Neratinib Clinical Trial

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vickib
vickib Member Posts: 1,184
edited June 2014 in HER2+ (Positive) Breast Cancer

Hello Beautiful Ladies!

I have been unable to get on here, I have not had a computer at home in a long time. I was wondering if anyone has participated in or has heard anything about this drug/trial. I am getting tested (heart & ct) later this week and should find out if I can get into this trial. I am very excited and scared at the same time. From what I have read, the diarhea is terrible. I was lucky with AC, Taxol and Herceptin, no nasty side effects that could not be handled by meds.

    

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  • snowyday
    snowyday Member Posts: 1,478
    edited May 2009
    http://www.cancer.gov/search/ResultsClinicalTrials.aspx?protocolsearchid=6172687  I haven't heard about this drug yet but found these sites that include the drug, these are closed clinical trials, I will read up on them and you can as well.  I didn't even know this drug was out there, so I am interested in it and the possible side effects.  Good luck
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  • vickib
    vickib Member Posts: 1,184
    edited May 2009

    Hi! I just found out that I am in the trial and should start and find out what I will be taking Tuesday (Tykerb and Xeloda or the Neratinib).I barely made it in, my heart is just good enough and the lesion on my lung is just over 10cm, criteria is 10cm and over. I will let you know how it goes.

    Hope you have a wonderful weekCool

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  • vickib
    vickib Member Posts: 1,184
    edited May 2009

    Hello Everyone!

    Just wanted to give you an update.. I have been on the Neratanib (the trial drug) now for 2 weeks and so far, I have had a few cases of diarrhea but the antidiarrheal meds pretty much takes care of it other than that, I feel good. I will be getting a CAT scan in a few weeks to see if it is working on my lung mets.. I had several spots removed in my left lung in March but apperantly there was one that they could not get to and another in my right, that is the one they are concentrating on. 

    I am starting to get a little nervous. Wondering if I am doing the right thing, wondering if I should have just taken the regularly prescribed Tykerb and Zeloda combo but then I think, why not me because someone else helped us by trying the drugs we are taking now and have helped keep us alive and keep the beast at bay, at least for a while anyway. I guess we will see. I HATE this disease!!!!!

    Sorry if I am rambling and not making much sense, just having one of those days and I am super tired.

    I wish you all well! XOXO 

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  • orange1
    orange1 Member Posts: 930
    edited May 2009

    Hi Vicki -

    I hope the neratinib evaporates that stupid lung met.

    Best of luck to you. 

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  • ejlj
    ejlj Member Posts: 211
    edited May 2009

    vicki,  I think your very brave.  I hope this lapatanib is just what your body needs to kick this cancer in the @ss!  Keep us up to date with your scans.  Best wishes.  TIna

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  • Cal-Gal
    Cal-Gal Member Posts: 30
    edited June 2009

    Dear Vicki,

    Thank you for your great example of courage by participating in a trial.

    Very often I think about the women that were brave enough to participate in trials, that have now resulted in the drug treatments that we are lucky enough to be able to recieve.

    I just finished six rounds of TAC-and just started Herceptin, will be on for one year.

    Right now I think about those women who not long ago participated in the Herceptin trials.

    Good Luck and keep us up to date!!!

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited June 2009

    Hi Vicki!

    I am also being considered for another Tykerb and Xeloda vs Neratinib study and will know in July if everything is a go.  I found your post while trying to research the SE with Neratinib so I can brace myself :>  I already discovered xeloda is nicknamed exploda...LOL!!  I am not sure which med I will get until they assign me to an arm of the study.  I am scared, but thrilled to have another possible weapon in our arsenal.  How did the neratinib work for you?  Have you had any improvement with the neratinib?  I hope you had fantastic results and thank you for being strong enough to pave the way for others! 

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  • vickib
    vickib Member Posts: 1,184
    edited June 2009

    Hi Cal Gal! Sounds like you are finished with the nasty stuff, Yeah!! I had no problems at all with the Herceptin and I hope the same for you. I wish you all the best with the Herceptin and hope that is exactly what you need to kick that cancer to the curb.

    I looooove LA! My pic was taken at Teddys 10 days before my diagnosis. I knew something was was wrong just before my trip but I did not want to face the music till I came back so I made my appointment a few days after I got back.

    Hugs and best of luck to you!

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  • vickib
    vickib Member Posts: 1,184
    edited June 2009

    Hi Chainsawz! 

    Have you already gone through all of the tests? I am excited for you and hope you will let me know as soon as you find out. The wait is terrible but hopefully it will be worth it. I was scared to death but I feel very comfortable now because they monitor you very closely. I just have already had a few Echos and they came out just fine, had my CT yesturday but unfortunately it will most likely take several days before I get the results.. You know how that goes! I have been on the pills now for 42 daysbut again, the only side effect I am experiencing is the diarrhea but I can keep it to a minimum if I watch what I eat.. Suddenly I am lactose intolerant so I have taken it easy on that but I love spicy food and cant always stay away from it so I do pay for that but the Immodium usually takes care of it. Other than that, it has not been too bad, I still stay active and am enjoying life as much as I can. Please contact me if you have any questions, I will help you as much as I can. You are so strong for doing this as well and I hope by doing this, we will help our BC Sisters live a long wonderful life like we all deserve.

