tdm1/Kadcyla

If you have her 2+ breast cancer- get on this drug! I was diagnosed Stage 4 from the start in oct 2011, 45 years old, mets to breast, lymph nodes, spine, bones, liver. Previously been on herceptin/abraxane, tamoxifen, cancer spread to brain and lung. Had wbr for 11 brain mets in oct 2012, down to 4 and shrinking.

Started tdm1 with weekly taxol in nov 2012. After only 4 doses, all liver mets resolved, lung met almost gone, all bone/spine mets resolved. Now on tdm1 alone every 3 weeks. Will have another brain MRI and pet/ct next month. My tumor markers are in normal range- they never have been since I started this journey.

Try tdm1/Kadcyla- your cancer will hate you! Ha!

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I had my first dose of Kadcyla on Tuesday. I was pretreated as is standard at my oncology office with infusion of famotidine and granisetron for nausea and decadron for allergic reaction. I felt great, no side effects at all and had high energy. I ate normally. On Thursday night I started to feel a bit nauseated and my abdomen became hard and distended. It began making very loud gurgling noises I took a zofran and was able to sleep off and on. Friday morning I still felt nauseated, painful ab, and weak. Took another zofran. I felt awful and started vomiting Fri evening for about 8 hours. Sat morning, I now feel week and tired and achy and a bit nauseated. My question, the only 'true' chemo I have been on is xeloda pills which made me a bit nauseated but not sick. Since everything I had read says that Kadcycla has low side effects is it possible it is affecting me more since I have not been on IV chem. I would love to hear others experiences with the drug and any suggestions for me to get through this.

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I think we are all different- both in terms of S/E, and how well any given drug works. My guess it that the longer Kadcyla is out with more women able to use it, we will learn more about who responds the best, what it may be paired with (especially for brain mets) but now I am just thrilled many of us will be able to give it a shot at last! I had my first infusion on Monday, and I felt good Monday, but had a pretty bad stomach ache on Tuesday which was paired up with a migraine (I get them) on Wednesday which finally was gone completely when I woke up this morning. I am still feeling fatigued, and I am still having some stomach pain, but it may be due to previous rads to T7=10 that hit my esophagus and I have had esophageal pain on and off ever since. None of this is nearly as bad as Xeloda and Tykerb were for me (ended up in ER), and not nearly as bad as the last protocol I was on that included carboplatin which made me violently ill even with zofran, so I had 3 anti-nausea premeds on that, which brought their own side effects! I understand that after the first dose, the Kadcyla gets easier. We should keep in touch with each other regarding both S/E and efficacy as time goes on with this exciting new drug!

I was sorry I did not feel good enough to participate in the rally here in Boston yesterday, but heard it was great. Thanks so much to Phil and L. for your tireless advocacy work which is paying off! ALL HER2+ women with mets should be offered this drug!

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Let's keep in touch for sure. It's day 5 after the first Kadcycla and I feel like the tail end of a flu hangong on. I'm sure all will be back to normal in another day or two. Thanks..

