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Who's on Kadcyla/TDM1?

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  • Woodylb
    Woodylb Member Posts: 935
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     Hi Denise , just checking to see how you are. I hope your SEs are less and that kadcyla is still going strong. Hugs.

  • Kite
    Kite Member Posts: 81
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    Denny123 I have had 4 treatments. Besides fatigue my appetite is decreased. (Just wanted to add that.) 

    I wish they would add it to our treatment options too!  Mods?! Are you reading this? Can you help? 8)

    I was looking at my calendar and I notice I have a liver CT scan in a couple weeks. I totally forgot about this! The surgeon who did the dissection scheduled it so maybe it's to see how I'm healing? I know my PET scan just came back good so I'm not worried but I'd be lying if I said it didn't give me pause. It never ends... 

    Had a horrible PTSD episode last week. Apparently SSRIs are not my friend. Switched to B vitamins to help with depression and it's amazing how much better I feel. So relieved to have a natural supplement and one less med.

    Hope everyone is having a good week! 

    Anyone have hair growing? Mine sure is taking it's sweet time.

  • Pattycake12345
    Pattycake12345 Member Posts: 2
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    I have been reading this forum for a long time, but this is me first post.  After I was NED on my first breast cancer I purposely tried to forget all dates and procedures.  I had a lumpectomy, chemo and radiation.  After  10 months of NED I was diagnosed with pre-cancer in the same breast and a tumor in my liver 5.3 cm X 3.2 cm in March, 2014.  I opted for a double mastectomy without reconstruction.  

    I started Kadcyla in May, 2014, had a CT scan after 4 infusions and was NED.  My oncologist said this was nothing short of a miracle.   I've now had a total of 6 infusions with only minor side effects -- dry mouth and minor fatigue for a day or so.  The se's lessen with each infusion.  I took femara daily for 3 weeks when I started Kadcyla,  but it made me feel really bad after 3 months.  My oncologist switched me to arimidex and after 2 weeks it made me feel really bad, too -- low energy, lethargic, aches in joints and decreased appetite.  I stopped it this week and will be hearing from my oncologist within a few days as he's out of town.   I knew it was not the Kadcyla causing the side effects because we went to Vegas for a week before starting the arimidex and was only taking Kadvyla.  BTW, I'm the second person in my Cancer Center to take Kadcyla, and the other person is having great success, too.

  • Kite
    Kite Member Posts: 81
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    Thank you Pattycake for sharing! I just love hearing others good news with Kadcyla. I hope others will chime in too! Sorry about the other meds bothering you. I don't have any experience with them, but I will pass on some hope that your MO will get it figured out. 

  • moderators
    moderators Posts: 8,085
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    Dear Pattycake12345

    We arr sorry to heart of your previous and latest problems, but are happy to hear of your success with Kadcyla.

    There is info on Kadcyla in a number of articles on our main www.breastcancer.org  if Search is used (link goes to such a search).

    May your results remain NED.

    The Mods

  • Momonana6
    Momonana6 Member Posts: 154
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    Hi Denny,  I just happened to hop onto this page and wanted to say hello.  My MBC is to the lung and dx was in January of this year.  Since Kadcyla/TDM1  was mentioned here it drew my attention.  My onc mentioned it as a possible follow up should my current Herceptin and Faslodex fail.  I live in Pittsburgh and my oncologist is with UPMC and I also volunteer with ACS in their Reach to Recovery program.  Good to say hello to a neighbor and wish you the very best with your current tx.    Peg

  • denny123
    denny123 Member Posts: 1,475
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    Hi Peg!

    Good to hear from you!  I get some referrals from Alleg county when you guys have too many!  We probably were at  the same BC conferences at one time or other!

    I am the trainer/coordinator for Westmoreland county RTR.

    I had my surgeries at Magee and also went there for many years of CT and PET scans.  But now I can go to the imaging center in Greensburg, TG.....less traveling.

    Kadcyla is working well for me, so far.  Please keep checking back in if you need us!

    Denise

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

    Glad that the Vitamin B is helping and sure hope that Kadcyla works for you! My appetite was decreased after my first tx, but it sure has increased since.  

    I guess the Decadron helps that....urp.

    Denise

  • denny123
    denny123 Member Posts: 1,475
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    Welcome Pattycake!

