before leaving, so maybe I'll get a call quickly, which would be nice.

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

    Happy for you Kingcour...fun times ahead...and hair on your head!  Glad your Mom gets to go too...we grandmas love getting in on the fun :) 

    Hoping for good scan news for you, Carla!  I've had no D from perjeta...but navelbine is famous for constipation so I think they cancel each other out.  I'm waiting for the day I can be on just P/H :)  Shrink tumors, shrink!!!

    bhd1...The only rash I have is when I'm in the sun, and mostly on my arms. No other skin problems, other than being dry, and Cetaphil is helping that.  Is it causing a rash for you?  

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

    they think my rashes are from taxotere.  it gets worse each time.

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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2013

    Email from onc says scan is stable, so that's good (well, it would have been better if the lung mets had disappeared, but can't have everything!)  So off to the surgeon next week for a pre-op visit and set a date for mastectomy. Time to go read all the advice on the surgery threads....

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

    Carla that is great that you are stable. I hoe you stay like that for a long time

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  • aic
    aic Member Posts: 417
    edited July 2013

    Great news kingcour! Enjoy Florida! Awesome news too CarlaK!

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  • fujiimama
    fujiimama Member Posts: 800
    edited July 2013

    Carla - glad to hear that you're stable.



    Kingcour - Welcome to the chia-pet club. My hair is coming back thick and wavy. The first time it came back straight. Now it's just crazy. Have fun on vacation.

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

    I had my first scan on pht. today and there has been improvement. Yeah. I have been on this tx since march. The side effects are rough. For me, the worst is burning skin and fatigue. I also have arm swelling. It started last week after golf. Knowing the med is working makes the side effects more tolerable

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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2013

    Glad your scans look improved Barb but wish it was on a gentler chemo. Will they try you on P/H alone at some point?

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

    Thx Carla. I see my onc on thurs. lots to discuss. Glad you are doing well. When will the scan you again since you are in p and h alone?

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  • formygirls
    formygirls Member Posts: 916
    edited July 2013

    Barb,

    Really happy to read about your good scans. Yay for a tx that is working!

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