Who's on Kadcyla/TDM1?
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Hello ladies!
I am starting Kadcyla tomorrow morning and am ready to kick this -
I had been "clean" for 2.5 years but the Tumor on my femur flared up and I have positive pelvic lymph nodes (confirmed by biopsy). I have been on Herceptin since March 2012. We did TCH for 4 months at that time and my liver met disappeared... I had a brain met found in 2014 (after a seizure) that we removed & radiated.
I am happy there is TDM-1 ready for me now bit not excited to know I am on this forever or until disease progression (I hate that term). I asked my doc if we can revert back to Herceptin and maybe add Perjeta (never had that one) after my scans are clean again - he said it was not approved that way but that things may change...
Wish me luck!
I just turned 42. I have 2 kids: Sam (9) and Eva (7). I live in Chicago.
Sending warm hugs to all of you!
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Denny123.... sweet lady... I am sorry. You have been an inspiration to me and still are. I did google Poziotinib, as like MargaritaMI, I had not heard of it. Please be sure to pop in as you can and keep us updated. I am hoping the DS-8201 will be approved next year. (super kadcyla) still have some very high hopes for that drug! it sounds so promising!
MargaritaMI glad your results are in and a plan of action is in place. I have had rads but it was after my TCHP chemo in 2015.
Praying for a cure for all of us.
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Hi Ninahaddad, I have been on kadcyla for 15 months now. think going into infusion #24 after Christmas. SE's are all tolerable. I have my infusions on tues (every 3 weeks) and by friday afternoon... BAM i am hit with tiredness ..ready for a nap and feel worn down for weekend then monday start picking back up. also the nasal drip. altho last time it was too bad. i have gotten leg cramps but they are far and few between .. my potassium gets low so i bumped up my potassium. my AST in bloodwork goes up and down on occasion but has never been a red flag or caused a concern ...kadcyla can cause liver damage and cause the AST/ALT numbers to rise have to watch that. My onc said if rises more than 3 times than the highest number allowed ..i am off of it, havent gotten near that number. my 2 small mets are in lung. Wishing you good luck with Kadcyla.
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Thanks Margarita!
I will continue to read this thread since it appears that no one else so far is participating in the Poziotinib trial. There are only 70 ladies in the USA on this clinical trial.
I might find out in 2 days if I can go on it, and am hoping that the CT scans will be paid for since I would have to have them every 6 weeks. On a monthly income of only $900, I sure can't afford to pay for them! Medicare is reluctant to pay for clinical trials.
Love to all,
Denise
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Thanks DL3! I promise to hang around here with updates.
Good luck Nina! I was on Kadcyla for almost 4 years and it was tolerable.
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Denny, so sorry to read Kadcyla stopped doing its thing! Please let us know what's next for you.
I'm on the same boat, only got a year out of Kadcyla. Makes me so sad! I had no side effects and it erased my liver tumors. Unfortunately, had progression to brain and lungs. For a while radiologists kept saying it was pneumonia, then oncologist said it was Kadcyla causing inflammation, then finally a bronchoscopy confirmed it was cancer.
I'm on weekly taxol/herceptin, and intrathecal herceptin for suspected leptomeningeal disease. Weird, but I'm doing ok, maybe denial :-)
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Gramen-I will certainly keep everyone posted. I did a search on here and only one lady posted about the Poziotinib and she ended up in the hospital! Really scary.
I was on Herceptin for 11 years and don't think I will ever be able to go back on it since the tumors grew in spite of it.
Were you given the option of Tykerb since it crosses the blood-brain barrier?
Denise
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Denny123... Tykerb will be my next drug when needed... i believe. then after xeloda. man just hope the ds-8201 gets out of trial quickly and here on market!! as that could be your next Denny123
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My third possibility is Xeloda and Tykerb together.
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i think another could be Navelbine
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Keytruda (Pembrolizumab) plus Herceptin is another.
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throwing some more out there for you Denny123
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a gal on a forum just went on this Cisplatin for her lung mets
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STELA Trial! Kadcyla, Tykerb and Abraxane
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Opdivo
Generic Name: nivolumab
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) Thanks! I did have a list of possibilities. I would have thought that Navelbine and Carbo would be a possibility. But I will go with what he suggests.
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Hi gals, thanks to someone in this group (sorry that I can't remember who it was), I learned about the so-called super Kadcyla known as DS-8201. I asked my MO about it a few weeks ago and she said she'd look into it. Today, she told me that although she hadn't heard of it prior, she was interested enough in the drug's early findings that she is now trying to establish the hospital/clinic as a trial site for the phase 3 trial they expect to open in July 2018. I was really impressed that a tip from this group passed on to my MO led her to research and then apply for a clinical trial. So good to keep sharing information. Maybe we'll have yet another good drugoption down the road.
In other news, I'll be proceeding with SBRT radiation to my spine in hopes that we can push back the one misbehaving met and continue on with Kadcyla since it is otherwise keeping thingunder control.
Happy holidays!
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Margarita,
Wow that is moving fast! My onc said it is only in Phase 1 now. Keeps me hopeful if the Poziotinib doesn't work for me.
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Denny123, it is possible that I misheard but I thought she said phase 3. It’s a drug that has been in testing for different types of cancer, beyond breast cancer, so perhaps the study has some different arms or phases In any case, hoping the Poziotinib works for you for a good long while!
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Sounds good in any case! Maybe my onc was wrong, too.
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Hello all! Had my first Kadcyla two days ago. Having a lot of pain in my knees but I am on my feet all day. Anyone else have joint pain with this medication? I was on Herceptin and Perjeta for over 2 years and didn’t have this pain
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MargaritaMI ......it was me telling you ladies about DS-8201 !!! I was thrilled to hear about it!!
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i cant find what phase DS-8201 is in ... but I know FDA approved. I keep track of many drugs for my future
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Hi Liz, no joint pain for me. heading into my infusion #24 been on kadcyla since sept 2016 . could you take claritin for it? I know i took that for the TCHP chemo which included herceptin
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Liz-I had joint pain when I was on Kadcyla. That is why they give a steroid with it. I took Motrin for it.
DL3-after trying to figure out what the heck the info meant on DS-8201, it seems to be in Phase 1, part 2.
My onc said when it is Phase 2, it will then be given a name instead of numbers.
My new upcoming clinical trial has 3 parts, according to the dosage amount, and I will be in part 2 with the medium dosage. Interesting that my trial is not FDA approved yet-that doesn't reassure me at all.
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Denny123.. I do recall my onc telling me about the number ..phase 1 then changing to a name... phase 2 he said they pay people if what you suggested for the name is selected.
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Yes, try googling the stuff and try to understand what the heck they are talking about.
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Ladies, just wanted to stop in and wish each of you a very Merry Christmas~
I am always Praying for a cure for cancer.
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Merry Christmas to you too, DL3.
Blessings and praying for great health for all of us!
Denise
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May everyone experience peace, health, Love and beautiful memories with your family in this holyday season.
May God bless us, and guide us through this journey .
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