Kadcyla for residual disease after neo adjuvant chemo
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Hi Gonae, and welcome to this group. I just finished Kadcyla two weeks ago. I needed to take an 8 week break after my 6th dose because my neuropathy got so severe. I have had upper back pain which moves around, and kind of burning skin pain in my upper back as well. And the dry mouth and dry everything. My vision got REALLY blurry a few months ago and I got an emergency appt with my eye doc, and it turned out it was blepharitis from the dry eyes. Warm compresses with a hot pack (the kind you microwave -- not too hot!) over the eyes twice a day, gentle massage just under eyelashes, eyelid scrub (I got it off Amazon, not sure what country you are in) and artificial tears without preservatives are the instructions he gave me. It has made a big difference. Not sure how blurry your vision is -- if mild changes you might try some of that and see if it helps.
For the nausea, I have needed Zofran (ondansetron) throughout, I am afraid. For a while I was losing so much weight my oncologist prescribed ice cream three times a day! Then I gained back a little too much
THat is my experience only, do make sure you talk to your oncology team about everything! I need to write things down as I think of them or I will forget when I get to my infusions
Best of Luck!
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@Gonae - Yes, I have Shoulder pain, in both. It got to the point that I couldn't lift my arms up to get stuff off shelves. It comes and, goes as I go through the cycle. I started doing exercises and stretching and, it's improved a lot. Still struggle getting sports bras over my head but I'm hoping to work through that. Any other time I would have booked in with a PT but, with COVID I'm trying to work it out at home.
I am part of a Kadcyla Facebook group and this has come up there too. I thought I had a torn rotator cuff. Someone else mentioned swimmers shoulder.
I got Cycle 10 last week. Thinking back this probably kicked in around Cycle 7 or 8.
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Hi All! And Happy Anagram Day for those of us in the US (and sorry you all in the rest of the world who write dates in more sensible order miss out)
I had a LONG telephone visit with my oncologist. Today would have been infusion day
We went over everything including really looking at my pre- and post-chemo pathology, talked about Kadcyla, KATHERINE trial (no 5-year update yet) data, data including Pertuzumab, data on Neratinib, data on denusomab vs zolendronate (inconclusive re bone mets) ... After a year and a half of treatment and really focusing on putting one step in front of the other and one decision/treatment at a time I was really ready to review everything. At this point she really doesn't feel that I would get additional benefit from the Neratinib, and after our discussion I am really comfortable with that. She had also run it by the rest of the breast oncologists and they felt the same. And I have a year to change my mind if more data comes out! I was all prepared to argue for it, but now I am happy. I will just have to keep using the miralax/colace/dulcolax etc to clean me out from the constipation I have had since the start of TCHP 
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Gonae - I"m suffering from increased shoulder pain and stiffness and decreased range of motion. I'm actually icing my shoulder right now. I thought it was more surgery and radiation related, but I'm starting to wonder now, as it's getting worse rather than better. My eyes have changed too.
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I just had #7 of 14 infusions. My doctor is happy with my blood work. Everything looked pretty normal, except my albumin, which has been consistently low through this and keeps going lower. This time my red blood count and hemoglobin are a little low. I’m not concerned, just wondering if others had issues with these and if cumulative effects caused labs to go low enough that you had to stop or lower your dose.
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Hi,
I'm in the UK and wanted to say thank you for all who have posted on here. Kadcyla was only approved in the Spring of last year in UK so we are a bit behind you and as one of the first to start Kadcyla over here I was really happy to be able to see what was happening and the progress you all have made. I am currently on number 11.
Can I ask please - I'm due to have the Covid vaccine and wonder if any of you have had the vaccine between treatments and if so what side effects, if any, did you have and did it interfere with your scheduled treatment or cause any complications?
Thanks
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Hello all and countca04: I read your post from 2019. I am in my late 60's and was very well before starting Kadcyla. I am glad there now is a post on this drug and experiences. Was wondering if you continued on this T-DM1/Kadcyla?
I have only done two infusions and by day 4 I feel ever so ill from it. Just sick. I was never one for taking any meds. Chills, low grade off/on temp, nausea, loss of appetite and already weight loss. Fatigue, weakness feeling and I live alone so I am truly ready to throw in the towel on this drug. I think oncologists often fail to look at the individual, living situations and support systems when dosing people on these chemo drugs. I do not feel sorry for myself, just cannot imagine caring for dogs if peripheral neuropathy becomes an issue. I was offered this because the taxane based chemo would have been worse. I cannot image completing the full cycles and might trade in this chemo for quality of life. I only had a very small tumor, NOMO, margins clear, but this darn HER2+.
