Who's on Kadcyla/TDM1?

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2017

    Wieg-a "spot" was seen in my liver and I had 3 liver biopsies, all of which missed the spot. So it was assumed to be nothing.

    Had my mast, chemo and rads. Then my CT scan showed major involvement in my liver. Of course I questioned why I had to have the mast, that I thought was useless.

    Some surgeons think that it is still okay to remove the breasts even if Stage 4, but that is debatable.

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  • Wiegp22
    Wiegp22 Member Posts: 268
    edited January 2017

    Denny 123,

    Ehat are they treating u with for the liver ? Do you believe you should have surgery on stage 4? Any success stories with that?

    Thanks, Paula Wiegele

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2017

    Wieg-my liver problem was in 2004. They did a liver resection then. So they cut out part of my liver.

    And I had Gemzar with Herceptin to clear out the rest of the tumors. But I needed systemic treatment with chemo to prevent other tumors from growing.

    I was on Gemzar with Herceptin for 9 months, until my liver was clear. Then I continued with only Herceptin for 6 years.

    Now I have a recurrence in 8 nodes in my chest and neck, so I an now on Kadcyla.

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  • Pasque
    Pasque Member Posts: 25
    edited January 2017

    I did get my 3rd treatment yesterday. I get ondansetron for my stomach first then the Kadcyla. They have me wait a half hour after to observe me. I had a fair amount of pain after the 1st two treatments. Today has been really good. Hope it lasts. My nose isn't as dry as when on THP. My eyes still water some. My feet are a bit numb. I can say the tumor markers went down some. Doc said to wait till the next treatment or 2 to get excited but it looks good. I will take that. They had not went down much the last 6 months. I hope things are going good for everyone. It is nice to be able to talk to people who understand.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2017

    Pasque!

    Yay and sounds good. I get the Zofran (easier to spell) tablets at home, but have to wait for a week after getting Emend and Aloxi for nausea as IV's.

    The Emend works like Zofran.

    I had occasional foot numbness when I first went to bed..for a few months, but haven't had it lately.

    For some reason, I get less nausea after treatment than when I first started. I have been on Kadcyla for 3 years.

    I also found that Emetrol liquid, an OTC med helps with nausea.

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  • MargaritaMS
    MargaritaMS Member Posts: 199
    edited January 2017

    Glad to hear that things are going pretty well for you Pasque! That's good news!

    Can't say that I've had much problem with nausea but I have been dealing with the numb feet. I'm glad to know that it isn't just me. It is always worst at night when I'm trying to get to sleep. Last night, I even had what felt like a cramp in the arch of one of my feet. I used an OTC muscle/massage oil that has some menthol properties and it provided enough relief that I was able to get to sleep. It's a bit better today. Denny123, I'm encouraged that your foot numbness has subsided over time. I was a bit worried that it would increase like when I was on Taxol but perhaps it won't. For now, it is certainly tolerable and worth it considering the good results.

    Keep on, keeping on!

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  • ESCORPION
    ESCORPION Member Posts: 102
    edited January 2017

    Hi everyone

    Glad to hear from you lovely ladies.

    I talk to my doctor today about changing Zometa and he is going to put me in the old medication pamidronate. Every three monts...

    From the last infucion with Karcyla and zometa, I have a terrible numbness in my right arm that is almost permanent....it hurts so much the numbness that is dificult and painfull to even grap things with my fingers ...

    He is going to check my neck, next time to see if I have something happening with my nerves.

    I have a question , how many others treatments there are after Katcyla that targets her2??monoclonal antibody?

    What I found out is that my Goverment does not pay for any other treatment after Katcyla...because of the price.

    How works in USA?


    Have a great night!!!

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2017

    Sorry to read that escorpion. Where are your mets?

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  • MargaritaMS
    MargaritaMS Member Posts: 199
    edited January 2017

    Escorpion, I'm sorry to hear about the pain and discomfort that you have. I hope that your docs can get that under control soon.

