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Who's on Kadcyla/TDM1?

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  • ronniekay
    ronniekay Member Posts: 657
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    Yikes Sue...hope your onc can get you something that will take care of your headaches.

    I'm on different txt (navel/perj/herc), but had some mouth sores. My onc put me on Acyclivor that I take on days 7-11.  It's like a miracle...no sores anymore.  I salt water rinse at night but the med works.  Maybe it would be an option on kadcyla????

  • MemaSue56
    MemaSue56 Member Posts: 2,061
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    Thanks RonnieKay - Headaches have lightened a little, but nausea still plagues me.  Glad the acyclovir is working.  I have used it often for cold sores on my mouth.  In fact, had quite a few pop up after WBR, but if I take it right away, it's gone in 2-3 days and never blisters.  Other than that I haven't had any trouble since finishing radiation, now it's mostly just dry mouth at night.  Hopefully those having trouble will ask their onco's about it.

    I snooped....and since I will be on a girls road trip...thought I'd wish you a HAPPY Big 60th BIRTHDAY in 4 days.  Hope you have something wonderful planned.  I hit that mark in November...was a prayer since dx that I'd make it at least til then.  Looks like I'll hit that milestone and several more years to boot, God willing!!

     

      image

    Love, Prayers, & Positive Healing Energy,

    Sue

  • MemaSue56
    MemaSue56 Member Posts: 2,061
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    Thanks RonnieKay - Headaches have lightened a little, but nausea still plagues me.  Glad the acyclovir is working.  I have used it often for cold sores on my mouth.  In fact, had quite a few pop up after WBR, but if I take it right away, it's gone in 2-3 days and never blisters.  Other than that I haven't had any trouble since finishing radiation, now it's mostly just dry mouth at night.  Hopefully those having trouble will ask their onco's about it.

    I snooped....and since I will be on a girls road trip...thought I'd wish you a HAPPY Big 60th BIRTHDAY in 4 days.  Hope you have something wonderful planned.  I hit that mark in November...was a prayer since dx that I'd make it at least til then.  Looks like I'll hit that milestone and several more years to boot, God willing!!

    image

    Love, Prayers, & Positive Healing Energy,

    Sue

  • denny123
    denny123 Member Posts: 1,475
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    Diane-I agree with Sue-that is thrush.

    Tish-so glad that your liver enzymes went down!  I know that so many meds can cause a fluctuation. My onc was wrong 10 years ago when he said that he didn't think that my liver mets would go away.  I was NED just a few months later.

    Sue-I don't get the headaches, TG.

    After my 5th tx, I didn't have the usual bloody nose for a few days.  But instead, I always have this fluttery feeling in my chest.  My nurses said it is from the steroids.

    The nausea and extreme fatigue continue.

  • Ceesun
    Ceesun Member Posts: 1
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    I have been on kadcyla for a little less than one year. Does anyone get a sort of light headed feeling on this...a few seconds of feeling a little whoozy? Not during infusion but in the week or so after.  Thanks, Ceesun

  • denny123
    denny123 Member Posts: 1,475
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    I get that feeling once in a while, but I blame it on the Kadcyla that I am on.

  • DianeKS
    DianeKS Member Posts: 36
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    Well, feeling better this weekend.  Back to 'normal'....this Thursday second treatment to begin. Had a spontaneous nose bleed about day 6, platelets had dropped to 75, liver enzymes were also up. Four days later platelets back to normal, liver enzymes better...not quite normal values.  Great to hear yours have come down Trish.  Mouth better...not thrush...after reviewing previous posts, think it may have been more dry mouth.

    No lightheaded feeling or woozyness.  

    Hope that I'm feeling ok for yurt camping four days after this second treatment coming up.  Going to do some pre planning early this week to get ready.

    Diane

  • denny123
    denny123 Member Posts: 1,475
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    WOOHOO!  Got PET scan results today and Kadcyla is working!  My cancerous nodes behind my sternum have a marked decrease in size and SUV.

    The prevascular node was 1.6 cm x 1.2 cm with SUV score of 11.3..It is now less than 1 cm with SUV of 1.8.

    The retrosternal node was 3.4 x 1.9 cm with SUV of 10.2.  It is now less than 1 cm with SUV of 1.7.

    The supraclavicular node is no longer visible.

    I had 5 tx of Kadcyla and will now have another 4 month's worth.