Any input on who did not complete or quit Kadcyla is appreciated?
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Projecteddr.....I know your response was from March 2020 but in Feb 2021 after two infusions I am right where you were about Kadcyla. I am about to discontinue. Did you do that? Mental fog, dizziness, weakness, tachycardia, not eating. Kadcyla does have a higher drop out rate, despite oncs telling patients that there are less side effects. I cannot function like this. I will do radiation and the AI drugs but cannot imagine doing those at the same time. I do not know why that is pushed either. Too many things at once.
Anyone else who quit T-M1 (Kadcyla)?
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Have you guys tried taking the infusion over 90 minutes instead of 30? How about getting Fluids with your infusion?
I'm on a Facebook Group and people say the fluids and longer infusion times helped their SEs.
Also, I believe they can lower the dose.
Might want to try talking these options out with your MO and see if they work
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JayMarg, I will comment on the Covid vaccines. I am a frontline healthcare provider going through this BC journey. I did have both vaccines. I did not start Kadcyla until January 2021 so I made sure that I had my first vaccine before Xmas of last year---before I started chemo. No issues. I even wrote to the manufacturer (Genetech) for recommendations but they said to spread between cycles (that was already a no brainer). I spoke to my onc who did not think I had to spread the vaccine out but I went ahead and did that anyway! Spread it two weeks out. I ended up with a vaccine related reaction on #2 and a trip to the ER just because I had a port and there was no real way to determine sepsis or ? Had a fever of 104. Long story short, everything was ok with workup but the #2 vaccine clouded the whole picture. Not to scare anyone but there are people getting the 2nd vaccine who are not on chemo and have had 2-3 day reactions, fever, down in bed, etc. I even made sure my next infusion was delayed an additional week after the ER debacle. Be safe, trust your gut.
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Not to scare anyone but there are people getting the 2nd vaccine who are not on chemo and have had 2-3 day reactions, fever, down in bed, etc. I even made sure my next infusion was delayed an additional week after the ER debacle. Be safe, trust your gut.
That's a known issue with the 2nd shot, just means it's working. Hell, I was knocked on my ass one year after getting a Flu shot.
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Yeah, I was actually pleased as punch to get knocked on my backside by the vaccine (only first dose so far, but I almost certainly had COVID last March) because it means my immune system is fully activated
OK maybe not fully activated, but at least a robust immune response.As for the kadcyla, I did get my dose reduced, though I am quite sure that the severe neuropathy I had was late effects of the Taxotere and not the Kadcyla itself. I was pretty fatigued by the Kadcyla, but I don't think my chemo brain was any worse on it, and I do think it started improving while I was still on it. My appetite was generally better early in the day than later. I did finish 14 doses.
I would strongly recommend talking with your onc team about what you are feeling and what your options are!
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Rachael - the recommendation to stretch the infusion to 60 or 90 minutes might really help. I found it did with Herception.
If you want to address people who posted several years ago, go to the post you were reading and click on their name. That will bring up the last times they posted. If they've never come back since 2019 (for example), you can assume they solved their problem.
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Hi,
I got my first COVID vaccine after my 7th infusion of Kadcyla. Got it 3 days before my next kadcyla infusion. Had a bit of a sore arm but apart from that everything went ok. Live in England
Gail
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I got my first dose of the Moderna vaccine on Friday, 1 week after Cycle 11. I had a bit of fatigue on yesterday but, other than that no issues. I hear the 2nd dose will knock me in um ass but, it only lasts 1-2.
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Would love to hear how folks are doing on Kadcyla. I am due for my 3rd infusion this week and the 2nd one during the "nadir" phase had me feeling pretty awful. Tachycardia for days (tried to increase fluids) and low grade fever which the oncologists always says never a side effect, which I stopped listening to. I have already lost weight of about 10 lbs and I am going to question whether or not the dose should be reduced. If not, I cannot imagine continuing with this. I am Her2+ but with a small , localized tumor and having to go through chemo.
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Just wanted to report that I have made it through my first kadcyla without any major side effects or complications. I was a little tired and achy feeling, I also experienced a little bit of heaviness in my chest...but not sure if that was from radiation or kadcyla. It went away in about 4 days. Will get my second next week!
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@mtspacekace - congratulations! Best of luck with the rest.
I just had #12 last week. Getting down to the wire 😁
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Hi. Thank you for starting this thread. I recently learned after my BMX that I had some residual cancer after 6 rounds of TCHP and everyone's comments have helped me prepare for what might be ahead. It looks like my Kadcyla infusions will begin in two weeks.
