Who's on Kadcyla/TDM1?
Comments
-
Congrats my dear Denise , i am thrilled your nodes are stable and hope the last one will stabilize as well. I am glad you are staying on Kacyla and Hope you stay on it for a long while. Hugs and plenty of them.
0 -
That sounds really positive Denise. So glad that you're able to stay on Kadcyla.
It seems to be working well for me too. My positive node now seems to have disappeared and the lesion in my lung is stable. A new are popped up in my clavicle on my latest CT, but on the follow up MRI it looks like osteonecrosis from my sternum surgery. I'm going with the MRI and staying on Kadcyla for at least another couple of rounds.
I hope everyone else on Kadcyla is doing well.
0 -
I've been on Kadcyla since late March, 2016. I feared it due to the chemo attached to it, but it is said to be more of a super Herceptin, hopefully only going to HER 2+ cells.
I'm happy that most of the tumors, even the bone tumors are stable or disappearing! No more liver tumors or nodes lighting up on the PET scan. No more brain tumors. I just have a few in the lungs although they too are stable.
For now Kadcyla is working for me, but I do have a rash on the back of my neck and serious neuropathy. I've found a cream that helps with it, along with pain meds I take at bedtime.
I'm back to working, and doing my best to live a stress free life. I hope this medicine works because my oncologist said after this my only options is studies. I would love to be on the new immunotherapy taking your T cells to supersize them to kill cancer cells. This I would like.
I read, although I could be wrong, that Kadcyla medium survival is 7 months, but seems some of you are okay after 2 years. Just wondering how long it works before it stops working and if it stops, then why?
0 -
I will add that my platelets and white/red blood counts are low since being on Kadcyla. They have dropped to about 85 or so. I bruise easily and I'm also on blood thinners due to a blood clot caused by the port.
I have had kadcyla infusions every week over 2 hours due to being hyper sensitive to Herceptin/chemo. I almost had heart failure when first put on Herceptin. I have reactions to most meds given to me.
If my platelets continue to drop then my oncologist will put me on low dose Kadcyla every other week thus only getting half of what most get per month, and then we will trust that will be enough for me.
0 -
Hindsfeet-if the Kadcyla stops working, it is because the cancer cells have outsmarted the chemo. That is very common.
My back spasms have been gone for 3 whole weeks since I quit Faslodex butt shots. I still have a lot of aches in that left side back muscle, but not the spasms.
My nose bleeds on Kadcyla are making me crazy-just starts for no reason. 5 days in a row now. Even when I wake up during the night, and laying there quietly, it starts to bleed. But at least I can get it stopped in about 15 minutes, and no more trips to the ER for packing.
Just read on BC.mets site about a new chemo pill....Tucatinib, 2 pills daily currently in a Phase 2 clinical trail. Seems to be much like Tykerb, but easier.
It can be given with Herceptin or Kadcyla. Good thing to keep in mind for me.
((((Hugs to all))))
Denise
0 -
I'm on Kadcyla every 3 weeks along with another drug in a trial. So far I've tolerated very well. Since they monitor very closely in the trial I know around day 5 after getting the Kadcyla my platelets drop (53k). But, in a few days they are back up in range. I'm not allowed to get the trial drug, which are pills you take for 14 days until the platelets reach 75k. So far so good. When the platelets are low I am achy and feel like I have a slight flu. It has only lasted a day. Certainly better than standard chemo. I get my first scans next week so praying it is working.
0 -
Denny, you are me both with the stupid nosebleeds! I know it is a minor side effect to complain about, but I can't find any real pattern to mine either. I've gotten them when my platelets were almost normal, and then not gotten them when my platelets fell below 100. It's nerve-racking to wonder when it's just going to start out of the blue. I was at something for my daughter, and all of a sudden my nose just started bleeding so quickly that it was all over my shirt. Luckily I had a change of clothes in the car. I've changed some of my exercise routine, and I'm now very careful to never blow my nose, despite always having a runny nose. There were two weeks straight that I got a nosebleed that wouldn't stop within 10 or 15 minutes. I had it cauterized, only to start getting nosebleeds again later the same day.
0 -
CJRT-Hi booger buddy!
I am celebrating that I haven't had a nose bleed for 2 1/2 days. Last month I was okay. Seems to start 2 weeks after my Kadcyla tx.
It is just my left side, although the right side bleeds a tiny bit, but never flows. I dream about being able to blow my nose and dread if I ever get a cold.
Do you take Motrin or any similar med? I don't.
How long have you been on Kadcyla?
