Who's on Kadcyla/TDM1?
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Good luck Peg. I went back to Herceptin and Faslodex but the nodes came back. So I am on this stuff forever. Got Emetrol for nausea but it is expensive!
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I had my left nostril cauterized today to hopefully stop the bleeding. I haven't had bleeding lately because I have found that the worst offender is when I wash my face and put any pressure on the left side of my nose.
I also have to try to avoid blowing my nose if possible. But the Kadcyla does cause a lot of "bloody snots".
My nausea is finally a little better, but I get more Kadcyla in a few days.
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Hi Denny.....Whaat..no more bloody snots?? I am due an NT visit next week. Was to have gone this week but cancelled...yup abloody nose. Kadcyla and other drying agents keep the tissues desert dry for two weeks after admin. I give up! Brain MRI tomorrow.....fingers crossed....will report. Have a much better week! Peg
W
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Prayers for you Peg!
My dr told me I would have a black mark under the left nostril from the chemicals used for cauterization. Guess the mark will be there for 4-5 days until new skin appears.
So that means that the chemicals burned my skin. If you get cauterized, I would ask if you could get something there to protect your skin...like a shield or Vaseline.
Meanwhile I look like half of a Charlie Chaplin. Using Dermablend to try to cover the black...geesh.....
The bloody snots will continue I guess, but I can tolerate those better than a flowing bloody nose.
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Denny123-so sorry to hear about your nose. I sleep at night with a cool mist vaporizer which has helped me. My main SE is constipation and fatigue. I have also experienced nausea but can control well with zofran. Hope your week gets better. We are experiencing a warm trend in Kentucky for next 3 days. Today the high is 73. I enjoyed sitting in the sun.
Prayers coming your way Peg for good results on brain MRI❤️
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wleeky,
Thanks. I guess the fatigue will be forever..
I got the constipation figured out. Every night I take a dose of Miralax. My health ins covers the generic which is a lot cheaper than OTC Miralax.
And 2 stool softener pills...one at 250 mg and one at 100 mg.
Those keep me "going". I can add or reduce the softeners as needed.
Zofran doesn't really help my nausea anymore.
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Hi,
I'm new to this forum, but not to stage IV. My first post didn't show up, and I'm still trying to figure out adding my diagnosis and treatments, so forgive if things are jumbled.
I'm very interested in this thread as I'm fairly new to Kadcyla. I'm having my 4th infusion this Fri. and I sure hope it's working. This has been the easiest of any chemo I've had so far...knock wood.
Having PET the end of this month to see if newest recurrence to peri-rectal area is shrinking.
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Sunny -- we just wanted to send you a warm welcome to the thread and the Community. You'll find this space very supportive and full of knowledge. Thanks for joining and posting -- please keep us posted on how you do on Kadcyla!
--The Mods
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Welcome Sunny,
I am on my 4th treatment of Kadcyla/TDM1 and find SE's to be minimal for me. Mostly fatigue and constipation. Denny123 gave me some good tips which I am trying. I had my bone scan after #3 and it was found no progression so I will stay on this until it stops working. Hope the same goes for you🙏. I have been on this site since Dec. 2012 and the ladies are wonderful, always so informative, kind and compassionate. Coming here has been the best decision I have ever made. So good to read and talk with someone who has been thru the same thing. Keep us posted on your results
Hugs,
Wanda
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Hi Sunny,
Welcome to this thread and I hope that Kadcyla is very easy for you. Please keep us posted! We care!
Denise
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Hi Denny ...or should I say....CharlieChaplin double. I am lining up for my cautery tx next week. Last night had epistaxis for3 hrs... Pressure and intermittent Afrin spray did not touch the gusher. Only contd pressure made a difference. The extreme drying drugs need lots of hydration orally and oh a little cautery courtesy of your local NT Doctor. These are very successful drugs so hang in there with attempts to alleviate se..s. If we share "what seems to work". Thanks Denny for your helpful info. I owe you a double chocolate shake some day @ upmc. Peg
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Thanks for the warm welcome everyone!
Will let you all know what my first scans reveal. So far, this is a pretty easy chemo. I think the psycological aspect of not losing one's hair is a big part of it too. After nearly 20 years of this BC odyssey, I need all the help I can get in the "looks" dept. LOL!
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Hi Denny, Well got my epistaxis taken care of per my NT doc.
Also
The cautery was not a big deal... Some stubborn areas that survived early NT surgery to the pituitary. Gone! Yay................ Also good news....current MRI. Reads. "Stable". And TMs at 59......I'll take it. I hope that you are continuing to do well also! All the best, Peg in Pgh......
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Sunny-I hope that Kadcyla continues to be easy for you. You have gon through a lot more than I have and I hope that things get easier for you now.
