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Who's on Kadcyla/TDM1?

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  • Kite
    Kite Member Posts: 81
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    Denny- well poo about the vitamins. I thought if you took the B that it would boost a persons energy. I didn't now it was about the blood levels. That's how iron works. If you have anima not caused by low iron then iron supplements won't help. I have it from my arthritis. 

    Anyways... I'm happy Priscilla about your good results! It just makes my hopes soar. 

  • Woodylb
    Woodylb Member Posts: 935
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    Denise, i thought i would let you know, i had my pet scan done and got the results. Aromasin didn't workn, i have progression in my liver tumors and 7.8 SUV and it showed an onset on the spinal cord different ones , as well as lower back and the iliac bone.  It seems i may  be starting Xeloda . I am trying to stay away from afinitor because of its devastating side effects. How are you feeling on kacyla these days? Hoping you are well. Hugs.

  • denny123
    denny123 Member Posts: 1,475
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    Oh Woody,

    I am sorry to read that.  But Xeloda can work very well!  I have a lot of friends on it for years with good results.

    Praying for good results for you!

    I am the same-getting another round of chemo today-ugh.

  • Woodylb
    Woodylb Member Posts: 935
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    Thank you Denise and i am sorry too, you are still feeling lousy. I think i will go with xeloda plus nevalbine same as carbo gemzar 1 day and 8th day for nevalbine and xeloda 14 days then break. They don't seem very concerned with the spinal onset activity they are very worried for the liver and they want to stop it. I hope xeloda works. I hope kadcyla gets better with time and i hope it keeps working. Hoping for a good outcome for both of us and all the ladies on this board :)))

  • Pattycake12345
    Pattycake12345 Member Posts: 2
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    Because I'm 98% Her2+ and 2% ER+, my oncologist believes in addition to Kadcyla I should also take a med for the ER+.  I had another infusion of Kadcyla this past Tuesday and he wrote a script for Tomoxifen, but I haven't started taking it yet because we'll have friends visiting this week and I don't want to take a chance on feeling   bad while they're here.  I'm wondering with such a low percentage of positiveness for ER if I even need a med for it.  Is there anyone else who has a low percentage of positiveness for ER+ who takes a drug for the ER+ as well as Kadcyla?  With just the Kadcyla I feel pretty normal most of the time, and my blood work has always been perfect.

  • denny123
    denny123 Member Posts: 1,475
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    Woody-good luck with that new combo-please keep us posted!

    Patty--I had tamoxifen 11 years ago for about 3 months and it was very easy.  My onc stopped it though, when he found out how bad my liver was.

  • Woodylb
    Woodylb Member Posts: 935
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    Hello Denise, i hope you are doing better on Kadcyla and it is keeping regressing. I will start Xeloda alone tomorrow. However, i am having so issues with my HER2 status. At my dx in december i got a +2 borderline results si a FISH test was done it came back negative. Since i wanted a genomic test done , so i took the same biopsy sample to the american hospital in my country , before sending to germany for the test , they redid the pathology test and imunohistologie again HER2,test +3, because of the first FISH results they are repeating it again. The last one was seen by two different pathologists who said it was full of it. How can it be negative? Because this will change my whole treatment. Have you ever heard of such a case? Or A wrong FISH test? Because if xeloda does not work i do not have many options left...

  • Kite
    Kite Member Posts: 81
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    I know I have brought this up in the past but I am asking again to see if anyone new out there can relate. I am growing my hair back and currently taking Kadcyla. The first time I did chemo and stayed on Herceptin and my hair grew back with no problems at all. My hair currently is growing so slow it's discouraging! Has anyone else on Kadcyla experience slow hair growth?

  • Trish03
    Trish03 Member Posts: 65
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    Yes, my hair is growing very slowly, and it's very curly. I've been on Kadcyla since February. During that time I've had it trimmed two times-one of those this week-just to shape it up and get rid of the frizz. It's still really short but looks like a short style. My hairdresser said it looked like a bad perm. It's better after this recent cut. In 2003 my hair grew back much faster, and the curly texture returned to mormal. 

    All the best to you. Trish

  • MillieJ
    MillieJ Member Posts: 3
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    Mine grew normally, but came back white on the top and sides and dark in the back, so I had it colored.  I use a hairdresser who is a breast cancer survivor herself, and she understands chemo hair.  It's been a year since I shaved my head, and my hair would probably be to my shoulders if I did not get it cut.   I'm currently wearing it in a wedge cut which is very easy to maintain.

  • denny123
    denny123 Member Posts: 1,475
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    Hi Woody,

    I hope that you do well on Xeloda.  I have heard about wrong FISH tests and also the fact that a HER2Neu status can change.

    Well, if your status has changed, maybe you have more chemo options.

    Good luck!

