Kadcyla for residual disease after neo adjuvant chemo
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i just got 13 of 14. I feel fine but, I have noticed the impact to my blood counts does seem cumulative. I need Neulasta every cycle now just to keep my ANC at 1.2. My Platlets have stopped rebounding. I would usually hang around 100 but now I'm 79.
Ah well, it's almost over with 😃
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I had to take a break after #6 because my neuropathy got so bad. Still think it was still worsening from the Docetaxol. I was super frustrated at the time to be taken off the perjata and not started on the Kadcyla during radiation, but now I am really glad, because the radiation alone was fatiguing enough, and I still needed to work. The Kadcyla was fatiguing, but my platelets did OK. My hemoglobin is still low, and my white count was a little low throughout but that has come back. My hemoglobin may be slower to come back just because I am a long-time vegetarian.
I did have the herceptin runny nose right through the kadcyla, but that is FINALLY getting better. Also a dry cough, but chest CT looked ok.
I am sorry you are struggling, but if it doesn't work out perhaps neratinib would be a tolerable aternative?
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My goodness, thank you for all who shared their experiences on Kadcyla which was supposed to be "easy." I am not a Facebook person but there is a Kadcyla group and from what I could see without joining many others are having issues. The cough, dry mouth, fatigue, acid refux, etc is somewhat tolerable but the off and on tachycardia, shortness of breath, dizzy, etc is NOT. I have had 4 infusions and was a healthy older person and in 3 months I feel like this drug is going to cause worse issues. I have lost 16 pounds. Another person I know on Kadcyla has lost 45 pounds! I have been eating ok on the "good days" but the nadir phase seems to be getting longer and longer. I may stop this. I do not want irreversible heart failure from this, plus my tumor was very small. Her 2+ was the stink of all this.
I did start on potassium and magnesium and am trying to hydrate. What irks me is the place I am going to for infusions did NOT figure that out and I was the one who did along with my primary care doctor. I have a 2nd opinion new oncologist this week and I will discuss this risk benefit of this drug with her. I am supposed to start radiation and was told by the first oncologist that I could do that concurrently. NO way will I do that and have to drive myself for 3-4 weeks when I feel so awful. That is scary too with the risk of lung issues or heart issues with radiation. And adding aromotase inhibitors at the same time? What are they thinking?
Again, I thank everyone for sharing that Kadcyla is no walk in the park. For those who can tolerate it, that is good. I am at a crossroad with quality of life and risk/benefit of this drug causing another bad medical issue.
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I get my Kadcyla over 60 minutes and it has made a big difference with regard to nausea. No harm in asking
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Hi Everyone,
Last week I had number 14. I am so pleased to have got through them. I found it tough on account of the level of fatigue I experienced. It started at number 2 after the radiation. Here in UK the radiation is given now in 5 days so I followed with Kadcyla on day 6. I gave myself a target, first of all, to get to number 7, half way. Then when I was there, my next target was number 10. I got to 9 and the pins and needles in my fingers and toes turned to pain and I found I couldn't write and had difficulty pressing light switches or buttons on the washing machine for example. I was told I needed a break which was for 3 weeks and my dose was reduced by 20% to make the pain manageable. This has helped considerably and enabled me to complete the rest of the cycles. I do not know whether the pain in my fingers will resolve itself eventually. I hope so. I read an article on this website about neuropathy generally by a Dr Stubblefield where he appeared to say in only 5% of cases it is permanent. I have not yet been prescribed an AI. I am told that I will be starting Letrozole in June.
I think that everyone undergoing chemotherapy is brave and a star. It takes guts to go for each cycle. The residual cancer after surgery, for me, made it that I didn't have a choice other than to go for Kadcyla and to give it my best shot. Everyone is unique and needs to do what is best for them.
I am very grateful for the postings about the vaccine. I have a couple of questions you might help me with and I will post these separately.
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Congratulations on finishing!
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I finished the Kadcyla in December (well, New Year's Eve!) after also needing dose reduction due to the neuropathic pain. It is getting better for sure, but my balance still sucks.
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Just had #14 this morning. Kadcyla has treated me well, yet I'm still happy to be done with it.
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CONGRATULATIONS!
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Morrigan25
Great to be done! Congrats!!
