Kadcyla for residual disease after neo adjuvant chemo
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SophieA. Curious what the news from your biopsy was. Hoping it was all good.
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Hi All!
I am triple-positive and had residual disease after TCHP at surgery 12/9/19, so once I finish radiation (2/27 I think) will start Kadcyla. I appreciate hearing everyone's experience with it so far!
I also thought I knew the plan and had come to terms with it, so the fact of another year of infusions really threw me for a loop, but I guess I have adjusted mentally. I have to admit, I am really jealous of the people I see here on the boards who had pCR. But also grateful all of these treatments are now available, whereas 20 years ago most of us would have been screwed.
Have the Kadcyla treatments affected anyone's work other than time off for the infusions themselves?
For the person who asked about the port (previous page and chemo-brain means I am terrible with names of even people I know!) -- I got mine as soon as I knew I needed chemo and have never regretted it. In fact, I love my port. I had more pain/tenderness than most people after getting the port but nothing tylenol didn't take care of. I did get a special seatbelt cushion because I couldn't get a pillow to stay in place and the seatbelt goes right over my port.
Thanks to everyone for sharing their experience!
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Hello all,
Shelligirl thanks for asking.
My skin biopsy was positive. Heavily HER2 ER - . Also had 2, 1cm masses, one in the same spot as the original tumour. This after AC chemo & taxol Herceptin. I had a lumpectomy with re-excision & the second pathology report was clear. All rather discouraging. I started Kadcyla on December 3rd & have had 3 infusions. The SE's have been minimal. Some very mild nausea & a bit tired and achy for the first 3-4 days. The doctor said I have responded well to it & the skin redness has gone away. Awaiting CT & bone scan results. May start radiation depending on those results.
Take care.
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SophieA, that’s too bad, but like YeslamaDrag, said it’s nice that we have options. I was told at the time of surgery that I had residual, but I guess I was in denial because I didn’t realize my treatment plan would change and Kadcyla was the next step. I’ve had three Herceptin infusions and just found out I was being switched this past Friday. One thing that scares me, is I just read a study that was published last month and the dropout rate for Kadcyla was 17%. I’m anxious to hear real world experiences.
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hi guys - on the tamoxifen as of Sunday so today will be the 4th day with the kadcyla (next week is the 4th dose) - so far the same - achy joints and dry mouth - ha! I thought I was just a tad thirsty lol - it's bad to where I can't pronounce/enunciate my words appropriately - and the vag dryness - freaky banana - is just awful, the intimate parts of my life are taking a hit, again the things we tell each other lol - I did have my breasts/nipples tattooed and my tattoo artist created nipples where they should be and not trace my scar lines like I wanted him to do - they look great but I still wish he camouflaged the lollipops - and that's it - I did have an xray of my tendinitis on the right arm because I was scared about it being something else (nothing there, which is great) - and so far the liver is stable - I'm hoping it stays that way as I want this Kadcyla
- praying all is well and if otherwise, is bearable and not preventing awesomeness - I'm here guys 0 -
Hi all!
Yeslamadragon - I also am triple positive, had neoadjuvant TCHP with residual cancer after surgery (Jan) . With great trepidation and some research, I have agreed to begin Kadcyla tomorrow. And will start radiation soon as well. I do wonder about Kadcyla and radiation at the same time.
For those of you who have shared about your Kadcyla experiences so far, thank you. It helps to hear about it.
Shelligirl - according to my MO there is indeed 20% dropout rate, but you can still benefit from whatever Kadcyla you may have gotten till that point. I didn't suffer too badly from chemo before so the doctor says I have a good chance at tolerating Kadcyla .
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Hi everyone. I am currently on Kadcyla and doing radiation. I’m early on with both. Started Kadcyla on 1/2 and that 1st one went well. I felt some muscle/ joint soreness but otherwise felt great. I was doing an hour of cardio most days, started wearing my new blond wig, caring a little more about my appearance... then I had my ovaries & tubes out on Wed 1/22, 2nd Kadcyla on thurs 1/23 and started radiation the following Monday on 1/28. By wed I felt awful. Nausea & fatigue were back. I was upset because I wasn’t mentally prepared for the backslide. Haven’t worn my cute lil wig since. BUT... this week has been good so far. I walked for an hour yesterday, had a good appetite, slept well. Today I still feel fine and plan on exercising later. So I’m thinking maybe having my surgery, infusion and radiation within a 6 day period may have been too much.