  • Woodylb
    Woodylb Member Posts: 935
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    Fantastic news dear Denise Wowwwww the decrease is humongous ! Wonderful i hope the next ones would get you NED again as it looks very promising. keep going and never stop until you kick cancer's a## again. ThumbsUp

  • Brooklyn
    Brooklyn Member Posts: 5
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    that is wonderful Denise!!! So happy for you! Hopeful NED is right around the corner :)

  • DianeKS
    DianeKS Member Posts: 36
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    Awesome news Denny123!  

    Did anyone have increased bone pain where mets are before getting better.  I just finished 2nd treatment Thursday and today (day 3) I am having lower back pain worse than before I started the TDM-1.  Hoping that the drugs are doing there best to get rid of the cancer, and it will eventually get better.  Any similar experiences?

    Thanks,

    Diane

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

    Diane-I don't have bone mets so can't help you!

  • Trish03
    Trish03 Member Posts: 65
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    Diane, lower back pain is the main se I get from Kadcyla, and I don't have bone mets. It's not every day, but when I have it, it hurts to stand or walk more than a few minutes without sitting. My PCP prescribed generic Cataflam, which does help some. "Pain that affects the bones, muscles, ligaments, and tendons" is listed in the common side effects. I hope your pain is caused by the Kadcyla kicking the bone mets. It's very frustrating not knowing if pain is part of the problem or the solution.

    All the best to you.

    Trish

  • Trish03
    Trish03 Member Posts: 65
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    Denny, I'm thrilled to hear about your dramatic decrease! Kadcyla seems to be the drug for you. I hope you continue to see positive results.

    Trish

  • MemaSue56
    MemaSue56 Member Posts: 2,061
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    Denny - WONDERFUL news!!!  Gives me even more hope.  Chest, ab, pelvis CT showed some changes in my node mets too.  Altho I don't trust that test as much as PET, but will take it!

    Diane - I had 4th Kadcyla on Monday...yest and today back hurting.  But I have terrible mets in lower spine and also found that too much standing/walking aggravate all my degenerative discs etc.  Monday was 1st day back from 9 day road & sightseeing trip, so blame back pain on that.  Hoping I am right and that it is not an se of Kad.  Hoping your pain lessen soon.  (((Diane)))

    Trish - I wrote that med down.  Will look into it if this is an se of Kad.  Thanks!

    Ceesun - I get whoozy and light headed a lot, but am trying to find ENT as my right ear still jacked from wbr.  Hoping it's inner ear and not result of rat bastard or Kad.  Will keep you posted.

    I still have horrible 'dry mouth' to the point of affecting my ability to eat, not that I mind, could stand to lose a few pounds...LOL.  Salt/water rinses and biotene do help quite a bit. 

    Prayers and positive healing energy to you all!

    Sue 

  • Priscilla0929
    Priscilla0929 Member Posts: 24
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    I am on my 19th treatment of kadcyla. I had progression on Herceptine in January 2013. Doing well on it - no lesions on my liver last PET

  • denny123
    denny123 Member Posts: 1,475
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    Glad that everyone is doing well.

    I am wondering what will happen long-term, IF this stuff puts me into remission.  Hope I can go back on Herceptin.

    Can't imagine being on Kadcyla indefinitely, unless they can do a 75% dose.

  • denny123
    denny123 Member Posts: 1,475
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    I am a trainer/coordinator for Reach to Recovery, a volunteer program for the ACS.

    I have been helping a lady with Stage 3B BC and she was just put on Kadcyla.  So this will be interesting...as we compare notes.

  • Woodylb
    Woodylb Member Posts: 935
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    Hi Denise ,

    Glad to hear you are doing well and lucky is the lady you are counseling. I hope kadcyla gives a long run , i think personally they will keep you on it as long as your body can take it and as long as it is working. I am not HER2+ but i know a lot of ladies who were on it for a long time then it was stopped either because the cancer became resistant to it or because it started to give them heart problem. I met a lady last week who is tnb she was on herceptin for a long while then it stopped working, last month she was put on kadcyla she could not tolerate it and the progression continued , now she was put on carbo gemzar . She has been tnb for 6 years. Only 47 years old. I hope the kadcyla will keep working for you for a long time with less and less SEs. Be well dear Denise and god bless you . :))

  • Kite
    Kite Member Posts: 81
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    Thanks for sharing that! It gives me hope. I just finished my 3rd treatment last week and had a PET scan yesterday. Waiting waiting... Still waiting on my hair too! Anyone else have slow hair growth on Kadcyla?

