Kadcyla for residual disease after neo adjuvant chemo
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Hi SophieA, I’m in a similar situation. I have a lesion on my spine that occurred while on chemo. I have not had a bone biopsy yet to know if the lesion is cancer, but I asked my onc whether this was normal. He initially said he would be shocked if the cancer had spread during the chemo but he noted it can happen. However, another doc was perhaps more willing to give me bad/realistic news by saying that the lesion was LIKELY a metastasis of the breast cancer since bone is the most common place of MBC.
I have a low Ki67 number so no one initially expected my cancer to spread, but then they found a lump in the other breast via MRI and cancer in one of my lymph nodes. These things happen.
I don’t want to discourage you with this info. My point is that you will get slightly different perspectives on things depending on what type of personality the doc has. The important thing is to try not to get too worried over something that is still a potential rather than an actuality.The bone lesion was a shock to me initially as well, but now I’ve accepted the possibility of that being cancer while still reminding myself that it may not be.
Since a bone biopsy is pretty painful and the results wouldn’t change my current treatment, I opted to delay knowing what my actual situation is. This works for me, but some others would find the waiting to be torture. I’m not saying I’m better than others, just that I’m wired differently than a lot of people. It is important to figure out what works best for you since each cancer journey is somewhat unique.
I will finish my Abraxane/Herceptin in January and then I’ll probably be on Herceptin or Kadcyla for a year. I’m a little behind your schedule in that I have not had my BMXyet and radiation is still an unknown.
I hope and pray that you get good news from your US and biopsy.
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Just a update on me..will have my 2nd Herceptin and Perjeta treatment this Monday. Stopped the kadcyla now for the last two treatments. Went to eye Dr today and my cornia are clearing up. Feet are still hurting but going to physical therapy Monday also. They told me to start the gabapentin again but kinda waiting for therapy first...just checking how others are feeling on the Kadcyla? Don't want to discourage anyone just seeing if anyone else is getting the same side effects?
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Hello everyone 😊 my liver enzymes have gone down to normal - the achy joints are better - will have my 2nd dose of Kadcyla on a lowered dose next week - hopefully I tolerate it well 😊
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My major side effect is about 24-48 hours after infusion, I feel like I’m getting the flu. Tired, a little feverish, chills.... but it goes away in less than 24 hours. Otherwise, I’m just generally tired
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Hi this is my 1st post here. Finished TCHP on 11/19/19. According to pre-surgical MRI my tumor went from 2.8 cm to 7mm, although I got my 1st H&P infusion this week (Post MRI) so I guess it could shrink some more by surgery. I’m not expecting pCR so will be starting Kadcyla in early Jan I’m guessing. I’m having my ovaries and tubes out when I get my lumpectomy on 12/17 so I can start an AI. Then rads in mid to late Jan. Thank you all for sharing, it helps to know what I might go through. Before starting TCHP I was found to have 3 small lung nodules, getting them rescanned in Jan. Hoping for no drama with the lungs
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Popping in...I’ve been lurking for a while on the forums but plan to start posting more soon. I am reading this topic because Kadcyla is a possibility for me and I’m curious what SE people have been experiencing.
For those experiencing bone/joint aches and pains, I wonder if Claritin could help the way it does with the SE from the Neulasta shot? I am not sure why it works for Neulasta so I don’t know if it could have the same result, but I thought I’d toss it out for discussion.
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Cyathea- I’m sorry you’re going through that, hopefully it’s not what they think. Prayers up for u.
FNPMom- so happy to hear you’re feeling better.
Speaking of neuropathy, when we get Kadcyla do we have to ice our hands & feet like with TCHP?
I got my pathology results yesterday. My tumor broke apart & there were still 3 small spots with invasive cx. The largest was 3mm in diameter tho which is great. Also one lymph node was positive, the other 4 were good so the BS isn’t taking any more out. I don’t see the MO until 1/2. I’m assuming I will get Kadcyla. I’m a little nervous. I guess since we all had chemo already it’s hard to tell if Kadcyla causes chemo brain too- I’m worried about it because I have to go back to work while I’m on it & i’m a nurse. I can’t have brain fog.
Adhoney- sorry to hear about the thinning hair. My hubby ordered me a laser hat for Xmas. It’s supposed to help with thinning hair. Right now I’m bald but I’m anticipating hair issues from the AI. I’ll let u know how it goes.
Is anyone doing Kadcyla with perjeta?
