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Who's on Kadcyla/TDM1?

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  • cburke51986
    cburke51986 Member Posts: 1
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    Hello! I will be continuing on Herceptin and starting Kadcyla in the next couple of weeks. I was originally diagnosed as stage 4 in March of 2013, with a tumor in my right breast, extensive lymph node involvement in my right axilla, and 3 tiny lit up spots on pelvis, illium, and sacrum... I started right away on a combination of Perjeta, Herceptin, and Taxotere. I had immediate fantastic results.... bone spots disappeared within 3 weeks, tumor shrank considerably, and lymph node activity went down to a normal SUV range in PET scan. In September 2013 the SUV in lymph nodes had increased slightly, but tumor continued to shrink. There was a very small spot that lit up my T8 vertebrae in my spine, but when a biopsy was done it came back clear and I went ahead and had a right side modified radical mastectomy. Taxotere stopped in September and Have continued on with the Perjeta and Herceptin. Just finished radiation treatment last month and had a PET/CT on March 10th that I was expecting to see clear. I felt a pulling sensation in my back last Friday when I picked up my 2 year old and thought I pulled a muscle... woke up at 4:30 am Saturday morning in terrible pain and drove myself to the ER. The ER doctor called the hospital to ask about my PET/CT results and I was told that they fund several new areas in my spine, as well as new lesions in my right femur, and 2 areas of my pelvis. They went ahead and did a CT at the hospital based on that and discovered that cancer in the bone marrow in my T7 vertebrae had caused a compaction fracture. Luckily an MRI showed that my spinal cord has not been damaged, but they admitted me to the hospital and I've been here getting tests ever since. I start radiation tomorrow for the areas in my pelvis, upper, middle, and lower back. Radiation Onc says it will nuke the cancer that is there now, and it should take about 5/6 weeks for the bone marrow to grow back and the fracture to heal. My oncologist told me that he plans on starting my on Kadcyla and continuing my Herceptin treatment. The Perjeta worked almost instantly for me and I had no progression for 6 months. I'm really hoping that the Kadcyla will work for me, because I know that Perjeta was supposed to have a higher average for progression free survival... it's just crazy that something can start off working so incredibly well and then instantly stop. To be honest, I'm nervous about Kadcyla... not because I think it won't work, but because of the very scary and serious sounding side-effects. Although I have to admit I'm pretty pleased that only 5% of the ladies on it lose their hair! I just got mine back.... it's curly now and feels slightly like a brillo pad, but it's there and I'm thrilled!! Doctors all reassured me that right now is an extremely progressive time as far as breast cancer treatments are concerned and there is a lot of great breakthrough work being done for those of us with metastatic cancer. I've also heard that bone mets are the easiest to manage on average and can be treated for years and years... so I'm going to pray my butt off and cross my fingers for myself and every one of you ladies that are on or are getting ready to start taking this groundbreaking new drug... I'll be sure to post my success with and reactions to it... and no doubt be checking back here frequently for some reassurance myself. Good luck everyone!

  • denny123
    denny123 Member Posts: 1,475
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    cburke,

    Boy, you sure have been through a lot and my heart goes out to you!  I don't know if you read about my SE's from Kadcyla, but they are mild.

    My onc nurses know of only 1 patient who had a hard time with it-everyone else breezed through it and the results have been very good.

    I had one tx on Feb 28.  I had mild nausea for about 10 days, but no throwing up.  Occasional bloody nose-but only when I blow it.  Fatigue as usual, since my reds are down.  

    My nurses told me that I would not lose my hair.

    All in all, very tolerable.  Please keep us posted!

  • petjunkie
    petjunkie Member Posts: 39
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    Hi All,

    I've had a year on TDM-1 now and am still going! This is the longest a treatment has ever worked for me. I have not had any regression, still bone mets and mets to liver, but everything has held stable and that's good enough for me. I did get a brain met during the last year, but gamma knife zapped it. The side effects of TDM-1 have continued to lessen with every round. I now have significant fatigue the weekend after infusion, achiness and no appetite, but that's about it.

    Cburke you should ask your doctor again about continuing Herceptin. Kadcycla is a chemo bound to Herceptin, so it's not typical to continue Herceptin during this treatment-- you are already getting it within Kadcycla. Hope this drug works great for you!

