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Who's on Kadcyla/TDM1?

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  • tcallegan
    tcallegan Member Posts: 14
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    I was diagnosed with triple pos. breast cancer in 2007. Competed chemo and radiation. Was diagnosed in February 2013 with liver and bone mets. I take Xgeva every 8 weeks for my bones. My bones have greatly improved :)

    I Started on Ixempra and xeloda  and Herceptin treatments with little response. Remained on Herceptin, but Changed to carbo and gemzar for about 10 treatments with great response but had new tumor growth. Changed to Kadcyla. I have had 3 treatments. My side effects start about a week after my infusion: extreme fatigue, aches and joint pain. I feel like a 90 year old woman....and I am only 49 :)   Has anyone else had the joint pain?  With this last treatment, my shoulders and neck are hurting. 

    It's frustrating because I really haven't had any pain in months. 

    Even with. These minor complaints, kadcyla is so much more tolerable than any of the other chemos. 

  • denny123
    denny123 Member Posts: 1,475
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    tcall,

    Do you get steroid pre-meds before Kadcyla?  I get Decadron and Kytril and the Decadron is supposed to help with the aches.

    I had my tx on Friday and my knees hurt (but they always do) and my right thigh hurts.  Usually it is my left thigh.

    If you read my above posts, you can see my SE's.

    Good luck!

  • tcallegan
    tcallegan Member Posts: 14
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    Thanks Denny123.

    I only get Benadryl and Tylenol for premeds. I have an MRI scheduled for Monday and treatment #4 scheduled for Tuesday. I will ask about the decadron. 

    I am the first patient in my doctor's office to get this chemo drug. Even with the aches, this is by far one of the more "doable" chemos. 

  • Trish03
    Trish03 Member Posts: 65
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    This past Monday I had my 5th treatment of Kadcyla. I'm doing really well with very few side effects; however, one side effect really gives me problems, and I'm wondering if anyone else is bothered with the same thing. When I stand up or walk for just a few minutes, I get really bad lower back pain. I don't really think it's bone mets because the second I sit down the pain stops. The pain feels like I've had in the past when I lifted really heavy boxes and strained my back. It's is becoming a real problem when I need to go shopping or anywhere where I need to walk around for very long. 

    Has anyone else had this problem while on Kadcyla? I've taken Tramadol and Aleve but can't really tell that it helps much. I don't really want to take narcotics for this since it only hurts when I walk. If you've had this issue, I'd appreciate knowing how you deal with it or if you can offer any advice.

    We're going to Disney next week, and I've rented a scooter for the entire week. There's no way I would be able to last more than 10-15 minutes without it.

    Thanks, Trish

  • denny123
    denny123 Member Posts: 1,475
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    Trish- so sorry about your pain.

    I did have those pains a few weeks ago, but realized that it was because I was lifting my grandson too much.

    I avoid lifting him now and no pains.

    Hope you find the reason and can still enjoy your vacation!

  • gonegirl
    gonegirl Member Posts: 1,022
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    l get muscle spasms due o dehydration. It can also be low magnesium or potassium. 

  • tcallegan
    tcallegan Member Posts: 14
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    Well, I had an MRI yesterday and it show progression. We held the kadcyla treatment I was supposed to get today. He will talk to my doctor at MDAnderson to see what the next step will be. Anyone else have kadcyla not work for them?

  • denny123
    denny123 Member Posts: 1,475
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    tc,

    I am so sorry to read that you had progression.  I won't have my PET until the end of June.

    Where was your spread to?  Mine is in the nodes behind my sternum and in my supraclavicular area.

  • Trish03
    Trish03 Member Posts: 65
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    tx, I'm sorry to hear about your progression on Kadcyla. I interested in hearing where your onc goes from here. My onc and I haven't discussed what he'll do if/when Kadcyla fails me.  I's had 5 a treatments and will have scans after the 6th. I hope your onc comes up with a plan that is kind to you and that works. 

