Kadcyla- TDM1

CLG72

Hi there,

I will start Kadcyla next week and I wonder if anyone else is on it and has tips. Also, how soon after a dose did you experience side effects?

Thanks you,

CG

Debsmisto

No responses yet? I too start Kadcyla next week, would sure like some feedback from those of you already on this regimen

KayGirl

I may be switching from Herceptin alone to this one if my margins don’t come back clear after surgery next week. I was terrified of side effects being like TCHP chemo, but my doctor assured me that the side effects are basically nothing on tdm1. She said some people feel “blah” but that it isn’t bad at all, especially if you’ve gone through any other taxol. Good luck! Keep us posted on how it goes!!

Cascadians

There are some earlier threads about Kadcyla. Since it is newly fast tracked for residual treatment, thought I'd post on this thread.

Might be switching from Herceptin to Kadcyla soon after having a tiny speck of tumor left in mastectomied breast and 1 sentinel lymph node.

Hoping for zero side effects.

Jjewel

How are you doing on Kadcyla? I’m starting soon......

Jenny

Cascadians

I had my 1st of 14 Kadcyla chemo infusions this past Monday. For Pre-Meds I got Pepcid, Decadron and Morphine since having a severe shoulder and back pain reaction to my first 3x/dose Herceptin. So far OK. Return of stuffed runny bloody nose. Headache. Tired. But so far not as bad as Taxol.

Hard to compare because 6 weeks post double mastectomy surgery and still in a lot of discomfort and have cording web syndrome in left arm, really hurts. Working with physical therapist on that.

Radiation is recommended but I don't think I can handle that, not healed enough from surgery (diabetes = slower healing) and already have problems from 2 sentinel lymph nodes excised. Just can't see radiation on top of this cording -- I'm already going mad with pain.

Plus will have to add Letrozole soon to stop estrogen and that raises lipids so will have to take something to combat that -- avalanche of side effects from all these new drugs. Ugh. Praying I will be able to tolerate the Kadcyla.

Cascadians

5 days post 1st Kadcyla infusion, ugh, feeling weak, achy, exhausted, wiped out. Some slight headaches, a little nausea. All I want to do is lay in recliner under blanket and sleep for a month with no interruptions, don't want to be conscious. Hopefully this phase will pass soon.

Jjewel

Cascadians,

So sorry, sounds rough. How often and for how long is your treatment?

Jenny

Cascadians

3.4 Kadcyla every 3 weeks for 14 treatments. Into next December! 1st infusion was 90 minutes. Some ppl go down to 30 minutes after 1st infusion if no reaction but I'll do 75 minutes then stay at 60 minutes because I couldn't do Herceptin for 30 minutes, too intense. Got better 1st go-round on Day 7 after 1st infusion. Praying it gets much easier now.

cagberry

Hi y'all. I'm also scheduled to get Kadcyla on 3/25. I'm also so scared of SE. I finished my 6 rounds of tchp on January 2nd. It was horrible for me . Mainly gut and diarrhea along with 10 of the 21 day cycle in bed. Definitely glad that is over with. After my surgery and all these antibiotics my gut now seems to be somewhat normal. 4 weeks out from double mastectomy no lymph nodes other than Sentinel biopsy and immediate prepec DTI. Also had issues with healing and have been on heavy antibiotics for 4 weeks which I think are causing me heart racing/ anxiety problems so I'm stopping those today. I will talk to my doc on Monday before starting kadcyla. I'm hopeful and look forward to hearing how everyone does with this new treatment.

Jjewel

How are you guys doing? Did it go better than hard chemo, cagberry

Cascadians

2nd Kadcyla infusion today, 75 minutes, 3 Decadron orally, then Morphine 2ml and Pepcid thru port as Pre-Meds. I slathered with numbing cream 1.5 hours beforehand. Also took 2 Tylenol, 1 Claritin and 1 Zofran before heading to hospital. Will be going to get another Echocardiogram in a couple weeks to make sure the Herceptin isn't damaging heart, standard protocol. Labs were good.

