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Who's on Kadcyla/TDM1?

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  • ronniekay
    ronniekay Member Posts: 657
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    Hi Trish...I'm glad you said this is a wandering thread, cause I'm not on kadcyla, but I saw you posted about your liver enzymes elevating.  Mine have been bouncing around & I've been concerned too.  My AST & ALT both jumped 15 points this month..still in normal range, barely.  My TM's are good. I did read that muscle strain can affect #s and I've felt so good lately (16 mos on navel/perj/hercrp) that I've been much more active, I emailed onc nurse & she said the enzymes fluctuate & not to be too concerned...but we know it's hard.  My onc keeps saying blood tests, scans & how you're feeling are the test questions & it sounds like you're feeling good.  Sending positive vibes for good scans in 2 weeks!

  • Trish03
    Trish03 Member Posts: 65
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    Thanks to the ladies who responded about elevated enzymes. I know that Kadcyla can mess with liver enzymes, but I don't know how much or what that means as far as treatment. I just hope this rise is caused by the drug and not by progression as it was when I was on PHT and saw a rise after dropping Taxotere. 

    I'd really love to continue with Kadcyla because it has been so easy for me...almost no side effects. As I've mentioned before, I have lower back pain, but the Cataflam has helped a lot with that. I just passed my one-year mark with mets, and I think It's starting to sink in that this is for forever. My life is going to be a constant roller coaster. I'm actually looking forward to my scans on June 12. I want to know what's happening with my liver.

    All the best to everyone.

    Hugs, Trish

  • Trish03
    Trish03 Member Posts: 65
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    tic, thanks for posting about the Navelbine. I hope you have wonderful results from it. I've been wondering what might be next after Kadcyla, especially since my liver numbers are up. 

    Denise it's encouraging that you had such good results with Gemzar. I also get Echos. I had a Muga 10 years ago at first dx, and this is so much easier. 

    CJRT, I hope your liver functions continue to be good. Thanks for your response. 

    Hugs, Trish

  • Kite
    Kite Member Posts: 81
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    Hi ladies,

    I've been lurking here for a few days. I'm getting ready to start Kadcyla on Wed. I'm looking forward to the change. I've been on PJH and have not tolerated it well at all. 2 yes ago I did TCH and had a little trouble but nothing like now. The Taxotere is kicking my butt. Or the Perjeta and Taxotere are. Can perjeta make you sick? My docs say no just diarreah. I'm just not convinced. Also does anyone know of or experienced being put into early menopause from chemo? (Not because of hormone blockers either.) I don't have Hormone positive cancer so that's not it. I just keep having these horrible hot flashes and it's really really tender to have sex. Sorry I know this is all over the place. My mind is just going a mile a minute. 

  • gonegirl
    gonegirl Member Posts: 1,022
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    kite. Taxol kicked my butt too and it did put me into early menopause. The menopause creates challenges in the bed. Maybe check with your gynecologist about an estrogen cream. Since we're HER2+, we don't have to worry about estrogen. The estrogen rethickens the vaginal walls, etc

  • Kite
    Kite Member Posts: 81
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    Thank you Gritgirl. I appreciate your reply. I read that Perjeta can cause hot flashes but the other thing is what has me thrown for a loop. I have an appt with my gyno in August 

  • CJRT
    CJRT Member Posts: 221
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    Hi Kite- I am Er+ so I started taking Tamoxifen after my initial chemo and then Zoladex with my mets. I had just had a baby about 12 weeks before starting TCH at the time of my initial diagnosis and can tell you I got horrible hot flashes with the chemo and temporary cessation of my cycles.  (Not sure if this was the chemo or postpartum) My cycles returned after the chemo until I started Zoladex.  My hot flashes with Tamoxifen and Zoladex were much less in intensity and frequency that I had had on chemo. You have many more options related to the sexual side effects, as gritgirl mentioned. If the over the counter things don't help, I know a friend's MO prescribed her an estrogen cream and even discussed hormone therapies with her if the menopause symptoms remain and are problematic for her. My MO suggested over the counter Primrose Oil for hot flashes and low dose Effexor if it really bothered me.  Good luck on Kadcyla!  For me, it is a breeze compared to my TCH (Taxotere/Carbo/Herceptin).

  • denny123
    denny123 Member Posts: 1,475
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    Kite-please check with your onc before taking an OTC product like Primrose Oil, Soy or Black Cohash.  Since they have estrogen, they can feed the cancer.

    Topical creams are a much better option, as well as Effexor.