0 -
Ha! Denny, my booger buddy. So funny!! I'm just like you-- only one nostril!! Always the right side. Together we can have a functioning nose!! My ENT says that I have a deviated septum and that forces more air out of the one side. He said it's a medication issue and not a platelet issue. I live on saline nasal gel and literally never blow my nose. I haven't taken anything with ibuprofen since my original cancer diagnosis over five years ago, so it's not anything related to that for me either. I've been on kadcyla for 3.5 years, and my first nosebleed was 6 months in. Originally I'd get them for 2-3 days every other cycle or so and never was severe enough for the ENT to do anything. About six months ago I started getting them nearly daily, and I then have had two cauterizations. I've had a couple stretches of 2-3 weeks without one, but I literally don't go anywhere without tissues and some Afrin (which ENT said would stop one quickly if I can't get it to stop). What have your doctors said about yours
0 -
CJRT, Thanks BB! I never heard about using Afrin and discussed it with my nurse today as I was getting my Kadcyla. And she agreed that it does make sense since it would constrict the nostrils.
She wants me to let her know how it works since so many patients get nose bleeds on other chemos. But they sure aren't like ours!
I have the Equate brand of Generic Afrin, and will definitely keep it in mind.
What is funny is that I have a store on eBay and participate on a sellers discussion board and I have been whining about my bleeds.
One of the gals on that board, who doesn't get chemo, has had nosebleeds for years and an ER resident told her the same thing about Afrin.
I had sinus surgery for a deviated septum on my left side about 3 years ago. I had a cauterization about a year ago, and now with the worse bleeding, my ENT said that I don't need any more cauterizations.
So tell me, does your left eye water then? There are others in this thread who also have (like me), a very watery right eye and bleeding left nostril.
No doctor can figure out that one!
Booger Buddies Unite!
0 -
Hey Denny (AKA my BB)- The only thing with the Afrin was that I was warned not to use it too much, as it could then exacerbate the problem by excessive drying. My ENT said to do a squirt or two and then pinch off the nostril for 5-10 minutes. He also said some people prefer to squirt it on a cotton ball and put the cotton ball into the end of the nostril and pinch onto the cotton ball. I've only done it twice and it seemed to work very quickly for me. Last night I had a light trickle, but it stopped without pressure. The watery eye thing is so weird to me! I literally have a weird thing going on with my left eye. It's more that it feels like a gravely sensation and frequently but I have never thought to describe it as watery. It's always the LEFT eye! My eye doctor says that it's chronic dry eye and some corneal abrasion that takes place when the eye gets too irritated from the dryness. My right eye always seems fine. About 6 weeks ago I gave in and finally started Restasis drops, which are very expensive, but I had gone through 2 rounds of steroid drops for the inflammation. I never made any connection to the nosebleeds. So strange!
0 -
I've been on kadcyla since 2013 and it has worked well for me but I do have neuropathy in hands and left foot, bloody nose occasionally and potassium deficiency. I have had stage 4 Breast Cancer that moved to my left lung. Side effects didn't start til this past 6 mos to year.
0 -
Just wanted to introduce myself to everyone in the T-DM1 group. Just got results of my PET scan and there's been progression on Herceptin and Perjeta. MO tells me I will start on T-DM1, so I will be joining this group.
0 -
Welcome pwilmarth! I sure hope that Kadcyla works well for you!
bmalady-I am on potassium pills, and am just under the desired level. So my onc told me to only take my Hydrochlorothiacide 3 times a week. He says that could deplete the potssium.
I will get bloodwork next week to see if that helped.
CJRT-my watery RIGHT eye just tears constantly, with no gravely feeling. The Afrin didn't seem to help, but we will see again soon.
I always get the bleeding 2 weeks after my tx, and it is starting already. But it is a watery trickle so far. I will try the cotton ball thing if it won't stop.
I had been on Restasis for a few years before I started the Kadcyla. Lucky for me, Medicaid picks up most of the cost. I am not sure if it makes a difference.
0 -
Denny, I used to get nosebleeds on Taxotere,
And I have prolific watering of my right eye nearly every day. Strange.
0 -
CJRT- it worked! Got the usual nosebleed about 2 weeks after my previous tx. Did the cotton ball thing and it also loosened my month-old scab from the top inside, and just a little bleeding since that.
I was so afraid that losing that scab would start the copious flow again, but so far I am okay. I do notice, though, that when I bend over, I bleed a little.
pwilmarth-I had nosebleeds with Taxotere too, but the bleeding from Kadcyla is much worse. Hopefully you won't have this problem!