I’m surprised to hear about the 20% dropout rate for Kadcyla. My MO’s NP was convinced its easy to tolerate. I hope my bloodwork is ok because I don’t want to stop taking it. I’m curious if that dropout rate is just MBC patients or just “early stage” or a combo of both. It’s only been approved for “early stage” BC patients as of 5/3/19.
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Lulu44 - Why did you go for ovary and tube removal so early on? When i asked my MO she was like you've just been through chemo surgery radiation lets not go for another surgery so soon and all that. Instead i will be on lupron and tamoxifen. (haven't started yet).
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Lulu that is so much to have happen to your body at once! I'm really surprised they would give you chemo right after surgery; I was due for Herceptin 3 days after my surgery and my MO delayed it for 2 weeks instead.
My MO said Kadcyla is easy to tolerate, but he also said that about my TCHP and that was AWFUL and really hard on me, so my warning lights are on now and I'm not trusting opinions of anyone who hasnt done it themselves. Because I'm concerned about SEs, my MO is recommending I wait until I'm done with radiation before starting Kadcyla, and it will be my only treatment so I'll get an accurate sense of SEs.
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Neeli- I wanted to get as much done as I could before going back to work, I’m a nurse and have been out since starting TCHP. My MO wants me on an AI and I didn’t want the shots for ovarian suppression. Im not BRCA + but I had an Aunt die of ovarian cancer at 56 so when presented with the option I just wanted the ovaries out. My babies are 23 & 19 so I’m done with them anyway.
HeartShapedBox- My MO never gave me the option of delaying and it didn’t occur to me to even ask because their attitude about kadcyla was, “we have women in their eighties tolerating it well. You’ll be ok.” (I’m a 44 year old with no other health problems) That being said, they told me TCHP would suck. Nobody told me that was going to be easy thank God, I would’ve been pissed if they had. Kadcyla is SO much easier in my experience, keeping in mind I only have had 2 doses so far. I’m very relieved that this 2nd week of radiation has been better. I neededto have surgery shortly before the infusion because of concern about my platelets. We’re holding off on the AI until after radiation.
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Any of you doing kadcyla while on lupron? How many days away from the infusion day would you get the lupron shot? For many days does the lupron side effects last usually?
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Hi all. I have 2 more Kadcyla doses left. I originally did Taxotere, carboplatin and herceptin but had residual cells remaining. After double mastectomy I began Kadcyla. Cirrwntly, my hair is a freak show so I am still wearing a wig. Has anyone on Kadcyla dyed their hair? I want to ditch the wig but the shortness of my hair combined with the texture and grays keep me from doing so. I have heard of Henna hair dye and am feeling like I need to explore options. Any advice or experiences appreciated.
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hi el7277 - I did Naturtint from the Whole Foods store - it looked ok just didn’t last too long - planning on doing henna being sold at same store but it had more steps - I’ve been wearing it short to work, I’m just so glad it grew back - I had my 4th kadcyla dose - also on tamoxifen
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I am surprised people are getting Kadcyla at the same time as radiation. My MO didn;t offer that and I believed it was standard to not start till radiation is done? I really want to get moving! I want to get through it all (and start the hormonal therapy as well, as my tumor was more strongly ER+ than HER2+
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FNPMom..your hair looks great!! I appreciate the information and I will look at Whole Foods. My "wig lady" told me to use vegetable hair due and she said I should make sure to cut 1/2 an inch off first because that is chemo hair and it will not hold color. I hate the idea of cutting any as I am so glad it is growing but it makes sense.
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I start Kadcyla in two weeks, and I have a question.
I have a rash from herceptin, like acne but small whiteheads and scattered all over my face and neck (including odd spots like between my eyelid and eyebrows!). I am wondering if anyone else had the herceptin rash, and if so, did it continue on Kadcyla?
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yeslamadragon, I had a mild herceptin rash toward the end of my TCPH regimen but it has since gone away since starting Kadcyla. Hopefully, yours will do the same. I am finding the side effects from Kadcyla not too bad so far. I’ve had two infusions so far and each one I felt tired and a bit of nausea day two and three and then fine after that.
