Who's on Kadcyla/TDM1?
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Denny- I was reading back through and have a similar experience... 6 of my nosebleeds were right after washing my face! I had even used cold water thinking it was the heat that was the issue
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Thanks Miriam-be careful with that neoropathy.
CJRT- I have the clots too. I can only hold off so long before blowing my nose but this time that is what started it.
I have never had the clots before, either. So I blame Kadcyla.
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CJRT-yes most of mine were from pressing that side of my nose. I always used to scrub my face hard, and had to learn not to do that on the left side.
I had 2 areas cauterized 5 weeks ago. I thought the ENT would cauterize again, but I guess he didn't have to. Now I have to worry about what will happen when this darned ugly gauze comes out.
By the way-my platelets and bloodwork are fine.
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Hello my friend, i am so sorry for your continous problem for the nose bleed, i hope i will lessen with time.
Hoping you feel better on the gum issue too. My prayers will be with you on may 4th for good results on your PET. I will check on you again. Meanwhile, take care of you and be well my dear Denise.
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Update. I am now 5 days sober from blowing my nose. It is running and I am just dabbing. But my chemo nurses and PCP, whom I saw today.....all think my problem was the fact that I was taking a few Motrin 200's daily for a bad backache.
Even my ENT said I had a bleeding problem, not a nose problem.
I did have a mouth gum infection from the packing, etc. So self prescribed that and my PCP sent a script for Bactrim. So that sure helped.
When I see my onc on May 6, I will ask to stay on Kadcyla.
Meanwhile.....is anyone losing their toenails? The big one on my left foot is getting loose. darn it.
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Good to know, Denny. I take a baby aspirin each day, and then an occasional Ibuprofen. Wouldn't have thought of all that, so will only use Ibuprofen when desperate.
Man, what a crazy business.
Mostly, am glad that you're staying with the Kadcyla.
Have some goofy toenails from Taxotere (growing in thickness instead of length), but not falling off. May 6th you might ask your Onc about that one, too. I'll try and look that up in the SE's.
Hang in there; you are a huge help to the rest of us!
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I had asked in the past about taking baby aspirin and got a resounding NO.
I just hurt my shoulder-----first time I mowed my lawn on Sunday with my lawn tractor. When I moved the lever to engage the blades, it felt like I ripped something. Arm hurt a lot for a few days, so I took Tylenol. (My son in law informed me that he will be doing my mowing from now on).
But I should avoid Tylenol because of the damage done to my liver when my BC spread there. I guess Tylenol is the lesser of the evils for me.
I had to have a toenail cut back halfway when I was on Taxotere, since it was loose and lifting. This time I got a black spot at the base of the nail and the nail is turning white halfway across and all of the way up.
But I have been on Kadcyla for for about 2 years now.
Since I hate shoes and wear sandals all summer long, I guess I will pretend that my toe is broken and wrap it in gauze when I leave the house.
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Update.... meant to post sooner!
Had my first PET scan at the end of March after 4 cycles of Kadcyla, and it's working! Tumor is barely visible now. Next scan is end of June, and will update.
So far the side effects are still not too bad. Mostly lots of fatigue for about 3 days, then I start to bounce back. I've had terrible neuropathy ever since my two go rounds with taxotere in 2001 and 2012, so am hoping that it does not progress on Kadcyla. I am such a klutz now, always dropping things and tripping if I'm not super careful!
Denny, I read in one of your posts that your were on Kadcyla for 9 months, then in remission for awhile, then back on Kadcyla.
Were you on any treatment during the time you were in remission? I was hoping that if my next scan shows no evidence of disease, that I might go back to just Herceptin, but my oncologist says no because I had progression while on it, and that it is no longer working. I don't know if I agree with that. The reason I'm questioning it is that I noticed in my records that my weight had dropped back in July of 2015, after a bad cold, and my dose of Herceptin was reduced. I continued to get the reduced dosage for the next 5-6 months, even though my weight came right back up, and even surpassed my original weight.