Read over our posts-I have found that I can NOT blow my nose at all since that irritates the nasal lining. I had bleeding so bad in April that I ended up going via ambulance to the ER. But I was blowing my nose then....nevermore for me.
Oddly enough, sneezing doesn't make it worse.
0 -
Denny- Great news!! I'm with you on the no nose blowing thing. Your April bleed sounds terrifying. I feel like I am uneasy in certain situations thinking I might get one in a place where it would be difficult to address and never go anywhere without tissues. I have focused on not blowing at all... Like it even exhaling strongly if I filled at all stuffy. I've also been using the saline nasal gel at least 3 times a day and more frequently when I feel like I am stuffier or might have a scab. Fingers crossed but I went the last two cycles without!Try more frequent saline gel... Truly has made a difference for me.
0 -
I really love the insights and details given on this forum. I will be on Kadcyla from next week and i have known a lot reading about this from here .Thank you all so much Brookyln et al. Can someone send me real photos of this Kadcycla so that i can see know what it looks like
Thanks
Shiller
0 -
Shiller, welcome to the Breastcancer.org Community. You may want to simply look online at their website for the details: Kadcyla. Thinking of you!
0 -
CJRT-latest is that my nose has been bleeding a lot in the morning since I got my Kadcyla this past Friday. So I squirted generic Afrin on a Q-Tip and swabbed the inside nasal lining.
It really did slow the bleeding, which really wasn't heavy, but a steady drip drip...I am sure you know what I mean.
My ENT told me to use a cool-mist humidifier, which I do use every night. Not sure if it helps, but more likely it will when my furnace starts running more often.
I am in PA and cold weather is approaching!
0 -
Hello to all.
I am going into my 3rd infusion with Kadcyla next week. I havent had any bad SE's. It was during a PET/CT scan that 2 nodules were found in my lungs a 5 mm in upper and 10 mm in lower. So I am Praying Kadcyla works for me. My question is are you ladies seeing that you are stable and or did your nodules shrink or even the BEST ... did your nodules disappear while on Kadcyla? If they were to disappear... can we get off of Kadcyla?
I am ER/PR- Her+
Thank you for any replies
0 -
Hi DL3,
Those are really tiny! (So yay for you!)
I was on Kadcyla for about 18 months for 3 mediastinal nodes. Then went into remission and was off Kadcyla for 9 months, and only on Herceptin.
However, they did come back for me and I now have 8 nodes active.
So it is hit and miss, actually. I will now be on Kadcyla for life, unless it fails. 7 of my nodes are stable, with one being more active with a higher SUV.
Good luck!
0 -
Thank you so much for your reply Denny123 I wish you the the best .
when I was having my DIEP surgery (a year after my mastectomy) my PS found one teeny nodule in breast scar line tissue... nodule came back as cancer.... so .... My Onc asked me if I wanted at PET/CT scan he said some dont want to know others do, I said yes I need to know. the PET/CT was scheduled and the 2 small 5mm & 10mm lung nodules found. I am grateful my PS found that nodule in breast during DIEP surgery as it concerns me where I could be in a few months or year from now with growth of the lung nodules is scary .
0 -
Denny- sorry you are experiencing the annoyance but hopefully you're staying ahead of any major bleeds. I'll have to get one of those cool mist humidifiers. I significantly increased the application of the saline gel to about 4 times a day instead of twice and have been on (knock on wood) the longest stretch of no significant nosebleeds that I've had in a year. Don't know if it's a a causarive relationship or just coincidental, but I'm not not rocking the boat. 😉 Hope you're feeling good otherwise. I'm just jealous about colder weather... we just have variations of warm in Florida. We traveled through PA this summer!
DL3- I was told I'd be on active treatment indefinitely, regardless of clean scans and would remain on kadcyla until treatment failed or my body stopped tolerating it. Hope Kadcyla is effective and easily manageable for you!
0 -
Hi CJRT, Thank you for reply, how long have you been on Kadcyla?
0 -
DL3 - I've been on it for 3 and a half years
0 -
Thank you for reply CJRT .... that is awesome!
0 -
how often do you ladies on Kadcyla get CT or PET/CT scans? my Onc will order mine every 3 months.
0 -
I have been on Kadcyla for 2 years with a 9 month break for temporary remission.
My PET scans have been every 3 months, but this time, I see my onc at the 3 month time, and he will order a scan then.
So maybe he is going for 4 months.
At 3 months, he did ask me if my insurance company was balking at the frequency, which it didn't as far as I know.
0 -
I started with about every three months and now my MO is stretching it out to about five months
0