    Hugs, Trish

  • tcallegan
    tcallegan Member Posts: 14
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    he mentioned several options...I really can't remember them all. 

    This was a curve ball I didn't expect. Hopefully, he will talk to my dr at MDAnderson and let me know something by Thursday. The MRI showed more tumors in my liver (about 7 more). Last February, I had 30. However, the radiologist compared the MRI to that scan and it looks better (i had been improving on carbo/gemzar/Herceptin from August until March). So at least we aren't back where we started. I also have mets to my spine that had been improving. He is worried my achiness may be progression there. Probably will do full PET before another treatment. 

    It's been a long day....

  • MemaSue56
    MemaSue56 Member Posts: 2,061
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    Hi Ladies - I just started this treatment yesterday.  Had the Benadryl and anti-nausea in the drip.  90 mins...but no reaction so they let me go after 30 mins observation.  Felt pretty good rest of the day.  Woke at 4am with killer headache that would not let up.  MO referred me to back to my RO as I had just finished WBR on April 30 and was weening off the decadron, MO thought that was too soon.  RO put me back up to 1 a day and my headache went away.  So I think I might have some se's related to one or the other or both.  In any case, am very happy I found this thread. 

    tc - am very sad to hear you have progression.  Please keep us posted on what your next step is.  I was a bit surprised to see you got Xgeva every 8 weeks, mine has been every 6 weeks and bones still showing NED.  MO wanted me to have it every 4 weeks, but settled on 6.  So am curious too on where progression is.  Sending you Big HugZ and prayers!

    Gritgirl - I have been suffering with the muscle spasms too, sometimes they make me wanna scream.  MO said magnesium sulfate...I have been taking magnesium citrate 2x a day.  Will start with the sulfate based tomorrow.  I drink tons of water, and when the spasms are really really bad I drink 2 bottles of G2 Gatorade which has electrolytes in it and it does help a lot.  G2 is only one that has the electrolytes...might give it a try too. 

    Trish - Last summer my lower back started giving me fits.  I was walking 3 miles a day (wearing orthotics and well made shoes) and pool exercises in the summer and some biking.  Couldn't understand it so MO ordered MRI...showed tons discs desiccation, bulging, prortusion, nerve damage, overall degenerative disc disease etc etc.  I'm only 59 and knew after 3 years of anti-hormonals that my bone health would deteriorate...gotta have the hormones to avoid the osteo-stuff.  Anyway, I quit walking, and biking and lifting my grandkids or anything else over 10#.  Now use an elliptical and have had very little lower back pain over the last 8 months.  Hope this helps.

    Denny - mine too has spread to my nodes.  Have not and will not have surgery, so if Kadcyla doesn't work for me...well...I'll cross that bridge when and if I need too.  Don't know yet when my MO plans to scan...but she is planning on a MUGA in August, so maybe a PET then too.  I know I'll get my brain MRI in about 6 weeks.

    Will keep you all posted and will read with interest how you all are doing.  Sending prayers & positive healing energy to you all!

    Sue

  • MemaSue56
    MemaSue56 Member Posts: 2,061
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    tc - looks like my post stepped on your update.   I am so sorry!!  Want so bad for this to be 'just a small set-back' and that you can continue some form of treatment to stop the progression.   Hoping too that you hear something by Thursday...the waiting can be so difficult.

    BIG HUGZ and tons of positive energy!!

  • tcallegan
    tcallegan Member Posts: 14
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    thanks memasue56!

    I must have mistyped. The xgeva is every 6 weeks usually. I have had to go 8 weeks a couple of times due to other treatments and such. 

    Yes, this is just a minor setback :)

    Will keep y'all posted. 

  • chiquita_10
    chiquita_10 Member Posts: 1
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    Hi everyone, I was just wondering how is everyone getting this TDM1 drug, because my doctor has recommended it to me but I am not covered through insurance and can not afford it. Is anyone receiving some type of assistance, I would be very grateful for the information, thank you and I wish everyone all the best!