Just wondering if not receiving the optimum dose of Herceptin could have lead to recurrence. This is something that I keep dwelling on, and I shouldn't, but I have Kaiser insurance, and they are all about cutting costs!
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Sunny-Yay that it is working! Yes, I went back on Herceptin and they should have increased your dose with your weight. But 9 months on only Herceptin really allowed the tumors to come back and then some.
So an increased dose might not have helped anyway.
I will have a scan in 2 days, and see my onc on Friday. If I am blessed with a reduction or remission, I will stay on Kadcyla forever.
So far so good with my nose since I am not blowing it. It is running a lot and in a few days the bloody running will start.
I will not blow my nose....I will not blow my nose.
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Hello, everyone;
Like Sunny (congrats, Sunny!), I am also seeing great results with Kadcyla. Had a CT Scan (unlike Sunny, who had a PET Scan) on 4/26 and it said:
* (drumroll) "significant treatment response" * "Liver and lung metastasis are no longer or are barely discernible" (said "no longer" in one section and "barely" in another section of the report)
Still working the breast lump down...slowly...but it also reduced in size.
My Oncologist says I will stay on Kadcyla as long as my body permits. Yes, I've got more CIPN (chemo induced peripheral neuropathy), although it runs a "cycle", finally settling down some by the time 3 weeks has passed & it's time for another. Neurontin (Gabapentin) works decently well on that. Yes, I've got joint aches (hands mostly), drippy nose, some fatigue, etc., but I'm managing tolerably well.
Very excited. In fact, celebrated with a Sushi lunch last week (you're not supposed to eat sushi while on chemo, LOL!) since I love the stuff.
Girls, this may be a tough fight, but it's a blessing to have meds that work on these tumors...at least, until a better one comes along.
(Denny, Taxotere was tough on my toenails, too; they're still messed up)
Sunny, my Oncologist indicates that once these drugs stop working, you have to ramp up to the next one, and the first one is no longer effective, regardless of the dose. It's crazy. When our bodies are working optimally, we hardly notice and take it for granted. Now, it's good to "count your blessings" because it is a tremendous attitude help.
I thank God for the 5-1/2 years I've been given since being diagnosed Stage IV back in November 2010. They had little hope since my liver was so bad. And I was quite concerned when my Onc said the Taxotere wasn't really working any more (5 years on Taxanes, and they finally were no longer effective). But I'm liking the Kadcyla.
(now I'm thinking about that sushi again & it's going to be lunchtime soon, heh heh)
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Thanks for your reply Denny, and keeping my fingers crossed for you to have good scan results this week. I've not yet had bloody nose issues, and really hope I can dodge that bullet. I would be in such trouble, as I catch every cold my grand kids get, caring for them several days a week. Right now I'm fighting another cold, and blowing my nose constantly! I'm also blessed with chronic teary eyes and runny nose, from my Taxotere days, even when I'm not sick.
And Miriam, so glad to hear the Kadcyla is working well for you too! I will be 15 years stage IV in June, and this is definitely one of the easier treatments I've been on, although not as easy as the good old Herceptin was for so many years. I'm incredibly grateful for the years that I've been given though, and treat each and every day as a gift, not to be wasted.
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My scan results were not very good. The tumors were not measured but they weren't obviously bigger. But the SUV scores are higher in the mediastinal and hilar nodes.
The larynx is worse too. I will stay on Kadcyla for 3 more months, then get another PET scan.
Miriam-I am glad that you are doing well on it-hope it continues!
I am 3 weeks sober from blowing my nose (Hello, my name is Denise and I am addicted to blowing my nose when it gets snotty).
It runs a lot, but it is clear. So far, I have not had bloody mucous or the clots. So maybe when I was blowing because of the clear runniness, it was irritating my nostrils????