    Denise

  • Woodylb
    Woodylb Member Posts: 935
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    Hi Denise, 

    Unfortunately or not i am no longer sure even with +3 On my pathology report , the FISH came back negative for HER2 but some of my oncs seem to think that i may benefit from herceptin go figure. I am still waiting for my Genomic testing results it should be in by next week to see the chemo sensitvity test and also the genes of my cancer. We will see if it will have any impact on the course of treatment. So far no major SEs on Xeloda except some fatigue and feeling sleepy. Some sensitivity along hand and feet and after i take the pills some dull pain along the liver and back. Let's hope it is working and not because it is progressing. :)).  My next scan will be end of along the first week of december. Every time i got bad news of about my cancer it wad in december and just a week before xmas, i hope this year will break the rule lolllll.  

  • denny123
    denny123 Member Posts: 1,475
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    Good luck!  I am like you-first dx'd in Dec.

    Ugh.

    When I had pains in my liver, my onc said that it meant that the Gemzar & Herceptin were working...and he was right!

    Use moisturizing hand lotion constantly.  When the peeling gets worse, you can use Vaseline on your hands and feet and wear cotton gloves and white socks in bed.

    If they think that Herceptin works, go for it!!!  If it wasn't indicated, they wouldn't be able to try it.  It kept me in remission for 6 years.

  • Woodylb
    Woodylb Member Posts: 935
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    Ughhhh is the right word ! I may go for herceptin specially if the results comes back to confirm it. Thanks for hands and foot advise , i hope  it takes a while before it starts ...i will keep you posted. Some oncs seem to think that if you show HER2 but still negative in FISH , there are some studies which show that it can be effective ...let's wait and see .

  • Trish03
    Trish03 Member Posts: 65
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    Well, my run with Kadcyla is over. My scans last week show progression in my liver. I don't know what comes next because I've already had PHT. This is scary. I'm afraid I'll end up on a drug with bad ses. Does anyone know what will be next? I'm also ER+/PR+. I really hate leaving Kadcyla. 

  • denny123
    denny123 Member Posts: 1,475
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    I am really sorry to read this!  I will find out Nov 14 if Kadcyla is still working for me, and I know your fear.

    Gemzar with Hercpetin worked well for me 11 years ago.  It put my extensive liver mets into remisssion after 9 months of tx.

    But when I went back on Gemzar for the nodes behind my sternum last year, it only worked for a few months.

    But it could be an option.  It was a lot easier for me than Kadcyla is.

  • denny123
    denny123 Member Posts: 1,475
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    Now I am getting black streaks in my toenails-left big toe is worse-black along the side.  2 other nails have a thin streak. 

    I learned when taking Taxotere to use Tea Tree Oil on the nails and cuticles since it is a natural antiseptic.

    Glad the weather will be cooler and I won't be wearing sandals now.

    FYI-if you have the discolored nails, don't wear polish-the nails need to breathe.

  • denny123
    denny123 Member Posts: 1,475
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    REMISSION!!!

    Saw my onc today and my PET scan showed no evidence of metastatic disease!!!!

    He didn't seem to want to take me off Kadcyla, so I asked if I could get a 75% dose. He asked what my side effects were, which are many.

    I asked if I could go back on Herceptin since I had been on it for 11 years, and he agreed. He also said that if (when) my cancer showed up again, that I could go back on Kadcyla.

    I won't start back on Herceptin until Dec 5. I won't know how to act being off chemo for 6 weeks!!!!!

    But happy!


  • Kite
    Kite Member Posts: 81
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    Denny--YAY! I'm right there with ya! I am stable too! I thought about being switched to Herceptin only but decided I would just stay with the Kadcyla. I think I'm getting used to the SE and they aren't as bad as they seem to be.

    Anyways, yay for us!

  • petjunkie
    petjunkie Member Posts: 39
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    Congrats Denny 123! Awesome news!

    I have been on Kadcyla for 19 months. The side effects were easy a first, but got worse over time. A few rounds ago we tried lowering the dose, but I continued to have extreme fatigue, bloody noses every day, bloody gums, neuropathy, nausea, etc. My oncologist said my body needed a break. So, just last week we decided to take a break. I'm doing Herceptin now, and getting Faslodex shots. We are going to scan every 2 months (CT on body, MRI of brain). At the first indication my cancer is growing, I'll go back on Kadcycla. Or, we may try Perjeta and Taxotere instead.

    I am relieved to finally be able to get up and out of the house now. I really felt tied to my bed-- too tired to get up, waking up to gushing nosebleeds every day, sleeping about 20 hours a day. There was very little quality of life there.

    But I'm also scared. I failed Tamoxifen and Femara and Armidex, so I don't have much hope that Faslodex will do anything. Herceptin alone has not worked for me in the past. I'm trusting my oncologist to keep and eye on things and be ready to start a new plan a soon as I need to. Trying to not worry and enjoy this time of feeling better.

  • denny123
    denny123 Member Posts: 1,475
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    Yay Kite!!! Hop Kadcyla continues to be mild for you.

