Who's on Kadcyla/TDM1?
Comments
-
hugs LoriCA.
I kinda know how you feel
As I have been hospitalized the past 4 days with hemolytic anemia most Likely caused by the combination of kadcyla with the new drug tucatinib. I have no hemoglobin or iron I. My blood. Had to stop cancer treatment To deal with blood issues.
I will be holding you close as you navigate these new waters and hope they find a solution soon.
0 -
LoriCA and leftfootforward, I’m sorry hear of your troubles on Kadcyla. I’m praying your doctors have wisdom in how best to proceed with your treatment. I finished radiation but I’m not back on Kadcyla yet. Your experience makes me even more concerned about going back to Kadcyla next month. Thanks for sharing.
When I was on Kadcyla I had fever and headaches. My QoL was awful. I dread going back to it but I also wonder whether not taking chemo will mean a faster spread of the cancer. Ugh. Like everyone else,I want to live and live well.
0 -
Dear Lori, I was away for a while but am so so sorry for what has happened to you. You are the toughest person I know... cannot even imagine going through everything what you got through.Hopefully the brain bleeding issue can be fixed and a way to continue Kadcyla could be found:/ With all my heart, Saulius
0 -
update- they are saying my anemia was caused by a delayed blood transfusion reaction. Do not die to the meds. I am bsck on both now and seemingly doing well. Will have blood counts done later this week or early next.
I f Er ly s as o crappy due to s as rmiss as that I’ll take the side effects of kadcyla snd tucatinib for now. Funny how ones perspective changes even after 10 years of continuous treatment.
0 -
Thank you all. This is the end of Kadcyla for me Saulius. Brain hemorrhaging and hemorrhagic stroke are known side effects even if they are rare, and my bleeding is likely worse because of the polycythemia that I developed after bone marrow involvement. I can't continue to have a stroke after every infusion and there's nothing that can be done to prevent it. Besides, the cancer still spread to my bone marrow and thyroid, it was just spreading slower than it was before. Will be meeting with my MO this week to discuss my options, likely DS-8201 (Enhertu). Scary that I've been in this game less than 3 years and I'm already moving to a drug that was just approved a few months ago because nothing has been able to stop it. It's either that or back to the good ol' Herceptin+chemo combo. My last infusion was 7 weeks ago so I need to get back on some kind of treatment quickly.
Had CT angiogram and MR venogram of my brain last week to see if I'll need surgery to repair any damage to my veins/arteries.
0 -
LoriCA , my heart is sad that you have had these scary things happen. (((Hugs))) I too am no longer taking Kadcyla. I didn't have the brain/stroke issue, but the headaches were awful and I asked to just take Herceptin for a while to see how things go. My MO agreed to have me do this last week. We'll see whether I get progression or not. I'm only 1 year from diagnosis so I don't have much experience with MBC yet.
I know each person's biology is different, but is Enhertu the only chemo option? I think my MO mentioned Nerlyx (neratinib) or Tukysa (tucatinib) as another options for me if I get progression. I'm relatively new to how treatment plans go for HER2+ MBC, but I also wonder if you could take Abraxane. Doctors don't like to prescribe it at first because it is more expensive than Taxotere/Carboplatin, but maybe you would be a good candidate for it.
Abraxane did a very good job of killing my bone met, all the cancer in my left breast, left lymph nodes, and it almost got rid of the ILC and LCIS in my right breast and right lymph nodes. The side effects were not nearly as bad as TCHP or even Kadcyla for me. Abraxane doesn't have the solvent that is in the other Taxol drugs. This is what makes it easier for people to tolerate, but it also makes it cost more.
I wish you the best with your MO visit and upcoming test results.
0 -
neratinib is much harder on people ( lots of diarrhea). I just started tucatinib as all other drugs had not slowed or prevented me from growing small Mets in my brain. I was on neratinib as well previously.
You have lots of options left.
0 -
Dear LoriCA... uhh... I am so sorry. We all really are sad when anyone of us suffer. If something, I am really thrilled for Enhertu, although I know we all would better be not switching drugs. Here's a forum on Enhertu, I am sure a person of your caliber already knows it but there are ladies who use it and are pretty happy with it: https://community.breastcancer.org/forum/8/topics/874848?page=3 Tucatinib/Capecitabine combo could also be very helpful and pretty tolerable. Lot's of embraces, Saulius
0 -
Hugs, LoriCa. Shame it has taken so many days to figure out the reason for headache. Wishing you easier time on the next drug.