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We continue to be excited about this drug , we feel it may be a cure for some, and with still others , seems to beat back the her2 cancer for quite a while, months , and then if theres' new progression, combos like herc / tyk, maybe adding perjeta , help maintain stability .
overall efficacy is still murky. the hard no's I have seen were the 38 % complete or significant ( 6 mo. plus ) response when t dm-1 was initially nominated for acc. appr. in 2010. The next hard no. was last Sept., when the co. said 65% of t dm-1 pts in EMILIA had lived at least 2 yrs by that point.
So, I don't like to rain on the parade , but want us to be realists . Its not 100 % , I strongly believe that w-in the 65 % EMILIA no. there are a lot of possible cures, i have heard from many like Lorraine , and even longer ned. and there will be more as its given earlier now, aftre one round of taxanes , for ex. The comments below are from my personal talks with lots of t dm-1ers over past 2 yrs, but is NOT scientific fact .
I have heard from some who got 7-9 months, up to 2-3 yrs before some cancer returned . of those some had extensive bone mets , and t dm-1 hit blood counts very hard. trial rules were not helppful, only so much time allowed betw. doses , etc. some developed lung inflammation , and weren't able to get flexibility in time between doses becuase of trial rules, now rules are eased. some had hx of brain mets, and t dm-1 does not appear to cross bbb, and brain mets re-occurred. Some with shorter response, in 7- 9 months , had ER + as well as her2 . the one long term responder i know with ER + and her2 , KDR on her2 support.org, had taxol for 3 months, t dm-1 @ 2.4 dose weekly, and , significantly, perjeta every 3 weeks. others i have heard of who were ER +/Her2 + on t dm-1 did not get perjeta, and response was 7 -9 mo's before re-occurence . That is why we focused a lot in our FDA Picketing Fri. on the FDAs' denial of perjeta to stage IV , you have to persuade docs to go off protocol. and we protest t dm-1 not being approved for use in combination with other drugs. This is why we Push This Slow FDA. we are very interested in KDR's trial , may be presented at ASCO in June . So, Godzilla is powerful, a great drug , cure for many , more in near future, fewer s/e', actually cheaper than tyk/xel, but i want u to be informed...

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I have terminal brain cancer but a'm taking radiation now onc says I don't have cancer anywhere else so I don't think I have tonstart on anythingbelse, 7. More rounds so then 2. Weeks later to oncologist then I imigamie another MRI in a monthnafter that so I'll see. BIG HUGS ANDBPRAYS TONALL,GODBLESS BROWNEYES

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Elephanteyes I had my infusion a week ago, and today is the first day I feel some of my zip returning. I have a large lymph node under my arm which is definately getting smaller. This gives me great hope! I hope that you are feeling better today. They say the first time is the most difficult- I sure hope so! Praying for NED for us all!

Browneyes, I do not like the word terminal. It is great that your body is NED, and there are more and more options coming along for brain mets! I hope the treatment is going well, and brings brain stability at the very least!

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Iyeah I don't either, I was told that by my onocolist/ radaiations not my onocolists ! I guess they want to be honest too, I'm really being optimistic though I won't give up no matter wahat .I will wait and see what my cancer onogilists. Says he's sated my life more than once! hugs to You ! GODBLESS

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At UCLA they seem to be treating brain mets and maintaining T DM-1, those interested , talk with waterdreamer on her2support.org. she is going thru another round of brain rad. , second one i believe, while on t dm-1.

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I’m a 44 year old male with Breast Cancer. I had my first Kadcyla treatment on March 6th. The night of the treatment was very rough, woke up in a state of confusion which seemingly lasted a few hours. After that night it has all been about an upset stomach, nausea and vomiting. The first two weeks were really bad. The third week, last week, was bad enough that I decided to hold off on treatment for one more week. Now almost four weeks later it’s better as I mostly only vomit once in the morning. I do this even if there is nothing in my stomach. Stopped eating after 8PM as I know what is coming in the am. Mostly a lot of dry heaves with some nasty acid substance making its way up. I’ve been on Prilosec for 4 days so the substance is not as acidic as before the Prilosec. At times I do get an upset stomach during the day but it was much worse in week 1 and 2.

On the positive, the disease is in my lungs and for the past few months walking up the stairs has been difficult. Generally at the top of the stairs I’d stop to get my breath. After my Kadcyla treatment the breathing on the stairs seemed to get a lot easier.

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I'm a little confused. Of those of you who have brain mets and are taking TDM-1, is the drug supposed to be effective on the brain mets? I thought it was similar to Herceptin in that it wouldn't cross the the brain blood barrier. Are you saying it does?