  • CJRT
    CJRT Member Posts: 221
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    Denny and Kite- I certainly didn't mean to imply for Kite to try anything without consulting her MO first.  Sorry if it came across that way.  I was just sharing what mine had recommended.  As far as the estrogen-like properties, Kite indicated that she was not estrogen positive so the typical estrogen precautions don't apply to her.  However, in the research that I have done, I have not found anything to suggest that primrose oil has estrogen-like properties like soy and black cohash do.  If you happen to know any research that links primrose oil to estrogen, can you please forward it to me.  Though I don't take it myself, I have several friends with estrogen-positive cancer that do, and they'd be very interested in learning more.

  • denny123
    denny123 Member Posts: 1,475
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    oh, no problem!  We all hear different stuff.  I have been doing research for 11 years since I was first dx'd and Evening Oil of Primrose keeps popping up.

    I always read conflicting stories about soy.  

    I just avoid anything that might possibly cause the cancer to worsen.  

    I am a certified coordinator/trainer for the Reach to Recovery program of the ACS, and counsel advanced stage and recurrence patients in PA and Ohio.

    Just sometimes words of caution might help.

  • Kite
    Kite Member Posts: 81
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    Thank you CR and Danni! I really appreciate the info and the looking out 8)!

    I talked to my onc this morning and she said to try some OTC cream and thought if it was menopause and not a SE from the chemo then my overy would start working again. So I will wait and see.

    My hubby lives out of town for work. He's a surveyor for the pipeline field. So we don't get around each other a whole lot! I will have time to heal! Lol.

    First day of Kadcyla today! I'm so relieved to be getting something that will help me and not make me so sick. Hope everyone is feeling good today.

  • ShariC
    ShariC Member Posts: 1
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    I just started Kadcyla last week and my platelets dropped to 5!! I needed to have 2 platelet infusions to bring that number up! Has anyone else had this side effect?

  • denny123
    denny123 Member Posts: 1,475
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    My platelets have been low, but not too low...last count was 124

  • Kite
    Kite Member Posts: 81
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    dang! That's low! I don't know mine yet. I just had my first infusion yesterday. So far I am tired, really tired and nauseated. It's no fun but not as bad as Taxotere! 

  • Kite
    Kite Member Posts: 81
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    Update- I had my first Kadcyla treatment Wed June 4. I had nausea, extreme fatigue and stomach aches. Other then feeling icky for about 2.5 days I've done fine. Thank goodness!

  • denny123
    denny123 Member Posts: 1,475
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    Kite..hope that you continue to do well.  I like Zofran for the nausea.  Compazine makes me more fatigued than I usually am.

  • Brooklyn
    Brooklyn Member Posts: 5
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    Hi ladies! I have been on kadcyla for 18 months now and scans yesterday remain NED! This is a very tolerable chemo and I hope everyone does well on it for a very long time! Thinking of you all!!

  • denny123
    denny123 Member Posts: 1,475
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    Thanks Brooklyn!!!

    Sure gives me hope!!!  Does anyone have sore knees on this stuff?  Doesn't seem like arthritis, since they aren't worse when it rains.

    Unless the Faslodex is doing it.

    But I DO know that the Kadcyla is giving me constipation.  I always eat a ton of fruits and veggies.  Now have to add Miralax, Colace, Philips Milk of Magnesia.....geesh

  • DianeKS
    DianeKS Member Posts: 36
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    Well, I finally had an ECHO instead of a MUGA.  Sooo easy, quick results...EF was 55-60%...Yay!!  Most likely treatment will start next Thursday or Friday.  Feels like I may have a progression in my hip :(

    Hoping this treatment kicks this stupid cancer to the curb!

    Thanks for all your post,

    Diane.

  • denny123
    denny123 Member Posts: 1,475
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    Sure hope that you don't have progression!  

    The ECHO is a thousand times easier than the MUGA!!  My onc said the results are just as good.  Work for me....

  • MemaSue56
    MemaSue56 Member Posts: 2,061
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    I get my 3rd tx on Monday, so far my blood work is holding steady.  I too am concerned about these things that Diane and Trish mention, so am also thankful for any and all input from you ladies that have experience with drops in EF or rises in enzymes etc.

    Positive Healing energy to you all,

    Sue

  • Trish03
    Trish03 Member Posts: 65
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    I had my 7th Kadcyla treatment Monday and scans last week. My tumors in my liver are stable, but my liver enzymes are gradually rising. My onc thinks the rise is due to the drug and not the cancer. I know that rising liver numbers are a se of Kadcyla; I just hope they don't cause me to have to go off the drug. This is definitely the easiest chemo I've ever had. I've had no nausea, just fatigue for 2-3 days and some constipation. I also had an echo last week; EF was 55-60%. Platelets have dropped a little but not seriously low. Fingers and toes crossed that I can stay on this one for a while. I have no idea what would come next.

