Who's on Kadcyla/TDM1?
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Thanks for sharing!!!
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Welcome Fran
I've been on Kadcyla since June 2016 and have very few side effects. I feel a bit 'under the weather' the day after the infusion and once or twice this feeling has lasted a couple of days. So far I've always been back to normal by day 3. Liver function seems to go up and down but my onc has never felt it necessary to delay the infusion or lower the dose yet. I'm hoping to be on it for as long as possible.
All the best with your treatment and I hope you get those nosebleeds under control.
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Hello ladies!!!
Hoping everybody is doing well.
If you have some time you guys can check this info
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Hello Ladies!
i had my phase 2 of reconstruction DIEP surgery on Jan 24. 2017 then had my 7th infusion of kadcyla Feb 9th. everything is going well as I hope it is for each of you.
i sort of whined a little bit with my last infusion with dr and nurse about staying for that extra half hour to be monitored after kadcyla, I told my Onc i feel like if I was going to have an allergic reaction to kadcyla I think I might of had it by now so... my Onc said he would discuss with my ONc nurse..... she made me stay ... drats.
ps..... (FYI.... I had my phase 1 DIEP reconstruction August 2016)
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Hello, girls...
I'm back. After a long writing hiatus (so sorry, but I kind of got busy, LOL), I am writing to say that my Onc kept me on Kadcyla after all, with a little lumpectomy thrown in.
I've now been on this drug for 1 year. SE's are: neuropathy (manageable with Neurontin/Gabapentin), dry mouth, and some liver enzyme elevation (very normal and Fox Chase Cancer Ctr. monitors this closely).
Drug has kept my CA:15-3's at normal levels (below 35, I think is the top of normal). It has also prevented metastasis to any new sites and has kept the previous sites (liver and some lymph nodes) fairly normal. I'm wearing my own hair now and it's come in with a slight curl and is salt and pepper gray and looks pretty doggone good, if I can say so myself.
It's a great drug, though my initial breast cancer lump started to grow all on its own (the little rascal) back last summer. Looked like I was gonna move back to chemo and I was less than excited. Thankfully, Onc decided lumpectomy would be sufficient; thus far, thank the Lord, it has been.
I'm very encouraged by all these posts on this thread; tried to read all the ones I'd missed between August and now, but gave up on that for now and will go back later to read up on it further.
I'm sorry if I discouraged anybody back in August (mostly me!) but I didn't know what was in store for me.
Keep up the good fight, ladies!
Love,
Miriam
(a hot early June night at the Bob Dylan concert at the Mann with the fam - blurred pic makes my wig look better)
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nice picture Miriam, You have a Nice family.....
Hope everyone is going good.
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ahhhhh! Scan tomorrow at 130pm to see if Kadcyla is working after 3 rounds. Anxiety is building up, not sure how productive I will be at work today. Will likely hear back on Monday on the results. Please send positive vibes and prayers this way... I hope I don't drive my family crazy over the weekend!!!
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Gramen:
The more important thing is how do you feel?
I kind Like feel when things are not right, I have pains ... I know my body ... I am try to understand the feeling when the cancer is coming back or growing...,
If you feel good, that is a good sign .... Try to not worry to much because is not good ( I know is very difficult) try to keep your seft positive...remember if we are sick or not sick ... We are still alive!!!
Try to enjoy this weekend with your family!!! Turn bad vibes intogood ones
I going to keep you in my prayers and sending you the good vibes....
Please let us know how things are going....
Hugs!!!!
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thank you escorpion!!!!! You are so right, we are still alive!!!
And quality of life with Kadcyla is good! What you describe is the scary part for me, I feel a little something but hoping is shrinking tumors ...
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Gramen :
I started Katcyla in November 2016, and i know what you are going trough , I was experience tremendous amount of pain in my arm , It was very scared, always worry ..... Because didn't know if was medication or the sickness ....but now I know that was the medication working......so we have to give a chance to the medication to work.... And it will take some time....the more important thing is that we have a medication to help our condition , and that it will keep things under control ..... Imagine what will be of us if we didn't have any medication????
