Who's on Kadcyla/TDM1?
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Thanks so much for the responses longtimesurvivor and Denny123.
Longtime survivor-I do trust my MO and team, will move forward. If I ever have a doubt will definitely seek a second opinion.
Denny123-so glad Kadcyla is working for you and SE were tolerable!
I will post and let you know of my SE's and progress
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Denny I did get nosebleeds - and generally had a sniffly nose too.
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Wleeky - I've been on Kadcyla for over 2.5 years and have maintained a good quality of life, thus far. WAY easier for me than my Carbo, Taxotere, and Herceptin combo. It's also rather predictable to me when I'll be feeling queasy and fatigued, so I scheduled my days accordingly. I hope that Kadcyla brings you good results and that the side effects are very manageable.
Denny - I've intermittently gotten nosebleeds as well, despite blood counts not being overly concerning (platelets dip at times but have never dropped below 100). I went to an ENT twice, who was not concerned. He blames it on Kadcyla. I also have a runny nose much of the time...like a water-type drip. He recommended Azyr (sp?) saline gel to prevent it and using an antibiotic ointment in my affected nostril (always same side) twice a day for 7 days when the nosebleeds flair up.
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CJRT
Thanks for the info! I will ask my chemo nurse tomorrow about the AZYR. As an antibiotic, do you mean like Bacitracin?
My onc thinks it is from something else since no other patients on Kadcyla get the nose bleeds. Forget if it is on the SE list.
But I always get SE's that no one else gets.
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Denny- Yes, antibiotic ointment like Bacitracin. I was prescribed Bactriban (Mupirocin). For me, this has really limited the frequency and duration. Nosebleeds are actually listed as side effects, though they are considered less common (10%-29%) according to what I found. http://chemocare.com/chemotherapy/drug-info/kadcyla.aspx I've had them sporadically for the past two years, starting about 6 months after starting Kadcyla. Mine are coming from the front part of the nose and consequently attributed more to dryness and capillaries close to the surface, according to my ENT. I actually went to the ENT because I freaked out with the first nosebleed, since I had never had them in the past. He's not as familiar with Kadcyla but had said many patients report chronic runny nose with Herceptin, so it stands to reason patients might get that with Kadcyla, too. He said the chemo agent in Kadcyla might further dry things out, which is why he suggested the saline gel for prevention and the antibiotic ointment for when it is particularly inflamed.
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Just realized I spelled the name of the saline gel wrong. It's actually AYR. The ENT just said gel products are more effective than the sprays for dryness. I don't know that there is anything special about brand. He just gave me samples.
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CJRT Thanks so much! Just called my ins and it is covered, which seldom happens lately.
It is weird how my nose will just suddenly start to bleed, even when I have not blown my nose....versus the times when I really do have a lot of bloody discharge in the mornings...sometimes.
Nothing predictable for sure.
I will ask my chemo nurse tomorrow for a prescription.
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Denny123- Have had some nose bleeds with Kadcyla also, but only one weekend. My platelets were above low, but not by much. Only happened that one time; since I have Kadcyla weekly I was hoping that that would not continue! So far so good.
My latest SE is little fluid filled bumps all over my scalp. I can't find any SE such as this listed. During infusions, this is the itchiest place and I feel (and assume I look) like I have fleas! They are no where else and starts on Monday evening and heal by Saturday. Start over on Mondays. My chemo nurses were at a loss, as everyone else there tolerates this drug easily. Boy do I wish for some normalcy. Also had the Tuesday fever and pain. Not able to control it this week and had to go to the ER. I had notified my MO that I was going in and she put a message to the ER dr in my chart to let me tell them what I wanted. I emphatically stated it was not sepsis and only need fluids and pain meds (can only use Fentenyl) and what would happen through the night. Boy the ER dr was not happy at all! I was lectured about only treating 1/2 my disease and how foolish I was being. I explained that this happens every Tuesday and past work-ups were negative for infection, so on and so forth. I said I was leaving and he wrote in BOLD that I was leaving the ER without adequate treatment and against his better judgement. I am already tired of this. I am scheduled to see a pain dr for a fentenyl pump on the 28th, so I hope that ends this.
Ok, rant over. Goodnight everyone.
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Wow Moni! Sorry about your problems! I guess I should quit complaining about my little nose bleeds!!! Can you get one of those cold chemo caps like some centers use for the taxanes???
My chemo center has let some patients use the cold gloves, but no one believes they work. But in your case, maybe.....
I asked my nurse and also talked to the head nurse about the ointment. Since the Mupirocin is used for MRSA, we kind of thought that was overkill. So they gave me samples of a triple antibiotic ointment (Neomycin, Polymyxin and Bacitracin). So far, no bleeds....but we will see.
Funny, they also suggested the AYR too. We should all be nurses...
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Hello, sorry to jump right in during the middle of a conversation. I am starting Kadcyla on Thursday, is there anything I should have on hand or prepare for before my infusion? Do most of you pre-medicate with steroids or anti nausea meds before going to your infusion? Thanks in advance for any information you can provide. I'll get started on reading the rest of this thread to see what might be expected.
