Tdm1/kadcyla and Tykerb
 

Is anyone on these drugs together? I am currently on TDM1 and my neuro onc wants me to add tykerb because of my brain mets. He wants to try tykerb on the brain mets before radiation. I would like to hear if any one as this combination and if your ins approved it.

Thankyou!

Re: Tdm1/kadcyla and Tykerb
 

I have never taken TDM1 or tykerb, but I had a brain met. The met was treated with surgery and then 5 dosages of IMRT, or targeted radiation. It was a little too big (2.6 cm) and too deep for just one shot of stereotatic radiosurgery (that is, each tumor gets just one shot of radiation). I remember being very disappointed and needless to say, frightened about the surgery, as it seemed that several women on this board were able to have SRS.

Targeted radiation can be used even if you have several brain mets. Each met is individually targeted. There are a few types. One is Cyberknife, another is IMRT. If you decided to do brain radiation, ask your oncologist about using targeted therapy.

TDM1 has a good side effect profile, and tykerb crosses the blood brain barrier.

Good luck with your treatment!

Joan

Re: Tdm1/kadcyla and Tykerb
 

I don't know but you may be the first. I'm very interested so keep us posted. Wishing you a quick return to NED!

Re: Tdm1/kadcyla and Tykerb
 

Thanks. My ins just approved them both so I will add
Tykerb next week to my TDM1 dosage. I will let you know. If there are any others on this como, would love feedback.

Joann,
I have had targeted radiation in the past. My onc now wants to try high dose tykerb for a month before trying targeted radiation again.

Re: Tdm1/kadcyla and Tykerb
 

sdgirl , you are the first I've heard of, but have thought it makes sense to try . Praying for great results. what ins do you have ? i think we should start praising the pro-active, flexible ins co's , not just the cheap, looking for way out of paying ones.

Re: Tdm1/kadcyla and Tykerb
 

Phil,
I have Cigna. I am surprised they approved them both. I did not expect to get tykerb approved with tdm1. Also, thank you for all the work you have done and continue to do for tdm1.

Re: Tdm1/kadcyla and Tykerb
 

This is very exciting! Kudos to your ins. co., and to your creative oncologist! I had a great response in my brain to Avastin, and wish there was a way to combine that with Kadcyla. The diarrhea from Tykerb was awful for me, and no big s/e from the Avastin...

Re: Tdm1/kadcyla and Tykerb
 

Sdgirl
I would love to hear how it is going on kadcyla and tykerb. I just started kadcyla and was told to stop the tykerb I had been taking. I wanted to be proactive and try to prevent brain mets if possible but was told there is no precedence for them togeher and should hold the tykerb. I really had no symptoms from the tykerb so I hope you are sailing along and doing well with them combined. It seems to make sense to put them together as they combine herceptin and tykerb regularly.

Re: Tdm1/kadcyla and Tykerb
 

Just wondering what dose of Tykerb you take with Kadcyla, and how it is going?

Re: Tdm1/kadcyla and Tykerb
 

anmask
I'm guessing you're asking sdgirl but if not, I was on 1250 Mg (5 pills).
Cat

Re: Tdm1/kadcyla and Tykerb
 

I'm about to go on Kadcyla, and just went off Tykerb.

Tykerb crosses the blood/brain barrier, but has it been shown to actually do any good in the brain?

I just want to say I think Kadcyla is a dumb name for TDM-1. It makes me think of "Godzilla."

Re: Tdm1/kadcyla and Tykerb
 

Yes I agree it's a weird name. Who thinks these things up? Someone I know said the same thing. "I'll remember Godzilla with a k".
Good luck on the "Godzilla" treatment. Mine is so far so good.

Re: Tdm1/kadcyla and Tykerb
 

No symptoms on Tykerb? Lucky you! This may be TMI, but I had forgotten what normal elimination was like. And fingernails.

Re: Tdm1/kadcyla and Tykerb
 

Herceptin made my hair grow slower (when I had hair!). I'm not totally sure what caused what because my gastro system was all screwed up from the colon blockage a year ago. When I was on tykerb before it was a no brainer, mostly my nose ran (herceptin). When I put abraxane in my nails went and my skin was dry. I had small pimple like things crop up on my face, arms and legs here and there. I used cetaphil wash and lotion and was on low dose maintenance antibiotic and they all helped. My bowels eventually normalized but recently blocked again with this recurrence. Feeling better after 1 Kadcyla so I'm keeping my fingers crossed.

Re: Tdm1/kadcyla and Tykerb
 

An update on me. I have been taking tykerb and TDM1 together for three weeks now. I have increased diarrhea and nausea and also feel more tired. Also have pimples like rash on skin. I had tumor markers done on Friday. Do not have results yet and will find out if this combination is working. I also have a brain MRI in two weeks. We added Tykerb since we think TDMI on its own may have stopped working as my tumor markers doubled even though I had good scans. The combination is doable but is much harder than doing TDM1 alone. I expected that but what choice do we have. Just have to suck it in and carry on with the diarrhea, nausea, fatigue. My liver enzymes had also gone by 10 points yesterday. I take 5 pills everyday. Hopefully it is because of tykerb and not my liver mets. I will update once I find out my tumor markers. Fingers crossed.

Re: Tdm1/kadcyla and Tykerb
 

So sorry you're going thru so much but hopefully it's all worth it.
You said you're getting red spots from tykerb? It makes me wonder if that's what caused mine too. I assumed it was the abraxane. Like I said tho, I had so much going on I didn't know what's what.

I hope we don't get cramps from crossing fingers so much!

Re: Tdm1/kadcyla and Tykerb
 

red dots can be due to low platelets. L. has them, a chain of dort sacross upper right collr bone, individual ones elswhere , and a red area on inside of wrist. has had them all along as plats dropped below 100,000. maybe tyk. adds to tdm-1's plat effect. you are breaking new ground with this combo. Good Luck !

Re: Tdm1/kadcyla and Tykerb
 

My platelets are normal. I will probably be stopping this combo. My tumor markers went up for the second time on Friday and rising TM always mean progression for me. I have scans next week to confirm. My last scans on March 12 indicated regression so looks like the cancer is growing fast suddenly. I am so disappointed. I loved being on TDM1.

Re: Tdm1/kadcyla and Tykerb
 

I am so new to this group, however I've been doing ALOT of research AND praying each day for many of you as I see new threads...
I JUST found online "PracticeUpdate" that has so MUCH interesting, knowledgeable information, articles, etc from doctors...well worth the time to take a look at!!
I was reading about how this crosses the BBB...into CNS...more likely than other areas...
I'm questioning if it is more of us who are HER2+++ ER/PR NEG...thoughts anyone...rather than ER/PR positive...

Re: Tdm1/kadcyla and Tykerb
 

I know KDR's tumor mrkers went up while on t dm-1/pert, but no progression. Praying for good scans and a good tx plan for you . you sure seem to have a good doc, staying on top of things , using the latest tx's , and flexible tx., utilizing off label combos . thats what you late stage iv folks need, if only we had an FDA System that allowed it...