Have a wonderful Christmas & Happy Hanukah everyone! Thanks for being here. Hugs to all
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Not sure about icing during Kadcyla. The initial infusion is about 90 minutes. Subsequent ones are closer to 30 minutes.
I’m having one hell of a time with coughing. Dry, unproductive hacking. Can’t get my MO on the phone to ask what I should take. Anyone have any advice
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Good morning everyone.
Paloma1211- I’m sorry to hear about your cough. It’s concerning though. Are you having any shortness of breath? If I were you I would call the office & tell them you need to see the MO today. I don’t mean to sound alarmist but I’ve read that Kadcyla can cause lung inflammation. Your MO will probably want to listen to your lungs, I know I would. Hopefully it’s nothing & he or she can suggest a remedy but it’s better safe than sorry. Your body is precious, especially your lungs
Here’s what I was reading earlier:
https://www.medicines.org.uk/emc/files/pil.5252.pdf
I hope your cough resolves soon. Please keep us posted. Hugs to you
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Thank you LuLu. I don’t have any shortness of breath. I have to go in on Tuesday for my next treatment, anyway. The cough is annoying more than anything. I read that drinking ginger tea might help. I’m going to give that a shot while I’m at work today. Hopefully my MO will find some time to call me back
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Lulu44: I haven’t heard of doing Kadcyla with Perjeta, but I guess it could be done. I’m kinda glad I don’t get Perjeta anymore—that stuff is horrible on the bowels!
Icing the hands/feet wasn’t mentioned to me by my MO for Kadcyla. I do have some mild neuropathy that has developed since I started the Kadcyla. It’s really mild, more of a slight nuisance. I don’t want to have to ice anything else—I cold capped during my TCHP and I HATE being cold!!
I had my 7th infusion (halfway finished!!) of Kadcyla almost 2 weeks ago. I find that I have joint & muscle aches that are tolerable. It’s more pronounced in the morning upon waking, especially in my feet & hands/fingers. I really noticed it when I was wrapping Christmas gifts while sitting cross legged on floor, I could hardly get up & walk after just a few minutes.
Praying for all of us that 2020 will be better. Continued healing everyone. Hugs!!
Angie
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Finally spoke with my MO. She said I should just try some OTC Robitussin DM. Hopefully that will help
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Hello all - I got through with the 2nd dose; I got really cold and tired after - went to bed and was ok the next day - hopefully liver enzymes will be fine - I’m still spotting - not period-like bleeding but just traces but it has gotten heavier that I suspect I’m fixing to have a period - I called and left a voicemail with my onc so we’ll see what he says - happy new year guys! Hoping and praying for an uneventful year for us
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hi guys - finally heard from my onc today - Liver is normal - I will be going on ovarian suppression meds with tamoxifen - I’m really achy though - I have tendinitis on my right elbow 3 weeks now and it’s on my sentinel lymph node side so no bracing - neck pain this am to the right too - guys, do you take anything for the discomfort? I’ve only been doing topical stuff waiting for liver results but I think I need to take something now
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FNPMom - Why did you choose ovarian suppression + tamoxifen combo? I always thought OS + AI is the combo, even for pre-menopausal women. Hormonal treatment is coming up next for me.
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FNPMom- so glad to hear that your liver is normal, what a relief.
Paloma1211- I hope your cough is long gone.
I had my 1st Kadcyla infusion on 1/2. I definitely have some soreness and stiffness. My right shoulder felt like I tackled someone the other day. I'm also fatigued but it's so much better than the TCHP. My oophorectomy got postponed until 1/22 and I'm starting the AI 2 weeks after that. My next Kadcyla is 1/23. Hoping my liver enzymes are ok throughout treatment. They went way up a few times during TCHP. Radiation starts 1/27... busy busy. This shit is a full time job lol
I hope everyone's having a good 2020 so far! Xoxo
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hi neeli- my onc recommended the tamoxifen for 1 year then oophorectomy/AI thereafter - he thought I wouldn’t need the ovarian suppression 😜 I think the AI aggravates the joint pains with the kadcyla so tamoxifen for a year then when done with that we’ll do the AI
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Hi,
Just wanted to say I started Kadcyla today...took 1.5 hours of drip and 1.5 hours of observation. Everything went fine but I’m tired tonight and my lower lip feels like I had a light Novocain injected? Hopefully more people will chime in and let us know their experiences. The Katherine trials certainly make this a promising drug for Her2+ cancer patients.
