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Kadcyla for residual disease after neo adjuvant chemo

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Comments

  • alwaysmec
    alwaysmec Member Posts: 107
    edited February 2022

    I get Zofran for nausea, although I 've never thought about asking for Kadcyla without it. The nurses give me a bag of fluids as well while I wait to be discharged.

  • yesiamadragon
    yesiamadragon Member Posts: 343
    edited February 2022

    All of us are here because we found ourselves without PCR. I had more side-effects than most, I think, and my oncologist did drop my dose mid-way through (over my objections!) but I got through all 14 cycles. I did not do any pre-meds with the Kadcyla.

    The hardest part, as it felt to me with every single turn in this cancer road, was the initial round of coming to terms with yet ANOTHER round of bad news and more treatments... But I am glad to have this other tool that wasn't available not long ago. All of this makes our prognosis better.

  • sarah_78
    sarah_78 Member Posts: 119
    edited February 2022

    Thank you morrigan and AlwaysMeC for the information. As I suspected, new drugs mean no standards for premeds. I am glad though steroids aren't part of it. I'll ask for Zofran if I have nausea issues.

    @YeslamaDragon you said it so well, this is exactly how I am feeling. I am ready for that one thing that goes right and trying to focus on the positive, like the surgery and not much complications until now, clear margins etc. When I first heard about Kadcyla, I was terrified to be getting more chemo but now after thinking it through, I am glad there are other drugs than just Herceptin and Perjeta, which obviously didn't work very well on me until now. I am glad to see you are 2+ years after treatment and you seem to be doing well Hug

  • amybirnbaum1
    amybirnbaum1 Member Posts: 12
    edited February 2022

    I am heading into my third round. my problem is itching started during TCHP and now flaring again with kadcyla. benadryl barely takes the edge off. its my arms and shoulders.ugh! only 9 more treatements to go. If anyone has any relief ideas let me know! Love to all.

  • minustwo
    minustwo Member Posts: 13,389
    edited February 2022

    Amy - I've never been able to take Benedryl since it knocks me out. My back itches constantly - although my active BC treatments are long past. My latest thing my dermatologist said to try Zxytal - a third generation antihistamine (Levocetirizine), developed since Claritin and it's successor, Zyrtec. She gave me a prescription but I haven't filled it yet.

  • yesiamadragon
    yesiamadragon Member Posts: 343
    edited February 2022

    Amy -- Have you tried Sarna lotion? Antihistamines knock me out but the sarna really helps with the itching.

  • idkwhatsnext
    idkwhatsnext Member Posts: 12
    edited February 2022

    morrigan_2575 I didn't have nausea for the remaining infusions just like what happened to you. Strange?!? I was also able to stop taking Nexium for the reflux a couple of weeks after my last infusion. Glad to be done though. Thanks for the info!

  • morrigan2575
    morrigan2575 Member Posts: 806
    edited February 2022

    @idkwhatsnext - Kadcyla was the weirdest drug, the SE were so random. The only consistent one was Constipation. My first cycle I had a horrible nose bleed...one horrible nose bleed and then nothing. Cycle 2 no nose bleed. Cycle 3, one nose bleed, then never had an issue.



  • sarah_78
    sarah_78 Member Posts: 119
    edited February 2022

    I just went to an appointment with the doctor for the Kadcyla infusion starting this Friday, they told me my hair would thin. It just started to grow after THCP and I was expecting Kadcyla wouldn't affect that. How was that with you all?

  • yesiamadragon
    yesiamadragon Member Posts: 343
    edited February 2022

    My hair grew back on the Kadcyla.

  • morrigan2575
    morrigan2575 Member Posts: 806
    edited February 2022

    I didn't lose hair on Kadcyla. My hair growth might have slowed down but, it still grew and didn't thin or fall out.


  • sarah_78
    sarah_78 Member Posts: 119
    edited February 2022

    Thank you Yeslama and morrigan, hope it will be the same for me.

