Kadcyla for residual disease after neo adjuvant chemo
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Congratulations, Angie!!! What a great accomplishment!
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Way to go adhoney!!
Tuesday was my 6th kadcyla infusion. Minor SE, including light hair on my face which could be from the TCHP before. Fatigue, helped by nap. Achy legs dealt with by glutamine and dry mouth alleviated with biotene. I feel rather lucky so far.
My MO wants me to start tamixifen (or aromtase inhibitor) in two weeks so I can report back during the 7th infusion. I am so nervous about starting yet another drug. I know I just have to suck it up though.
Had a telephone medial appt with integrative doctor. That was pretty good. Will write some of her suggestions next time.
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great job Angie! I’m on my 9th - I will be done by Sep 3 😊 tamoxifen with it, is doable - I have fibroids per the pelvic US - will see my uro/gyn next week - the plan is just the tamoxifen for a year then AI so we’ll see - I hate the thought of surgery again for a hyst 😩 guys, I’ve discovered that magnesium and regular exercise - I indoor cycle with Zwift 😊 - best invention ever! - helps my aches and pains 😊
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just finished 14 rounds of Kadcyla. Hopefully, the nose bleeds, aches, and fatigue will subside soon. Will have reconstruction in 2-3 weeks. Because I am hormone negative I am done with treatment. Praying for complete healing. Prayers for all of us on this board
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Posting this for my my mom. She lost her eyesight.
Does anyone experience loss of eyesight after some rounds of Kadcyla? If yes, any treatments that helped you.
Her Story: Detected with IDC triple positive breast cancer in 2017. Underwent left breast lumpectomy and 10 lymph nodes removal. Went through several rounds of Herceptin and radiation but her disease spread to the bones and her brain. 4 rounds of Kadcyla put her into remission but she lost her eyesight in both eyes. The doctors took her off Kadcyla. The medical term for her eye condition is Optic Neuropathy.
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Oh BC - so sorry to hear about your Mom's eyesight. Do the docs say it may return/resolve like neuropathy of the hands or feet?
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bcfighter - i looked and did see some studies that Kadcyla could impact vision but, it mostly talked about cataracts, dry eyes, teary eyes etc. In those cases the studies showed that stopping/pausing Kadcycla cleared the issues cleared up although I don't think cataracts can clear up.
I hope your mom's issues start to resolve now that they stopped/suspended Kadcyla.
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Congrats Melissa! Praying for you with your upcoming surgery. I hope that your side effects resolve soon from Kadcyla.
Bcfighter: I hope your mom gets some answers about her eyesight soon. I'm sure that's frightening.
Continued prayers for everyone here. We can get through this.
Angie
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Hey everyone, I’ve really appreciated reading all of your updates! I had my first Kadcyla on Monday, and so far I’m tolerating it well, definitely worse than herceptin but not even CLOSE to TCH/P. The first night I felt fairly unwell, and had neuropathy and a desperately dry mouth, but since then the symptoms have stayed mild and kind of come and go; nausea (controlled w meds), headache, very mild tingly neuropathy I only seem to notice at night. I have persistent fatigue and some leg cramps and joint pain, but in recent months the herceptin alone has given me all those things as well. I’m concerned about the neuropathy and expecting SEs to worsen over time, but honestly relieved to start off this mild. I’m going to start taking b complex and glutamine supplements again for the neuropathy, those really helped the first time around. Hope you’re all hanging in there during these sad, challenging times.
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My 7th dose of kadcyla. Halfway mark!
Biotene helps a little with my dry mouth and glutamine seems to help the legs.
Some potential first signs of lymphoedema on Sunday. Slightly swelling arm and greater feeling of tightness, heaviness. Wore the sleeve for the first time. Elevated my arm.i freaked out but wasn't awful. Just scared about possibility of a new lifelong ailment. By Tues appt, arm was better. Doctor said could be lymphoedema, made appt with pt. Will see
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Flowerkid -- fingers crossed it is not lymphedema and all resolves!