    Regarding other HER2+ treatments after Kadcyla, I really don't know the answer to that question as there are so many options these days depending on all the properties of each individual's case. What I do know is that my doctor has assured me that there are "many more" options in the arsenal that can be tried if/when Kadcyla is no longer an option. I have to believe that in Canada, there are still many options for you that your government will provide. But hopefully, you can get the pain and numbness under control and stay on Kadcyla.

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  • ESCORPION
    ESCORPION Member Posts: 102
    edited January 2017

    Thanks for you answers,

    I was trying to put my diagnosis to be public but I didn't find where I have to do it

    I have metastatic in my bones..

    When first I was diagnostic with metastatic , my doctor didn't point exactly the places that I have it

    Pelvic, left six rib, collarbone, left scapula

    Is the ones I aware of it, and Lymb nodes.

    I think there are things that doctors do not explain WELL when you get the diagnosis , specially my doctor.

    But I have to say that I feel good with Katcyla....hoping that we all stay for long time!!

    What I know is that the new drugs target her2 won't be covered by government ... I will have to go to trials in order to have access . But old drugs of course the ones that has been aproved and use for long time , the government will cover...

    Thanks for answers!!!have a great day!!

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  • ESCORPION
    ESCORPION Member Posts: 102
    edited January 2017

    Have a GREAT DAY EVERYONE!!!

    Dont You guys find strange that almost every sickness that exist , we know what Is causing the sickness the mayority ...) but somehow we still don't know what is causing breast cancer??? How come??? With the technology we have???Is hard to belive ...

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2017

    Escorpion- I hope that you can stay on Kadcyla for a long time. Xeloda works well for bone mets.

    The problem with treating breast cancer is that a woman's hormonal characteristics are so different, depending on her various levels.

    So it is hard to find a "one size fits all" chemo to treat us.

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  • ESCORPION
    ESCORPION Member Posts: 102
    edited January 2017

    I already ask for xeloda, the Ontario Health doesn't cover it, besides is not different that zometa...( this is what doctor told me)

    It cost of Xeloda is $580 monthly .... I going to try the one he recommend to see how it's goes....

    Thanks for the info!!!

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  • ESCORPION
    ESCORPION Member Posts: 102
    edited January 2017

    sorry I make a mistake , I was referring to Xgeva the other bone medication that is giving by injection

    Thanks

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2017

    Escorpion- LOL- so many "X" words! My friend has had success with Xeloda for bone mets. It is for both Her2Neu neg and pos.

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  • Almosthere
    Almosthere Member Posts: 197
    edited January 2017

    Weigp22 surgery for stage 4 is certainly controversial and depends a lot on type of desease and the medical teams opinion.

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  • ESCORPION
    ESCORPION Member Posts: 102
    edited January 2017

    Good morning everyone!

    I have something to share, my numbness in my arm is almost complete gone.... Thank goodness... I seriously think that was Zometa that was causing it.

    A question, I am triple positive, mets to bones.

    When I ask my doctor what was the advantage OR des advantage of my condition, he told me that I have allot of medications.

    Now, after herceptin and perjeta combo he has move me to Katcyla....and after he is planing to send me to clinical trial ( maybe for lapatinib)

    I have seen allot of ladies here that had gone to severals medication in combination with herceptin...

    I going to ask my doctor next appoimment but I will like to ask some of your opinion regards this matter,

    I feel like he has skip allot of medication that I can use until using Katcyla... I don't want to deplete the options , the problem now is that if I want to go back to herceptin the government won't cover it???

    I hope he haven't make a mistake moving me fast to Katcyla...

    I hope I make my self clear .... Thanks for the info.....

    Have a great day!!!

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2017

    Escorpion---Kadcyla is a super-Herceptin. Since it is a monoclonal antibody, it is easier to tolerate that the usual chemos.

    Herceptin & Gemzar didn't work for me, so I went to Kadcyla which worked better. I think the usual progression is that if Herceptin isn't working, that you would then move on to better treatments.