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Hi Rachel nice to see someone else also who has received KAdcyla for early HEr2 BC, as so is my mom right now. My mom has alotnof the symptoms you described and I am hoping she gets better after she is done all her cycles.
cheers
Sonia
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Hi Spalta/Sonia,
Well, I quit Kadcyla and have been off that chemo for 4 weeks now. I ended up having a chest CT and had to see a Pulmonologist. I have been a lifetime non smoker , no asthma and never had any lung issues. No way was I going to be a pulmonary cripple for the rest of my life, I am just now back to feeling like myself and lung issues are improving. So many chemo drugs cause Pulmonary issues. I repeat, that Kadcyla was no walk in the park. For those that tolerate it they are fortunate.
I may retry just the Herceptin alone but if that causes issues , will stop. This is all a risk benefit, especially for older women. This lousy Her2+.
Be interested to hear from other women who just did Herceptin as mono therapy and how they are doing without side effects?
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Hi,
I am hoping you might give me your opinion please.
I was diagnosed in 2006 at 47 years old (pre menopause) with invasive ductile carcinoma in my right breast. I was grade 1, stage 3 (1.6cm) with surrounding (insitu), ER/PR- very HER2 positive (8 nodes removed all negative).
In January 2007 I had a lumpectomy, margins were clear. Treatment was 4 cycles of AC (given byweekly), Herceptin given every 3 weeks for one year) the Taxol, Herceptin 25 rounds of radiation (all started at the same time).
In January 2021 during my annual mammogram a mass was found, after my biopsy it was found that I had the identical cancer, same side very close to the first tumor (this one just under 1cm).
Since I had previously had AC and radiation, the course was a mastectomy (I chose bilateral). The treatment plan was 12 cycles of Taxol (given weekly and Herceptin, 12 rounds weekly with the Taxol), followed by 9 months given every 3 weeks.
Given all these details, and the fact that my Oncogists last words to me last time, I won't have to see you again! I wonder if I should consider doing the Taxol, Herceptin and T-DM1. Clearly the Herceptin has shown up twice (it was caught early), but I don't want history to repeat itself).
I assume that doing the bilateral mastectomy has greatly reduced an occurrence, but what would your thoughts be?
Cheers,
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In the US Kadcyla is only approved (in early stage BC) to treat residual disease post neoadjuvant treatment. I'm not sure about anywhere else.
Personally, I had a fairly easy time on Kadcyla, minimal SEs and nothing difficult to handle. I know others have a much harder time with Kadcyla. I would recommend Kadcyla over Herceptin because of the KATHERINE trial but, 10.5 months of Kadcyla could be difficult if you're one of the unlucky ones
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I was one of the unlucky ones. Five months ago healthy and active. Never in my life had any lung issues. I could only do 4 rounds of Kadcyla.and then became sick with interstitial lung disease starting. So, so many of these newer chemo drugs out there now have lung issues (not just cardiac) and one of my oncologist failed to recognize this despite shortness of breath , daily fevers, and general unwellness. I have one as a second opinion onc who suspected right away and I stopped. Was fortunate enough not to have to go on steroids and I improved on my own over at least 6 weeks. Now I am faced with Herceptin only as monotherapy and am terrified of the re-challenge of even this drug as there are reports of interstitial lung problems with this. I am early stage BC but HER2+ so this is a major concern if I don't attempt this infusion. I am not willing to risk my health and life to re-test any drug which could cause lung issues permanently. Everyone has to decide for themselves at what age you are and what decision tree to follow. I started a separate post on Herceptin only and want to find out if others had lung issues.
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Hi, Everyone, this thread has been so helpful to me. I had my first Kadcyla infusion on Wednesday, and so far my only symptom until last night was fatigue. Last night, however, I started feeling some neuropathy (tingling) in my hands/fest. So I'm on here today to see what I can do to hopefully manage it. I'm seeing info for B12, Magnesium, ALA, and L-Glutamine. I'm wondering if anyone iced during their Kadcyla infusions?? I didn't during TCHP (I HATE cold), but I didn't have neuropathy issues either. Would love any suggestions you have! Thanks!
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I iced for TCHP but, not Kadcyla. I took B6 and ALA during both treatments and no Neuropathy
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Please be informed and be very careful about supplements during chemo. I met with a University nutritionist and two oncologists. ALA is considered an antioxidant and (possibly B6 as it acts with free radicals) all advised against supplementation other than diet. During chemo I did nothing! Not advised during radiation either. I hated not taking vitamins, but after my own research and listening to the experts I took nothing. Read only current information and studies. Yes, it is all over the place in recommendations but vitamin companies often want to sell or promote their products. Plus I only trust a few reputable companies.