I will have my 6th Kadcyla this week, and I am having so much pain I am not sure how much more I can take. The thing is, I am not sure if it is the Kadcyla, the AI, or the combination. I know some people feel the side effects of the AIs improve if they can stick it out for 2 months, and I started about a month ago. Yesterday I actually started to cry at work, even with lidocaine patches on the worst spots.
I have been minimizing tylenol because I am so afraid of liver failure, even though I know it is rare.
The pain is mostly in my upper back-- feels like muscle, bone AND skin, but also in my breast and underarm and upper arm.
I would love to hear some encouraging words! I am really determined to stick it out because there is such a big difference in prognosis for me!
One more question -- since we are all in the same boat: Do you say "I have cancer" or "I had cancer" at this point? I realized I am saying (mostly to myself), "I have cancer" and am wondering why I am not more optimistic that it is gone after surgery (AND TCHP AND radiation). I think I need to do some more optimistic self-talk.
I hope everyone is well here. We are having a cool day before a progressively hot day. Even before the hormone deprivation I have (lifelong!) never tolerate heat well, so hope to enjoy this day while the weather is good
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Yeslama Dragon - I had neoadjuvant chemotherapy and then surgery on 5/19/20, and at this point I'm assuming that it is all gone, so I would say I had cancer. It might come back, and I would not be surprised if it did, but I consider it something in the past for now.
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I say I had cancer and I'm NED - No Evidence of Disease. I never say 'cured', but like December, the further out it gets, the less I worry about it.
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I say, I’ve had cancer this year...kind of nodding to the fact that it recent. Someone asked me, “did ya beat it?” I was sort of taken aback and didn’t quite know what to say. I think I mumbled something like, “well I’ll have to deal with it the rest of my life, but so far so good.
I am about ready to go into my 6th Kadcyla treatment. I’ve had low level nausea since my last treatment, it seems to be lasting longer with each treatment. Someone mentioned to me that her mom had been on Kadcyla for 4 years for metastatic BC. Her mom found that infusing the Kadcyla slower helped with the nausea. Do any of you have experience with this?
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Had Kadcyla # 6 today. Did not see MO so didn't have a chance to ask about the pain.
I swore I saw a whole discussion on here about intermittent fasting prior to kadcyla infusion helping with nausea, but now I can't find it! Perhaps I imagined it, but I did stop eating at 3 yesterday and didn't eat until lunch after infusion. I will let you know if I notice a difference!
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i don't know if this helps but, I did Intermittent fasting during TCHP and I never had nausea. I normally fast from 8pm - 1pm. With TCHP + Dignicap, i pretty much fasted from 8pm - 6pm (Chemo was from 8am - 2:30).
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hi guys - exercise helped with my achiness - I got done with my 10th kadcyla dose but started to get constipation so bad, I developed hemorrhoids that have been here a week despite hot sitz baths, topicals and suppositories - I say, I had it - breast cancer - hopefully never agai
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FNPMom: I was in the 5% who got horrible constipation on TCHP, despite taking everything but the kitchen sink (including multiple doses of miralax and mag citrate daily). Hemorrhoids and a fissure. I highly recommend a hand-held bidet. Cheap and easy to install.
Still dealing with the constipation and hemorrhoids, unfortunately.
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So sorry for your suffering with constipation gals. I am impressed that you are hanging in there!! My 7th dose last week. Still hopeful for health.
Anyonee who is taking tamoxifen - is your experience better to take it it in the morning or at night? Thanks!
I am about to start it tomorrow. Scared. But gonna do it...
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Sorry for the late reply MinusTwo and Morrigan_25. The doctors say that the eyesight will return but it has been almost a year she is without eyesight. She has been hallucinating since then; that makes her life more difficult than the disease.
