Who's on Kadcyla/TDM1?
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I was on Kadcyla for almost 4 years and it kept my chest node mets fairly stable, and even put me into a brief remission.
Your mother's onc will test her liver functions and it may not harm her liver at all. My first mets 17 years ago were in my liver, so it has been damaged. But Kadcyla did not hurt my liver at all.
Her side effects are typical, and I had to use Miralax and stool softeners for the constipation.
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Has anyone been explained why Onc choose the meds the do.
Im on Xeloda and its not working yet. Markers are up. What happens if Im chemo resistant. Do you think I should have them remove the node in my axilla.
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Kadcyla failed me after 4 months. All of a sudden my liver tumor tripled in 3 months. My Dr. wants me to try taxotere again. I was on taxotere with perjeta and originally with TCH. Taxotere did knock the liver tumor back before. MBC for 51/2 year Hert2+, Est+, brain tumors(radiation), liver tumors(taxotere+ radiation), spine tumor(radiation). Now wants to do taxotere/herceptin....taxotere is very hard.
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Good luck Reagan! In 2004, my liver was filled with mets and a (then) clinical trial of Gemzar with Herceptin wiped them all out in only 9 months. So that could be an option for you.
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Hi, I’m starting Kadcyla on Monday after I was diagnosed with a metastatic recurrence to the lungs. Apparently HP + taxol did not work. I don’t know how long this will work for me
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Hi,
Wanted to share some good news.
Today I got the results from my first scan after having started on Kadcyla/TDM1 late October 2018; i.e. after 3 infusions.
The CT scan showed healing of bone met, and the PET showed no metabolic activity, - yeah!
Also my blood work was normal today, - so I continue on this treatment, which up till now has left me with fairly mild side effects, i.e. some fatigue and GI issues the first week, but with treatment intervals of 3 weeks it has been manageable.
It is always stressful waiting for scan results, and especially after having switched to a new treatment.
Best wishes to all of you waiting for scan results.
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Hi all, I am starting Kadcyla next week as a preventive after having residual cancer in my breast and lymph nodes during surgery after TCHP regimen. This is the new protocol for those of us with residual cancer since the Katherine trial resulted in fda approval for just this situation. I did just have 2 abdominal scans and a bone scan this week and don't know results yet but if there is no progression I start Kadcyla Monday. I have read thru many of your posts to assess side effects and of course am hoping to be one of the lucky ones that can tolerate this drug combo. I had only 2 herceptin perjeta infusions left so this was a disappointment to be starting over with 14 infusions every 3 weeks of Kadcyla. I'll keep you updated and thank you for being here!
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Hi there,
I started on Kadcyla 8 days ago due to 2.5 cm residual cancer found in the lumpectomy tissue after taking TCH for 14 doses for triple positive breast cancer.
My SE's are fatigue, nausea in the am, dry mouth,bloody nose and no appetite. Does anyone know what the nadir is? My oncologist said day 8 and she googled for that.
Thanks,
Cara
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CLG72
I googled what Nadir was as well. I started my first infusion of Kadcyla on 2 weeks ago. This is what I found:
In cancer treatment, nadir commonly refers to the lowest point that an individual's blood cell count will reach as a side effect of chemotherapy or radiation therapy. The nadir for each blood cell type occurs at different time.
Ive experienced fatigue and no appetite. My nose is a little bloody when I blow, but not a full on nose bleed. Go for my second infusion on Feb 5. Hope I do as well as alot of woman on here are doing. Going through this again sucks but a lot of positive vibes on these forums!!!
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Hi there. Wanted to ask any ladies on Kadcyla if there symptoms are worse after each infusion than the prior infusions. After my first infusion I felt ok, the second was a little worse and after my third I missed two days of work following my treatment with nausea. Is this cumulative? I have an appt with my onc on Monday but thought Id ask ladies who are actually on it? Also does anyone get a metallic taste in their mouth every once in awhile? May need to ask about that too. I go for my CT scan on Monday as well. Im hoping to have good results like Ive seen on here. Can anyone recommend nausea meds that actually work? Good luck to all on here. I pray for everyone dealing with cancer and their families.
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Erkipper, I only had a short run on Kadcyla - five cycles or so. I was told to take 50 mg prednisolone (pill) one hour prior to treatment to prevent nausea, so I never had nausea. When you see you onc you could perhaps ask him about pre-meds to prevent nausea. I found Kadcyla very doable - brittle nails and runny dose from the Herceptin, only. Hoping for good results of your scan and wishing you all the best.
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Hi Erkipper, sorry to hear that you are feeling poorly after the Kadcyla infusions. As ADDK asked, I was also wondering if they are giving you an anti-nausea pre-med? I used to be given compazene as a pre-med but I found myself to be so irritable and fatigued after my infusions that I decided to skip it once and see how it went. I've not taken a pre-med since because I feel better without them though they did offer to switch to a different one if I wanted but I don't get significant nausea from Kadcyla. Perhaps if you get premeds they could tinker with those and see if different ones would work better for you. Also, I try to take in lots of fluids before, during and after each infusion so perhaps that helps. And, I have made an effort to up my probiotic intake in order to decrease drug induced gastro-intestinal issues - I think it helps. I haven't noticed a metallic taste with this drug but I remember it well from other chemos - I just tried to eat my way through it.
I'm sorry, I'm not sure this is helpful especially since we all respond so differently to these drugs but thought I'd share my strategies in case it might be useful. Hope your scan is good! -Margi0 -
Erkipper-I was on Kadcyla for almost 4 years and it got easier as time progressed, However, my nose bleeds did get worse.
