Who's on Kadcyla/TDM1?
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Hi tooth,
Blessings to your mom. I have been on Kadcyla for over 2 years, but never had a platelet problem. An improvement after only 2 tx is wonderful.
But he needs to get her platelets back up and if her onc doesn't want to do a transfusion, he would know the best. Hopefully she can get reduced amounts once she gets back up to normal platelets.
My chemo center has several ladies on Kadcyla and I don't think any of them have had that problem.
How about Herceptin for her? Kadcyla is a super Herceptin, so is much stronger.
Denise
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Hi Denny,
So she was on herceptin for a year after her surgery and did very well. At that point there was no metastatic spread so she was off herceptin for about 6 months. Then she started having the stomach issues and also had two brain mets zapped. I'm wondering if getting her back on herceptin would be beneficial on its own.
Regarding the platelet count.. They did one dose reduction and her platelets did not fall as far (nadir was 35k instead of 10k). The only question is now, do we wait and allow her to naturally go back up and delay her dose for a couple more weeks, or give a transfusion to get her back up and give the secondary reduced dose quicker. I'm just concerned about her having to wait so long between doses.
She has her first PET/CT on the 9th after she started Kadcyla so I guess we will see how that looks before deciding.
Has anyone here been on herceptin, then off, and then went back on after they had mets? It was my understanding that you need to go to the next drug if there is progression, but since she was off the herceptin for 6 months, maybe that's why she progressed
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Herceptin should be given along with another chemo for metastic.
I was immediate Stage 4 with mets to my liver....went on Gemzar with Herceptin...was in remission 9 months later.
Remisssion lasted 6 years on Herceptin only.
When I got my recurrence in my chest, I went back on Herceptin with Gemzar, which didn't work this time. So it is possible to go back on it, in the event that the Kadcyla is too strong.
I am glad she will soon have a PET scan, so that will give further information.
Denise
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Denise,
That is good to know. So you can do herceptin plus chemo and if ned then just herceptin?
Pre-surgery she had perjeta+herceptin which worked really well based on the path reports. Then post surgery it was perjeta/herceptin/ and I think taxol. Then herceptin for a year. Knowing that so many have done well even at stage 4 is very reassuring. Thank you
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The most accurate answer is, no one knows. You can go back on Herceptin plus something else, like Taxol or lapatinib or capecitibine, and then go back to Herceptin alone or Herceptin/Perjeta, but whether that will work in an individual case is just not understood. You can find people with almost any outcome with different agents, and the best thing to do is gather information, talk to the doctors as many times as you need to, and as many as you want, and carefully consider the options. btw, Kadcyla is Herceptin attached to a chemo agent, so in effect the Herceptin is there. There is no data that I've seen looking at the efficacy of Herceptin alone after Kadcyla. You can also try writing to Roche to ask if they have any information. Best of luck.
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Hi ladies
Four weeks ago I had my sternum removed as I had a large tumour there. During the procedure they also identified a positive node in my internal mammary chain and the histology shows positive margins. My PET/CT shows no other spread. I've been given the option of Taxotere, Herceptin & Perjeta or Kadcyla. My oncologist's preference is Kadcyla as I had Taxotere 2 years ago for my primary tumour and he is concerned about how effective it will be again (especially as it is relatively recently). I also prefer the idea of Kadcyla because it seems to have fewer side effects and I'm really not keen on losing my hair so soon after it has grown back. Having said that, some people seem to be getting remarkable results on THP. Has anyone gone on Kadcyla and then moved on to THP? It seems like it is always the other way round. Would love to get some advice / thoughts. Many thanks
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Hi cath3rine,
I had good results with Kadcyla and even went into remission for a few months. I have 8 nodes in my chest and neck now, and back on Kadcyla.
This time the nodes are stable but the SUV score is higher, which means that the nodes are more active.
Interesting about THP, since I am wondering if that could be my next chemo. I had Taxotere 14 years ago for my initial BC treatment. And was also on Herceptin for about 11 years.
A lot of ladies have very good results with Kadcyla, so I would think that is the best one for you this time.
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Thanks so much for coming back to me Denny. I've seen some other posts from you and you certainly have plenty of experience! I saw my oncologist today and I think we are going to go with Kadcyla starting in a week or two. Unfortunately I also got the results of my most recent CT scan and there is a new nodule in my lung (6mm) and the suspicious node is actually a 1cm tumour. Pretty gutted to see progression so quickly after nothing showing up on my PET/CT a couple of months ago. I'm told that the most aggressive cancers are often the best responders to treatment - I just hope that's true. Wishing you all the best with your treatment
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Good luck with Kadcyla! There are several patients at my chemo center on it, and all of them have less SE's than I do. But I have been on chemo for 14 years, so I guess that I am less tolerant.
Your node is a lot smaller than mine are, so I am sure you will have great results.
And it still is a lot easier than most chemos.
I did a little research on Perjeta since I seemed to recall that it is not an option for me, and that seems to be true. It has to be the first metastatic tx given.