  • alwaysmec
    alwaysmec Member Posts: 107
    edited February 2022

    Sarah, I get lots of compliments on how thick my hair is. It looks like I got a pixie cut on purpose. It was buzz cut the first week of October after I used a cold cap, so it could grow back evenly. Even though it's super thick, I feel like my hair and nails are growing slower than they did before chemo and Kadcyla.

  • sarah_78
    sarah_78 Member Posts: 119
    edited May 2022

    Hi Kadcyla ladies,

    I am on 5th cycle, 14 planned. I am doing well but liver values are slowly creeping up.

    Anyone had this problem? Doctor didn't seem concerned with them just yet but seeing them go up each three weeks worry me. Values: GOT/ASAT is now 61 U/l (normally should be below 35) and GPT/ALAT is 62 (also should be below 35). They were normal when we started and each time went up just a bit more. Doctor says they will check with ultrasound if it goes above 100 and this happens often. Anyone in the same boat to give me a peace of mind?

  • Noodlesg
    Noodlesg Member Posts: 33
    edited May 2022

    Hi everyone,

    My first post in this thread. I just started Kadcyla mid-April, I've done 2 out of 14 so far. It's been okay, much better than chemo. I'm a bit nauseous on days 4-5. Have a bit of fatigue, but also doing radiation concurrently, so am sure that doesn't help.

    Sarah - my ASAT is 42 U/l ALAT is 48 U/l after the first infusion, will let you know if the numbers get worse when they do the next blood test. They were normal before treatment started. I did ask my onco about this, and she compared it to a mild inflammation, and will go away after treatment ends. My doctor gives me Heptral (ademetionine) to support my liver.

  • sarah_78
    sarah_78 Member Posts: 119
    edited May 2022

    noodlesg, glad to hear you are doing good after your treatments.

    After the second one mine was also about 40ish, then one more went up to 55 and right now 61. Please keep me updated. I'll ask my doctor about Heptral.

  • Noodlesg
    Noodlesg Member Posts: 33
    edited June 2022

    Sarah, I just had my 3rd infusion yday. My pre-infusion liver nos went down, both 38. So this is refective of infusion #2. I was expecting everything to be worse because I had radiation the past 3 wks, but am happily surprised. With breast cancer, I've learned to appreciate all the happy surprises I get! Never know what's around the corner.


    Hope your numbers are okay! When do you go in for the next infusion

  • sarah_78
    sarah_78 Member Posts: 119
    edited June 2022

    noodle, I am glad to hear that. My 6th cycle is next week and hoping for better values or hopefully not a drastic change from last time.

    Last week I had an appointment to check with my oncologist and he said the current liver enzyme values (ASAT/ALAT) at 61 is no problem at all, it is expected and should go down once the therapy is done. That is assuring but I am reading in Kadcyla web page that one has to cut the medication at 100, I will speak to the doctor about it again.

    What I did this time around is that I stopped taking Vitamin D thinking it might be another exhaustion for the liver but now I am reading actually vit D helps liver. Confused.

  • sarah_78
    sarah_78 Member Posts: 119
    edited June 2022

    I am reporting, 6th cycle done, ASAT/ALAT stayed the same, went a little down, 57-60 right now.

    I am not taking D vitamin anymore, doctor on site couldn't answer my the question I had about having D Vitamin helping liver or not, my value is just at the lowest border for Vitamin D, sun is shining, so I think it won't drop for a few months.

    How are your values noodlesg?

    On me they also measure bilirubin, that one isn't out of range for now.

  • Noodlesg
    Noodlesg Member Posts: 33
    edited June 2022

    Hi Sarah, sorry I hadn't replied earlier. I just returned from holiday, my first one in 2.5 yrs. With all this craziness of covid, then this diagnosis, it was much needed. Stark reality of coming back though, was my infusion earlier today. Sigh. My readings were a little worse than last time, AST 51, ALT 58. So I think I must be exactly where you were? Today was my 4th, so I'm prepared for it to be in the 60's in 3 wks time. My onco wasn't bothered about the number, but the nurse slipped and said ' Your bloodwork is totally fine except for liver, it's gone a bit haywire.' Really? hahhaha I actually went back to check my liver numbers when I did chemo, ALT went up as high as 165, but it came down.

