Herceptin & Tykerb Together
 

Oh, how I love this forum.

On another thread I learned that Lapatinib = Tykerb, and that some of you are taking Tykerb with Herceptin, and some are also adding Xeloda. That's really good to know.

The material I got about the Lapatinib/Trastuzumab (Tykerb/Herceptin) study says it's a Phase II trial.

Those of you on the combo--are you in the U.S.? Are there any issues with insurance covering it? Any other thoughts?

Re: Herceptin & Tykerb Together
 

Hi Amy,

I read your postings today and I am sorry you are having to deal with progression/recurrance news. I get so scared to think about how this disease can morph into different areas of our bodies - just isn't fair.

I am responding to you on this question because I think I am in this study. I entered this study due to being Stage 2 and having the perfect storm, so to speak. I was given Tykerb from March 2011 - August of 2011 along with Herceptin. I did not have to pay for Tykerb since it was covered by the drug company for the trial. From what my oncologist told me about this drug is that Herceptin attacks the HER2 cells from the outside and Tykerb attacks from the inside of the cells. I am keeping fingers crossed that it works like they are hoping it will. Rest of my treatment is under my signature line.

Stay strong - my prayers are with you!

Jessica

Re: Herceptin & Tykerb Together
 

Jessica,

Thank you for responding. I read about an early-stage study that showed really great results like yours.

The one I'm looking at is for stage iv. My onc explained it about the same way as yours did.

Thank you for your good wishes.

Re: Herceptin & Tykerb Together
 

Hi Amy,

I am in the US and on the Tykerb / Herceptin (and Zometa) combo - although not part of a trial. I am also prescribed Xeloda but currently do not take it. My insurance would not approve Tykerb without Xeloda so my onc continues to prescribe it for me. I told him that since it stopped working for me months ago, and the combo of the Xeloda and Tykerb was too much for me, I made the decision to eliminate the old and continue the new. He acknowledged my decision but has to continue to prescribe. I have promised to go back to Xeloda, without argument, if I need to. So far my treatment, sans Xeloda, is working for me as my tumor markers are in normal ranges and my energy level is rebounding.

Wishing you well with your situation ~ Jen

Re: Herceptin & Tykerb Together
 

I am on this combo and not doing a trial. I have been NED for 14 months, and taking the tykerb to hopefully help prevent brain mets.

My ins did first deny the tykerb (because I wasn't taking xeloda), but I appealed and they decided to cover it.



Laurie

Re: Herceptin & Tykerb Together
 

Amy,

I did this combination for six months and was kept "stable," but then had progression. The main objective was to have Xeloda dissipate the tumors and then be maintained on Tykerb and Herceptin (every three weeks). Disappointingly, it didn't work out for me, but HAS for so many others (Ceesun? and LK1, for instance). If you are considering this regimen, I wish you the BEST; it is so freeing, you take pills and visit the clinic once every three weeks, you don't lose your hair...some side effects are GI issues (easily controlled with diet), skin discolorations, and thinning nails. A skin care routine, suggested by our dermatology department, is Cerave cream and white Dove soap and it makes a huge difference when the dryness sets in.

Good luck, sounds like a plan. For me, it was one of the easiest. I know others have NOT had the same experience and detested it. It's individual, as we all know.

Karen

Re: Herceptin & Tykerb Together
 

Thank you, all.

I have a much better understanding of the whole thing now. That will help with my consult on Tuesday morning.

Karen--I'm really, really glad to see your updated signature.

Re: Herceptin & Tykerb Together
 

OK, folks, I found out why I need to be in a trial. Herceptin plus Tykerb has not been approved as a first-or-second line therapy. You can get it (and get insurance coverage for it) after washing out on five or six other regimens, but not if you're someone like me. I also learned that I have not technically "failed" on Taxol/Abraxane because I didn't have any progression while I was getting it.

Next week I'll do the tests (which includes a biopsy) and the following week I'll start the combo. I have quit taking Arimidex and eating grapefruit.

Re: Herceptin & Tykerb Together
 

Are you sure about this? My wife is on Lapatinib (Tykerb) + Trastuzumab (Herceptin) and this is her 3rd line of treatment. (first 2 were clinical trials). Incidentally, the "nib" drugs are Tyrosine Kinase inhibitors. Tykerb/Lapatinib binds the Her2 receptor from inside the cell. It is also thought to cross the BBB. The "mab" drugs are monoclonal antibodies. While studies have shown Lapatinib + Trastuzumab to be better than Trastuzumab alone, the data does not show an overwhelmingly exciting benefit. Nevertheless, the benefits of crossing the BBB are interesting and the data is increasingly seeming to suggest that hitting multiple targets (even the other HER receptors) is preferred to only using a single targeted therapy. Pertuzumab can't get here fast enough.

