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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my wife is ned , since nov, 2011. and good response overall since starting it in 2010. few s/e, low platelets, which are steady , slowly rising again. look her up on our website, http://stageivsurvivor.webs.com. do not be too discouraged , even partial appr. will give to those who progressed on a taxane. and u get to skip nasty tyk/xel. Lorraine hated that one the most , had to take it twice, and adria twice. these taxanes are common tx for metastatic disease, you may have had some already. taxol, taxotere, abraxane, are common ones. if you've had any of those and progr., you can get tdm-1. it is not 100 % , but stats are very , very good , 65% had lived 2 yrs , and counting on latest trial data . we know som ned nearly 4 yrs ,so far. we personally hope its a cure for L., many others.
its success will only increase when This FDA gets it to early stage iv , and lets it be combined w/ perjeta, other tx's , like tykerb . but slower than ever fda must be pushed . fda commish is coming to boston next week, 3/15. we are talking about demonstrating. from website u can see we have done it before, new englanders come join our fb grp , Our her2Cancer Struggle, link off my fb , philip mccartin, and help plan demo. Fix This FDA

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I'm scare to death .I'm HER2 positive stage4 from the beginning! I been NED 3 different times now have brain cancer! started radiation,need 12 rounds just had 2,don't know what to do ,doc say have no cancer anywhere else,I wonder what this means ! this Whole damn ideas just takes ,and takes ,and takes! I Don't want to die!Any suggestions? I go back y
to Ono Dr. 2weeks after radiation,I guess he'll do another MRI
,Thanks for any advice!GODBLESS

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I amso glad to hear that, I am on xeloda and tykerb and my onc have been talking about tdm-1 since diagnosis June 2010, and now he actually reckons he can get hold of some, so when xeloda stops working,i hope to go on it too. Have mets in liver, bones, lymph nodes and lungs under investigation. It is so. Good to hear there is more out there.

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Saw my oncologist on Friday, TDM1 is currently at UPMC in Pittsburgh and should be at my oncologist's office next week. Have my PET next week and they plan to put me on TDM-1 the following week!!!! Please God, let it happen!!!!

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Good luck! Hope you get to start on it next week!

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browneyes, finish brain rad., have u progressed on a taxane in past ? , like taxotere, taxol, abraxane ? if u have , ask your doc about getting on t dm-1 right after finishing brain rad. even ask about whether u can start before finishing rad. not sure if that can be done , but always ask any ?

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I also had brain mets and whole brain radiation. They made me wait 2 weeks after last brain radiation treatment before I could begin TDM1. Let your body recover from the radition- sounds like that is the plan from your Dr. since you are going back 2 weeks later. Also radiation keeps working weeks and months after you complete it. I did not get another brain MRI until 4 weeks later, 11 mets down to 7, then 4 weeks later, 7 mets down to 4. Will have another one in April and hope they are gone. Also don't believe everything you read on the internet regarding brain mets- alot of the information is based on old data. You can do it!!!

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Just curious do you folks find the extra several months that tends to be associated to Kadcyla, conservative? One the one hand I see all the trials show an extra 5-6 months, yet the anectotal stories seem much more promising. Or am I reading too much into this since my wife was just diagnosed Stage IV and wasn't going through some of the treatments others are strugging with. (they are starting her off right on Kadcyla).

Also as my mother mentioned that 6 months could be the time she sees a kid graduated or get married, or whatever else could happen. So I am excited for her, but the pain right now is intense (radiation of 3 mets to spine). Also her other worry is that she hadn't even finished the one year on herceptin before the spread to the spine occured (diagnosed Feb. 2012, bilateral mastectomy, ovaries removed, chemo, radiation)

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You cannot look at cancer with an expiration date or we would all be doomed. If tdm1 works for her, it will improve her quality of life significantly. I have only been on tdm1 since November, but I was playing tennis yesterday with 5 fractured vertebrae. Also my Dr. Has 6 women on this drug going strong after 1-2 years. Good luck!

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I'm sitting in the chemo chair waiting for my first dose of TDM1, the research nurse said I was the first to get it commercially at this center, yeah me.
They had me sign a paper that said Medicare might not pay for it, but it's just the protocol, everyone applies for compassionate use, and this is just what has to be done, Can you imagine $94K every 21 days?
So no premedication for nausea, I wont have to come back tomorrow for neulasta, I feel like Ive been set free...
Keep you all posted as my day goes on

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Just started the infusion, looks like a regular old IV bag, how can this do such wonderful things. keeping my fingers crossed.

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I get a little nauseous on infusion days, but I take a zofran when I get home and then am fine. Good luck!

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I start my first infusion of Kadcyla-TDM1 on Friday. I've been waiting for this for the past 2 years. I'm very thankful it's here now at least for some of us. I will be a real test of its strength, I've had multiple tumors in lungs, liver and bones since the beginning three years ago. 9 chemos later I had run out of options, so the approval came through at just the right time for me.

I was surprised that I have to be observed for two hours following infusion this first time. Then the following times I have to be observed for one hour. Is this true for everyone?

Jan

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Phil
I want to thank you for your advocacy and encouragement. My PET showed that I am NED on Herceptin and Xeloda.
My onc says I will be eligible for tdm1 when I need it !
Best wishes to both of you !
Pat

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knitterjan- I was observed the first time for 30 minutes, then 15 minutes, now I can leave as soon as they unhook me! Have you ever been on Herceptin? If not, maybe that is why they are observing you for so long? Or maybe you are their first patient on this drug? Hopefully you were reaction free!

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The first infusion took 90 minutes followed by 90 minutes of observation, next time it will be 60 and then the following time and all subsequent infusions will be 30 minutes
, and that's every three weeks, first day following treatment and I have no side effects

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@bzg....I don't know how I missed your post.... your story is an awesome inspiration! I am her2- but I just read where someone posted that the her2+ meds may work for her2- patients under certain circumstances...thanks for sharing your story and wishing you continued success!

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standard observation is 90 ' first time. then decreases. s/e of fever, chills, fatigue set in day 3-4 usually. s/e decrease over time as body adjusts.
We are having Stage IV Rights Rally this Friday , at Royal Sonesta Hotel in Cambridge, Mass. 9:30 -12:30, all are welcome as we greet This FDA Commissioner. She will be talking about the " new " drug " Kadcyla " , ( she delayed it over 2 yrs , denying it to 45,000 pts ) and playing up " toxicity " concerns ( it actually has less side effects, and is more effective than older chemos. ).
We feel it may very well be a cure for many already, and more whenever This FDA gets around to full approval for all Stage IV her2 + , when wil that be , 2016 ??

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My husband tells me my chemo brain was doing its thing last eve. 90 minutes is not two hours, so tomorrow my infusion will last 90 minutes with a wait time after that of 90 minutes. My liver is not doing well at all, lots of tumors, so the onc has lowered the dosage for tomorrow.

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Best of luck Jan. today is day 4, between gardening and cleaning out the chicken coop I was tired, actually took a short nap. Last night a touch of nausea fixed by a dose of zofran!!!!
This has been so easy so far, but I keep waiting for the "I ickies.
Later...about 9:00,feeling icky, was real tired today but just started feeling icky

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