    I am so glad to read that Kadcyla is working well for you!  My original mets were to my liver and I am always afraid that it will come back there.  But to know that it worked on your liver gives me some reassurance.

    I am wondering if the chemo combo is the reason why it is now bothering you.

    Kadcyla SE's seem to be worse for me than anyone else.  I am only on Faslodex besides Kadcyla.

    Good luck!

    Denise

  • Trish03
    Trish03 Member Posts: 65
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    I haven't posted on this thread for a while but wanted to give an update. I've been on Kadcyla since Feb., and so far, all of my scans have been stable. I was dx in June 1013 with huge liver mets. After 6 cycles of PHT with great results, I dropped the Taxotere, but tumors showed progression on PH only. That's when I started Kadcyla. The main se I have is fatigue for a few days. It's great hearing about so many ladies doing well on this drug. I hope I can stay on it for a long time!

    All the best to everyone. Trish

  • Momonana6
    Momonana6 Member Posts: 154
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    Hi Denny, My MBC to the lung  was diagnosed in January of this year.  I have  been taking Herceptin and Faslodex since that time.  Since my  CA markers  have stayed in the fifty range oncologist would like to see a PET result soon and then make some tx decisions re Kadcyla or another.  How long have you been treating with Herceptin and Faslodex?  It is a very kind routine as far as se are concerned.  Peg

  • denny123
    denny123 Member Posts: 1,475
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    Great news Trish!  Sure hope it keeps working for you.

    I seem to have been hit with a lot of SE's, but am plodding on.

    Today, as soon as the tx was done, my throat started to tighten up, so my nurse gave me allergy meds in my IV.  Then 2 nurses sat there and chatted and watched me to make sure that I was okay.

    I had this throat tightening last week for a few days.  Tolerable as long as it doesn't close completely!  But a totally weird feeling.

  • denny123
    denny123 Member Posts: 1,475
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    Momo,

    I started Herceptin in Jan, 2004.  So I had been on it for 10 years and it did keep me in remission for 6 years.

    Once the lymph nodes behind my sternum and in my supraclavicular area started 3 years ago, I tried Aromasin with Herceptin, which failed.  Then Faslodex with Herceptin, Failed.  Then Faslodex, Gemzar (which did work 10 years ago on my massive liver mets), and Herceptin.  Failure.

    Finally on Feb 28 I started with Kadcyla (quit Herceptin since Kadcyla is a super-Herceptin) with Faslodex.

    After 5 tx, I had a marked decrease in nodes.

  • ronniekay
    ronniekay Member Posts: 657
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    Just popped in & saw you're still stable, Trish...WOOHOO!  And Kite....Awesome results!!!!  Now to send positive thoughts for you, Woody!   And Spring...I know how much they charge for our drugs...just not right, when it really does mean life!!!

    I'm on Navelbine/perj/hercep...but if it ever doesn't do the trick...I'm definitely talking about kadcyla.  I'm getting a few funky ses the longer I'm on this...eyes being one.  Thinking of you all....always!

  • Woodylb
    Woodylb Member Posts: 935
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    Denise, i am very happy Kadcyla is working for you and hope it keeps doing so. However, i am sorry about the SEs specially the tightening in the throat , it must be terrible i hope they give you something which works for that. Stay well . :))

  • Woodylb
    Woodylb Member Posts: 935
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    RonnieKay, 

    Thanks for the happy thoughts :)) Thinking of all of us too and my prayers are with each and every one. Hugs. 

  • DianeKS
    DianeKS Member Posts: 36
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    Hello everyone,

    I received my fourth treatment Thursday.  This evening I am having pain to my lower right side of abdomen.  Enough that I reluctantly took two Tylenol #3, which has helped a bit.  Two cycles ago I experienced lower back pain around 3-4th day after treatment. I have involvement of the bones in that area. But that did not return again.  I do have liver involvement, elevated enzymes enough that the onc reduced my dosage for this round.

    Trying not to fret...but wondering if this means the treatment is working, or is it because it's not.  Leaning toward the negative as my tumour markers are higher than they have ever been.

    Has anyone else had this response after treatment? Increases when I take a deep breath.  Yes, I will seek help if it gets worse...

    Thanks for any advise.