    I did get remission on Kadcyla, so I went back to Herceptin alone for 9 months. But my nodes came back and worse, so Herceptin is now failing for me.

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  • Pasque
    Pasque Member Posts: 25
    edited February 2017

    Hi, Had Kadcyla on the 25th and felt great on the 26. Fri. Sat. Sun. and Mon. I slept most of the day. Couldn't stay up. Was really sore. Was taking some pain pills. Tues. I didn't take any but laid around a lot. I am up and doing today and feel pretty good. Just never had to lay around so much. Hope that doesn't happen again. I did go to the dentist Mon. (just cement a cap back on till I can get it fixed) and that was a hard trip. But like I said this is a pretty good day. Has anyone else had to sleep so much? Hope it doesn't happen much. And thanks for the suggestion of powdered milk in milk, really does add the protein. I did receive a cook book from the company that makes Kadcyla. It has chapters on day of chemo, neutropenia, diarrhea,constipation, sore mouth, high calorie, high protein, snacks an meals and a couple others. It has recipes and shopping list. It is a nice book and easy recipes. I just signed up at their site and it was free. Kinda nice to have. It is called Eating Well through Cancer. Hope every one is having a good day.

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  • Fran2014
    Fran2014 Member Posts: 140
    edited February 2017

    Hi All,

    Just wanted to introduce myself to the group-Hi, I'm Fran and I just started on Kadcyla last Thursday (wow, that's kind of a sad, yet humorous intro). Anyway, I've found this site to be very helpful in the past (particularly during my mastectomy and chemo back in 2015) & figured I'd reach out to you all since I'm on this new drug & still trying to "process" this whole Stage IV metastatic thing. Since my original diagnosis in 2010, I've been through multiple chemos, Herceptin/Perjeta, surgery, etc. I've been on and off Herceptin/Perjeta since 2015 but it really stopped being effective this past fall. So... onto Kadcyla I go! I must say, I appear to be tolerating it very well and was able to work the day after the infusion and this week as well (some fatigue but nothing too bad). I was just wondering if the SE's progress or get worse as the treatments continue on? I'd appreciate any input/advice you may have.

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  • Marl5900
    Marl5900 Member Posts: 32
    edited February 2017

    Hi Fran,

    I have been on Kadcyla since December 2014 and still progression free. No side effects that prevent me from being active (working, traveling, swimming, training my dog etc) but since December 2016 my liver has shown signs of toxicity. I do not feel anything but the levels (bili, AST and ALT) are carefully checked and I am now getting a lower dose. It is indeed a wonderful drug and I wish all women who need it would get access to it. Processing the "stage IV" has been a challenge but it is possible to keep anxiety in check and remain active and happy. Good luck to you.


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  • MargaritaMS
    MargaritaMS Member Posts: 199
    edited February 2017

    hi Fran, sorry to have to welcome you to this group. I've not been on Kadcyla long enough to respond to your question about whether side effects are cumulative though some of the ladies on this group have reported some improvement of some SEs over time. I've been on for several months and find it to be quite manageable. And I'm now stable And following Taxol, it's nice to have some hair again! I've complained recently about some neuropathy in my feet and others seem to have experienced similar but I'm hopeful that it doesn't get worse - at least not quickly. In the meantime, I'm just trying to keep up activity level since that seems to be goodfor most ailments including the mind-game that is stage IV.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited February 2017

    Welcome Fran,

    Sorry that you had to be among us. I have been on Kadcyla for 3 years and the nausea that I first experienced has lessened.

    My nose bleeds are worse as well as my fatigue. However, since I have been on chemo for 15 years, those symptoms have probably increased for me.

    Kadcyla did put me in remission and I took a 9 month break and was only on Herceptin at the time. But the nodes in my chest and neck reappeared and got worse.

    So I will be on Kadcyla from now on, until it no longer works.

    But all in all, it really isn't a hard treatment.

    Good luck!

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  • ESCORPION
    ESCORPION Member Posts: 102
    edited February 2017

    Hi Fran

    Welcome to the group, what I learn with

    Katcyla is that everyone has diferents side effects,

    In my case is just bodypain and I have to take Tylenol with codein for the first ten days after treatment.