    Take care!

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  • Marsha56
    Marsha56 Member Posts: 86
    edited June 2009

    Vicki,

    I think it is great to do studies I would guess I have done about 20 of them each one has worked for at least a year or more. But then that stuipd canccer finds her way back.... I think my body is so sweet it needs the sugar...LOL I was lucky enough to be the first to be on Trykerb before FDA

    approved it. I also met the woman who from the formula... It took her 15 years to get it to study amazing. Anyway keep us posted!

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  • vickib
    vickib Member Posts: 1,184
    edited June 2009

    Wow Marsha, you are quite the woman!! Thanks for everything you have done, I really mean that!

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited June 2009

    Vicki - thanks so much for the info I don't feel so scared now!!  I can handle diarrhea, but I hate the nausea....yuck :<  I'm glad to read not everyone experiences this....whew! 

    I will start all the tests and scans beginning July 1 and if I pass then I will start July 22nd.  I'll keep you updated.  Thanks so much for the support!!  Lisa

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  • vickib
    vickib Member Posts: 1,184
    edited June 2009

    Hey Ladies! It seems to be working!! I just got word that the "multiple pulminary nodules have reduced in size (the one they are monitoring reduced 50%) and is responding to the chemo". The others they could now barely see. I am at work, have to go but I was so excited I had to share. 

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited June 2009

    I am elated to hear your news!!  50% is a huge reduction - wow!!   Thanks for sharing with us :>

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  • Seven11
    Seven11 Member Posts: 162
    edited October 2010

    Vickib, congratulations!  I wanted to let you know that I am close to Cincinnati too if you want to contact me. 

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  • vickib
    vickib Member Posts: 1,184
    edited June 2009

    Thanks so much, I appreciate it!

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited July 2009

    Vicki - I hope the neratinib trial is still going well for you!  I did not make the study since they found a small mass with the brain MRI...darn!  I will be getting cyberknife and then tykerb\xeloda.  Does neratinib pass the blood\brain barrier?  If so, that might be a good option for me :>  Best wishes to you!!

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  • vickib
    vickib Member Posts: 1,184
    edited July 2009

    Lisa - I am so sorry about the news but I have heard good things about that particular cocktail.and who knows, maybe that will be just what you need. Please dont give up hope! I wish you and your beautiful family all the best sister and I will check on it for you. If you have any other questions or need some support, please let me know.

     I love your saying, it is beautiful!

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  • vickib
    vickib Member Posts: 1,184
    edited August 2009

    How are you doing Lisa?

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  • beebusted1
    beebusted1 Member Posts: 40
    edited October 2009

    Good morning all.  I too have joined the neratinib study.I finished my last herceptin 6/9. Am undergoing the necessary exams now and hope to start in a few weeks. Not looking forward to any of the side effects, but if the brave souls did it for me during the herceptin trials, its the least I can do. 

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  • magentagirl
    magentagirl Member Posts: 101
    edited October 2009

    You are all so brave to do a trial and I am thinking about it. My onc happens to be participating which I found out by contacting Wyeth and was given a phone number for the trial which happened to be the research arm of the onc I go to! So, that is good, although I worry what he will think of me if I don't do it. Someone was supposed to call  me today to spell out particulars but didn't. Plus you all are so smart-probably more so then who is going to call. i have two concerns. One is with the cost. I understand that Wyeth pays if one's insurance doesn't. But our insurance has a cap (I think it is a million) and I'm not sure I want to have three mugas and chest xray and what all on my tab, essentially shortening our coverage time. Also, I have very bad veins and only one arm to use and I am nervous about all the extra sticks for the MUGas and blood work. as I recall, for each MUGA they have to stick you twice. Do they have to stick you for an echo? And is it okay to have that instead of the muga? I would appreciate anyone's input on this. Thank you ahead of time. Now I am going to see Where the Wild Things Are.

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited October 2009

    There is another thread similar to this one called:

    Neratinib Clinical Trials where several of us have joined the trial- I am closing in on the end of my first month on the trial. Come join us over there!

    Kristy

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  • beebusted1
    beebusted1 Member Posts: 40
    edited November 2009

    Wyeth (who was bought out by Pfizer I was told) pays for everything.  Any of my blood work, tests, drugs needed to combat side effects (if any) are all picked up by the drug company.

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  • nja
    nja Member Posts: 1
    edited January 2010

    Hello Ladies, I am also going to be in a trial study for the neratinib HER2. I was told that al my testes will be paid for by the study hope everything goes well. I start  later in this month.

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  • eva226
    eva226 Member Posts: 1
    edited February 2010

    Hi!! My name is Eva. My doctor asked me if I wanted to join the Neratinib clinical trial. I am still deciding.When I was 36 I was diagnosed in March of 2007 with stage 2a her2+ bc. I had a lumpectomy and no lymph node involvement. I underwent ac/taxol chemo and radiation and one yr herceptin. I am undecided on what to do, join/don't join.... any advice? I don't know what to do!!!

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited February 2010

    There is another thread similar to this one called:

    Neratinib Clinical Trials where several of us have joined the trial- I am closing in on the end of my first month on the trial. Come join us over there!

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