  • ronniekay
    ronniekay Member Posts: 657
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    Trish...yahoo for stable in your liver!  Sending all our enzymes a msg that lower is better!!!

  • okimie
    okimie Member Posts: 3
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    Just had my 3rd treatment on Kadcyla today. The 1st dose hit me hard, lost 15 lbs in one week! Dry mouth, nausea, tired and headaches mostly. I have to do weekly bloodwork and liver profiles 2x a month. LDH,  ALK, and Ca27*29 all spiked. I get a Pet scan after next treatment if levels dont go down. 

  • dawn16
    dawn16 Member Posts: 1
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    Hi Trish,

    I've been on TDM1 since June of last year.  I have mets to my bones, liver, lung and a large lesion on my chest.  No real side effects to speak of,  a little sore inside my nose but that's it.  I've had 4 scans since my first infusion and they continually got better.  3 weeks after my first scan, the lesion on my chest wall disappeared!  My last scan about 1 month ago came back "NED"!  YAY!  Words I thought I'd never hear.  My next scan is in 10 days,  let's see if it continues.  This drug is fabulous.

     

    All the best

    Dawn

  • ronniekay
    ronniekay Member Posts: 657
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    Kim...will definitely be hoping to hear scores plummeting!  With ses like that...it better be doing the job!!!

    Dawn...happy dancing for you....amazing words we all wish we could hear!!!!  

  • DianeKS
    DianeKS Member Posts: 36
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    Well, I started last Thursday.  No reaction, very few se, some heartburn, nausea, fatigue, and today a change in my mouth...like the beginning of mouth sores if that makes any sense.  Tolerable, but more than my previous treatments, so I'm adjusting...one day at a time.  Family keeps me busy with end of the year windups and soccer for both girls 11,9.

    Trish...great news for you, thanks for starting this thread.

    Kim...sorry you had such a hard time first go around, amazing to me how different we all are.  Hoping for good news on your enzymes.

    Dawn... I agree with RK on this one!  So amazing to hear those words even though not spoken to me.  I never ever thought I would possibly get NED, ever!  It certainly gives me pause to think that it could happen.

    an aside question...did you have a hard time getting approval for the drug in Nfld?

    Hugs to all,

    Diane.

  • denny123
    denny123 Member Posts: 1,475
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    Trish-Yay for stable!  Hope it continues and that your enzymes stablilize.  My PET is July 8, so I will ask about mine.

    Okimie-Good luck!

    Dawn!!  Yay for NED!!!  I sure hope that I hear those words again!

  • Trish03
    Trish03 Member Posts: 65
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    Kim, I'm sorry that you have had such bad se's. I hope it gets better for you and that your numbers go down. I can't imagine losing 15 pounds in one week!

    Dawn, that's amazing that you're NED after having mets in so many places. So, it sounds as though it took you almost a year to get to NED. That's really encouraging to hear. I hope your next scans show positive results, too. You are definitely a Kadcyla success story for the rest of us. I don't ever expect to be NED, either. I would be totally shocked.

    Diane, I hope your se's continue to be mild and that you don't develop mouth sores. I don't know if that's a common se of this drug or not. I don't recall hearing about anyone having them.

    I have an update: A few days ago I wrote that my tumors are stable but my liver enzymes were rising. The onc felt that the rise was caused by the drug since the tumors are stable. When I saw my onc last week for treatment, he said he wanted me to come back in a week to have my blood checked again to see it there's a trend. I was shocked that this week my liver enzymes went down dramatically!!!! I can't imagine why, but I'm thrilled. I asked my onc last week if, since my tumors are stable, they might start to shrink again, and he said no. I hope he was wrong and this drop is cause by a reduction in tumor size. It gives me cause to hope. I'm thankful for stable, but I would love to get to NED on this drug.

    All the best to everyone.

    Hugs, Trish

  • MemaSue56
    MemaSue56 Member Posts: 2,061
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    Congrats Dawn!!  Wonderful and inspiring for the rest of us.  Prayers that your next scan is NED also!! 

    Diane, are you on steroids?  Do you see any white spots inside cheeks or throat area?  If spots are white, could be thrush and you need to be gargling with Nyastin.  If no white spots, try a rinse of 1 tsp baking soda in 8oz of water.  Helps with the dry mouth too.

    Trish - will say extra prayers that your onco is wrong and that you get an NED!

    I had my 3rd on Monday....been off steroids since 6-10 and have had a few minor headaches.  But end of last week and thru today, my headaches are more frequent and much more painful and I have had so much nausea that I'm eating Prochlorperazine every 6 hours and still not feeling well.  Anybody have any advice.  Thought it might be gall bladder but now the headaches, am wondering if just se's.  Okimi - are you still getting similar se's?

    Sending lots of positive healing energy out to all of you,

    Sue