    I have take Katcyla since November 2016, and in my case the side effects are no getting less or worst , but again , I haven't been long enough to compare.

    I really hope that the side effects will get better with time.


    Good luck!!

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  • Fran2014
    Fran2014 Member Posts: 140
    edited February 2017

    Thanks everyone for the warm welcome-I truly appreciate it! It does appear that the SE's really do affect everyone differently but thanks for the input. My nosebleeds have become more and more frequent within the last two days which is annoying but I'll take it compared to some of my prior chemo SE's.

    Wishing everyone a good week ahead and thanks again!

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  • Denny123
    Denny123 Member Posts: 1,886
    edited February 2017

    Fran-be careful with the nosebleeds. Kadcyla thins the nasal linings and thus the capillaries are too close to the surface. Try not to blow your nose....the last time I blew my nose forecefully was in April and I had to call an ambulance to take me to the ER and they couldn't stop the bleeding either.

    So I had to have my nose packed for a week-ugh.

    My ENT told me to use AYR saline spray and AYR gel to keep the nostrils moist. Also use a cool-mist vaporizer. And the best advice that I read on here was to put a few drops of Afrin on a Q-Tip and swab the inside of the bleeding nostril. If it won't stop bleeding, put Afrin on a bit of cotton, insert into the nose and hold it shut for 10 minutes.

    That will stop the bleeding.

    I did have the worst side cauterized a few years ago, but the whole inside can bleed.

    Denise

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  • ESCORPION
    ESCORPION Member Posts: 102
    edited February 2017

    I notice, that, what it make us to have a different side effects , is our own genetic composition,

    This medications dry you up... So they will take away your Fattys and water from your body.

    And if you already do not have fat or water in your body , it will make it worst.

    I notice with me, I use to have very oily hair, have to wash my hair daily .....and still was oily, then I took Taxotere, and I lost my hair it came back normal not oily at all... No more oily hair( I guess is one of the good things about it)

    So taxotere plus Katcyla, it will dry you up, so you have to keep drinking allot of water .....

    Denni also have great suggestions too

    I notice with my husband , he has dry skin and dry hair,....every single winter his nose bleeds...

    Correct me if I wrong .... I will like to know what your guys think about it.

    Have a great day !!!


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  • pwilmarth
    pwilmarth Member Posts: 235
    edited February 2017

    Hello ladies. Yesterday was my fourth dose of Kadcyla. Feel pretty good today, just dealing with that boost of energy from the dexamethasone. Anticipating the crash tomorrow.

    I've been fortunate with no issues with nosebleeds, but I do get the dry mouth. Use a mouthwash to help, and some wafers that stick to the roof of your mouth and help with night-time dry mouth.

    Still my favorite dry mouth remedy is lemon drops. Lemon is the best at generating saliva and it tastes the best of any of the other products.

    I've noticed loose stools come on between day 7-10. I've gotten good at anticipating and taking steps to prevent and minimize the effects - BRAT diet and Immodium during peak days.

    My labs have been good. Just had my first follow-up MRI for brain mets after Whole Brain Radiation Therapy and there has been a significant improvement in the cancerous areas - all much smaller. Radiation Oncologist feels they are dead cells, but we will be monitoring every three months for a year.

    As far as bone mets - all the achiness I was feeling in my hip is gone and I will have PET/CT scan at the end of the month to confirm what my symptoms are telling me.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited February 2017

    pwil-sounds great! I am so glad that your scans shoe an improvement!

    Do you use Biotene for dry mouth? The worst time for me with dry mouth is the evening after my tx.

    It is weird that Kadcyla makes me very constipated, but you have the opposite effect.

    My nosebleeds didn't happen for several months, but I have been on Kadcyla for 3 years.

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  • pwilmarth
    pwilmarth Member Posts: 235
    edited February 2017

    Yes, Biotene is one of the products I keep on hand.

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