Talk to your team, and not to offend, but not all the advice or plans that others did on these forums. Early on when I started these groups I got a private message from another cancer patient who said the same thing to me about advice on these forums. Wishing you well on Kadcyla and your own journey.
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My Oncologist put me on both during TCHP. I only had to stop doing ALA while doing radiation and both Oncologist signed off on when to start up again. In fact both MO and RO signed off on everything I take.
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Thanks for getting back to me on the questions of icing and supplements for neuropathy! I've send messages to my team so they can weigh in too, and I'll do what they suggest. -JamG
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I also iced during TCHP and not kadcyla. No supplements other than glutamine. And kadcyla wasn't nearly as bad as I was anticipating.
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I'm supposed to have my 5th kadcyla this Friday but I think I may have to be switched to herceptin. My neuropathy is so bad on my feet that I am limping when I walk.
Will update once I speak to my oncologist
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Just an update: I didn't have any side effects besides a little reflux for the first 8 infusions, all of which I did for 60 min and with hydration, but after the 9th infusion, I started to feel nauseous and have more reflux than previously. I'm hoping it doesn't keep getting worse.
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@idkwhatsbext - please let me know how the rest go for you. I had something similar with cycle 7, I was fine with 1-6, minor SEs nothing i couldn't handle and all easily treated. Then with 7 I got major toe pain (neuropathy) and some really bad joint pain (shoulder) plus fatigue. Then cycle 8-14 were back to normal. It was a very weird drug, IMO.
Best of luck! Hopefully the rest of the treatment goes well for you
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Hi all,
Any one tried treatment with chiropractor for side effects Kadcyla of body, joint and bone pains
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Hi everyone, I believe this is the right thread to write.
My surgeon/gyn just called, I didn't have pCR on the tissue that was taken. Good news is that I don't need another surgery because the borders were clear. Bad news: 2 of the 11 lymph nodes which are taken had some cancer and the breast had some rest as well. (I will get the detailed pathology report on Wednesday.)
Now tumor board of experts recommend me Kadcyla. Not sure if 12 or 14 times, will have to ask that on Wednesday as well. A bit let down by no pCR and also by the fact that I can't get radiation since I was radiated on those spots for Hodgkin's Lymphoma 10 years ago. I am very much putting all the faith in Kadcyla at this point, hope it can kill whatever is swimming around.
Anyone else in a similar situation?
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Not in a similar situation with regards to the previous treatment, but we are about the same age. I'll be 43 in March. I had 6 TCHP and resolution of the breast tumor, but active invasive cells left in one lymph node. I've had four Kadcyla so far. The good news is that Kadcyla isn't as hard on my day to day as the TCHP was, but it's not without it's own side effects. If you are worried about limited treatment because of the lack of radiation, I am aware of a trial to use tucatinib in conjunction with Kadcyla. I didn't meet the qualification requirements, but you may. Your doctor should have more information.
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There's also a Clinical Trial for a HER2+ vaccine (prevent recurrence), if you're interested in doing something more and can't get into the other trial.
I did 14 cycles of Kadcyla and had a pretty easy time on it. There are side effects but, nothing too bad IMO. That said other people have had a harder time with it.
https://www.clinicaltrials.gov/ct2/show/NCT0338491...
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Thank you AlwaysMeC and morrigan_2575. Seems like both of the trials you had mentioned are not active in Germany, tucatinib one certainly isn't right now. I will be eligible for the vaccine one after Kadcyla from what I understood so maybe it is available until then.
Which pre-meds did you use for Kadcyla? Neulasta shots are necessary? You took steroids? I am grateful for any information so I am prepared for next week, I will try to schedule my first dose on Friday.
My onc is confident that Kadcyla is a good systematic therapy to get rid of any rest and that he thinks surgery had gone well and removed what was local anyway. Hope he is right. My previous onc was a very weird man who only concentrated on the negative and he was always making me nervous. Now I want to go back to that facility to receive Kadcyla because they have hand and feet cooling machine there but I am not thrilled to hear his "oh no pcr you are dead already" pitch. *sigh* . Anyone cooled hands/feet during Kadcyla?
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sorry, I looked and saw DE thought you were in Delaware
I had no premeds, I got 2 Tylenol and did my Kadcyla at 30 minutes (after the first which is always 90 minutes).
I ended up getting Neulasta because my ANC/WBC kept dropping, it's not a normal aspect of Kadcyla though.
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