    Petjunkie-good luck.!! Those SE's sound like mine. I am still on Faslodex. My onc feels certain that it is helping.

    My nurse told me that another patient there was on Kadcyla for mets and also brain mets, and showed NED. She is now on Herceptin.

    I love the idea that Kadcyla helps brain mets....just in case....

  • ronniekay
    ronniekay Member Posts: 657
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    Denny...that's the best news! Doubt you remember, but when I was first dx w/mets to my liver (3rd dx), I logged on to Stage 4 (I'd avoided it like the plague...can't understand those not stage 4 coming here!), and there was your 10 year celebration post! You gave me the hope I needed so badly...and you're still at it! So, congrats & thank you :D. When you suggested 75% due to ses, is that when your onc said no more chemo & you suggested herceptin? With my mets dx, my onc said I was one she's wished she could've kept on herceptin from the very start but I was stage 2..."healed"....same after 2nd dx. Dang! She wanted me on Navelbine...which got me to stable quickly..forever, but w/her out w/medical concerns, my new onc said enough! So, hercep/perj/femara (I thought femara failed me last time but he thinks it may have stopped mets elsewhere). I'm so happy and feeling better after only 3 weeks "clean!" My ses weren't bad...but I think they were beginning to wear me down more...maybe more mentally????

    Best to all...Kite...may you have the same great response and Pet...I'm with you...hoping our oncs are tuned in to our bodies...they're a big part of our lifeline!!

    Denny...will they add perjeta to your cocktail? Personally, I think it's evil....maybe a necessary evil for me!

  • denny123
    denny123 Member Posts: 1,475
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    RonnieKay-I asked about Perjeta, but it is't an option for me. I have had some chemos that keep me from getting Perjeta.

    But since I counsel ladies with Stage 4 BC through Reach to Recovery, I have heard a lot of very good things about it.

    Yes, my onc kind of asks me what I want next, since I do so much research. And he said that he was glad that I mentioned going back on Herceptin.

    I had told him that I would stay on Kadcyla if he thought that I should. But the main thing that I wanted to know was if I could go back on it later if needed.

    I know that some chemos can not be used again after they fail the first time. But Kadcyla, since it is a true "chemo" doesn't fit that profile.

    Herceptin did keep me in remission for 6 years from the evil liver mets, and my liver is still clear.

    There are several of us who are/were on Kadcyla and most had very few SE's, except one other lady, who also had brain mets-they were cleared with Kadcyla.

    Best of luck to you!

    Denise

  • Woodylb
    Woodylb Member Posts: 935
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    Denise, yayyyyyyyyyyyyy love your news it is an early xmas gift congrats and God bless you always. my news are as follows : i turned out to be extremely her2+ . xeloda was barely holding the disease my MOs preferred to stop it all together and start the cleopatra trial which seems to be the most successful according to the Corcoran report. herceptin+perjeta+paclitaxel . I get weekly reduced doses of taxol one week rest, and every three weeks i get hercpt, perjeta and xgeva. the taxol is for four or six months. the rest if all is well for life or as long as it works. big big HUGS to you our hero !!!!!

  • denny123
    denny123 Member Posts: 1,475
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    It has been 7 weeks since my last Kadcyla and it is so nice to get some energy back!

    I had extreme fatigue but that is slowly leaving. My right eye quit the insane watering. Constipation getting a little better.

    Sure feeling better mentally, too! I am back on Herceptin every 3 weeks, and praying for a long remission.

    In 2 days, on Dec 14, I will start on my 13th year since being dx'd with Stage 4.

  • Woodylb
    Woodylb Member Posts: 935
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    Denise, great news, i hope you get your energy back fully very soon. And i hope you stay in remission for a long time. I am so happy for you.xoxoxox

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
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    Great news Denise! Hoping for 14 more for you.

  • Becs511
    Becs511 Member Posts: 118
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    I will be starting on this next week, after 7.5 months of weekly Taxol. Everything cleared up on the Taxol (the original tumor, 3 of 4 lymph nodes, sternum and lungs). Since I still have one stubborn lymph node my MO wanted to change things up. I will be getting it every three weeks, along with perjeta and herceptin.

    I read through the thread and it looks like people's SE really varied, but is there anything specific I should expect? Any words of advice?

  • denny123
    denny123 Member Posts: 1,475
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    Hi Becs,

    Are you sure you are still going to get Herceptin with Kadcyla? Kadcyla is a super-Herceptin and typically they aren't given at the same time.

    And yay to your leukemia survivorship!!!!

    Denise

  • fujiimama
    fujiimama Member Posts: 236
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    I join the group. My first infusion is tomorrow at 10:30. I've been reading the thread. Thanks for your insight. I have a BC tumor in my upper lung that hasn't responded to hormonal treatments. Thinking it's getting smart to herceptin. I had been on perjeta and herceptin for two full years. Hoping super-herceptin does the trick.