    I take calcium supplements (Caltrate), and it has vitamin D as well, so I'm not taking any extra. Not sure it's helping my liver either, but it helps to facilitate calcium absorption, so if there's an added bonus, I'd be happy. But my liver numbers aren't stellar, so maybe it's not doing much.

    My bilirubin is 0.52 mg/dL, in the normal range.

    Just curious, how is yr hair growing after 6 infusions? I haven't lost any(not noticeable at least), but I'm not sure it's growing as fast as it normally would. Maybe it's my imagination? It was growing out so fast a few wks after my last chemo, even my 8 yr old commented. I'm still waiting with eager anticipation for it to grow more.

  • sarah_78
    sarah_78 Member Posts: 119
    edited June 2022

    Dear noodlesg,

    tomorrow I will be getting 7th Kadcyla cycle

    Last 4 cycles were like this:

    AST: 54 - 61 - 61 - (now) 70

    ALT: 54 - 62 - 57 - (now) 69

    my doctor said these values can even be achieved by taking antibiotics for a while but I checked my values during chemo and found out my values were never over 35 (which is upper limit). Maybe it depends on the type of chemo, I was getting TCHP. I used to have those on my signature but at some point it was erased and I couldn't figure out how to put it back there.

    Hair: yes! Definitely. My hair was growing like crazy between last chemo and first Kadcyla, then got super slow. So much so, I cut my husband's hair two times already since I started Kadcyla and mine isn't as long as his today. That said I am still happy with having hair :-)

  • Noodlesg
    Noodlesg Member Posts: 33
    edited July 2022

    Hi Sarah, how did your 7th infusion go? You're half way done, congrats! Happy dance.

    My chemo was ACT, we didn't find out that I was HER2+ until after my surgery, so I never had HP. The Taxol was what elevated my liver numbers. I used to have my details in my signature as well, but with the upgrade, everything got erased and I never bothered to figure out how to put it back either.

    I'm happy to have hair, too! One of my friends gifted me a care package when I was on chemo, and without thinking, she bought me some shampoo. It took a while, but when I was able to use the shampoo on HAIR, I was so excited. At the moment, my hair looks like I have a really bad/short pixie cut. I'm so used to wearing my headcover that it's been hard to be to stop, if you know what I mean? Last week, for the first time ever, I went to the mall with no headcover, and I felt a bit self conscious. I'll get over it I know :)

    Wishing you a great weekend! Take care.

  • sarah_78
    sarah_78 Member Posts: 119
    edited July 2022

    Hi noodlesg,

    that is interesting that pathology didn't see HER2+, from what I know once it isn't conclusive by IHC, they do a FISH, they haven't done that? I am glad they found out after the surgery though.

    Indeed I got the 7th on Friday and I am glad I got as far as the half of it, then again I have a bad feeling that it will come back when we stop with treatment. Recently I had been having negative thoughts on that front so tomorrow I have a meeting with psycho oncologist, in the hopes of processing some of my feelings/fears I didn't have time and energy to rethink and hopefully I'll learn to get more positive :-) Friday was uneventful, I have minimal gastro issues right now, nothing too bad. Hope it goes on like this since it is exams period and I have to prepare a couple of them during the next days before my summer holidays. I am working almost full time but remote, since they don't give me Kadcyla if I get covid positive and there is no way of preventing it if I go to work at the university with 60+ students in a lecture room.

    As far as hair go, I can understand you so well. I am still wearing hats I acquired during my bald times and I was also so happy to be able to use a shampoo, lol, exactly as you said. I have now about 3-4cm hair although it is longer at the back of my head. My husband makes fun of me, calling it a "Sonic the Hedgehog" style and we laugh about it. Right now hats are mostly for hiding the terrible style going on there. I wanted to go to a hair dresser and get it in shape, probably will do it in a month right before driving for holiday. Before I didn't want to cut it, also considering it grows so slow.