    Karen

  • Trish03
    Trish03 Member Posts: 65
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    Cburke, I'm sorry that you've had such a difficult time lately. I had a similar experience (not the bone mets), but when I was on PHT, my tumors in my liver shrank dramatically - almost 80% total. I went off Taxotere after 6 cycles, and I started having small progression, so I think the Taxotere was the drug that was really effective for me.

    Now I'm on Kadcyla. I've had 2 cycles of it and will have scans in 2-3 weeks. I'm really hope it's working because, for me, it's a very easy chemo with few side effects. My hair is growing like crazy, and I don't have the terrible D that I had on Perjeta. I have a little fatigue but nothing like when I was on Taxotere. I haven't had any nausea at all.

    Petjunkie, I love reading your story! A year stable is wonderful! I hope it continues for a long, long time.

    All the best to everyone.

    Hugs, Trish

  • denny123
    denny123 Member Posts: 1,475
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    cburke, I agree with Karen.

    I was on Herceptin for 10 years and my onc took me off it since Kadcyla is a super-Herceptin.  You should question that fact that your onc wants to continue with it.

    I forgot to mention my watering eyes....did anyone have this?

  • Historygirl
    Historygirl Member Posts: 1
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    Hi 

    I've been on TDM1 (it's still on trial here in the UK) since June 2013.  My first two scans showed some shrinkage in my lung mets.  The third scan, last month, showed stable disease.  I have some nausea the day following treatment and am moderately fatigued, but nothing like the tiredness caused by Taxotere.

    I was wondering if any one is also on an A.I.  Is TDM1 compatible with Letrozole or any other AI?  I was taken off Letrozole at start of trial and I'm not sure if this due to trial criteria (ie the drug company wanting to be sure any changes are due to TDM1 alone) or if the two are incompatible.  Any thoughts?  

    Many thanks

    Della

  • denny123
    denny123 Member Posts: 1,475
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    Don't know about AI's.  Sorry!

    I had my second tx today and was surprised that my red and white counts are even lower than last Friday.  My nurse told me that the Nadir with Kadcyla is 2-3 weeks after the tx.

    So far I feel okay-hope I don't have 10 days of nausea this time.

  • Trish03
    Trish03 Member Posts: 65
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    Although my first 2 treatments of kadcyla were fine, last night I had a reaction to the treatment I had Friday morning. I woke up at 3:30 am with a terrible headache and a swollen and red face. I called the on-call dr., and he told me to take the dexamethasone that I had left from Taxotere, along with Benedryl. He told me to call back in two hours to let him know how I was doing. In the meantime, I started vomiting, which I've never done with chemo, so he told me to take one of my anti-nausea drugs (don't) remember which one. The headache finally stopped at 7 pm, so I started feeling better. I called the dr. again this morning to ask about dosage of the meds, and he told me to call tomorrow morning and to go in to see the dr. The swelling is a little better today, and the headache hasn't returned.

    I know this isn't serious compared to se's others had, but it was scary and totally unexpected. Has anyone else had these se's with Kadcyla? Does anyone know if the drug builds up and has a cumulative effect as far as se's go? I'm eager to find out what the onc has to say. I appreciate any information.

    Hugs, Trish

  • denny123
    denny123 Member Posts: 1,475
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    Wow Trish!  That is scary!  Please keep us posted!

    I only had 2 tx so far.  No nausea the evening of second tx, but more than normal on Sat and Sunday.

    Nausea is gone today, but I have bad pains in my left leg and a constantly watering right eye. 

    Bloody nose (both sides)  How weird am I!

    Of course, when the nausea goes away, the fatigue starts!  No neuropathy yet.

  • denny123
    denny123 Member Posts: 1,475
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    Wow-had a bad evening!  Around 5idh, I had stomach pains.  Then the pains spread to my whole torso-front and back.

    I took a Compazine, which didn't help.  Guess I could have taken a Motrin but didn't want to get out of bed to do so.  Guess it would have been a good idea.

    Kept in text contact with my daughter who is in nursing school.  Ended up in bed at 8:30-slept sporadically until 7-a new one for me.

    Today the pains are gone, but I am horribly tired.

    Challenges....