    Diane

  • denny123
    denny123 Member Posts: 1,475
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    Diane,

    I also had abdominal pain after my 4th tx.  It started as stomach pain, then went to my back, up to my shoulders and then my chest.  So for about 3 hours I had pain in my entire torso.  I didn't know what to take, so just tried to sleep and it was better the next day.

    I talked to my chemo nurses and several of them never heard of such pains, but finally one nurse said that she just had a patient with the abdominal pains.  And it is listed a one of the side effects.

    So now I know that I can take Motrin if it happens again, but it hasn't.

    I just had my 10th tx of Kadcyla on Friday, and no more pains.

    On the upnote---I have a "marked decrease" in my metastatic lymph nodes from this chemo!!!

  • Woodylb
    Woodylb Member Posts: 935
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    yayyyy Denise we love decrease Winking 

  • DianeKS
    DianeKS Member Posts: 36
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    Well,  I went to emerg sat night.  First they ruled out gallbladder,  then did a CT to rule out pulmonary embolism.  No embolism  unfortunately... Large progression to my liver after just 4doses of TDM - 1  😢

    Went from taking no narcotics on Thursday.. To dilaudid every four hours. Needless to say I am hugely disappointed,  can't stand this disease,dislike emerg rooms,  hate what  this does to my family,  my friends are the best. My kids sense things are worse.  Just told them pain was worse because  of cancer... Not the extent.  They are smart cookies though... 

    Feeling like the floor just dropped out below and I'm hanging on to a branch. 

    Diane 

  • denny123
    denny123 Member Posts: 1,475
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    Diane,

    I am so sorry.

    In Jan 2004, my biggest liver met was 9cm and my liver was full of mets.  I got Gemzar with Herceptin and went into remission after 9 months.

    So I sure hope that you can get a chemo that works for you!

    My prayers are with you.

    Denise

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

    Good luck to you too!

    Denise

  • DianeKS
    DianeKS Member Posts: 36
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    Well,  I went to emerg sat night.  First they ruled out gallbladder,  then did a CT to rule out pulmonary embolism.  No embolism  unfortunately... Large progression to my liver after just 4doses of TDM - 1  😢

    Went from taking no narcotics on Thursday.. To dilaudid every four hours. Needless to say I am hugely disappointed,  can't stand this disease,dislike emerg rooms,  hate what  this does to my family,  my friends are the best. My kids sense things are worse.  Just told them pain was worse because  of cancer... Not the extent.  They are smart cookies though... 

    Feeling like the floor just dropped out below and I'm hanging on to a branch. 

    Diane 

  • Kite
    Kite Member Posts: 81
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    5th treatment and just like the 4th (had it yesterday) I'm wiped completely out. Cannot stay awake or eat. It just lays me out like having the flu. It's not even close to "chemo" bad but I don't feel good. What I do feel good about is it is working!! That is worth feeling flu like every 3 weeks. No doubt. 

  • Woodylb
    Woodylb Member Posts: 935
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    Thanks Denise , i will of course keep you posted , i am so happy it is working for you even with the bothersome SEs as long as it is succeding. 

  • Woodylb
    Woodylb Member Posts: 935
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    Kite , i hope you feel better soon , but is is working so it is worth it :)))

  • denny123
    denny123 Member Posts: 1,475
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    I agree, Kite.  This constant nausea is bugging me, but oh well....Sure hope it continues to work!

    What kind of flu symptoms do you have?  Just the nausea?  I also have the extreme fatigue.

    Denise

  • Kite
    Kite Member Posts: 81
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    Denny- yes the fatigue is a big one for me. The two (nausea and fatigue) is what make it feel like a flu. I was back on my feet in 3 days after this last treatment. I contribute it to my Vitaman B complex I'm taking. 

  • denny123
    denny123 Member Posts: 1,475
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    Kite-okay, that is me too.  But with flu I got bad aches and pains in my joints and I don't have that now.

    I have asked my onc about B vitamins, but my blood levels are all good and he said that they won't help me.  I keep trying....

    I have been on chemo for almost 12 years, so my blood is just getting tired, according to him and my nurses.

  • Priscilla0929
    Priscilla0929 Member Posts: 24
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    I am on it since May 2013. Doing well on it.... Cleared up all of my liver lesions. Just tired around day 3 and last two treatment I got weird low grade fevers. Other than that I am doing really great on it. Thank goodness for it!!!!