Peg-glad all worked out for you!!! I have just had one nose bleed so far. My bad for washing my face and scrubbing the left side of my nose more than a tad.
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Hi, Julie;
I'm having eye allergy issues (spring is here, though, now) and notice that, suddenly, my vision has gotten worse than I noticed previously (I just had my 4th hit of Kadcyla 8 days ago). But I am long overdue for an eye exam, had been putting it off until I was done Taxotere (December just 3 months ago), thinking that was the heaviest duty Chemo I would be on. The Kadcyla has that emtansine component (linked to the Herceptin) and that might not be so good for your eyesight, either; it's supposed to be such a strong cytotoxic that it is now used just in the TDM1 conjugate. I am going to get an eye exam this Friday and hope that the Kadcyla isn't going to deteriorate my eyesight much. I am desperate to see properly. I'm in progressives, and that's complicated enough.
I have dry eye issues anyhow, and now the dry mouth that comes with Kadcyla.
Here's one article that does mention blurred vision (way down in SE's section under "Eye Problems") and conjunctivitis. http://www.macmillan.org.uk/Cancerinformation/Canc...
Miriam
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Miriam,
I was on Kadcyla for 9 months then into remission for a bit. Now back on Kadcyla for another 9 months. My vision is actually getting better.
I have always been near-sighted, and now my far vision is better.
Hope your exam turns out okay!
Denise
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Hi, Denise, Julie, Peg, Wanda, Sunny,
Really good news just now: I remembered to log in to Fox Chase's portal and check my TM's. They are down to 34, which is great.
I've been trying to read everyone's posts and, while I have a few SE's (peripheral neuropathy, drippy nose, stiff joints, fatigue), the nosebleeds haven't been an issue. Reading that you girls (Denise & Peg) have had to have a cauterization is a bit frightening. Would you attribute that to being on the Kadcyla for a long time? I've only had 4 TX's, so I'm still a newbie.
But, it appears that I'll be on this as long as my body can tolerate it, so I want to be prepared in the event any of that happens.
I have rather poor balance, though I haven't fallen yet. It's supposedly due to the CIPN (chemo induced peripheral neuropathy) damage to the soles of my feet and my MO agreed with me that trying yoga might help. I walk about 30 minutes a day which helps me sleep better, also helps my metabolism stay normal. See one of my walking companions, below. That's Bailey, and she's one of my best pet friends. My dear husband also walks with me, and that's a help. But I think I need a bit more than that.
Thanks so much for all the encouragement you put up here, ladies. You are all a blessing, I can't tell you how much. (hugs and prayers, Miriam)
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Miriam...what a precious fuzzy doggie! Love her!
The cauterization was no big deal. I would compare it to getting a novocaine shot from the dentist. And with the furnace on all winter, that just made things worse.
Now that it is spring, I think the bleeding will subside. I am just careful to not blow my nose a lot in spite of the running.
Yay for your TM's!!! I don't have neuropathy after 14 years of chemo, so I am lucky.
Keep us posted!
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does anyone experience joint, muscle and/or bone pain from Kadcyla? I've just finished my 14th does and the pain is worse this week. My platelets are also dropping each treatment from130-> 120-> now 105. I just want to finish my last 4 treatments and be done with it. My clinical trial nurse said they would delay the next infusion if I'm under 75kI. Also on Pergeta. Thanks for any advice.
Swissrn
Tami
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Swiss- my platelets drop but always rebound. The lowest they've gotten was just under 92, but even at that level, my gyn onc was perfectly fine with doing my oopherectomy. Mine always seem to rebound to 120 or so just before the next infusion. I do get some muscle and joint pain but it's typically short-lived and just a day or two after my infusion, sort of like what you get with the flu. Nothing like the pain I used to get from neulesta. Hopefully some of the other ladies will weigh in with what might've helped them. Hope your last four go smoothly and easily
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swiss-My whites always rebound by the time for my next tx. I get the aches and pains too, but 200mg of Motrin always helps.
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Miriam - like you I have had 4 treatments of Kadcyla. I have not had problems with my nose but my mouth and throat get extremely dry. My neuropathy has been minimal. Congrats on TM's mine were below normal and bone scan shows no progression. Yahhhh!
Swiss-My platelets are down to 142. I have noticed I bruise very easy. We visited our great grand babies for Easter ages 3, 19 months, 9 months and it looks like I have been in a fight small bruises on my arms but we had so much fun. Along with Denny I have aches and pains after treatment but ibuprofen works wonders for me. My potassium is low and I have added that to calcium I take everyday.