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idk - I had the same happen to me. I found Kadcyla to be kind. The infusion is easy and only had Tylenol for premeds. My last treatment was in November 2020. You can definitely do this after TCHP
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I am so glad I found this thread!
I was thrown for a loop when I saw my oncologist day before yesterday. I am triple positive and had neoadjuvant treatment with TCHP until I lost 20 lbs, was sick all the time, and couldn't eat, so she took be down to just TCH and then just Taxol and Herceptin every week for 6 weeks. All told, 11 chemo treatments. Then I had a double mastectomy (no reconstruction) last week and was pretty sure that if my nodes were clear I would not have to do more chemo. However, now my oncologist says I have to do Kadcyla for almost a year as there was still residual tumor even though my nodes were negative! Bummer.
So, I would really like to know if someone on this thread did TCHP and didn't tolerate it well, and is now on Kadcyla, how are you doing? I am terrified of going back to the way I felt on TCHP and being sick all the time. Any reassurances or words of encouragement are much appreciated!
Thanks!
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Kadcyla is NOTHING like TCHP!
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Kadcyla has been a breeze for me. Granted I handled TCHP well for the most part but, Kadcyla has been very easy.
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Thank you so much. I am hopeful I will tolerate it well! It is just hard to hear a change in protocol and be thrown back into the unknown!
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I found Kadcyla as an option early on, before my MO even mentioned it to me. I remember very early in TCHP (when I didn't really have an issue cycle 1/2) writing a post about why couldn't everyone get Kadcyla after TCHP!? Why only if you don't get a pCR!? 😠
By the end of TCHP, which again i handled pretty well, I was praying for a PCR because I dreaded having to do 10 months of more Chemo (Kadcyla). When I got the news of residual disease (even though I expected it) it was a kick in the gut...of course I wasn't lucky enough to get a PCR!? Figures! 😥
I'm now in 12, I go for 13 next week and, honestly if my MO said how about we make it 17? I'd probably do it.
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Hi ELW412, I had a similar experience with THCP. I ended up in the hospital after 2 cycles. When I was switched to Abraxane and Herceptin, I did much better. Because I had residual disease after chemo which they found from my BMX, I was offered Kadcyla and I had several cycles. My MO said that Kadcyla would be easier than the Abraxane, but it really wasn’t for me. Because I wanted to prioritize quality of life, my MO said it would be OK for me to just do Herceptin. I’m not saying that is what anyone else should do, but I want to encourage you to talk to your MO about OPTIONS and the pros and cons for your specific kind of cancer.
I think our treatment decisions should be optimized for each person’s personality and life goals. I’m oligometastatic (just one spine lesion), so I probably have a lot more flexibility than others with MBC. I tend to be a very optimistic person and I believe that I will be able to be NEAD for at least a decade due to the excellent efficacy of Herceptin and Tamoxifen/AIs. I want to minimize the drugs that I take so that I can have the best 10 years possible.
If I do have progression, I’ll go back to the Kadcyla. It is a risk, but life itself is risky. I’m trying to balance the risk with living life to the fullest while I adapt to the “new normal”. I can’t do everything I used to do. I’m no longer fit and I’m carrying a lot of extra weight. But this is only the start of year 2! I get strength to persevere from the women on this forum. I’m grateful to everyone who shares their story, and I hope that we are all granted the grace and courage to navigate these unknown waters
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In response to cyathea, I fully agree with you. I have now had 4 infusions of Kadcyla and I do find this is getting harder to tolerate. Very scary when you also live alone, even though family has been reaching out to help I will not wear them out since everyone has there own issues. There are SE from Kadcyla. As much as oncologists preach that this drug is easier, it is not. I am not a spring chicken and I had a long talk with my oncologist about treating the person individually and not the diagnosis. I am also no wimp and consider myself a very strong person both physically and mentally. But this drug definitely takes me down, especially in the nadir phase. I had a very small HER2 + tumor and I understand the concept of throwing everything at this but went in to this as a very healthy older person and there are risk/benefits to inducing these chemo drugs and risk cardiac, lung, liver , electrolyte imbalance, fever, etc insults which can change your life. I refuse to end up in ERs (happened once) to correct or evaluate what the heck is going on after infusions. After hours, the best the oncologists have to offer is "go to the ER?"
For those of you who are tolerating Kadcyla well, that is great for you. Perhaps you are younger. But I encourage others on T-DM1 to post what SE they are having, as other internet sites certainly are full of people who are having a rough time on this. Glad this post continues.
