Who's on Kadcyla/TDM1?
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Hi Sisters, Scan shows that this Kadcyla is not working. Only 2 treatments. Progression. May be changing to MM302. Anyone have experience with that? What else are the options after Kadcyla?
The Kadcyla really was hard for me to tolerate with tiredness and nausea, but I wish it had worked nonetheless.
My Her2 levels are borderline (negative on first test, positive on FISH but only about level 2+) so maybe that is why kadcyla not working. Anyone else on Kadcyla TDM1 with FISH score for HER2 under 3? Did it work for you?
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Thriver...I am so sorry that Kadcyla quit working for you. I pray that you will find a more effective TX.0 -
Fuji....I didn't have pain since my mets where behind my sternum and in my supraclavicular area.Sure hope it gets better for you!
Pricilla....I am sorry about the brain mets. A lady in my chemo center found that the Kadcyla cleared up her brain mets, so I sure hope that it will do that job for you!
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I was on herceptin and perjeta. It resulted in congestive heart failure, March 2014. The cardiologist worked to strengthen my heart. Once I was off my heart function was restored to normal. In August 2014, I replaced a TE that had become infected December 2013. Replaced TEs with implants December 2014. One scan showed spot on my spine. Had radiation in November 2014. January 2015 another scan showed spots on my spine and pelvis. My heart was now ready for kadcyla. First treatment just fatigue. Which seems like my new normal. Second treatment after two days severe admonial pain. Went to ER they kept me over the weekend. I had a MRI and CT scan. Inflamed liver, gall bladder, and pancreas. I was given antibiotics and put on a liquid diet. Onocologist determined random viral attack after blood work. Okay my husband and I understood and moved on. By then I was feeling good. Received kadcyla this past Tuesday (3/17/15). Tired on Wednesday, got worse on Thursday, which leads to today. Same pain and a low grade fever. Now I'm questioning my "random" attack. Not feeling like ER tonight. But if needed I'm there. I hope everyone does well on kadcyla. Everyone responds differently. Next scan is in April. Thank you for allowing me to process the process
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Happy Dance. Scans this week showed reduction in all tumors. I had five measurable BC tumors in my lungs and my right lung had ground glass. Now only three measurable tumors all half the size and no ground glass. Kadcyla is working. Liver isn't happy, but isn't getting worse. I'll take it.0 -
That sounds so good and you must be on cloud 9! You write: if all the mets are gone...well, I hope I do not have to stop kadcyla anyway (but my liver might not like it). Last time I stopped treatment (herceptin after the first year since I was NED) ...it came back in 6 months (with a vengeance since it spreads further) and I am afraid to build resistance. But I am never sure of what I will do next. So far I have surprised myself at every turn regarding what I am willing to do. So far Kadcyla is chemo but not as bad as Taxotere, Carbo or Doxyl! I am not ready to do nothing. Yet.
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I just wanted to give everyone who is on TDM1/Kadcyla a little hope and share some good news. After 4 rounds, TDM1 has officially brought me to NED status! This drug has worked wonders on my remaining mets and the side effects seem to get slightly easier after each round. I hope that everybody else on it responds as well as I did!
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Good luck all!~ Yay Becs!I am hoping that my remission lasts longer than the total of 8 months until my next PET scan in July.
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That's wonderful Becs! I'm happy to know that this drug is available to me in the future and that you ladies are having such success with it.
May your NED and Denny's remission last a very long time!
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Yay! I will be tested again this summer. This treatment for me has been supper easy.0 -
My friend just started TDM1. She had mets to her bones and after herceptin/perjeta/taxotere got her to NED, she was on Herceptin/Perjeta maintenance for about a year before she found out about mets to her lungs. So now it is on to TDM1. Does anyone know how long it can take before we can tell if it is working or not working? Her tumor markers went up after her first round. I've read that this is not necessarily a sign that it is not working as this could potentially indicate cancer cells dying off or that TDM1 just takes longer to work or build up. I was wondering if anyone else had similar experiences. Thanks.
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My experience is almost identical to your friends minus the tumor markers. My markers are always in the normal range. TDM1 took 3 months to reduce lung Mets. Most are gone or half the size. I'm getting my next ct/bone scan Tuesday morning. I'll let you know what the results are.0 -
Thank you for the reply fujimama! Once we found out her current treatment wasn't working and she had to switch to TDM1 it was very scary and then hearing the first round didn't help with the tumor markers we couldn't help but wonder if if it was working or not. We know we shouldn't jump to conclusions after one round, but it can be difficult not to. I will be praying for good scan results for you!
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I have been on TDM1 since the beginning on January, and it has been very good to me. It brought me to NED, so I know it is working, but every single time I get the same side effects. I have my treatments on Friday mornings, and am okay until Sunday night. And then boom, bad chills and high fever. It usually lasts until about Tuesday morning and then I am back to being fine again, tired, but fine. The fever gets as high as 103. It is like clockwork. Does anybody else experience anything like this?
My doctor thinks it is very unusual. Since I am at Sloan Kettering, and they are the ones that ran the clinical trial on it, my doctor is reaching out to the head of the trail. She wants to see if anybody else ever anywhere had effects like this. Especially since mine have not reduced over time.