  • KasSha
    KasSha Member Posts: 7
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    I'm not frequent visitor to this site but wanted to see if others are having the good results with Kadcyla that I am having. I started in December. My markers went down over 600 points after the first treatment and have continued to decrease! Scans last month showed liver looks clear and my bone mets show improvement!  The main side effects I've had are numbness in my toes, a low grade fever in the evenings for about 3 days after treatment, and some flu like symptoms day 4 and 5. But this is one of the most tolerable chemos I've been on and I've been on just about everything over my 18 year struggle. Glad to hear others are having good responses as well!

  • denny123
    denny123 Member Posts: 1,475
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    KasSha,

    Thanks for writing! After what I went through last night, this is very encouraging!  Please keep us posted!

    Denise

  • KasSha
    KasSha Member Posts: 7
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    Denise 

    I didn't read all the way down this thread until after I posted. So sorry to hear of your awful night last night.  It's strange that it occurred after you'd had a couple successful treatments. I hope your doc can pinpoint the problem soon. 

  • Trish03
    Trish03 Member Posts: 65
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    Update on post from 3/24: The allergic reaction is just about gone. Face is still a little red and swollen, but that could be from the dexa they told me to take. It always made my face flushed when I took it with Taxotere. On Monday I did go into the onc's office. May blood pressure was high but other vitals were ok. They they made me an appointment to see my onc for next Tues. He's out of town right now. Luckily, the headache never came back; they was definitely the worst part.

    Denny, the stomach pains must have been very scary. Was  it soon after a chemo treatment? Did you contact your onc? I certainly hope that doesn't happen again. I'm sorry that your pain meds didn't help.

    KasSha, thanks for sharing the good experience you've had on Kadycle. That's very encouraging to the rest of us. I'm especially happy to hear of the good effect it has had on your liver since that's where I have mets. Have you had mets for 18 years? I'd love to hear about that.

    Hugs, Trish

  • denny123
    denny123 Member Posts: 1,475
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    Thanks ladies.  Hope we continue to do okay.  The pains were after my second tx. and the pains were in my stomach, back, chest and shoulders.

    Guess I could have taken a Motrin but was afraid to.  Didn't want an upset stomach along with the pains.

    I will go in for a CBC this Friday, and ask about the pains.  But since there are so few of us on Kadcyla, I am sure that this will be something new to the nurses.

  • texasrose361
    texasrose361 Member Posts: 895
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    not only are my eyes watering but my eyes are swollen! Other than that same old same old!

    Sometimes i get a weird pain in my rib area, sorta like i was hit and its a bruise or something. Usually only lasts a little while. Never even concidered it to be anything related to tx...

  • denny123
    denny123 Member Posts: 1,475
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    Thanks for mentioning the watery eyes.  This appears to be Taxane symptoms.

    I talked to my chemo nurse last night about my CBC of tomorrow and mentioned the pains.  She told me to call an ambulance if I have them again since she never heard of this with ANY chemo.!!

    So I called my cardologist this morning and he is off today.  He will return my call tomorrow.  Doesn't hurt to ask.

  • denny123
    denny123 Member Posts: 1,475
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    MY cardiologist just called me on his day off-how nice!  He said that the torso pain that I had wouldn't have anything to do with a heart problem.

    So chalk up another side effect.  Guarantee the next time I get stomach pains, I will pop some Motrin.  Will also alert my nurses, since there are so few of us on Kadcyla.

  • denny123
    denny123 Member Posts: 1,475
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    TG! One chemo nurse out of five that I talked to today, had a patient with the pelvic and lower back pains that I had.

    I also had shoulder and chest pain.  But at least it proves that this is a Kadcyla SE.  That patient has had 3 tx's and had the pelvic pain each time.

    Before I talked to that nurse, another nurse said that the people to whom we should pose questions about SE's, are the drug reps for the chemo.

    So anyway, I now know that as soon as the pains start, that I should hit the Motrin.

  • CJRT
    CJRT Member Posts: 221
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    I've been on it for a year. Initially had met on my femur and metastatic node. Node has decreased in size and uptake, hip is clear following radiation and partial hip replacement, and no new areas of disease. Only numbers that have been off have been low potassium. I've had an excellent quality of life on the medication with 2 days of fatigue, one worse than the other, and some increased headaches for a day or two. If I was on my own, I'd just take it easy. However, because I have two young kids, I have help with them for 2-3 days. Best of luck to you!