Praying the Kadcyla completely destroys any possible tumor cell anywhere in body. Have to start Letrozole May 1 to get rid of estrogen.

Healing from double mastectomy. All this pretty much consumes daily life, trying to stay alive and not feel too crappy. On lots of supplements.

Main new side effects from last Kadcyla were intense fatigue and several slight headaches. And it IS constipating, so using prune juice, probiotics, and Senekot. Drinking a lot of water.

Good luck everybody on Kadcyla!

Jjewel

That sounds pretty rough, Cascadians Is it going worse than Taxol for you? Everyone’s different but that’s a lot of pain relievers to be taking. I don’t do well with them. Taxol was hard but I just had to take steroids, Benadryl and Pepcid, Ativan sometimes in the beginning. I’m praying it wipes it all out for you! 😊

Cascadians

Taxol was worse. Coming down from Kadcyla #2 steroid high, crash not as bad as 1st time. Not taking any pain meds except day of infusion. It is worsening foot and hand neuropathy a bit, so upping my intake of Neurosol and Alpha Lipoic. I ice my hands and feet during infusion. MedOnc said several patients have reported to him fatigue during 1st week after infusion with Kadcyla.

cagberry

I have to say pretty good. I'm six weeks post op and 2 weeks into infusion. My SE are mild. Tired in the afternoon, stuffy head, headache yesterday am controlled with Advil, and off balance. Neuropothy seems to be ticking up a bit. Ive been working half days last two weeks and hope to get back to regular schedule next week. Doesn't compare to TCHP h*ll. Way managable...so far.

Jjewel

I’m thankful to hear you are doing better with this new drug. It’s a tough road, you’re in my prayers, Cagberry & Cascadians. It’s a battle for sure, thank you for sharing. This thread may expand as Kadcyla becomes more common treatment.

How are you doing Debmisto? I know you had a rough go with chemo last year.

Jenny

Erkipper

I have my 5th treatment tomorrow with Kadcyla. My main se are bloating, queasy feeling and tiredness. The bloating and queasiness only last a few days, being tired lasts longer. I go for my echo on 4/22/19 to make sure my heart is in good shape to continue on the Kadcyla. Back in December I had two seizures due to the cancer mets in my brain and a few swollen lymph nodes. Started Kadcyla in Jan and I had ct scan in March and my lymph nodes were back to normal size so i know it worked and I pray it continues to work.

nanette7fl

Hi I'm starting Kadcyla next Friday. Currently 10 days post BMX. Looking forward to this next chapter in fight this beast!!

Jjewel

Saying big prayers for you Nanette, and all on this treatment. I visit with a new MO on Monday, current one said we should get started soon. (We are relocating)

Jenny

nanette7fl

ok I'm day 3 of Kadcyla and woke up in middle of night seriously nauseated then vomited. Nausea is on and off for most of the day today. Took some zofran to ease this.

Anyone else have this?? Doesn't seem like a good way to start treatment 😥

Cascadians

Nanette sorry you had nausea. I get Pepcid pre-med before infusion, also morphine and decadron. At home 1.5 hours before infusion I take 1 Zofran, 2 Tylenol, 1 Claritin and numbing cream. All this gets me through the Kadcyla infusion over 75 minutes with no nausea or pain. I'm sensitive to Herceptin with intense shoulder / back pain and this stops it. I've found if I can stop the effects for the infusion, the whole 3 weeks are better. Hope this helps you.

el7277

Hi all...had my first Kadcyla last Thursday and, knock wood, I feel pretty good. I had residual cells found with bmx and this is my new regimen instead of herceptin alone. My wbc has been low since my surgery on 4/25 but I have read that antibiotics can contribute to that and I had quite a long course of them. My MO had me go in for a shot 3 days in a row after first Kadcyla infusion as he does not think insurance will cover neulasta any more. It is all so frustrating and there are so many moving parts during this sucky journey. I go back to work next week...will be 6 weeks from surgery. I worry about 40 hours weekly as this fatigue does not quit. How are you guys coping and are you working? I may adjust to a 30 hr. Schedule if my organization allows. I am torn between wanting to go back and being stressed about it.