The fevers are pretty miserable but at least I know it's doing what it's supposed to, I guess...
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Thanks Shutter! I sure pray for a long remission!
My tumor markers did not go up with my recurrence, so we didn't even look at those. After 4 months on Kadcyla, my nodes behind my sternum and in my neck, were smaller and less intense.
4 more months of treatment, and they were all gone.
It does take patience.
Becs, I never heard of that happening....do you get a steroid IV with your tx? I guess at least you know to expect the chills and fever, but that is strange....
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Denise,
It is so go to hear you are still doing well after Kadcyla and hope you will be NED for a long time. My first scan after taxol/herceptin / perjeta back in Jan showed all tumors gone and no cancer activiy. Second one was 2 days ago, no evidence of cancer. Only a sceloritic iliac lesion which i had before my cancer and again no activity. Next tuesday will be my last taxol. I had 6months of weekly taxol but i am a bit worried to stop it. I will continue on H/P of course and an anti hormonal maybe tamoxifen. Hope you keep the good news . Hugs
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Yay Woody! So great that everything looks good! I ar sure that the H/P will continue to work for you.
Herceptin alone gave me a 6 year remission.
Prayers continue for you!
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Thank you Denise for your support, i hope so too it will work for a long time as your kadcyla will too.
Thank you for your continous support for everyone. Such a great lady! Hugs.
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Becs-- I get the same fever a few days after Kadcycla. I get infusion on a Wednesday and by Saturday or Sunday I will be shaking and shivering, teeth chattering, and feeling truly awful. Fever will come and go, up to 103. After 5-8 hours it seems to be over. It is the worst part of the side effects, for sure. My doctor has never heard of this happening to another patient, either.
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Hi, I'm new to forums. I will be staring a clinical trial on July 1st, after my AC infusions. I am a nurse and work Labor and delivery, I was wondering how many people are working while on their chemo, and when the worst days are. I will be on Kadcyla and Perjeta for one year. I love my job and can't wait to get back.
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I am a stay at home with lots of volunteer opportunities. Working on Kadcyla with perjeta should be doable. You'll have a few tired days, but if you love it that much it's worth it.0 -
I work full-time while on TDM1. I get my infusions every third Friday and usually "work" from home on the Monday and Tuesday afterwards. But I am in the rare minority that gets bad side-effects from this drug. On the weeks in-between treatments, I work around 50 hours a week and even travel for business. I am heading to Vegas for a tradeshow in 2 weeks!
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well my mo pulled my Kadcyla. My spleen is enlarging. He's worried that my liver is building scar tissue due to a rare side effect of Kadcyla. Out of the 900 plus women in the clinical study 3 had this issue. I know I am one of a kind but gees. On the plus side I am mm away from NED. Liver study in my future and hopefully I can get back to NED after.0 -
Sorry Fuji!
Kadcyla did work for me, and my last tx was in November. I have been on Herceptin since then and Faslodex.
However, my EF was only 50% on my Echo, so I couldn't get Herceptin on Friday. So who knows if my PET scan in July will show another recurrence.....
I work at home-I have a store on eBay with over 1,900 items listed. So I do keep busy. I did get some nausea from Kadcyla, but it really didn't keep me down.
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Denise,
I am always happy when you post , you always get a breath of fresh air with you. You will have a good scan on July and i will wait for your post to congratulate you about it.
I am well till now Pet scan still shows clear no evidence of disease. But now i am off taxol , only herceptin/perjeta plus tamoxifen. My next scan will be in September. However, my tumor markers showed some increase whch my onc dismissed. It rose to 32 from 28. It worries me . We will see in september or on the next blood test whch will be in 2 weeks.
God bless you , you are always full of energy and i hope you stay like this for a longtime . Xoxox
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Thanks Woody!
Well, I will soon be back on Kadcyla since my recent PET scan showed a recurrence in the original areas. Kadcyla will start July 20.
I had a cancerous node above my heart and one by my esophagus and they are starting up again.
But the node in my supraclavicular area is much larger and very hot with an SUV of 17.
Kicking myself for not staying on Kadcyla in spite of remission, but too late now.
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Denny:
Glad you posted. We've been thinking of you and wondering how your tests went. I hope Kadcya does a great job for you again! Ann
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Denise, i am sorry! I did not expect this news, but then it is BC we should expect anything. I am glad you ate starting on Kacyla again. Do not kick yourself , because i believe each cycle is of six , i do not believe they can keep you long on it. So hopefully after the break it will work again. Keep me posted please. My prayers are with you .xoxoxoxo.
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Teakie...thanks!
Woody--I didn't know that there was a limit, since my onc had asked me if I wanted to stay on it. I then asked if I could get a 75% dosage, and then he asked what my side effects were.
I have only gotten through half of the side effects, when he stopped me and asked if I wanted to take a break.
Guess that I will find out since I am sure that I won't be taking any chemo breaks from now on.
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Denise,
So far since almost 14 years you have been responding to treatments , i hope this time you will too. Are you candidate for taxotere/herceptin/ perjeta? It is giving good results. But maybe you are right your doctor maygo back to kadcyla since it has worked for you. Either way i hope you respond again to NED. I hope your session on the 21 st goes well.
My prayers are with you. Keep us informed. Xoxoxoxoxo
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