  • denny123
    denny123 Member Posts: 1,475
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    Mema-post whenever-this is an ongoing conversation.

    My onc wants to do rads, but the one mass is really close to my esophagus-that scares me, so I opted for chemo.

    Chiquita....  I am in PA, and have UPMC for You Medicare plan plus Medcaid.

  • moderators
    moderators Posts: 8,085
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    Paying for care

    Chiquita. You may also want to check out the link above on our website for additional resources. The Mods

  • CJRT
    CJRT Member Posts: 221
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    Sorry it's been a while so I just quickly skimmed through things but wanted to respond to Chiquita.

    Chiquita- I know the moderators already shared a great link with you. I happen to have been part of a patient advisory board at Genentech (the company that makes Kadcyla) and was part of a presentation in which they shared information about their financial assistance programs for the medication without insurance or when you have high copays. Luckily insurance covers mine (with the exception of my out of pocket responsibility.) If your treatment center can't help you fill out their forms, contact Genentech directly.  Here is the information from their site: http://www.genentech-access.com/kadcyla/hcp/find-patient-assistance

    tc- I'm sorry you are facing a possible treatment change. I had experienced a decrease in tumor markers to normal range and stable disease for about 9 months on Kadcyla when FINALLY I saw some regression on my last PET in February. I'm anxious to see what my next one holds.

    I have been on Kadcyla for a little over a year. The side effects are sometimes annoying but so much better than chemo for me. I will say that I've had a significant increase in migraine headaches (despite a recent normal brain MRI) and weird nerve-like things that aren't the standard neuropathy.  Other very minor problems for me include a rash after the infusion (I don't get premeds), some fatigue and feeling weak, some muscle or ligament pain, runny and bloody nose, chronic dry eye, and an enlarged reactive node in the back of my head following every treatment. Overall, I find it extremely tolerable, and it allows me to live as "normally" as possible and keep up with my two young children. I am praying that I can remain on this for a long, long time.

    Wishing everyone the best...

  • MemaSue56
    MemaSue56 Member Posts: 2,061
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    Thanks Denny!  My headaches are easing since upping my steroids.  No other se's yet...woohoo.  Yikes, esophagus, that would scare me too...praying the chemo kicks it to the curb.

    Chiquita - good advice from the mods and CJ...hope you can find the assistance and get going with this treatment.  (((C)))

    CJ - you are an inspiration, thank you for sharing.  Am hoping we all reap the good from this tx.  Keep up the fight! 

    tc - Big HugZ!
    BIG HUGZ and tons of positive energy to everyone!!

  • tcallegan
    tcallegan Member Posts: 14
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    CJRT, after being on  Carbo/Gemzar/Herceptin for about8 months, my tumor markers came down to normal.  But, in March, I had new spots in my liver.  That is when we changed to Kadcyla.

    I spoke with my oncologist today.  I will be starting Navelbine tomorrow and continue with the Herceptin.  This will be my third drug change in a year.  Praying this is the ONE to conquer it!

    Anyone have any experience with Navelbine? I am just hoping and praying we still have options....I don't want to run out of drug choices :(

    Yes, positive energy for all :)

  • denny123
    denny123 Member Posts: 1,475
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    tc,

    Best of luck to you!  Navelbine has been around for a long time and can do a great job!  I have been counseling BC patients for 11 years for Reach to Recovery with the ACS as a volunteer.

    So I have talked to a ton of ladies who had Navelbine with very good results.

    Please keep us posted!

  • CJRT
    CJRT Member Posts: 221
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    Tcallegan- I have a dear friend in her 30s who has been on navelbine since last may for liver mets. she has tolerated treatment very well (still works full time and exercises) and has experienced either slight regression or stability every 60-day scan. 

