Kadcyla for residual disease after neo adjuvant chemo
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are there any support drugs given with Kadcyla? Steroids? Benadryl? Etc
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morrigan_2575, I did not take any support drugs with Kadcyla. I have the option to take Zofran for nausea but I have not needed that
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Thanks!
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Morrigan -- I have been offered anti-nausea meds and antacid IV but have declined, so I just get the infusion. Makes for a much shorter infusion day than TCHP for sure!
I saw your post in the other thread about thigh pain! I felt like I had run up Mt. Washington pretty much every day by the end. But without the strength and endurance gains
In fact, it has taken me months to get back the strength I lost in that area (even to do basic things I never thought about before like get off the floor without pushing with my hands).The Kadcyla seems to be kicking my butt in different ways, but most people tolerate it very well.
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I’m offered Benadryl (which I refuse) and Tylenol (which I take in case of joint/muscle pain). I still hydrate like crazy before, during, and after the infusion
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Its official I'm switching over to Kadcyla for 14 Cycles next week. They canceled my HP treatment for tomorrow and, booked me and appointment with my MO on Monday. I'll either get my first Kadcyla treatment on Monday or shortly after depending on my blood counts.
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Morrigan -- a few pages pack folks recommended Biotene mouthwash and xylitol melts for the dry mouth, and they have been lifesavers! The melts are especially helpful for mask-wearing situations.
In other news, after 3 of the worst days of my life, it seems the worst of my symptoms have been from the aromatase inhibitor, and now after 3 days off the AI my symptoms are MUCH better. So the Kadcyla is off the hook. On the other hand, the hormone blocker is also critical to my prognosis
Today the Oncologist asked if I had fibromyalgia as they have noticed people with fibromyalgia tend to have a lot more pain with the aromatase inhibitors. So we shall see. Perhaps I will have to wait on the hormonal treatment until I am done with Kadcyla.0 -
@yeslama - I was reading a BC Support Group on Facebook and this topic came up. People there said there are a bunch of AIs available and it's a matter of finding the right AI for you. If this one isn't working ask your MO to prescribe a new one.
I use Biotine, Mouthwash, toothpaste and spray as well as the Xylitol. I went to the Dentist on Monday and asked them, they said that's pretty much all you can do.
They did give me the Prevident Dry Mouth toothpaste. They said it would be better since it has Fluoride which would protect against cavities.
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Yesmla so glad you are doing at least a bit better. Sounds like quite a rough spell there. It must be such relief to actually identify the causes.
I take a steroid right before infusion and that's it. 8th kadcyla infusion yesterday! One week of tamoxifen.
Tonight I am having my first drink of golden milk, recommended by an integrative oncologist who I finally got an appointment with. It is supposed to boost immune system, reduce inflammation and so many other benefits . Will see. It does taste good!
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Hi,
I'm looking to see if anyone else has had this issue. Last week I was diagnosed with radiation pneumonitis and started on 15 days of prednisone and a strong antibiotic. Today, I went for my 9th Kadcyla infusion and my MO cancelled my infusion today and pushed my next infusion back three weeks because of the pneumonitis. The last time I had an infusion was June 9th and now I won't have another til July 30th...52 days!!! I'm concerned that there is such a long time between treatments.....Has anyone else had this same situation and if so, how did your Dr. handle it?
Thanks for your help!
Julie
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Flnana2, I don’t think you need to worry too much. It’s common to have gaps in chemo. I was off chemo for about 6 weeks last year due to liver and gallbladder issues.
I also requested to be taken off Kadcyla for the last few treatments and to take just Herceptin instead due to radiation SEs. My MO said this was fine in my case.You could ask your MO about this option for your case.
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cynthea,
thanks for your response. That’s a good idea to just get a Herceptin infusion between now and the next treatment. I don’t know if the Herceptin is a problem with the lungs or not. Worth asking about though.Thanks
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Hi all!
I realized this morning that today is my chemo-versary. I started TCHP on July 11 last year. Man, going in to that first chemo was so stressful! Now it is so routine, though as my husband pointed out, we went into that without masks!!!!
I am afraid I have to report things aren't going so great. My feet are so painful I have been screaming and crying (which I have never done before and I have a long history of serious and painful medical problems).