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These are some of the SEs mentioned on another site that I found helpful in addition to those mentioned on this site:
HER2 Support Group Forums: Kadcyla Side Effects
"Please make sure you drink a LOT!! Also take potassium/magnesium - I take twinlabs. If it continues, you may want to speak to your doctor about lowering the dose. I have had acid reflux, but it hasn't gotten worse. I take Nexium and Zantac twice a day each to control that."
"My wife had great success w/ t dm-1. (NED over 3 yrs.) She developed neuropathy, dry mouth (biotine helped) and battled low platelets. After 7 cycles, she had to reduce dose to 3.0 to keep plats above 50,000."
"I continue to cough and have breathing problems on exertion, some kind of a breathing spasm when I yawn, constipation during each cycle, and neuropathy on the legs/toes."
"It was drying out my whole body. I had a hard time getting my balance in the mornings, because my body just felt "dry". I also did not like the sclerosis it caused in my lungs."
"After the 9th cycle, I am experiencing little nose bleed, back pain and now dizziness while lying down."
"I developed some breathing problems, and the lung inflammation that I had first noticed while on Herceptin and Tykerb got worse. I looked up the side effects online and noted that interstitial lung disease, pneumonitis and acute respiratory distress are listed. We lowered my dose. My other side effects were high blood pressure, neuropathy, headache, nausea and watery eyes/runny nose."
I don't use FB but a few people have mentioned a group to discuss Kadcyla on there as well. I just had my first dose of Kadcyla yesterday and so far I haven't experienced any SEs but it is still early.
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Hi All,
I have had 1 round of Kadcyla and wow, it really kicked my a**. The first week my platelets plummeted, constant bloody nose. Once that resolved I then started to have uncontrollable diarrhea. It has been two weeks now of diarrhea. I am on a bland diet and I have lost four pounds. My doctors prescribed Lomotil but that gave me horrible abdominal cramps and pain in my actual stomach. I have done Herceptin/Perjeta before and I am seriously thinking of switching back. But I think the Herceptin is what is triggering diarrhea (which from my understanding is partly what makes up Kadcyla).
Treatment has been postponed until we get my stomach under control. Has anyone run into this?
I am miserable
I thought this was supposed to be easier than AC and Taxol. At least with those I got a few days in each round where I didn't feel horrible.0 -
Just saw this thread. I just finished my Kadcyla treatments. I was able to manage 12 of the 14 recommended. I was a windy road. I started in July 2020 when I was still doing my 6 week course of radiation. Not sure that was the best time to start. The last 2 weeks of radiation I experienced the worst fatigue of the entire journey. Even worse then when I was doing my AC chemo treatments. Early on fatigue was my main side effect and a couch and nose bleeds. My platelets dropped immediately. Oh I was also on Anastrozole by this time. In early September, I did my first Zometa treatment. I was very sick with flu like symptoms, chills, fever, aches that lasted four days. I went to the ER and was diagnosed with pneumonitis. All the doctors agreed it was radiation pneumonitis, but I there was so much to unwind: radiation, Kadcyla and Zometa so I still am not sure the real catalyst. I relapse in December with the pneumonitis. On around my 9th Kadcyla treatment I started not recovering from it even after 3 weeks. I wasn't able to do much, I was fatigued all the time, light headed, no appetite, neauseous, and just not feeling well. I needed someone to be with me the 2 days after treatment. Then my liver enzymes started getting higher and higher and my potassium levels were dropping as well as my platelets. I postponed my 11th treatment and everything leveled off a bit. After that my liver enzymes got high again, platelets very low and I really couldn't recover. I had fever and chills but we couldn't find any infection, I went for fluids every few days which really helped. I was able to have my 12the treatment and then we stopped. I have now done an ultra sound and CT Scan with contrast my liver, kidneys and gall bladder. I never had any pain. I have a gall stone but it is not mobile, I have a few benign liver cysts (most people do) and no other issues so we are optimistic my enzyme levels will level out. Of course I will see a GI doc soon to get a second opinion. But you know how it is when you go scanning you find stuff. I was very stressed about stopping the Kadcyla after 12 treatments, as I want to do everything I can to avoid recurrence. But after a lot of research by me and my oncologist I'm OK with the decision to stop at 12. Apparently only 74% of patients complete the 14 doses. I am starting to feel better every day, sleeping better, able to exercise, feeling safe to drive and go out alone as I haven't been dizzy in weeks. In hindsight I think I should have done more hydration all through the treatments and I think I should have done one thing at a time. Next decision - Do I do a year of Nerlynx. I have some time to think, April 1 I will get my Covid vaccine, May I will do my 2nd Zometa treatment and then decide. I have been watching the videos and joined the social media group to learn more. But hard to not do everything I can to stay healthy.
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