    Thanks memaw sue! Glad your headaches are easing. Hope you continue to feel well.

  • tcallegan
    tcallegan Member Posts: 14
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    thanks Denny123 and CJRT!

    Treatment today was easy. Premed with decadron and aloxi. The plan is to do this every 7 days. I will know more when I follow up with him next week. 

    I have not posted much on this discussion board, but I really want to thank you all for the support!  I will keep you posted. 

    Positive thoughts and hugs to all :)

  • cheery
    cheery Member Posts: 23
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    TCallegan

    I'm also a liver metster and Navelbine gave me 4 years of NED with very little side effects. No hair loss, very little nausea and I even skipped the decadron. 

    Hope this treatment will help kick those liver mets away! 

  • tcallegan
    tcallegan Member Posts: 14
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    WOW!

    I am hoping and praying cheery!

  • DianeKS
    DianeKS Member Posts: 36
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    Hi all...seems I will be joining you in this treatment shortly.  However, there is this small MUGA problem.  Was on Herceptin/vinorelbine, ejection fraction went from 55 to 48%.  While on my  6 week break, I learned of a progression to liver mets and a hilar lymph node. Repeat MUGA 49%,  grr... My onc  won't start TDM-1 until it gets to 50%.  I am frustrated due to the 4 week wait it will be before they will repeat the test to get over or at 50%, and I do not like the idea of not being on any treatment.  Thankfully I am feeling well.

    My question is...has anyone had to take a break from the TDM-1 due to decrease cardiac function.  Are you followed by MUGA or Echo

    Thanks very much,

    Diane.

  • denny123
    denny123 Member Posts: 1,475
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    tc-thanks for posting and I hope that Navelbine works very well for you.  That gives me hope if Kadcyla doesn't work for me!

  • denny123
    denny123 Member Posts: 1,475
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    Diane,

    I had Gemzar and Herceptin for liver mets.  After 9 months, my liver went into remission, but I remained on Herceptin for 11 years.

    At first I had MUGA's, but since I have bi-lateral lymphedemia, I had to have the IV's in my FEET!  Ouchy!

    I finally read on this site about having an Echo, which is soooo much easier with no injections.

    My onc likes them just as well.  Through the years, my EF went down to the high 40's, but my onc was not worried, and it went back up to the 50's the next time.

    I sure hope that you can start on it soon.

    Good luck!

    Denise

  • Trish03
    Trish03 Member Posts: 65
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    Hello everyone. I have a question about elevated liver enzymes. I know that's listed as a se of Kadcyla, and I wonder how many of you have experienced that yet have remained stable. My lab work from yesterday (prior to my 6th treatment) shows an increase in AST from 41 to 60; Bilirubin from .3 to .6; ALT from 33 to 63; and Alkaline phosphatase from 90 to 128. I don't have scans for 2 more weeks. My scan after the 3rd treatment showed the tumors had shrunk. I was so hoping that would be the case this time.

    I recently started talking Catflam for lower back pain, and the se's list elevated AST and ALT but don't mention the others enzyme tests.

    I think I read somewhere that someone had to go off Kadcyla because her liver enzymes went so high, although the cancer was still stable. Does anyone know anything about that? 

    I'm a little freaked out because a rise in my liver enzymes usually mean progression for me. That happened with PHT when we dropped the taxotere. 

    I know this post wanders all over the place. I mainly want to know if anyone has had a rise in liver enzymes yet Kadcyla was still working. I really don't want to have to change to another drug because this on is so easy for me.

    Hugs, Trish

  • CJRT
    CJRT Member Posts: 221
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    trish- I'm so sorry for the anxiety you are experiencing. Wish I had anything to contribute but although I was warned about liver function abnormalities, I haven't yet experienced them. Hoping you get good, relieving news fast. 

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

    I think that my liver enzymes are okay.  But they may be skewed anyway since my liver was full of mets in 2004.

    Hope all goes well for you!

    Denise