    You got your 5th infusion? We are so close, hope you get minimal SE, stay in touch :-)

    Cheers

    Sarah

  • Noodlesg
    Noodlesg Member Posts: 33
    edited July 2022

    Hi Sarah,

    My IHC tested negative (1+) on the sample they took during the core needle biopsy, so they never ran the FISH. About a month after, they did a sentinel lymph node biopsy, ran the FISH on that sample, which also came back negative. After surgery, IHC was borderline, so they ran the FISH, then that tested positive. I was pretty upset when I first found out. At the time of diagnosis, everything was such a blur, and had I known, I would have insisted on the FISH on every sample. I've since calmed down, and like you said, at least they found it after surgery. I've sought a second opinion and both oncos agree on the course of treatment going forward, so on that front, my mind is at ease.

    Hope your psych onco visit goes well! I think this battle can sometimes be more emotional that physical. Some days I feel the same way about it coming back, I'm also stage 3. I just saw my surgeon and she's scheduled a mammo/ultrasound for next month, then mentioned routine PET scans, which she would get to at a later date. I get nervous and sick to my stomach thinking about scans. It just reminds me of the scans at the time of diagnosis. The anxiety ..bleh. There is a Stage 3 thread here that I found, the ladies there share stories of many many years of survival. I read that and it makes me feel tons better. It helps if you ever want to read it :)

    There is a covid surge in my town right now. It's great that you can work remotely. Stay safe! Also glad you're doing well post infusion #7. My next one is #5. I have gastric issues, too. Seems like we really have very similar SEs.

    Wishing you a good week! Sending hugs and positivity your way.

  • sarah_78
    sarah_78 Member Posts: 119
    edited July 2022

    Dear noodlesg,

    about the scans, they do induce some stress initially but then you know you are clean and you can go onward with your life. In my case, I only had an initial scan to see if there were metas and then no scan anymore. This is the protocol where I live and I find it more stressful. The unknown is sometimes worse to deal with.

    The psychological part is definitely a challenge. I had 2 sessions with psycho oncologist and it went well. I feel good after the sessions but then yesterday at the hospital when nurse had made a mistake and had to draw blood twice, I lost it again. I only have 1 arm and 1 vein which is easy to access and that one is getting hard from all needles. She was just saying "we should let it heal a bit and try the back of hand" then she was like "ooh I made a mistake, we have to insert needle again". FML. Sorry venting a bit.

    Then today I had seen AST is already 93 and ALT is 89. So they are getting close to 3 times the limit value (35). According to the certified breast centre I am being treated in, the protocol suggests that at 100 (3xlimit) they will check my liver with ultrasound, then go on administering the drug normally. But I read Kadcyla web page and there the recommended protocol is different. It is here, page 6. It says we should stop the treatment and wait for AST/ALT to recover to below 100.

    I am very confused, firstly I don't know where the difference comes from. Secondly I only have 1 liver and don't want to lose it by just letting them do whatever, hope that makes sense. So my current stress is a little more than psychological although of course that part plays a role too.

    Here we have Covid surge too, stay safe. You know how your values are and what the protocol is there where you are treated?

    Cheers

    Sarah

  • Noodlesg
    Noodlesg Member Posts: 33
    edited July 2022

    Hi Sarah, I hope you're feeling good today. I just had #5/14 last week, and my liver enzyme numbers were 52 and 68 (AST/ALT). I asked about these numbers before the infusion and my onco said it was fine, and to be expected. I had not asked about when an ultrasound would be needed for the liver, as we were more focused on the 2D echo for my heart. I'll ask her the next time I see her (I also want to know). Before we started, I was told if there was an issue, they will reduce the dose, and/or give me a few days extra rest for the levels to settle. If I really cant handle a full 14 rounds of kadcyla, they will most propably switch to just herceptin.