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My nose runs all the time! But it's not enough to blow it, so I'm constantly wiping my nose. I hope people aren't noticing!
Sorry your scan wasn't great, Denny. Not familiar with SUV score, will have to look that up.
My new issue is bad neuropathy. Started Saturday night (May 7th) in the soles of my feet and toes. Bad burning, too much discomfort to sleep. Called the Oncologist and they're upping the dosage of Neurontin (Gabbapentin). That helps, but it makes me awfully sleepy. I'm a bit frustrated, and unsure how much damage (permanent) this is doing. I've never had it in my feet, after all the years on Taxol and Taxotere. Maybe I had it very minimally, as my balance is messed up (my primary physician said that neuropathy caused that). Usually just a bit in the pinchers (thumb and forefinger).
Started taking my glutamine (10 grams, 3x per day) again, and added in B12 (5000 mcg). Hoping I can get a grip on this, as it's very discouraging.
Wow, what we do for our health!
I'm not going to let this get me down, though. I've been laying around this morning, falling asleep from all this Gabpentin. Getting up & taking a good walk with the fluffanutter (Bailey, the Golden Doodle) and maybe the sun will revive my spirits. It's not like me to get discouraged!
Love to all of you, and keep fighting!
Miriam (photo of my newest great nephew, Adam)
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Miriam-he is adorable!!!!
Sorry about your neoropathy.
I have gone about a month now without blowing my nose and I think the fact that I was blowing it when it just ran, was part of the problem. I only had bloody running for one day. Nothing like I have had otherwise.
So I was irritating the nasal lining and causing the bleeding, and the Motrin that I was taking for back and leg pain didn't help.
Hope the Kadcyla decides to work, while I slowly figure out how to deal with the SE's.
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Hi Ladies,
Denny, I'm bummed to hear your scan results weren't as good as hoped for, but hopefully next scan will be better. It seems like these newer Her2 targeted drugs don't have the staying power that we were hoping for, but they are all we've got for now, so we've got to hang in til the next drug in the pipeline becomes available. It's no fun being on this slippery slope, not to mention all the great SE's!
Sounds like you, Miriam and I should have bought stock in Kleenex!
And Miriam, I too am taking the gabapentin (at bed time, because of drowsiness) for neuropathy, along with L- glutamine and Alpha Lipoic Acid. Can't say that I am able to tell if they are working. I just started taking some B12 yesterday, but am having second thoughts, as I just read that taking too much can cause cancer growth. Yikes!
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Hi Ladies!
I'm so glad I found this board! Tomorrow I will have my first dose of Kadcyla/TDM1. Up until this point on my journey with BC, I have had no side effects (except losing my hair) to speak of from my treatments, so I am a little anxious about this new drug...afraid my luck is running out...(on no SE"s), I have so much planned for the summer! I don't have time to slow down!!! I have a trip planned with my daughter's family to Rivera Maya, Mexico in July. It's already paid for, plane tickets bought (non refundable). Do y'all think I will be able to go ??? I've been on Perjeta, Herceptin, and Anastrozole (added in Nov) since last August and have travelled around this country and Canada, been on 3 cruises, without any problems. My last Pet Scan showed some progression, so hence the Kadcyla. Have any of you been out of the country while taking this? I also have a trip planned next week to Gatlinburg for several days. My oncologist has always encouraged me to travel as much as possible, as long as I feel like it...I haven't let it slow me down yet!
Reading how well some of you have done with this is very encouraging, I'm just kinda freaking out not knowing how I will react to this new drug! I had a reaction to Taxotere with my initial round of chemo, but was able to tolerate it with double steroids and pre-meds. The potential liver problems with this new drug have me the most worried, and the potential heart damage too of course, but I already get echocardiograms done on a regular basis, so far so good with that.
Thanks so much for letting me vent my worries and frustrations, I'll let you know how I do with it.
Thsizit7
"it isn't your problems that define you, but how you react to them, and recover from them" PTL
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Ths-welcome and sorry that you had to join us.