  • denny123
    denny123 Member Posts: 1,475
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    Thanks Woody.  I can't imagine staying on Kadcyla long term.  I was on Herceptin for 11 years and hope to get back on that.

    Kite-My hair thinned on Gemzar but now that I am on Kadcyla, it is growing at a normal rate.

  • Woodylb
    Woodylb Member Posts: 935
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    Hi Denise :))

    Good to hear from you and know you are well. Good to know your hair is growing back at a normal rate :)) at leat kadcyla has some good effect :))). If Herceptin makes more comfortable and it can stop the stupid disease then i hope you can go back on it and stay well. Still waiting for my PET in september hoping Aromasin is at least succeding in holding back the disease. But i am loosing weight, you think it is normal after the chemo and i also read aromasin causes anorexia, in all cases i am holdingmy fingers   crossed.  :))) . You are in my prayers always. Hugs. 

  • Kite
    Kite Member Posts: 81
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    I got my PET scan results and they are awesome! "No residual disease on my spine or pelvis" YAY! I hope I can ride this train for a long time. 

  • Woodylb
    Woodylb Member Posts: 935
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    wonderful news Kite i hope you keep flying for a long time yayyy ! :))

  • CJRT
    CJRT Member Posts: 221
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    fabulous news kite!!!

  • springwatch
    springwatch Member Posts: 243
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    I am not Her2 positive so I hope you will forgive me gate-crashing your thread,  but I thought you might be interested to read that our health service here in the UK has refused to fund Kadcyla because it will cost £90K or $150K for 14 months of treatment. 

    I personally feel you cannot put a price on those precious extra months you may get from treatment, so I was very disappointed to read that the our health service has refused to fund yet another cancer drug. I know some of you here have had some excellent results from this treatment.

    http://www.theweek.co.uk/health-science/59873/kadc...

  • Trish03
    Trish03 Member Posts: 65
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    I just want to share good news. I had scans Monday, and the tumors in my liver are still stable...WooHoo!! Also, my liver enzymes are good. I still have fatigue on some days, but that's the worst se. I've been on Kadcyla since February and hope I can stay on it for a long time. Praise the Lord!!!!

    All the best to everyone. Trish

  • Kite
    Kite Member Posts: 81
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    Yay Trish!! I'm so happy for all the success the ladies on this thread have had with Kadcyla. I too have fatigue. It can be killer some days! I've learned that if I just stop what I am doing and close my eyes for 20 minutes every couple hours I feel so much better. I realize this may not be do able all the time with work, kids etc but if I can I always try. I'll even pull into a parking lot and do it. It makes such a difference for me. 

    Enjoy the good news! 

  • denny123
    denny123 Member Posts: 1,475
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    Good luck with your scan Woody!  Keep us posted!

    YAY Kite-glad it is working!  How long have you been on Kadcyla?

    Too bad we can't add that to our history....it would be a good thing to see how long we have had it as we report our scans.

    I wish naps would help me when I am horribly fatigued.  But I can't nap.  I am really dragging by bedtime, but it still takes me a long time to fall asleep.

    WooHoo! to Trish!  Looks like this stuff is our miracle!

    Sorry Spring, that it isn't approved for you, but it is used for Her2Neu postive anyway.  I hope that they can find something that will work for you.

    I have had 9 tx so far and a few days ago, I had really bad throat tightening.  Have had it once in a while, but this was pretty scary.

    Lasted one day and I am still here.....something new to report to my nurses....sigh.

  • Woodylb
    Woodylb Member Posts: 935
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    Hi Denise, i am so glad you posted , as i was about to post for you to inquire about you. I am so happy that this drug is working for your Ladies even though the SEs look a little tough. Still i am very thankful that is is working and is worth it. I am glad you are well even with fatigue as long as it is working, it is worth it. Yayyy. You are still in my prayers as are most of the ladies on BCO. :))). 

    Trish and Kyte yayyyy for both and i wish you both continuity stable sound good in any cancer ...

    Thanks Denise for your wishes and i will keep you informed as i decided to have a genomic test done on my liver biopsy specimen as well as a CISH  test not FISH. i will let you know what comes out of this lollll. Hopefully something useful. My MO said until now we don't need the genomic but if things get bad ( he does not think anytime soon) it may come in handy. We will see. 

    Wishing you tired less days and please keep me posted. Hugs