0 -
Hello everyone. I am wondering if anyone can share their experience regarding liver damage from TDM1?
Thank you.
0 -
my enzymes are going up. We are watching them. So far no liver damage but we are watching.
0 -
Hi!
I'm propably starting Kadcyla next month or so after I got progression during Herceptin + Perjeta. My docetaxel infusions were finished in January and in April everything was still fine (little shrinkage of mets and primal tumor) but now in August little progression. So Herceptin +Perjeta didn't work for me for even 6 months.. I'm so sad because I was of course hoping for better results and I have read this work for so many others. And I was feeling so fine during this treatment so little scared what comes up with Kadcyla.
My question is: has anyone returned to Herceptin + Perjeta after Kadcyla? Or is there another "milder" option if Kadcyla seems hard to tolerate?
My onc told me that there is no going back to Herceptin + Perjeta and I should stay on Kadcyla as long as it works. But if I have understood correctly some have been on Kadcyla, then something else and then Kadcyla again. It can be I'm mistaken also. 😊
0 -
My liver enzymes increased too, but apparently didn't get dangerously high.
I'm moving on to Enhertu as soon as my insurance company approves. I didn't get six months before there was progression to my bone marrow and thyroid, plus that whole brain bleed issue. I've been off treatment for two months while they were trying to decide how to proceed.
minnuli we tried twice to see if I could stay stable on H&P, but I don't respond to it either. Very disappointing because it's not hard to tolerate, good quality of life, and I'm jealous of women who gets years on it. My MO describes it as a "maintenance drug", as in it's not expected to shrink tumors like a chemo, but to keep everything stable. Enhertu became the recommended line after Kadcyla earlier this year when it was approved. The other things we have tried is Herceptin plus a chemo drug. My MO warned me that everything from here on out is going to be more toxic. But if I were ever to get NEAD I would ask to try H&P again.
0 -
minnuli, I also progressed on HP after a short time - maybe around 6 months or even less. I found Kadcyla to be quite manageable though I know some others have had various difficulties. I was able to extend my time on Kadcyla to around 2 years by having local treatment to the lesions that progressed. Twice I had SBRT to different spots - spine and muscle. Might local treatments be an option for you? Eventually, I had to move on from Kadcyla due to progression and liver toxicity. I moved back on to Herceptin but this time with Keytruda (immunotherapy) - it’s not necessarily a move that will work for everybody but perhaps if you have genomic testing done - if you haven’t already- your MO will find addioptions. I’ve been NEAD now for over a year on this combo but for 4 years before that, I felt like there was progression every few months so I can definitely relate to how you’re feeling.
0 -
Thanks everyone! It sure helps to hear that there are options.
I have a met in adrenal gland that didn't respond to treatments as well as others (my lungs and liver cleared out with docetaxel, my bone mets were shrinking). So after Docetaxel I had the primal tumor and adrenal gland met still left and those are the ones that now got progression during H+P.
I must ask about local treatment as well! I was de novo when diagnosed so I have not been operated. I think that if we could get that primar tumor from the breast and that adrenal gland met taken care of, H+P might have worked for me. Of course I can't be sure (well heck, who can be sure of anything with this disease) but I truly believe that H+P could had had better results if I had less tumour mass when starting it.
We will see what my doctor says when I see her. I must ask about my choises. I googled that Enhertu is not approved in Finland yet but Keytruda is. Will look more info about this.
Does anyone have experienced met in adrenal gland? I must search if there is another thread for that also..
Have a nice weekend you all!
0 -
I am going to start Kadcyla next week. I was wondering what side effects I can expect?
Thanks for your help. I hope everyone has a good weekend.
0 -
I am also starting kadcyla intravenously next week - I used to be on herceptin - I would love to hear feedback
0 -
bloody noses for me, fatigue, done digestive issues swinging high ways. I usually feel the effects 2 days after treatment not the day of.
It was very doable.