nanette7fl

el7277 I think you'll like being on Kadcyla. I really like it. I have symptoms the 1st 10 days (runs, poor appetite and tiredness) but the next 11 days are pretty much symptom free. I've just had my 3rd dose last Friday and my MO informed me I'll be having a total of 37 and I'll finish up in December. I haven't had any problems with this eating up my WBC's but it does go after my platelets pretty hard that 1st week but the slowly come back up in time to be knocked down again. Sorry your insurance might not pay for the Neulasta that's awful!! Enjoy going back to work it might be just the thing for you.

el7277

Thanks Nanette. So far, so good. Yesterday (day 5) I felt a bit dizzy and then fatigued for the rest of the day. It is good to know you are have g a decent experience. My wbc had been down since surgery, but I had my surgery 3 weeks after last TCH and then was on antibiotics so I think my body is like wtf?

In looking at the diagnoses and treatments of people receiving Kadcyla it seems a lot of us did not receive perjeta. Wonder if there is a correlation. I will have Kadcyla for one year at a span of every three weeks. Seems doable so far but depressing that I had been coming a bit out the the fatigue before starting. Whatever it takes, right?😊

nanette7fl

Kadcyla could be doubling the effect of chemo leaving your body. It cam take up to 6 months for it all to go away. I hear Herceptin and Perjeta had bad SE's so I'm glad to be on this. Sounds like you've had A LOT going on recently so try not to be too hard on yourself 8)

DawnS1962

Nanette, MO talked about putting me on Kadcyla. Can I ask when it starts? Is it after chemo is finished? He did mention it would be once every 3 weeks so I'm assuming with Herceptin and Prejeta.

Thank you!

nanette7fl

hi Dawn. Kadcyla is for metastatic BC. Mine was found after chemo, I had neo-adjuant, and during my Bilateral mastectomy. Yes, It's given every 3 weeks after chemo and it replaces Herceptin and Perjeta as it's actually Herceptin with chemo attached to it. So when it attaches to an HER2+ cell it goes BOOM and destroys the cell instead of disabling it. I really like that about Kadcyla. Now because it's every 3 weeks it's a "large" dose but after 6 doses I've gotten used to my cycle on it. I have some SE's the 1st 10 days and the next 11 are really good. Now this last cycle I felt more like me on day 6 instead of day 10.

My MO doesn't understand what I said because he says but it's still Herceptin.... lol i think it's that small amount of chemo added to it. I'm the 1st BC patient in my area on it. He just added another woman in the past 3 weeks ao I must have built up his confidence in it.

Keep us posted on how you do

el7277

Dawn...it is also for those who received neoadjuvant chemo but did not achieve pCR. My tumor shrunk from 1.7 cm to 7 mm which came out after chemo during my bmx. I started kadcyla after my MO received the pathology report from my surgery and will get it every 3 weeks for one year.

DawnS1962

Thank you both for your input. I forgot to save this page to favorites.

My tumor shrunk from 3cm to 1.7cm. I'm thinking MO is concerned the cancer is still active.

nanette, so glad you're doing well on Kadcyla. I didn't have an awful time on AC or Taxol so hopefully I won't have a hard time on Kadcyla if I have to take it

nanette7fl

Dawn that is great reduction!!! It's supposed to work wonders on residual tumors. Mine was 3 cm and shrunk to 1.7 mm with taxol. Dawn, will you be having breast surgery before starting Kadcyla?

DawnS1962

Yes. Surgery should be end of August or beginning of September. I'll have a mastecomy of my right breast. PS will put in an implant and hopefully that's it as far as surgery. I'm not doing nipple reconstruction. I'm going to get a tattoo next year.

I'm impatient by nature but I'm learning this is a long process and I have to change. I'm getting better at accepting things as they change. I've realized I have no control over the way things change with all this. I've always admired your attitude Nanette. You're always positive. Funny we're triple positive isn't it? I always thought being positive was a good thing 😜