Barb

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my understanding is that it does not cross bbb. hopefully now that its finally at least partially approved, ( gotta progress on taxanes, can't combine it w/ other drugs ) there will be more flexibility in tx. Someone can attack brain mets , w/ rad., avastin , tykerb , etc. , then when brain is clear or under control, go at body mets w/ TDM-1 ( kadcyla). keep it away from brain .
I am intrigued with UCLA' s tx planning ; they seem to keep t dm-1 going , or stop for brief periods ?, as they attack brain mets.
My wife and I are keeping tdm-1 going ( and its going very well for her , 28 months ) , to keep away all mets , incl. brain ( her bc has always gone to liver area ) .
on a related note , anyone see CH4. NBC Los Angeles story last week , about the " first " pt. to get the " new " drug kadcyla ( TDM-1 ) ? After one dose she was released from hospice. great story, but no surprise to those of us familar w/ T DM-1 . Its' NOT NEW, and this has been happening for many , including my wife, for yrs. in 2010, it already appeared to have a super response in more than 30 % of very late stage her2 pts, and a very good , long term response ( 2 yrs and counting in 65 % of the latest trial pts ( 2012 ) ) . we are only now where we should have been w/ T DM-1 THREE yrs ago, until Pres. Obamas' FDA slow-tracked it. When will we have full approval, full use with other drugs like perjeta , tykerb, avastin ?? at This FDAs' SLOW rate , 2016 ? the stats will only go up then ..

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Has anyone on T-DM1 had low potassime
They put me on 2 tablets of slow k to bring it up. Just had blood test will no in afternoon if its coming up to normal.god hooe so

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I was so excited when TDM1 finally came to Pittsburgh!! I was so positive and ready for some good results!!!

12 weeks later, finally, it's time for my PET!!!! We go into the docs office eager to hear my great news!!!!

NOT!!!! Wow did my heart sink. Nothing got better. My liver got worse, I'm now filling w fluid in my ab area and I have new mets in my spleen area and my chest. 😢

🙏 Please God, help me find the right drug for me!!!

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It is so hard when we have been denied such a great option for so long that our hopes just grow and grow. It is not the perfect drug for everyone, has definite limitations, but is awesome for many . I think that there is much to learn about who will benefit most from this drug, and when in the treatment process. We are now at least 2 years behind on figuring this out thanks to the FDA back in 2010. We are also limited regarding combinations of drugs we can try, even as our lives are quite literally on the line here. Brain mets is a huge problem, Herceptin and Kadcyla both are unable to get through the BBB. We are basically not allowed to treat both body parts at the same time, and as we all know, the longer you live with HER2+ tumor, the more likely it is to appear in the brain. Patients and doctors need to be allowed to make these important treatment decisions will full access to all approved cancer drugs. In combinations we are willing to balance risk/benefit ratio over while we fight for our lives. I mean come on.... we have to choose between our lungs and brain???? Both are need3d for survival.

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Im a bit confused, when you guys say i ve been NED? what it is mean? Does it means that that you are HER-
Im so confused with all these terms. Im sorry, just learning to understand what are everyone refers to when they say NED?

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can you help my daughter had stage t1 ER pos, pr pos, Her2 neg with no nodes; she underwent chemo with cytoxin and taxotere, followed by masechtomy and biopsy showed same cancer in tissue removed. She then started on an aromatase inhibitor and L

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TDM is am awesome e tool in our toolbox, not a sure especially for those of us with very advanced disease living for many year with this awful ting. It will now be many ore years before enough of us have received enough of it over a long enough period of time with the widely varied particulars of other ourselves ad our HER2+ cancer. Many more of us will die in the process. Thanks so much for your endless advocacy Phil and Lorraine!

PS Finished brain rads yesterday. liver enzymes still too high an oddly rising for further systemic treatment, so we will treat the largest almost 6cm lung nodule that is impairing my breathing and speech by blocking the bronchi and being general troublesome. After that we hope to treat the too numerous to count remainder in my lungs, and the rest swimming around looking for trouble disabled at the very least. Oh, and NED in the Head would be nice too!

By the way, I still have options an do not consider myself to be in the end game yet. Not on Hospice. Still fighting advanced MBC with some of the kindest smartes tmedical team around at MGH in Boston.

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Doravee
NED is our abbreviation of No Evidence of Disease
It means the cancer is not currently active. Just lurkng
So far it is the best report you can get at Stage IV
Pat

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