I see no reason why you can't travel, and I seem to have more SE's than most ladies. My nurses think it is because I have been on chemo for 14 years.
My liver has some damage since my original mets were to my liver, but it has not gotten worse at all throughout 2 years of Kadcyla.
And my heart EF has also been around 60. I have been getting Echo's for 14 years.
Please keep us posted!
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Denny, thank you so much for your reply and words of encouragement. Knowing you have survived 14 years gives me so much hope!
You are a blessing to all of us who are fairly new to this BC world.
"Jesus Juice" is what I've been calling my chemo, so I'm praying that this Kadcyla will have Jesus mixed all up in it! He is the ultimate healer!
Thanks again
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THS-I have been on Kadcyla for almost 3 months. This was started after I had progression on taxotere, herceptin and perjeta. I have had two bones scans that show my disease is stable. My SE have been minimal with feeling tired, constipation and joint pain. I also had trouble with Taxotere and needed pre meds. I have done well on this new regimen and am pleased. Sorry you are here but so glad you found this site. The ladies are amazing so kind, helpful and knowledgeable. They got me thru some of my darkest hours.
Please keep us posted how you are doing😀
Wanda
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Well Ladies, I had my first infusion of Kadcyla today with no reaction PTL! It was just a long day because my clinic is 112 miles from my house, I had to see my Dr first, then they pushed it slow for 90 min, then had to wait 90 min for reaction time...strange that the reaction, if you have one, happens after the infusion!!!
Now if The "Jesus Juice" will smite those pesky cancer cells and I can get by with few SE I will be so thankful!🙏
I had a funny thing happen that I will share with you today. There was a colorful little man named Mr Peebles in the waiting room today. We had met him a couple of visits ago. He sells boiled peanuts out of his truck and he loves to talk...he is a little hard of hearing so he talks loud! My husband BG is full of mischief, so he and another gentleman sitting close by got Mr Peebles wound up, the whole waiting room was rolling in the floor laughing. A little later when Bobby was going to get ice chips for me, he ran into the other gentleman who said hey! Come to my car I have something for you...he handed him a handmade doll with a note pinned to it's hand. He said give the one with green hair to your wife and here is one for you too, it was a "Dammit Doll"😂😂😂 I will try to attach a picture that will explain.
I love how God sent these people to make us laugh when we really needed it! I will take this as a good sign!😎
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oops sorry the note is turned sideways!
Oh and can someone tell me how to edit my diagnosis? I tried to add my stage IV and it didn't take it!
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opps deleted by mistake. I don"t know what i'm doing wrong...I am trying to add my stage IV diagnosis and I can't seem to get it to take it. Any suggestions would be appreciated.
Thanks
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Hi Ladies, hope you all had a fabulous Memorial Day weekend! Qiestion...I have been getting Solar nails and pedicures while on Herceptin, Perjeta, anastrozole, but what about Kadcyla???
Is it safe? has anyone been getting them while taking this???
Well, I have had my first symptoms to speak of ever from my treatments (other than losing my hair)! Every afternoon around 5:00-6:00 o'clock, I get chills and An achy feeling all over, no fever at all! It's not bad, just annoying, makes me Feel tired and I don't have much appetite, but other than that I've done Fine so far! Anyone else had this?
Hope Everyone is feeling fine!
PTL🙏 He is so good😊
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ths-what a cute picture!!!!
I was on Kadcyla for 9 months, and I had darkening on my left big toenail and another of the nails. Was off Kadcyla for 9 months and now back on.
The left toenail is worse and will probably lift as it did when I was on Taxotere. So I really can't see getting your nails done since I was told by the chemo nurses to not even polish them while on Taxotere.
The nails need to breathe.
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Some of the initial SE's dissipated after a few treatments (super mild nausea one day for 10 minutes, first time I had a tiny bit of chills), so I think, Thsizit, these early SE's may calm down once your body says, "ok, I recognize this stuff and I can handle it".