    For what it's worth, when I was on AC chemo, I had a MRI done after infusion 3/4, and it did not show significant tumour shrinkage. I asked both my onco and breast surgeon if I really needed the last infusion as AC is also not very good for the heart. Ultimately, it is my body and my choice. They both said I should do it because statistically, finishing up the recommended dose gives me the best chance to fight this. One of them even said 'if it ever comes back, you will know that you fought as hard as you can, and will never wonder what if you had done more.' Honestly, I think they push aggressive treatment to me because my tumour was quite large, I have a lot of node involvement, and they say I'm young (diagnosed at 45 yrs) so my body can handle it. I totally understand how you feel, I want to kill this cancer, but I also want to walk out of this experience with functioning organs!


    Sigh! Those needles and our poor veins..can you believe I was scared of needles before this diagnosis. Hhaha. Guess I overcame that quickly.

    Sending you all my good thoughts! Will let you know what my onco says after I see her next time. Take care.

  • Noodlesg
    Noodlesg Member Posts: 33
    edited August 2022

    Hi Sarah, how are things? I'm stopping back to let you know that I had bloodwork done earlier this week, and my liver enzyme numbers improved. AST 40 (down from 52) and ALT 38 (down from 68). I had been drinking organic beet root juice, as some of the ladies in a support group that I am part of shared that it works to detox the liver. It apparently works for some people, and not others. It worked for me! I've been drinking 150ml 5 days a week for about 1.5 weeks before blood work was done. I'd check that it's okay with your doctor first, but it may be worth a try? It's not good for you if you have kidney stones. My onco said for me to reduce it now to 3 times a week, since numbers have improved. Best of luck. Hope you're doing well.

  • sarah_78
    sarah_78 Member Posts: 119
    edited August 2022

    Hi noodlesg,

    I just came here to write that I also have my liver values a little lower compared to last time. Today I got the 9th infusion and they are AST:86 and ALT: 71 (down from 93 and 89 respectively). I'll take this little victory and be happy with it until next measurements. The beet root juice idea is interesting, I will try that and let you know. I found one here, it says it is fermented, yours too?

    The only thing I did differently was to apply liver packs about an hour each day, those are thin beeswax patches/film I place on the right side of my belly where liver is, then place a warm pillow over it and relax. I read they work best mid day when liver is especially active. I was taught how to apply it and which packs to use by the naturopathy department of the hospital I was being treated before this one. I was using them during chemo before the operation, then forgot about them afterwards. After remembering my liver values were never high during chemo, I thought I'd give it a try. I will go on doing it this cycle and hope it does work (and it wasn't just a coincidence).

    Let me try some beet root and hope with both going on, it doesn't go insanely up a few more cycles, 5 more to go.

    By the way I talked to the professor and he said even if it goes above 105, they will give it because he is confident those values aren't alarming.

    I am very glad to hear your values are really well :-)

    Oh and we are almost the same age too, just last week I turned 44.

    Cheers,

    Sara

    PS: I am craving going to the hair dresser, the back of my hair grew more than the top and it started looking weird, like those hideous hair cuts of 80s lol.

  • sarah_78
    sarah_78 Member Posts: 119
    edited August 2022

    I would like to also ask here to everyone who had Kadcyla or are getting it: Did you consider or were you offered Nerlynx (Neratinib) after that? I am hearing it around but my onc didn't speak with me about it. I wonder if I should ask him.

  • sarah_78
    sarah_78 Member Posts: 119
    edited September 2022

    Noodlesg, hope you are doing so fine that you don't even have time to write Heart

    I wanted to shortly report, be it liver packs or beetroot juice, my liver values seem to decrease further. I made it back to AST: 71 and ALT: 54 (from 86 and 71 respectively 3 weeks ago, it was up to 90s 1.5 months ago).

    I leave the tips here for anyone going through Kadcyla. I will go on applying liver packs and drink a few 0.33lt juice a week for the next cycle too. Just be aware if you poop pink, you know why because once I almost got a heart attack seeing THAT, tmi sorry about that Happy

    Onto 10th cycle tomorrow.

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