Hugs to everyone, Spring is on the way🌷
Beautiful dog😀 I have just adopted a rescue cat, she is very sweet. My 16 y/o rescue mix dog just gives her dirty looks. I also have 6 chickens who are ready to be put in their new coop.
Wanda
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Tami - I do have a bit of soreness/stiffness. Hips, fingers, knees mostly, though I had been attributing those to arthritis. But during the last treatment or so, I had come to wonder if it's just from the Kadcyla. I don't take anything for it, just flex those areas & it settles out. Walking helps a lot with the hips and knees, so perhaps it's not really from the Kadcyla. That is one of the SE's, though.
Wanda - same here on dry mouth. I have had dry eyes previously, though, so can't yet blame the Kadcyla. BTW, so far, it's a wonderful drug; I want to keep emphasizing that along with identifying its SE's. I'm grateful and can manage these SE's for now.
Yes, my Bailey is a cute thing, though there's a lot of fur to clean up here (she's a Golden Doodle, but not the non allergenic). She has a lot of poodle attitude in her, though, and it's taken a much firmer hand than had she been just a Golden Retriever. We had a Retriever previously, and she was very agreeable to most anything. But as she was a rescued dog, she was awfully docile unless around a groundhog.
Denny - I am glad for you to not have the neuropathy. It could be worse, I suppose. It's manageable, but a tiny bit worrisome.
Hugs to all of you, and keep up the good work. (my family, below)
Miriam
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Anyone have liver enzymes increase on Kadcyla? I have had out of range ALT and AST for almost 2 years, but things seem to have been increasing more over the past month. Though they are out of range, they aren't super high (still below 70) and everything else in the hepatic panel is normal, but I am very concerned. My doctor feels it is medication related and will retest in another week. I have to admit that I'm panicking.
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Yes, CJRT.
However, I've only been on Kadcyla since January 2016. Yesterday, I had my 5th infusion and my ALkaline phosphatase was 131, though it was 134 last time (normal range is 38-126). AST-SGOT was also a tad high, but infusion nurse said it wasn't high enough yet to worry. Since you use "70" as a reference point, I assume you're talking about just the AST's?
Maybe I need to do some reading on these But there is another support site with Kadcyla discussions about elevated liver enzymes. It is www.her2support.org. Be forewarned: Some of the SE's discussed there are a bit difficult to read. I think it's true that this is a drug that is a huge help, but the emtansine component is very toxic, so we may not all be able to sustain its effects forever
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Thanks so much for your response, Miriam. I was referring only to the ALT and AST being elevated for me. Thanks for sharing the other site, too. I haven't been to that one. On one hand, it's great to educate myself; on the other hand, I hate to scare myself with potential side effects that I've yet to experience. Best of luck with Kadcyla.
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I have been on Kadcyla for 2 years, but can't help with the liver enzymes. When my BC first spread, it was to my liver. So my enzymes are pretty messed up anyway.
Good luck!
Denise
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Nose bleed....Saturday night I made the horrible mistake of blowing my nose too hard and ended up in the ER. They couldn't stop it either, so I bled for about 2 1/2 hours.
Dr. finally put in a balloon packing. I saw my ENT dr on Monday and he took out the balloon and put in dissolvable gauze, which now looks like a big black booger hanging out of my nose.
I also got an infection in all of my gums and had to get a script for Bactrim.
My Kadcyla of today has been delayed for a week. I have a PET scan on May 4 and will see my onc May 6.
Can't sleep well since the good side of my nose is always clogged up.
whine whine
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Oh no, Denise!
I'm so sorry. Imagine not having the ER, though. Thankfully, there's a place to go when things get bad (my copay on the ER is $350 now, so I'm staying away). I noticed a bit more of a bloody nose myself yesterday.
Keep plugging away (no pun intended). I think this Kadcyla is good stuff, though I wouldn't mind not having the neuropathy. I'm very glad that you don't, since you've been through the wringer.
I'm glad we have each other to compare notes. And I'm awfully grateful that I have this cancer, and not some of my dear sweet relatives. I've been given multiple resources to bear it, so I'm very content. It's all good.
Hugs and prayers to you all.
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ugh so sorry Denny! The irony of your story is that I came back here to see what others are saying about their nosebleeds because I have had one every day for the last 8 days and couldn't get an ENT appointment until Monday morning. I had one this morning and just wound up with a blood clot in my throat (which I've never had) and am very freaked. My bloodwork this week was fine, so my oncologist feels it's an issue for the ENT and not related to my counts. I never had a nosebleed before Kadcyla. I know this is a minor inconvenience, but it's hard not to get scared or frustrated with one more thing to deal with. Hope you get some sleep and the gum issues heals quickly. Will be sending you positive thoughts for relieving PET resukts
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