Have a great weekend!!!
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Welcome back Miriam and you look great!
Had my Kadcyla yesterday and just very tired. I have been on it for 3 years and have been noticing lately that my leg aches and nasuea have gotten much better.
I did change to Emend with Aloxi for the nausea and it really helps. And I sure don't miss the leg pains.
The nose bleeds are making me crazy, especially since my sweet grandson has given me 3 colds in the last 3 months that go on forever. The main problem is that I have to be very careful to blow my nose verrrry gently so the bleeding doesn't get out of control.
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kadcyla is working!!!!
I wanted give a quick update since I shared an interview here about not seen responses to kadcyla after navelbine (see at the very end of this link http://www.onclive.com/peer-exchange/advanced-brea...)
I was on navelbine/Herceptin/perjeta for 8 months and with progression switched to kadcyla but we were very scared because of these anecdotal reports...But we got a response and the liver metastases can't be seen anymore!
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gramen...... THIS is great news girl!!!
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Gramen:
💃🏾💃🏾💃🏾💃🏾
I am very happy For You!!!!
Great news!!!
Hope every one is doing well !!
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I hate to see breastcancer.org get political in that there is enough stress and drama without bringing cancer into it. I'm independent and wish for peace among all. I don't like anti anything!
With that said, I'm on Medicare and purchase a supplemental plan that covers most of my expenses. I was told that even if I wasn't stage iv that I could be covered either by the state or on Medicare for those with disabilities and who are under the age of 65.
I think we need to hold judgement and wait and see what happens.
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I've been on Kadcyla for almost a year. Because I am hyper-sensitive to medicine, I take mine two weeks on and than off a week. My oncologist also lowered my dose. I've a lot of leg bone pain, neuropathy in feet and legs especially around the ankles. I've some numbness in my left hand. I hate it when I drop things.
I have weepy eyes and nose bleeds.I've four hours a day where I'm good. The rest of the day not so good.
Now that it's warming up I hope soon to swim twice a week.How many of you are given pre-med?. I take about four...? It's the steroids that get me, but my oncologist recently cut it in half. She also lowered my Kadcyla dose. So far a lot of the tumors are stable or disappeared. I wondered, if I stopped the treatment for a few months if the ones that disappeared would come back? I would love a vacation from treatment.
I'm on nothing else but blood thinners due to a previous DVT and Xgeva.
I've a PET scan tomorrow. Hopefully everything is stable or NED.
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YAY Gramen! Praying for continued success.
Hindsfeet-I am only alive because of Obama's pre-existing clause. If we lose that, we are in deep doo-doo.
Enough said.
I have been on Kadcyla for 3 years. I get Emend and Aloxi for nausea and pain, Decadron IV and an antihistamine.
I did go into remission and went off Kadcyla for 9 months with only Herceptin. My 3 nodes came back plus 5 more.
So I won't be going off Kadcyla again, although a reduced dose might be a possibility, if that is allowed. But only if I achieve remission again.
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congrats on the good news, Gramen!
Hindsfeet, I only receive compazine as a pre-med to Kadcyla. I haven't been on it long enough to get a break yet but I too wouldn't mind a reduced dose or something if it might help reduce the neuropathy. I also have the tingling hands and feet. Some days worse than others - usually better when I've had exercise
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I get no pre meds... or no meds after Kadcyla.
CT for me tomorrow.
Hugs to all of you Beautiful ladies.
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hindsfeet:
I agree with Denny123, is too risky to get off this medications, the fact that any one is NED doesn't mean that you don't have cancer.... The medication is the one what keep it dawn ... As soon as you give the chance it will grow back.
And it can came worst, I was with herceptin and perjeta and I got a progression while in the medication, and I matter of monts it was going crazy in my bones, you have to remember that CT scan can detect only what they can see....
That means that the cancer is in the body even if we don't see it...