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Hi All - I am 10 days out from my mastectomy. The pathology showed residual disease which is why I’m here. My oncologist confirmed today that I will start Kadcyla in three weeks. I’m still trying to wrap my head around 14 more treatments, which will take me to December, after completing TCHP chemo just before new year. I was kinda hoping to wrap up the Herceptin and move on.On top of that is breast reconstruction and starting arimidex. It’s a bit overwhelming. But, I’m finding comfort tonight in reading your experiences. No one wants this disease but I am thankful for all the treatment options.
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Sueba - We wanted to send you a warm welcome to the BCO Forums. We're sorry for the reason... but we're super glad that you are here and you find our discussion boards and other members' stories helpful.
Let us know if you need help with anything.
Kind wishes to you,
The Mods
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Hi guys. Is anyone else having nausea on kadcyla? I’m about to start week 5 of radiation tomorrow so I’m wondering if I’m just getting nauseous, sore and fatigued because the 2 together are depleting me. Even before BC I got easily nauseated so maybe it’s just me. I did so well after the 1st kadcyla that I’m bummed to be feeling this way after the 2nd & 3rd. Starting AI after radiation. Hope everyone is doing well.
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Lulu I had horrible nausea after my 2nd and 3rd infusion for some reason too. I hardly ate for 6 weeks. It was milder after my 4th infusion, and I've had no problems since, just some occasional mild queasiness for a few days but not what I would call nausea. I would imagine that rads is making it even harder on you. Hope you feel better and that your nausea goes away like mine did.
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Hi Lulu - I have nausea with it that I didn't recognize as nausea - felt awful after an infusion - the 4th, 2 weeks ago and I thought to take zofran - felt better after; what I also have is achiness - my onc finally convinced me to take celebrex - I'm taking an odd 100 mg every other day and it helped considerably - I have read people being tired on radiation; I am recovering from the flu and strep - already back at work, still on antibiotic, I have infusion due this Friday - the nurse at the oncology place said I can come in if not contagious - I don't have fever so I'm guessing not - this is ok right? what do you guys think? Thank you much - the Tamoxifen by the way is making me feel more emotional/cranky or maybe this whole thing is finally just getting to me - I hope all is well, y'all.
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Hi all. I had my first Kadcyla infusion yesterday. So far, so good. Fingers crossed I will continue to tolerate it well. Also hoping the COVID pandemic doesn't interrupt the supply chain for it!
Does the Herceptin drippy-nose continue on Kadcyla?
Lulu44: I had nausea on radiation which is starting to resolve now after a week. I hope yours gets better!
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I started Kadcyla in December. I didn’t exactly have residual cancer after TCHP, but my path report mentioned a “rare tumor cell in the lymphovascular space.” Negative for lymphovascular invasion, but we still decided to try Kadcyla. I had a terrible time with TCHP to the point my oncologist considered stopping after 5 rounds.
Kadcyla does Make me very tired for a few days. I do not have thetaste changes, nausea, or other really bad side effects.
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yeslamadragon, my drippy nose has continued but I spoke to my MO about it on Thursday and he said it’s because my nose hairs haven’t grown back in. Kadcyla is not the culprit. I’m having a slow go with hair regrowth everywhere.
I also had a terrible time with TCPH but am doing well so far with Kadcyla
hope everyone is having a good weekend.
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Hello everyone - thanks for sharing your Kadcyla experiences. I’m due for my first infusion on 3/9 - I’ll post about side effects so we can all learn from one another. Has anyone asked for zofran pre-med with their infusion?
For those of you ER+ folks who are on an AI while doing Kadcyla, did you consider not doing them at the same time but waiting til Kadcyla is over? I want to have a conversation with my oncologist about this, so I wondered what your experiences were.
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I just had my 3rd Kadcyla. They give me zofran as a pre med. I’m still dealing with nausea and diarrhea . Taking a steroid to calm my GI issues. Feeling much better .Finally able to eat . Reading all your posts I’m hoping this is a good sign.. I take letrozole at the same time since I’m still ER positive in the last biopsy. I had drippy nose with just Kadcyla. Almost three years. I’ll never get used to it . Hoping it works well for everyone here
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Welp, nausea hit today. Feel like diarrhea coming on but so far nothing. Waiting for the Zofran to kick in.
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I’ve had so many symptoms since starting TDM1. My third round was 4 weeks ago. I’ve decided to discontinue. Extreme muscle/bone pain, mental fog, dizziness and episodes of tachycardia. I can’t be sure it’s this and not something else but I know I can’t function any longer like I have been. It’s a very very difficult choice and I’m nervous to tell my oncologist my decision next week
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