0 -
how are you doing, LoriCa?
0 -
wow- my last treatment of kadcyla really kicked my ass. I got a fever 2 days later that lasted ffir two days finally day 5 post treatment I am feeling human again. anyonevelse have this problem? I had treatment on Tuesday and was fine until Thursday night/Friday morning.
I did receive anither drug as well for anemia so it could have been that. I wanted to ask those of you on kadcyla I’d any of you get flu li my e sumptoms days after treatment.0 -
Ive never had flu like symptoms from kadcyla. I usually get my infusion on Tuesdays as well and experience fatigue and nausea. I do get a hot flash now and then but doesn't last long. Im doing pretty good by Thursday so it could be the anemia drug. Prayers to all of us fighting!!!
0 -
AnotherOne I'm so sorry for the late reply - I moved to a different state in late October and life has been crazy hectic for me. My husband got a good job offer in late August and he jumped on it, leaving me behind to sell the house while I was having some serious problems with side effects.
I had to stop Kadcyla for a few reasons. I also would get high fevers after an infusion and my onc suspected a cytokine response due to other symptoms I was also experiencing, including spontaneous bleeding from petechiae I developed on my hands and forearms, and sometimes pouring from my nose. We thought we got that under control, then my brain started bleeding and I had at least one hemorrhagic stroke but likely 3-4. It kept happening like clockwork 5 days after infusion. The brain bleed caused a headache that was a million times worse than any migraine, I would stumble into walls just trying to get to the bathroom and I was out cold for 5-7 days at a time. It took them months to figure out what was going on with scans and tests. Thankfully I had been getting brain MRIs every year and they could see the damage. Onc wasn't ready to blame it on the Kadcyla, but since it always happened 5 days after an infusion I wasn't about to risk it anymore. I was supposed to get surgery to repair the damage but then this move came up all of a sudden and I just left. Will ask for another brain scan soon so we can see if it continued to heal on its own or if it's something I still need to worry about.
I've been on Enhertu since late September, with a 2.5 month break due to insurance changes when I moved. Just started up again last month. I love my new care team, they have the side effects from Enhertu under control and I'm doing much better than I had been. I feel like they have a better sense of urgency about side effects and symptoms, so I'm really pleased with the change.
I wish everyone the best of luck with Kadcyla. I'm sorry it didn't work out so well for me because I had high hopes. I know some people who got years on it (in trial) and it's a good drug when it works. Other than my personal problems with it, it didn't seem to be hard to tolerate. I really thought I would be on it for a good while until the stupid brain bleeds started.
0 -
glad to hear you are doing ok now, LoriCa. Disappointing you had so bad times on Kadcyla. Going to keep an eye on enhertu thread then fir info about you !
0 -
I am starting Kadcyla after 6 months on thp and a year on hp. A bit suspicious there is not much activity on this thread! Or is it the good thing?🤔
0 -
I’m off Kadcyla and will move to Enhertu next. The good news it hasn’t spread to any organs. Just in the bones. It was relatively easy to tolerate. 2 days of flu feeling and some fatigue and low wbc. I had a good run with it. I’ve been on it for a year. I hope you continue to do well, AnotherOne
0 -
Thank you , Maire !
I remember you from herceptin thread I believe.
Wishing you a good long run on enhertu x
0 -
I am in the beginning stages of being enrolled in the Her2Climb trial which is Kadcyla and Tucatinib. I will definitely get Kadcyla but the Tucatinib could be the placebo. I have been on H&P since November 2018 and it has obviously failed since my recent PET came back with numerous bone mets and one met on my lung. I have had just a couple mets on my T11 and L1 but now it is all over. Was just looking at the side effects of Kadcyla. I have noticed it is all over the place with bad side effects to some don't have many.
0 -
Hi Txsurvivor13
Im on Kadcyla and have been since 1/2019. My side effects aren't too bad. Nauseous for a few days, no appetite and of course tired. Everyone reacts differently though. I go for my PET scan Friday after fighting with my insurance company. All these scans scare the crap out of me. Still praying for all of us!
0 -
Glad to hear your side effects are minimal. I hope you have a good scan!! I have to have a CT and Echo before I start treatment and start the trial. That is scheduled for the 21st.
0