Stay 💪 fellow warriors
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Hi everyone, I just had surgery Dec 27 that showed residual disease in my breast and 2 nodes, and my MO wants me on a YEAR of Kadcyla once I'm done with radiation treatments in Feb/March.
Thank you Neeli for starting this group! I'm really upset about the idea of MORE chemo, and leery of taking kadcyla without having very much anecdotal feedback on side effects. Some people do better with positivity and not working themselves up with "what ifs", but I'm the opposite; i want to know what's the WORST I can expect, and then (hopefully) be relieved my experience isn't that bad. I like to have a large pool of info (like I found here, with TCHP experiences) where I can gauge the realistic range/ risk, and what's "normal" or common during a cycle, so I can (try) to make life plans that work around symptoms, and not feel blindsided.
It really helps me to hear all of your experiences! How is everyone doing at this point, and how long have you been on it? Any advice?
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Hi guys...
HeartShapedBox- I’m the same way as you! I always want to hear worst case scenario so I’m not Blindsided. I need to be mentally prepared. Then I can be relieved hopefully. I’ve only had one Kadcyla infusion so far but it’s nothing like the TCHP. Thank God. I just have some muscle & joint stiffness/pain. I feel better than I have since before being diagnosed, been doing lots of cardio. My surgery is tomorrow to take out my ovaries and tubes then 2nd Kadcyla is Thursday. I feel so good I don’t want to be laid up again. Hopefully I bounce back quick.
Flnana- I hope you’re feeling good after your 1st infusion!
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Just did my 5th round of Kadcyla yesterday. Thankfully, my cough seems to have diminished substantially. I think the worst of it may have been a bit of a cold. Cool damp air seems to irritate it, as well.
So far, this is NOTHING like TCHP. I feel fatigued, but generally mild. I have to be careful not to overdo it for a day or two after my infusion, and then the rest of the 3 weeks is mostly normal. A few night sweats. A bit of a cough. A headache.
Totally manageable. I haven’t had to change my work schedule at all
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@Paloma THANK YOU! It's so helpful to hear feedback like this!
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hi all - I’ve had my 3rd dose last Friday and so far in terms of side effects just manageable joint pains and achy muscles - my liver enzymes have been stable thus far - since it’s been elevated I’ve been taking alpha lipoic acid and vit c - received feedback from a hepatologist that zinc also works so I’ll ask my onc about that - milk thistle is also an option but unless the extract is from seeds there’s an estrogen-like component so that’s a no go - I hope to get all 14 infusions - so I’m really babying my liver lol
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I have 2 more cycles left so there is light. After yesterday's treatment I feel really crappy today and I have handled Kadcyla well. I even ha some of the horrible tasre in my mouth I used to get from TCH
The rare is no where near as bad as during those treatments but it reminds me of it. My doc just called to tell me to take my calcium supplement and that he was prescribing me potassium because they are both thow. My liver enzymes were raised a few weeks ago but as of yesterdays blood work he said they are good. This is all nuts.
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I’ve had 8 doses so far of Kadcyla & #9 is coming up on Monday. I’ve been a little bit tired, probably just tire a little more easily than usual. My joints & muscles are slightly achy & get stiff if I stay in one place for longer than 30 minutes. Last one is May 11. I’m so ready to be done with this—then restart AI....yay.
On the good side, I’ve been able (feel up to) going to the gym twice a week to do cardio & weight lifting. Trying to get some yoga in every now & then too.
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Hello beautiful people,
I have been diagnosed with Metastatic breast cancer on 01/2017. I immediately accepted the disease and have chose not to do chemo. I did 3 rounds of Herceptin/Perjeta which I couldn't handle it well, so I had to stop.
I than was on Tamoxifen for about couple of months which had bad side effects and my cancer was not 100% ER+ PR+ so doctor had told me that it may not work.
I had double mastectomy with reconstruction as well. Then few months after the surgery, I had a small red dot appearing on the left side of my left breast. The redness turned into open sore. I had 15 rounds of radiation to treat that and couple more spot around the sore.
I now have the cancer in my lungs, left breast site again, my vertebrae at 2 places, lumbar and cervical. I also have some liver issues as well as adrenal gland irregularities. I have so much bone pain and coughing with lung pain. I now have to make a decision. And I need some advice.
My doctor has suggested chemo and I said "no" than he suggested Kadcyla and radiation. I have done some research and there is a professor who did some research about the trastuzumab kind of drugs like perjeta and kadcyla. He says the monoclonal antibodies are extremely toxic and he suggests chemo instead. He is also agains the radiation. He uses research by scientists to show the damage by these treatment options.