Did they put something else in your chest when they removed the sternum? I have never heard of that being done.
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I will be starting Kadcyla this week as I've had progression in my bones. Good luck to you Cath3rine! May it be a tolerable andeffective treatment for both of us and all the others on it.
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Good luck ohmydarlin!
So I have a question for all. Since my Kadcyla seems to be failing and I won't know until August....Does anyone know what the next chemo might be?
I know that everyone is different, but my onc will usually ask what I want or give me options.
I read that a clinical trial is out for Tykerb and Xeloda versus Kadcyla alone. Kadcyla was better.
Was wondering if there would be a chemo that I can add to the Kadcyla.
I am Her2Neu+++, so it seems like Haliven and iBrance is out.
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Denny -
I am not sure what Neu+++ means but I've seen HER2+ people on Ibrance.
It's not an approved use. The doctor has to push for insurance coverage for any non-approved use. But in many cases its accepted. Technically, I am not eligible for Ibrance either since I was not originally in menopause.
I make this point because Ibrance is a significantly different treatment and if your doctor thinks it is worth trying, the side effects aren't bad.
>Z<
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Zarovka,
Thanks for the info. The whole term for me is Her2Neu+++ or one can be Her2Neu-.
I read that ibrance is only used for the Her2Neu- gals, but I will be sure to ask about it.
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Denny- I have a friend that's on Herceptin, Perjeta, and Navelbine with a good results and quality of life. I also read somewhere that Perjeta could be added to Kadcyla. I can't remember where I saw it or if it was a clinical trial. I had it in my notes for "down the pipeline when this drug fails me
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CJRT,
I do intend to ask about Perjeta, but I think that since I have already tried Gemzar with Herceptin for my chest mets, that Perjeta would be out.
I think it has to be the first thing tried.
But thanks for the info. LOL-I am accumulating a long list of possibilities....chemo cocktails or something....
Denise
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Good luck, Denise! Let me know if you come up with any good cocktails for me to add to my list too. 😉 I read some research about Ibrance possibly being an option for Her2+ ladies as well
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I am Her2Neu +++, so ibrance won't work for me. It is for Her2Neu- ladies. Unless something changed along the way.....
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New research with Her2+ shows some promise. Here is a link-
http://www.bcrfcure.org/blog/lab-study-shows-drug-combination-important-overcome-drug-resistance-her2-metastatic-breast0 -
CJRT-Thanks! Sure gives me hope!!!
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Denny - I am in the UK and Perjeta is normally only available as first line too. However, my onc is approaching the insurance company to ask them to agree to allow me to move on to Perjeta if Kadcyla fails. When I spoke with the insurance company, they indicated that if he was able to put forward a solid case then they would at least consider it. I don't think there's any medical reason why Perjeta has to be first line. It might be an option for you. Re. the removal of the sternum - yes, they put in a mesh and moulded a new structure from the same kind of material that's used for fillings. I saw my CT images the other day - it's pretty amazing what they've achieved.
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Good luck ohmydarlin. There seem to be a lot of people having very good results with Kadcyla with an excellent quality of life. Here's hoping it works for us both for a very long time.
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So here's a thought....how about Tykerb with Herceptin, Halaven, or Xeloda? I have already had about 11 years of Herceptin so that might be out.
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First infusion went well today. Hoping and praying it continues to go well!!
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Great! Keep us posted!
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Good to hear it went well Ohmydarlin.
I have finally got the confirmation from my insurance company that I can move on to Taxotere/Herceptin/Perjeta if/when I progress on Kadcyla. With this reassurance I start my first Kadcyla infusion on Wednesday. I'm relieved as I hear the side effects are much more tolerable and the difference in prognosis between the two drugs is marginal if anything. This is not the normal way around in the UK (THP is only licensed for first line mbc) and I'm grateful to my oncologist for putting up a bit of a fight on my behalf. So, for anyone who is refused THP because it is 'first line', it is worth seeing whether your physician can put up a case that reverses this decision. Denise - is this an option for you?
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cath-I do intend to ask about it in August. I have already had Taxotere and Herceptin, so don't know if that matters.
Kadcyla might be pretty easy for you, since you haven't had as much chemo as I have had.
Once I figured out the constipation and nose bleeds, things got better.
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Thanks for the advice Denise. Best of luck.
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I've had a bit of nausea today. I took Zofran which seemed to help. Went to work this morning for a while and then decided to come home to rest. I've been napping off and on. Some of it may be the anxiety of a change in treatment.
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Ohmy...what kind of anti-nausea pre-med did you get? I had nausea for several months when they gave me Kytril. So finally a nurse suggested Aloxi. Still had nausea.
Then I read on here about Emend, which they give with Aloxi. Major difference in the nausea and much better. But I can't take Zofran for a week since Emend works the same way as Zofran.
Compazine via pill at home is suggested, but I seldom need it.
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I didn't have any pre-meds at infusion. They said they could add it next time and I will definitely be asking!! I threw up once late this afternoon but I'm feeling ok now.
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