I got Kytrill as a pre-med first, but that didn't help. So I then got Emend and Aloxi, which was better. Compazine could be taken afterwards, and Zofran could be taken after a week. Either Emend or Aloxi was the same as Zofran, so that I why I had to wait for a week.
I found a very good OTC for nausea-Emetrol. All drug stores have it.
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Debsmisto - I am also considering moving from HP to Kadcyla and P. I needed to do rads so we stayed on HP after my carbo was completed. I'm surprised that you are starting the entire regimen all over again. I have finished 9 of the 16 HP treatments, and our plan was to simply substitute Kadcyla for the H in the last 7 treatments. Did you guys discuss substituting vs. starting over? I'm wondering if I should reconsider something. I also discussed with my MO last week moving to Xeloda and finishing HP concurrently.
I have triple negative and HER2+, so we are balancing trying to treat all.
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hi ladies,
Hey Debs nice finding you again. I am also on TDM1 for preventive use due to high chance of recurrence. I will be going for my 3rd infusion tomorrow and will only have 4 since I had done Herceptin prior to the TDM1 approval.
For those who have nausea, I literally start vomiting while it’s beibg infused so tomorrow onc wants me to take a steroid yuck.
I do get nauseated for the entire 3 weeks, but it lessens as the days go by but always present. I get slight blood from nose and metallic taste is horrible. I use plastic spoons and it helps, but carbs intensifies that taste where they taste like cardboard.
Neuropathy is way out of control but I must fish these last 2. Might also be the letrozole, who knows
Wishing everyone success with all treatments.
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My Onc moved me to Kadcyla Sept 2019 after HP allowed disease progression: peritoneal carcinomatosis. I did 7 rounds of Kacyla and other than an itchy rash on my face and neck that lasted 9 days, I just had persistent fatigue. I did notice some hot flashes and increased thirst throughout the 3 weeks. Unfortunately, Kadycla did not work for me so I'm on to the Her2Climb trial.
Are you still on this regimen?
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Hi BuckeyeAmy
What was the issue with the Kadcyla for you? Did it not stop progression? I have the same type of cancer Er-/Pr-, Her2+ and metastasized to my lymph nodes and brain. Starting my 4th treatment Tuesday. What is the Her2climb trial? Thanks for any info
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ERkipper- my brain mets grew very quickly while on this drug. I only lasted 5 months on it.
Her2+ climb is a trial of keytruda with Xeloda I believe. Keytruda is supposed to have better blood brain penetration. It’s had great results.
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ERkipper-
I can tell you why I was taken off this drug after only a few month. I don’t want to scare you but my brain mets came back after I was switched to Kadcyla. It was great fur my liver mets but we switched to taxol/Herceptin/perjeta as this drug was not affective against my brain mets. I do know however that it does help a lot if people do I count myself as unlucky.
The Climb study is a trial that involves keytruda and another chemo agent I think Xeloda. Keytruda is a super Herceptin and has proven to have more potential treating CNS lesions. I am not eligible for this study as I have already been in and failed Xeloda.
I hope that answers your question.
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ERkipper, I don’t have brain mets than I know of but am in the HER2Climb trial. I’m taking Xeloda+Herceptin+tucatinib/placebo. It is a phase II trial also admitting brain metsters. I think enrollment ends in May this year
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ADDK - thanks for fixing my error.
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For those of you on Kadcyla, are you getting any other meds with it? I've been on Herceptin & Perjeta for 2 years, added Taxol in September after some bone mets progression, then switched to Navelbine in November after allergic reaction to Taxol. I'm having progression again and my onc says I'll be switched to Kadcyla soon. I was just getting used to Navelbine!
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Hi mlc96,
I am not getting any pre-meds with Kadcyla, and apart from Kadcyla infusions three weeks apart, I get Xgeva four weeks apart. Kadcyla has been much easier on me than Navelbine. I hope you also find Kadcyla to be one of the easier treatments.
Meja
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mlc96...I was on Kadcyla for almost 4 years. I started with Kytrill as a pre-med, but still had nausea. So I then had Aloxi and Emend prior, and that was better.
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hI ladies, I am starting Kadcyla tomorrow. Thank you for the tips. I was diagnosed stage IV in September 2016. I have had letrozole, navelbine, Herceptin and Perjeta. I recently tried Faslodex with the Herceptin but have had progression. I am hoping for success!
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Hi Fraidycat1954,
Wishing you success with Kadcyla.
Drinking lots of fluids on the day of the infusion and the following days eases SEs for me.
Take care, Meja
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Thank you Meja. Your support means a lot to me. I am getting the first infusion over 90 minutes. They want me to stay 90 minutes after! I am trying to talk them out of that. I feel fine. I know next time it will be easier.
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Hi Fraidycat,
Yes next time should be easier, i.e shorter = 30 min. I have had 7 infusions and the last 6 were given over 30 min, and I didn't need to stay, as I haven't experienced any allergic reactions.
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I finished my first Kadcyla infusion yesterday. We are doing it as a single agent. No pre-meds, and over 90 minutes. They said the rest of infusions will be 30 minutes. I've moved from HP to Kadcyla. My plan was to just do 6 cycles of this which would essentially mirror the full Herceptin regimen if I had stayed on that. But the pharmacist and MO said yesterday we should discuss next time.
I bit tired and queasy today, but feel pretty good. Washed the cars and drove 3 hours to the beach. Sometimes I wonder if I remember what feeling normal is:) My echo showed a few weird things, but we're sticking with the plan for now. I'm hoping dropping the P will allow my hair to start growing again.
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Hi Beach: Are you getting Kadcyla as a Stage 3 treatment? If so, that is great! I hope it works well for you. Please let us know how things go for you!
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