I have no chemo port, and I am thinking of getting one. How is it? Does it hurt? Do you feel the port in your artery? How do you handle chemo? Have you done Kadcyla and if so how many times and how is it? Could I have Kadcyla through my arm vein? The doctor said yes but I saw a case study by NIOH and it had cause skin necrosis on the arm. I am s confused about all this.
I am okay with dying. I have no fear and have accepted it, but I just don't want to die in so much pain and breathing difficulty. The Doctor thinks that the cancer has spread in to my brain and he had ordered an MRI, which I have not scheduled it yet. I just scheduled the echocardiogram for Kadcyla drug. Thank you for your help. I appreciate every one that chimes in.
Love
Star
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Hi Star,
I'm sorry to hear that you are going through all of that. I just got my 2nd Kadcyla today and it hasn't been bad at all so far. The port surgery was pretty easy and I've had mine in since July, I can't feel It going into the superior vena cava which is where mine is. The incision was sore for a few days after surgery but the pain medicine helped. I did get one treatment into my arm vein that had both Herceptin, perjeta and 2 chemo drugs called taxotere and Carboplatin. They're pretty toxic but nothing bad happened to my vein or arm. As far as I know, they give Kadcyla to metastatic patients until it stops working or turns out to cause problems. All of the medications have risks and there's no way of knowing if those will affect us until we try them. Our bodies are all so different. It sounds like your doctor thinks that the benefits will outweigh the risks for you. If it makes you feel worse you can always stop taking it. Im happy with Kadcyla so far. Let us know how you make out with everything. Prayers and good wishes up for you, Star! XO
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starlove I am so so sorry that your cancer metastasized. I wish so much that you didn't have to suffer with bone pain and breathing difficulties!
A couple years ago I was a caregiver for a friend with stage IV BC that spread to lungs, liver and brain. Her choice was to fight as long as she could, so she did everything, and in her case, radiation (on the brain mets) did make a huge impact on her cognitive symotoms. She also found that chemo did help her lung tumors and gave her some measure of relief as far as breathing, for many months, but she was triple negative so she was not on Kadcyla. When she decided to stop fighting it and went on hospice, I will say it was a phenomenonal, supportive experience and they were so caring and very good at pain management and just overall care in general.
If you decide to do infusions, I 100% recommend getting a port. For the "cost" of one brief surgery (I had about a week of discomfort afterwards) it is so much easier/ less painful to have quick and easy access for infusions rather than digging around for a vein each time!
I didn't do well on Perjeta either and had to stop after 4 rounds, but the Herceptin has been GREAT for me, no side effects, have you considered doing Herceptin solo? I haven't started Kadcyla yet so I can't speak to that, but I might worry for you about the additional bone pain if that is one of the things you were trying to diminish?
Wishing peace and comfort for you ❤
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Star your questions would probably best be addressed in the Stage IV Kadcyla thread since this thread is for early stagers doing Kadcyla as neo-adjuvant treatment. Because those of us with metastatic disease have typically been through several treatment lines, our experiences are often different. SEs can be tougher after you've been through a few lines of treatment because of the stress on your body from treatments and the stress caused by tumor burden, especially when you have mets in multiple locations like you and I do. https://community.breastcancer.org/forum/8/topics/817731?page=45#idx_1344
Kadcyla is Herceptin plus a chemo called emtansine. Did you have a hard time tolerating Herceptin or Perjeta? Usually if someone has a hard time with Perjeta they stop that and continue with just Herceptin, so I'm curious what caused you to discontinue it. I found H&P very easy to tolerate compared to Kadcyla, but I've been on chemo for over two years so I'm sure my body is just getting tired of all the abuse. I had a very tough time with Kadcyla the first few months (nausea, fevers, chills, headaches, etc) but I think my body is starting to get used to it now.
All of these drugs are very hard on your veins, and if you're metastatic and going to be in treatment for the rest of your life, you really should give serious consideration to getting a port. My veins are completely shot because I waited before getting mine. The surgery is fairly easy. You get used to it.
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I am grateful for this thread and appreciate all your posts. Thank you!
I did TCHP and had a really hard time, double mastectomy 12/12, which was a breeze and then two rounds of just Herceptin. Today I found out that because I had residual cancer and I’m Her2 Enriched my MO wants to switch me to a year of Kadcyla. It was a shock because I thought I was set and was busy checking off the Herceptin infusions.This thread is a big help. Thanks again! Please keep posting your experience.
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