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I just had my first infusion of Kadcyla last Thursday (Dec 10, 2015). At first I thought it was going ok, but then the headache started, then the nausea and chills, and the overall fatigue. I had to just take to my bed and stay there for the weekend. I thought that things were better today (Monday), but I'm now running a fever - 100.8. Not feeling great at all. Hoping this all goes away soon. My next infusion is New Year's Eve.
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Maine-just jump right in! There sure is a lot to read!
No pre-meds---let them do it for you, with IV's. I started out wil Kytril as an anti-nausea pre-med, then went to Aloxi, then finally Emend with Aloxi....and that is the best.
I also have here, Papaya tablets, Pepcid, and Zofran. However, with Emend I can't take Zofran since they are the same kind of formula or something. Compazine will also work.
I don't really get too much nausea and it has actually gotten better.
They give me a Decadron IV steroid for nausea and pain.
Shoo-that is not typical with Kadcyla. I hope that was just a temporary thing for you. Most ladies have very few problems.
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Maine plus an amazing Dog!
I just completed a year of kadcyla (clinical trial for early BC). I read what I can find about experiences... and have to say kadcyla seems to have quite the variety of manifestations. I wasn't pre-treated and my tumor burden was well, not much. Themes I've picked up are constipation (plan for it and eat accordingly), possible nausea ( zofran causes constipation also..), acid reflux, joint pain... Maggie
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I was on Kadcyla for 9 months, took a 9 month break for a brief remission and now back on it.
The constipation was making me nuts, but I now found the key-a dose of Miralax every evening, and 350 mg of stool softeners.
That got the approval of my nurses since I hate to go the laxative route. But if needed, 2 ounces of Philips Milk of Magnesia does the job.
I had insomnia, but found that just 3mg of Melatonin works great.
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Thanks, ladies, for the input. I am just coming off Taxotere, Perjeta and Herceptin so I don't have anything around for constipation, I will make sure to get something. I have both Compazine and Zofran, here's hoping not to need them. I've got nexium Rx for heartburn from Taxotere so that's covered. What do you take for pain reliever? I have real pain medications for bone mets but haven't really needed them. Do you just use NSAIDs? What are the papaya tablets for?
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Maine-I don't get many aches at all. My onc says they are just from old age-LOL. I use Motrin if needed, but that is seldom.
I am on an eBay discusssion board since I have a store on eBay....and one of those ladies suggested the papaya tablets for indigestion. Funny how I get info from them-including the Melatonin.
Meanwhile, some of the ladies have BC or other cancers, so I help them too.
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Just read this- pretty cool!!
http://www.breastcancer.org/research-news/kadcyla-improves-survival-for-some-mets-dx
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I like that!! Now lets get rid of some of these SE's!
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YAY! Today marks the start of my 14th year since being dx'd with BC. Since I could have had BC for 8-10 years before it became Stage 4, I guess it is much longer.
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Congrats, Denny!!! Wow that is a long time living with Stage 4 disease, and also knowing you have Stage 4 disease, because as you said it is likely you actually developed the disease much earlier
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Denny, that is fantastic. Congratulations. You are a real inspiration!
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wow Denny! What a milestone! Thank you for giving hope to us all. Here's to another decade
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You were my first hope and my first inspiration for my stage IV. Here is to many many many more my dear Denise.
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Hey Maggie Cat...... Best to luck with a good run and positive results. Denny 11,2,3 here is a well deserved hug for you!!!!! My start on Kadcyla was majorly put on hold after it was discoverered that mypituitarywas cancer bordered and Tx was started ....surgery then rads. The key was recurrence of diabetes incipitus...easier to read abou. MRI finally showed early indications and surgery around the pituitary was finally completed ..... Now ten mo later........itistime........again.....My. I PAD needs a charge.......bye. Pe
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Good luck momo!
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Thanks, Denny, Will see main onc at Magee's this week for continuing plan......possibly Kadcyla now.... Need to look at current scans and numbers.......need to GET GOING. I am sure we all have been there in one fashion or another. I hope that your Christmas was a beautiful one with family and the new year ushers in good stuff. My wish for all my friends. Pegg
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Pegg-let me know what he says...and who is your onc? I keep haring about a lot of new and excellent oncs there.
Praying that Kadcyla puts me into remission again and if so, I will never quit it again....remission or not.
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Denny, My oncologist is Dr Brufsky. He is with UPMC.....I see him at Upmc/Magee. He is very involved with research......a good practitioner very involved in patient care. Good luck! I will be seeinghis partner Wed. Peggy
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Well, ladies, it's been nice getting to know you but after only a two month stint on Kadcyla, it has been determined not to have worked for me. I'm disappointed because it was an easy regimen for me--after the THP and the AC. I wish everyone here the best of luck and continued success on Kadcyla. I mostly just read here in BCO but I feel like I "know" many of you.
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Peggy-He is the best! Maybe I asked you that before. My onc consults with Brufsky on difficult cases and I have also heard him talk at various seminars. Please keep us posted!
Macy-sorry that it didn't work. Do you know what your next tx will be?
Denise
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