I actually got total nerve blocks of my feet yesterday and it was so blissful for a few hours, but then I was up in the wee hours again with pain. This is all so discouraging! My infusion last week was postponed to this week, but I don't see how I can do this week's. I am quite discouraged. And there is no way to know if this is late effects from the taxotere or if it is from the kadcyla. I really, really want to finish the kadcyla!
Have again just started eating whatever I can as I am losing weight too fast. Sigh.
I hope everyone is staying cool and dry and having a nice weekend.
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can you get medical marijuana or perhaps live in a state where recreational is legal?
My cousin lives in a state where it's legal, she bets gummies and a cream for pain management
Congrats on the Anniversary.
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I am actually a Fed, and they haver recently started random urine testing again, and MJ is illegal federally so I am not going there. Even CBD products often have varying amounts of THC so that is off the table as well.
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Yeah, sorry about that. My state allows medical marijuana but, it's a difficult process to get approved. Hopefully the federal government will catch up to the states soon
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Today is Day 8 for Treatment #1 of Kadcyla.
I don't think I've had any SEs (so far). If I have they've been very mild. I don't feel any different than I did after my solo HP treatment.
I'm not going to get excited because from what I understand this treatment can be unpredictable (as far as SEs) and, there maybe a difference between the 90min infusion and the 30min fusion.
However, if (🤞🏻) the next 13 infusion go this smooth I will be very happy (🙏🏻)
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HI guys,
Follow up mammo today was all good, as I expected. Still losing weight fast, but we think the lack of appetite is from the pain. The Kadcyla has been on hold, but we are thinking the pain really is a late effect of the Taxotere, which to me is good news. After a lot of back and forth with onc this week I was in such bad shape they sent me to the ER. I was begging them to just admit me and completely drug me up so I could sleep for 36 hours
There was a lot of discussion, including discussion of ketamine! In the end they sent me home with oxycodone, ramped up duloxetine (higher than I thought max dose was?) seriously ramped up gabapentin... And I slept for TEN hours!!!! Didn't even get up to pee! Got up in morning, called out of work, ate breakfast (appetite!) and went back to sleep 
Probably slept at least another 6 hours during the day, lazed about the rest of the day (ok, finished binge watching Queer Eye) and got a good night's sleep last night! WOO HOO! The pain in my feet is coming back some, but it isn't as bad, plus my "vacation" has just put me in a much better space! I am also happy about thinking it is not the Kadcyla, because I really want to finish that!
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YesIAm - Wow! That Taxotere sure is a beast! But I’m glad it’s not the Kadcyla too. And your sleep sounded amazing - I hope it rejuvenated you!
I love Queer Eye!!!
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YesIamaDrag- I’m so sorry to hear what you’ve been going through, glad you were able to get a little respite, and hopefully the taxotere effects will wear off!!
I’ve have 3 Kadcyla sessions now, and for me personally the neuropathy is MUCH worse than it was on TCHP. Still at the “tingling” level not painful (thankfully), but I’ll quit Kadcyla if the neuropathy worsens, the suffering isn’t worth it to me. Kadcyla side effects have been pretty unpredictable in terms of knowing when I’ll have “bad days” of terrible pain in my low back, hips and legs (seems to be most focused in the joints, which make more noise than a crackling campfire now! 😆). I’m not on taxotere yet so it’s definitely the Kadcyla. I’m a little bummed that I’m not having an easier time on it. Lots of the side effects are no big deal (super dry mouth, runny nose, sporadic out of the blue dry heaving and nausea, no appetite, more of the usual fatigue), but the body pain wears on my spirit over time. ☹️ I just seem to be sensitive to chemo in general. The only positive is that speeding up infusions to 30 mins didn’t seem to make anything worse, other than I felt really spaced out for awhile after.0 -
I am pretty discouraged. My kadcyla and my AI are on hold still, no restart date yet. Feet are better than last week for sure but I am still waking multiple times a night from it. And poor sleep = more pain and less emotional resilience for sure. Sigh. Last night I hooked up an old cryo-cuff from previous orthopedic surgeries and had it running all night by my feet. That really helped! Better than an ice pack because it not only lasted all night but was never too cold. The ice packs helped but were way too cold to start then had a limited window of just right before hitting not cool enough.