  • denny123
    denny123 Member Posts: 1,475
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    My fatigue is every day.  My nurse said it is because I have been getting tx for 12 years.

    Oh well.....

    I have a store on eBay, and am doing my best to keep caught up, with over 1,500 items listed.  But it sure helps to pay my bills.

  • texasrose361
    texasrose361 Member Posts: 895
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    i find if i fight through the fatigue during the day i get a lot done before kiddos come home. Thry get off at 2:30, we come home and i nap til about 5 ish and then dinner prep. Works for us.

    Swelling in face: I was told yesterday i have cushings syndrome, from the steriods. Nothing i can do but wait it out. 

    No new side effects since my 3rd tx, next thursday is my next dose.

  • Trish03
    Trish03 Member Posts: 65
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    I also have fatigue which is worse some days than others. It's never so bad that I have to stay in bed, but I do take it easy on those days. I hope it means that my body needs to rest because it's working hard kicking those liver mets.

    I also have lower back pain, again not ever day, but fairly often. My daughter and I went shopping yesterday, and my back hurt most of the time. If I sit down for a few minutes, it lets up for a little while so I can walk some more. It never hurts when I'm sitting, only when I'm standing or walking. It seems to get a little better during the 3rd week of the chemo cycle. I assume that it has something to do with the Kadcyla, but I don't really know for sure.

  • denny123
    denny123 Member Posts: 1,475
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    My fatigue is every day.  My nausea seems to last for 12 days.

    I had lower back pain yesterday, but I baby-sat my 23 month old grandson on Monday and Wed and had to lift him a few times.

    I was blaming the pain on lifting him.

  • Trish03
    Trish03 Member Posts: 65
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    Sharing some good news!!!! Yesterday I had my first scan after starting Kadcyla...after  3 cycles. The scan showed significant reduction in the tumors in my liver. That's such wonderful news after having progression on my last two scans on perjeta and herception. I hope I have found a drug that work for a long time.

    I did see my onc on Tues. about the allergic reaction I had the night of my last treatment. He's going to load me up with pre-meds next time and also told me to take the dexa that I took with Taxotere. Surely, all of that will proven another reaction.

    In reading all of these posts, I can see that the se's are all over the map. I'm very fortunate - so far - that I haven't had nausea, headache, and pain, except for occasional lower back pain. I do have fatigue, some days worse than others.

    I hope that all of us continue to see good results from Kadcyla. I'm very encouraged by those of you who have been on it for several months.

  • texasrose361
    texasrose361 Member Posts: 895
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    Good news indeed Trish!

    Fatigue seems to be a common thread.

  • denny123
    denny123 Member Posts: 1,475
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    YAYAYAYAYAY!  Trish!  

    That sure makes me feel happy!  So happy for you.  So it sure gives me hope!  

    Keep up the good work!

    Denise

  • denny123
    denny123 Member Posts: 1,475
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    Saw my onc today and had third tx of Kadcyla.  He said my Echo was great and that he wants me to have 3 more tx of Kadcyla with a PET scan the end of June.

    Asked about the nausea and he suggested Nexium.  Nurse suggested generic Pepcid to start. And if that doesn't work to go to Nexium.

    So I got the Pepcid on the way home and it does seem to help.  I told her that I have had to eat every 3 hours for 11 years to keep down occasional nausea.  She said that that seemed to be an acid problem, which I never considered since I don't have heartburn or anything.

    So I plan to try a few Pepcid daily to see if the nausea gets better.

  • gonegirl
    gonegirl Member Posts: 1,022
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    Trish, congrats.

    I started Kadcyla Nov 2013.  I had been on Taxol for 5 months, then just Herceptin for over a year.  5 cm cyst on liver. After 2 treatments with Kadcyla, tumor shrunk by half.  Here are my side effects. They vary based on cycle of treatment.

    • Dehydration
    • Elevated liver enzymes
    • Lowered platelets
    • Mild nausea here and there
    • Fatigue (worse 2 to 3 days after treatment)
    • Muscles cramps here and there (might be related to dehydration and not getting enough water)
    • Mild numbing neuropathy in fingers and feet (comes and goes)

    Certainly, comparted to Taxol, this is a breeze. Praying it works a long, long time.

  • denny123
    denny123 Member Posts: 1,475
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    Good luck grit!  Thanks for posting!