Who's on Kadcyla/TDM1?
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Hi Ladies, Just found out 2 days ago Stage 4 lymph nodes mets all through mediastinum & into my abdomen. Just had finished a year of Herceptin in January. Going to start Kadcyla soon. Would love to hear any advice or tips about side effects. Still in shock about Stage 4. In my early 50's. Married with three children. Peace & prayers to all of you.
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Woody, I do think that the Perjeta combo is only for the original TX. Not for me, since I am a recurrence.
Thanks for the prayers!
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2ndtime,
Sorry that you have to join us, but Kadcyla did put me into remission after about 10 months. The side effects were a little harder for me than for most others, but I have been on one chemo or the other for 13 years.
Some ladies breeze right through it....I guess you should read the above posts. Hang in there...we are here for you.
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Denise,
Then I hope kadcyla will work for you again , please let me know how you are doing and Good luck on the 21st. Lots of love.
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I thought I would check in! I've been living it up. I haven't done a single chemotherapy since May. So I have been camping, horseback riding, and riding crazy amusement park rides. I go back Thursday to find out the next step. It's looking like tykerb and herceptin.
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Survived my first (again) tx of Kadcyla. But unfortunately I had the dental surgery from heck the day before. So I am thinking that the triple dose of antibiotics that I had to take made the nausea worse.
I also looked like an ogre for a week since my face was so swollen.
So I was wondering...have any of you used essential oils for nausea? I get a Kytril pre med, take Zofran, Pepcid and ginger lozenges at home.
And I also take indigestion chews with calcium. And I just read in an eBay discussion board about papaya tablets, that my chemo nurse said would be safe.
But the nausea persists, aklthough it isn't as bad as it was last week. My daughter's friend sells essential oils and she is going to send to me a sample of digestzen, which smells like licorice.
Since I am not ingesting it, I think it would be safe. I am allergic to perfume odors, but should be able to tolerate a food smell.
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Glad I checked in...Denny, sincere hope kadcyla does the job again & nausea subsides. You will always be the one that give me the first dose of hope at my most desperate time, being just dx w/liver mets, logging on to the dreaded stage 4 site, and seeing your 10 year anniversary.
Fujii...your attitude is the greatest! Being off chemo since May and living it up! You go girl. I'm hoping your next cocktail is the perfect mix!!!
Good Monday morning, my dear Woody!
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Thanks RonnieKay!
Nausea is better this week. Still checking into the essential oils and my daughter's friend is going to send me some samples.
The other SE's aren't too bad yet.
Thanks again Woddy, for your constant encouragement!
Yay Fuji! Enjoy!
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Denise , i am glad your nausea is better, essentiel oils seem to be in vogue. There was an active thread on BCO. Few days ago and the lady posted a link. I tried to find it for you but couldn't . I hope you'll find one soon to make you feel better. Hugs.
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Thanks Woody. I got an oil sample yesterday and will wait until after my next chemo to see how it works.
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Has anyone received radiation while on Kadcyla and Perjeta? I'm supposed to start next month
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swissRN- I had SBRT to a node while on kadcyla. Because I didn't have a long duration, I didn't notice any side effects at the time. Best of luck!
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Hi everybody! I'm writing here to get some info for my mother.
She has had her third Tdm1 infusion a week ago and she is going to have a scan in a few weeks. I'm so scared, since I'm afraid that the therapy is not working, even though her blood tests seem to be ok.
I've been feeling so useless lately, since I can't do anything to help her getting rid of her mets, so I'm trying to get as many info as possible (even though I know that everybody is different).
She's er+, slightly pr+ and her2 equivocal (but her two previous fish were her2+).
At first she was triple positive. She's been on taxol and herceptin for about six months (perjeta was added after sometime) for a single liver met. After a scan we found out that there had been just a very small regression, she was stable. During surgery (liver resection) the surgeon realised that there were about 7 more very small mets.
Now she's on Tdm1, hoping to get rid of the three small mets that the surgeon has left.
Is it possible that Tdm1 works better than Herceptin+Taxol+Perjeta combo?
Is it possible to be on hormonal therapy and tdm1 at the same time? (Just wondering why the docs haven't given anything to mum for her hormons)
Thank you all! (and sorry for my bad English)
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Hi Worried,
Prayers for your Mom and how nice it is that you are trying to help her!!!
I had success with Kadcyla (TDM1) for the recurrent BC mets behind my sternum. Went into remission in October, took a break, but now the cancerous nodes are back and more aggressive.
So I just had my second tx yesterday. Kadcyla is a super Herceptin, so just might be better for her. I am a 13 year survivor of Stage 4 BC, with original liver mets. So I am well beyond the Perjeta stage since there are guidelines for previous treatments.
I currently am on Faslodex and Kadcyla, and my nurses are very encouraging that the combo will do a great job, as it has for many other patients.
It is so hard to wait and try to be patient, as I well know, but if her tumor markers look good, that is a very good sign. Please keep us posted!
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Denny123, thank you for your kind words and for sharing your experience. I try to be positive, but there are some days in which it's really hard. This uncertainty scares me. And I really don't understand why mum is only on Tdm1 and not on an hormonal therapy as well.
Thank God, she seems to manage Tdm1's SE (some fatigue, slight nausea and constipation), I just hope that it works, that's the right therapy for her.
Prayers for you all!
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Hi Worried,
I am also on Faslodex, which is an estrogen antagonist. But I am Her2neu+++.