Just experimenting with anything non-pharmaceutical that I can. I can't get into pain clinic until end of August, so glad at least some relief. AND as of tomorrow I am 9 months out from the taxotere so at least the neuropathy from that should stop worsening now. Also now that pain went to over-the-top unbearable I have been able to ramp up the gabapentin really quickly and it hasn't made me as sleepy as at first, even though I am more sleep-deprived.
At least in the morning it should be coolish and clear and we can have coffee and breakfast in the garden
OH! And I had dinner last night and tonight! (well, tonight was avocado-toast on fresh out of the over sourdough baguettes my husband baked. Did I mention he also home-roasts all our coffee and makes all our yummy yogurt? Cancer sucks but I am still spoiled rotten!) Appetite is improving as my pain gets under better control.I hope everyone is well and has a wonderful and restful weekend!
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Yelsama and Heart Shaped - I'm so sorry to hear you are both suffering from pain from Kadcyla. It's such a promising drug, but it's so hard when things give you such pain.
I'm hoping to start Kadcyla this week, I'm scheduled for HP, but my doctor told me I'm a perfect candidate for Kadcyla, with my residual cancer. I am scheduled to see her on infusion day, so I don't know if she's switching it this time, or the next infusion.
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Well, mine is on hold because we aren't sure (yet) that the neuropathy isn't from the taxotere. I am really really really hoping it is not from the kadcyla because I want to go back on it. I am trying to take comfort in the fact that if I can't restart the kadcyla there is Nerlynx as a next option.
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hello yaslama, I only could do 9 of the kadclya. I just had too many side effects. definitely the nerve pain in my feet, UTI's and coughing, some nose bleeding. Of course I wonder how not doing the final 5 treatments will affect me. I have been on letrozole for 9 months and had 11 herceptin treatments, and 4 perjetta treatments.
so not finishing kadclya has bothered me for certain
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I just finished meeting with my doctor. She wants me to do Kadcyla, but doesn’t want to start until I finish radiation. Until then, I continue on HP. I’m only 3 weeks out from my DMX, and 2 weeks from my node dissection. Which means she thinks I won’t be ready for Kadcyla until about October. So start my ten months in October. It’s just such a long time for treatment. I started TCHP in February 2020 and I could be doing infusions until about August 2021 if I tolerate it.
Anyone else have to wait until radiation is complete tostart Kadcyla?
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My MO double checked if it was OK to do Kadcyla with Radiation and then gave me Treatment #2.
People in my Kadcyla Facebook Group that are doing both said the only issue is extra fatigue during the week they overlap
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For the post neoadjuvant/surgery people, how many cycles are you getting on Kadcyla?
I know the Katherine Study and the Kadcyla website say 14 cycles. In the Facebook group I joined I see people say they're getting anywhere from 17-19? I saw one person who I think maybe on the Attempt Trial protocol (Stage 1, Kadcyla for 17 cycles instead of Chemo) but, I can't find anything about 18 or 19 cycles for people with residual disease.
I don't know if they/their MO is confused because Herceptin is 18 cycles total and they assume the same for Kadcyla. Or if there's an alternator protocol I should look into with my MO.
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mmorigan - makes sense about the fatigue if you are doing both radiation and Kadcyla at the same time. My oncologist must just be more conservative with everything, she doesn’t want to start my hormone blockers either during radiation. She said she wants me all recovered before Kadcyla and tamoxifen. She told me 14 treatments of Kadcyla if I can tolerate them, but many women don’t do to SE or sometime liver functionissues.
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14. I am not sure how the KATHERINE trial hit on that number. Also, I was not able to start my Kadcyla until after radiation, and was grumpy about that. I think they really wanted to be able to separate the side-effects, and it was probably good as I started having a lot of trouble swallowing during radiation.
I saw my oncologist today, and have good news! I start my infusions again next week at a reduced dose.
HOORAY!0 -
Do people ice their hands/feet during Kadcyla? I know it’s targeted chemo to the Her2, but I thought my doctor said neuropathy is sometimes a side effect. Just wondering if people ice during the infusions.
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