Re: Herceptin & Tykerb Together
 

@her2_newBEE--all I know is what they tell me. I'm actually happy to participate in the trial, whether or not I have to do it to get this drug combination. I just got a Master of Divinity degree after almost 30 years of practicing law, in large part because of a very strong desire to help make the world a better place. Being able to advance the science of breast cancer treatment is, in a very real sense, a benefit to me personally.

Thank you for your explanation of "nib" and "mab," and your summary of the current research. One thing my study will do is compare my initial biopsy tissue to the results of a new biopsy. That might yield information of general interest, and maybe even for me personally.

Re: Herceptin & Tykerb Together
 

My oncologist did confirm that she could simply prescribe Tykerb and Herceptin (without Xeloda). I don't mind being a lab rat, though. Maybe it will help someone else, and it won't hurt me.

I had to have a biopsy for the study, and would not have needed it just for myself. I'll be scanned every 8 weeks. I have to keep a journal of when I take my pills. The schedule's a little wacky because I have to meet with the research nurse and turn in the journal and empty pill bottle every four weeks, but the Herceptin infusion is every three weeks, and I have to have blood drawn just about every one of those times. (The blood test results are good for a week, so in cycles where the two visits are only a week apart I think I get out of the blood draw.)

The CT scan that I got for the study was done three weeks after the PET that showed progression. Everything stayed stable, on nothing but Herceptin, which I think is good news. I also had an echocardiogram and EKG, and my heart's doing OK. So far, anyway.

Re: Herceptin & Tykerb Together
 

Hi to all with blessings..
I am currently on tykerb..herceptin ..and switching zometa to the new shot xejeva. I received vaccine at university of Washington 3 years ago. I am Ned...tumor markers normal. But do get rashes.
2008 scissors right lumpectomy
3 months later liver Mets
Taxol..herceptin ..caroplatin
3 months later Ned
Vaccine 2009
3 months later Mets to bone
Zometa and tykerb
3 months later..Ned 2009
Presently..herceptin..tykerb
.xejeva shot
Scans in August and of course....scared
Just turned 50
All this happened age 45

Re: Herceptin & Tykerb Together
 

Hi to all with blessings..
I am currently on tykerb..herceptin ..and switching zometa to the new shot xejeva. I received vaccine at university of Washington 3 years ago. I am Ned...tumor markers normal. But do get rashes.
2008 right lumpectomy
3 months later liver Mets
Taxol..herceptin ..caroplatin
3 months later Ned
Vaccine 2009
3 months later Mets to bone
Zometa and tykerb
3 months later..Ned 2009
Presently..herceptin..tykerb
.xejeva shot
Scans in August and of course....scared
Just turned 50
All this happened age 45

Re: Herceptin & Tykerb Together
 

Correction not scissors ....stage 0

Re: Herceptin & Tykerb Together
 

I have been on tykerb 6 pills a night and herceptin every 3 weeks since march 2012...I am stage 4....my tumor markers went from 86 to 39 in jul 2012 and my pet scan was a lot better, spots in liver shrunk and bone mets disappeared....no problem so far with insurance, and not on a trial.....was on herceptin alone since sept 2011 and in feb 2012 it stopped working....

Re: Herceptin & Tykerb Together
 

Hi Amy,
I feel I am one of the lucky ones who received this combo in Dr. Edith Perez's phase two study for early stage. (Being stage III, didn't make me feel like I was "early stage.") As a matter of fact, I was the last patient to complete this trial down at Mayo in Jacksonville. The phase III is the one comparing the effectivesness of the combination, Herecptin alone, and lapatinib alone. My onc., Dr. Tan recently told me from the results of this phase III trial they are seeing that the manner in which I had my medication is proving most effective. I think I have even read where they are offering Herceptin to those who only got the lapatinib alone. I just had my four year check-up and everything is good.

I feel being in a study has decided benefits. One of the best for me was the "study nurse." I had a direct line to her in case I needed any questions answered or had any problems. She was wonderful. The study I was in looked at the safely of this combo. There were echo-cardigrams done every three months to verify I had no heart problems. I did learn to eat a low fiber diet during the treatment.

Good luck to you. I will keep you in my prayers.
Sandra

Re: Herceptin & Tykerb Together
 

Being in the study definitely has benefits. I'm being monitored more closely, and I love my research nurse. She is very accessible and helpful. I also get to see my oncologist every four weeks, and I love her too. She is very encouraging and supportive.

Re: Herceptin & Tykerb Together
 

That's great Amy, I am happy you have good people around you. I hope it is all still going well, and thank you for being on the trial
Dawn

Re: Herceptin & Tykerb Together
 

I have done one round of Herceptin and Tykerb on the sneaky side. I feel good. Not sure if we will keep up this regime when I return from holidays. I am glad you are seeing stable and have the upside of being in a trial too.

Re: Herceptin & Tykerb Together
 

hi,,i just received my 1st shipment of tykerb.. big fat orange pills,,,need to take 4 day,,,help!! im scared to start due to the side affects...any advice?i feel like im running already!!
thanks