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Flowerkid - I take mine at bedtime. Have only experienced night sweats. But I was doing that before diagnosis
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I take my tamoxifen at night - the hot flashes are intense for me but bearable, I get achy joints too - the constipation is new - just the past 2 kadcyla infusions - I’ve already seen my onc before I connected the dots between the kadcyla and my bowel issues -was at first scared that I’m leaching calcium from my bones causing it but my serum calcium levels are normal - I do have a bidet and it does help - I also have a portable sitz bath 😊 I’m thinking of seeing a proctologist if it’s persistent for another week - I had to take the lowest dose of linzess today but it made the constipation go away - thank you guys - it makes it bearable to talk about it and that I’m not alone
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not 100% sure but, I think I'll be joining this group. My surgical pathology came back and I had residual cancer. I'm going to see my MO next week for my HP injection and, hopefully he'll have a game plan in place.
I do have a question about this blurb I read on the kadcyla page
"Patients are selected for therapy based on an FDA-approved test for KADCYLA."
Any idea what test you have to take to get approval for Kadcyla?
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morrigan_2575, I did not have to take any tests to get Kadcyla. I’m guessing that my MO had to submit some info to my insurance to confirm my previous treatments and the mets, but I never saw any of that
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Hi Morrigan,
I suspect the test is the HER2 test.
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"I suspect the test is the HER2 test."
Ah, that makes sense. They made it sound so super secretive. 😁
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Agree. I didn’t take any extra test. I had 2mm of residual cancer in my breast tissue so my doctor just switched me from Herceptin only to Kadcyla. Easy as that
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Hi All!
I hope everyone is well.
I am having a pretty awful time this cycle, and I realized today (duh!) that they haven't weighed me recently at infusion because of all the COVID-related re-arrangements (infusion is now in radiology -- yes, my 4th infusion was sitting right next to the mammo machine!!!! lol) and they don't have a scale back there. My home scale was without a battery for a while. Well, I haven't had a ton of nausea but my appetite has been really poor and I weighed myself this morning and my weight is down at least 10# since the last time they weighed me.
I am actually kind of hoping about 16 mg extra of Kadcyla is why this round is hitting me so hard, and not just that each round will get this much harder! I am not quite halfway through! HIGHLY motivated to keep going, even if it requires more FMLA time.
I keep wondering when the 5 year update to KATHERINE trial results will be published (hoping they have kept the study going!) Also have started obsessing over what the post-hoc sub-group analyses would be if they were available (things like the 18% who dropped out, more details about why and when, and how they did). Even though I detest post-hoc sub-group analyses and in COVID-times I keep adding this big caveat when I answer questions about the latest studies in the news, "well, they had had a fairly robust study design, but the positive results they are reporting were only found in post-hoc sub-group analysis, so you have to take them with a big grain of salt". Sigh.
I also know that for any one of us, the statistics are meaningless, other than to guide treatment. I mean, either we are long-term survivors or not. Two options. No guarantees. I had a 99.5% chance of not getting breast cancer in the next 5 years the day before i was diagnosed. But I still crave reassurance, as I am sure we all do!
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YesIAm - sorry you are having a tough time! I just had #4 Friday and so far so good but I was up 2# since the last time! I’m sure your weight loss has something to do with it.
I was terrible at statistics when I was in college but I’m like you, I would like to see what outcomes are happening with Kadcyla. I’m so thankful to be able to have this infusion. I’m thankful for all of my treatment. They, as well as my surgical pathology results, and my awesome team of medical professionals, are my touchstones when I find myself getting an it about the future.
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Thanks Angie.
This morning I was in the most pain I think I have ever had (and I am someone who lives with chronic post-thoracotomy pain and a lot of other pain from Ehlers-Danlos issues and surgeries). My feet were on fire all night, despite gabapentin and topical lidocaine and this morning everything is painful. I did skip my AI this morning and I think I will for a few days to see how much that is playing into at least the back pain (and I see others complain of foot pain as well).
I am completely non-functional today
. Not looking forward to going back to work tomorrow. Having to wear a mask at work is also something else with the dry mouth!!!! SO MANY thanks to those on here who recommended the Xylitol melts and Biotene!I hope everyone else is doing well!
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