Go on your trip. It is something to which to look forward.
My neuropathy is still a huge issue, so Onc dialed the dosage back by 20%. Can't miss a dose of the Gabapentin (I'm on the max dose of 3600 mg/day) or I get bad burning in my toes, my soles, all over the feet, even the top of my feet if my pant leg brushes against it. Bought a little TENS unit on Amazon & it helps quite a bit. The kids all have had this treatment when they injure muscles or ligaments in volleyball. Husband has mild (ideopathic) neuropathy so he borrows the TENS unit & it helps him as well. I highly recommend this for CIPN. What it does is interrupt the pain signal, so it causes those confused nerves to not message the brain the same way.
I'm hanging in there, trying not to complain (I think it's good to keep thinking of all the positives & there are many).
My b-i-l is a nurse and says the excess B12 flushes out of your system. My Onc agrees, so I'm on it.
Always glad to "stop by" and see what you all are doing.
Hugs,
Miriam
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Thanks Denny! I have decided not to get my nails done.☹️ I soaked the solar ones off today and my hubby said he will do my pedicures! He did them while I was on Taxotere and did a good job too😃I never had a problem of lifting or color changing of my nails while taking it. I did keep clear polish on my fingers and my "Cajun Shrimp" red on my toes! No one told me not too!😳
Curious, why did you quit taking Kadcyla after 9 months, was it having a negative effect? How long were you off of it? My Dr at MDA said I would be on it until it quit working, like the Perjeta and Herceptin. I was hoping P&J would work longer than 9 months!😏 I'm worried that I will go through my options too fast...
Thank you for answering, you are a huge inspiration to me!
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Ths--- I went into remission and opted to take a break from Kadcyla......wrong choice. I was off for 9 months and the nodes came back with a vengeance.
I did have some improvement with the first scan, but now the nodes all have higher SUV scores. So I have no idea what will happen next.
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Hello everyone,
My mother started Kadcyla a couple months ago after she had mets to the abdomen. She was having a lot of stomach pains and dyspepsia along with nausea for a month or so before the mets were discovered. She lost 15 pounds during that time.
The good news is that after two dosages, her symptoms improved almost 100%. She is able to eat, drink and digest normally. No more nausea, and only occasionally some light stomach discomfort. So we hope the meds are working. PET/CT to be done next week.
The bad news:
After her first dosage the platelets were fine, but after the second dosage they dropped way down to 10k. She was given a transfusion and according to the kadcyla rx info, the doc had her wait until she returned to above 75k to give the next dosage. Unfortunately, that meant that instead of getting her dosage 3 weeks later, she had to wait 6 weeks and they did a dose reduction.
After the dose reduction, she only dipped to 35k at 8-9 days (nadir) and we just checked today and she is still only at 40k. Next dose would be normally scheduled for this Saturday (3 weeks) but now we are trying to figure out what to do.
My mother is being treated overseas and she is one of the first there to get Kadcyla so the docs don't have a lot of experience with it so I'm trying to gather whatever info I can from here to help her.
I'm hoping someone in a similar situation could chime in on what they did and what their doc modified.
Should we:
1. Give another platelet transfusion (and perhaps give it each time?) until the number goes above 75k? Her doc currently doesn't want to give transfusions and said it should be allowed to rise on its own. Then again, this is his first patient who is on Kadcyla.
2. Wait until the count is 75k without administering any further platelet transfusions?
3. Do something else?
I really hope some Kadcyla patients are in a similar situation and can chime in.
Thanks so much in advance
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Hi toothfilla and welcome to Breastcancer.org!
We're sure you'll get lots of great answers soon from our ever-helpful members. We're thinking of your mom and sending positive thoughts your way!
Please don't hesitate if there's anything we can do to help while you navigate around our Community. Looking forward to hearing updates on your mom.
--The Mods
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