MargaritaML suggest exercise, maybe some other forms or therapy.....
Good luck!!!!
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Hello Ladies just had my fifth dose of Kadcyla. Last week's PET-CT scan was good news. We're not at NED or remission, but they are calling the disease stable. Which is okay with me. I do get pre-meds as well
I was troubled by ankle pain from neuropathy about two weeks ago. Met with the Palliative care specialist and he increased my Neuorotin from 1200mg per day to 1500 mg per day. He also added 15mg of MS Contin once a day at bedtime. What a godsend the MS Contin has been. Mind you, I sleep a lot more, but the pain is practically gone!
Also took up knitting again, something I haven't done in years and the distraction from the knitting has decreased my awareness of any discomfort. - I believe I will become on those church ladies that makes baby blankets, and hats for baibies as well as hats for women to pick up at The American Cancer Society!
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Great news, pwilmarth! We'll take stable! It's also good that you have gotten the pain under control. I have also had neuropathy with some painin my feet and to a lesser extent in my hands but I've found that it is becoming less intense over time. I've lost count of how many Kadcyla treatments I've had but probably been at least 6 or 7.
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Hi All,
I've had two doses of Kadcyla and I must say, I'm tolerating it well overall. However, I'm noticing that there is definitely an increase in my overall fatigue (particularly in the late afternoon and evening). Some nights I just feel so exhausted. Any one else? If so, any advice you may have to counteract it would be greatly appreciated.
Thanks
Fran
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Yay Pwilmarth! Stable is great! I had more aches and pains at first, but have found this tx to be more tolerable now.....except for my nose bleeds.
Fran...I have been on Kadcyla for 3 years and the fatigue is daily. But I have been on chemo for a total of 15 years, so I can attribute my fatigue to that.
There really isn't anything that we can do about the Kadcyla fatigue since it is a common side effect. But sleep helps us to heal and fight the cancer.
Good luck!
Denise
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Hi, The fatigue is worse for me when I get the Xgeva shot with it. I guess I should say more bone pain. Usually lasts about a week to week and a half. But feels so good when it lets up some. Tumor markers are coming down. So am very thankful for that. Have to go for a muga scan this week. I had some nose bleeds at first but not much now. My finger nails are shot. I started taking biotin on the last chemo and it really helped but isn't helping at all now. I thought about raising the dose but haven't yet. I haven't had any stomach problems so far. Nice to be able to taste food again. I do get a bit constipated for 3-4 days after treatment but easy to eat for it so hasn't been a big problem. Over all this isn't bad. Hope everyone is doing well and able to accomplish something. Feels so good to be able to do something. Thanks for listening, nice to have people who understand.
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Hello Ladies~!
met with Oncologist today (and for my labs have kadcyla tomorrow) and review CT scan... all is good. each time i have a ct scan the mets are shrinking but they are very very teeny and... I and my team want to keep them this way. so doc said as long as I am tolerating kadcyla I will keep going. i will have my echo in 2 weeks ... just hope all the tenderness from the phase 2 breast reconstruction has eased up because I wont be able to allow the tech to push that wand in between my breasts that bone and area is still very tender. oye.
Wishing all of us... the very best. ((( Hugs )))
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That's great news, congrats DL3!
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Thank you gramen!
I spoke with nurse today as I had kadcyla... she said after next infusion I may not have to any longer stay for the half hour after infusion like they make kadcyla patients do now. She said something about it is in the "epic" that it isnt a requirement now. right now I am pretty much requested to stay the half hour after infusion because to monitor to make sure no allergic reactions and this is standard protocol. which I am not fond of lol
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same here, no premeds and no monitoring after infusion, I asked my Dr and she said you can stay around if you want to lol!
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Great news for everyone! I have been on Kadcyla for over 3 years and my nurse said that it is still the protocol to make the patient wait for a half hour after tx.
And she said that is why they print the schedule and run more saline through the IV afterwards....in a way to make the patient stay a little longer.
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