Kadcyla is supposed to be so good that it might just do the job by itself. If your mom only has a slight increase, it should do the job for her.
Mine is aggressive, but my nurses think that it should work again this time.
You certainly should ask her onc or the nurses if she should be on anything else. They are always eager to explain it to patients.
It is soooo hard to be patient, since I have been dealing with this for 13 + years.
Take care,
Denise
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Hi Denise,
by the end of August mum is going to have a MR in order to see if Kadcyla is doing its job.
I just pray God that this drug is working for mum. I hope that it's going to work for you as well and for many other women.
I know that all that we can do is being patient, but, as you said, it's really hard.
Hugs,
Laura
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Just an update about mum. She had her MRI and all that the radiologist could tell is that the situation seems to be overall unchanged. Anyway we hope to talk with the onc as soon as possible in order to see what's the next step.
I hoped for something more, but considering that the last biopsy said "equivocal" her2, I suppose I couldn't have expected anything different.
Prayers for you all.
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HI Laura,
Have been having major computer problems here. Prayers for your mum! A reduction in the size and SUV intensity of the tumors is the best, but stability is also good.
If the tumors get bigger and hotter, then it is time to try something else.
Good luck to mum!
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Today mum has talked with her onc and there were no good news
Appearently Kadcyla has made her liver mets stable, but now there are some nodes in the breast area which are inflammed. Now they have to decide what to do, if change thearpy or add something else... I really hoped for some good news...
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Denise, how are you? How is your nausea? Did the oil work? I hope it worked and this time Kadcyla does the job again. I postponed my scan for two weeks, but TMs are good at 26 and liver enzymes still good.
I hope we hear good news from you soon. Hugs.
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Sorry Woody, very late with this. Two weeks ago, my CBC showed that my CA 27-29 went down 5 points, but my LDH went up 37 points. Neither is very reliable for me. So I have to wait for my PET scan in Nov to see what is really happening.
The essential oils didn't work for me since I had the usual throat-closing thing that perfume does for me. So much for that.
Aloxi for nausea worked better than Kytril, but will ask for Emend when I get my Kadcyla this Friday.
So glad that you are doing well! Keep it up!!!
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Hello to everyone on this thread, and Denny who so kindly directed me to this one. I will be starting Kadcyla on the 29th, I read through the posts and see that it is nausea that is the most common problem. I had a very bad time with this on AC/TCH the first time. I already have some nausea d/t to liver (>75% taken over by tumor) and continued liver pain. I have mets to liver, lung, breast (opposite the original) and so many lymph nodes I gave up counting them, too depressing, I was also allergic to the chemo and Herceptin the first time around and my allergist will be with me for this first infusion. Hoping it goes well!
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Welcome moni!
Glad you found us! I had Kytril at first nausea, then Aloxi. Finally Emend with Aloxi and I am going to stay with the final 2.
My nausea is not at all like I had on the other chemos. I can also take Zofran after a week, and Pepcid and Papaya tablets. And ginger lozenges.
Just let us know how you are doing, please!
Denise
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Denny.....What great news....NED..WOW! I am so happy for you..enjoy these beautiful days. As you take a vacation from Kadcyla , I start on it in a week. Diagnosed stage 4 MBC to the lung. I have been on Herceptin and Faslodex for 2yrs.....very little se . TMS have been rising......chest shows some progression. A small pericardial lymph node shows enlargement. YIKES! So here we go with Kadcycla. Any suggestions to deal with any se? I will keep Faslodex on board for now. Now go celebrate . Pegg
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Hello all! I survived the first dose of Kadcyla, 80% of it anyway. Had a low grade fever and chills this am, but they allowed me to go ahead. Dr thought it was do to tumor lysing since my tumor burden is so much. I got my CA 27-29 from yesterday and it was 1775. Will be interested what it is next week. Not really noticed any other SE's yet other than my liver has stopped hurting it I don't touch it. That is great. Was really having a problem with that.
Momonana6- Good luck with Kadcyla. So far this is the best chemo I have had. Hope it stays that way. I do have some nausea, but I had that before from the liver issue.
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Well, Kadcyla did not like me. Woke up on Thursday with fever 102.5. Off to ER. Liver pain returned big time! WBC's 20. EKG changes indicate small anterior wall infarction. Admitted to hospital until today, when I said I had to go home! Starting a new job Monday. MO still plans to continue with another round on the 24th. I hope that goes better, or that will be the last. I also have a lot of bloating, hope I can fit into something by Monday! Anyone else have any of this?
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Moni-I am so sorry that you aren't doing well! You will be in my prayers!
Momo-my remission was short-lived. My tumors are back and worse. So I have been on Kadcyla again since July 17.
Here we go again....
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Dammit Denny, I am so sad to hear the most recent report. Sometimes I notice that tumor numbers, scans will just be fickle and for the short run progression upticks seem to settle down with a tx modification. Hope that is it for you. How long have you been on Kadcyla? My start will probably be in a few weeks. No change in Faslodex? At any rate you are in my prayers for a return to stable and onto an enjoyable Fall season. Here's toit! Peggy
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Thanks Peggy,
I was on Kadcyla for 10 months, went into remission and now back on. If it is working, I will probably be on it forever.
Have been on Faslodex for about 4 years and no matter how much I ask, my onc won't let me stop it....ugh ugh Some ladies are stable on Faslodex alone, so it could be helping me.
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