Neratinib Clinical Trials

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  • Frankie_
    Frankie_ Member Posts: 422
    edited November 2009

    Hi Mountains1day:

    I'm new here and recently diagnosed. I am learning a lot from everyone. What do you mean by:

    And may cross the (Blood/Brain/Barrier) in you post??? regarding this drug?

    Frankie
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  • Estepp
    Estepp Member Posts: 6,416
    edited November 2009

    Hi Frankie,, I am so sorry you have joined our Breast Cancer group... :(.. but you can learn a lot here and make GREAT lifetime friends,,

    Chemos cannot cross the Brain blood barrier meaning... the chemo cannot get to our brains.

    Chemo is to treat the whole body systemically... to rid and stray cells that might be hiding.. and KILL them.

    But chemo cannot get to the brain.

    Her2+ breast cancer is know to go to the brain...

    BUT... drugs like Tykerb and this new one they are in trail with are showing good results. They CAN get to the brain.. ( saying this way so it makes more sense)

    Honey... if you wanna chat... PM me... I will help you understand anything I can about Her2+ Breast Cancer.

    I am ALL done with treatment.. as of Oct 13th.... I had Chemo... Mast... rads..... Implants... Herceptin...

    As far as the toxicity... my Rads Onco and regular Onco told me that I... and ladies like me.. are kind of test patients..:(

    Since many of us had AC with Herceptin and some ( like me) with radiation over the heart.... time will tell... I was told...  if I have heart problems.. they think it will be in the first 7 yrs after treatment., :(... so far.. my heart is GOOD...

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  • Frankie_
    Frankie_ Member Posts: 422
    edited November 2009

    Hi Estepp/Laura,

    Thanks for making feel so welcomed into this group Smile Your response was very informative!

    Wow, it's a lot to take so much info in. I am trying to arm myself with as much info as possible. I wasn't aware that chemo didn't go to the brain, especially hearing stuff about chemo-brain.

    I know I will have many more Q's... Thanks for your invitation to PM you.

    I need all the support that I can get, to navigate my way through all this!

    Frankie

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited November 2009

    Welcome Frankie,

    Chemo brain is the side effect from regular chemo and means the spacy, cant concentrate and whatever else- even though the drugs dont get to the actual brain cells like they think these newer drugs can.

    Keep coming back- there is a wealth of information on here and a ton of support!

    Kristy

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  • my2boys
    my2boys Member Posts: 339
    edited November 2009

    Thank you KristyAnn and God Bless YOU for sharing your journey with us who are considering this clinical trial.

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited November 2009

    Good Morning- almost Friday thank goodness. I went in today for my blood check on my way to work- no appointment and no orders in the computer- so I guess I will have to go back this afternoon- really aggravated me. I drive by the center on my way into work and on the way home so I prefer to do that rather than travelling there in th emiddle of the day-- Oh well, Im sure my research nurse will apologize and she is really sweet. Next time I will call day before to verify though!

    1 oz of almonds have 190 mg of potassium and 20% of the daily recommended of Magnesium- stopped on the way to work at Walgreens and picked up two different kinds of almonds- Im gonna beat this potassium and magnesium problem!!!!!!!!!

     Seriously if someone else joins the trial and has major issues with side effects resulting in the potassium and magnesium deficiency, let me know- I have researched and found MANY foods that will help with the issue!

    Kristy

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  • Lisa1964
    Lisa1964 Member Posts: 944
    edited November 2009

    Kristy Thank you so much for directing me to this thread.  I was all ecited about starting the trial, but after reading about your problems, I am a little worried - no make that a lot worried.

    I had my MUGA, chest x-ray and blood work yesterday and today I go in for a mammo - my first since surgery, this oughta be fun.   Then I am scheduled to start the drug Dec.2.  I have life-long intestinal issues that I told the research nurse about and she did not seem to think it would be a problem.  We shall see.

    Have a great day ladies.

    Lisa

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  • Corinne6
    Corinne6 Member Posts: 311
    edited November 2009

    Starting the neratinib trial on the 30th.  Hope I get the drug instead of the placebo! Anyhow, how long and what do you take for the diarrhea?

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited November 2009

    I started the drug on Oct 7- I am still taking 2 immodium in the monring, 2 midday and 2 at night- I have really esperienced the far end of extremes on the side effects. My potassium was still low today so I am upping my potassium supplement to two tablets a day instead of 1 BUT they are leeting me stop the magnesium supplement. The magnesium was giving me MORE diarrhea so it was hurting more than helping- hopefully I will get all that out of my system in a couple of days.

    My nurse said most people stabilize within 2-4 weeks on the diarrhea so Im a little longer than that- someone else online told me it took them 2 months to get it manageable- IM READY for that to happen!

    Kristy 

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  • gk2bc0
    gk2bc0 Member Posts: 56
    edited November 2009

    Hi! I'm glad to find you! I started neratinib yesterday, November 19th. I am so excited to be a part of this study, and finding others. I've been through all the blood, xrays, EKG, ECG etc.  I heard from my dr office that there's been a report of liver problems and I am to go in for a baseline liver panel after one week on the drug.  So far (2 days) no SEs...either it's too early, or I'm in the control group.  Either way, I know this is a good thing to be doing.  After all the news this week, I am even more committed to funding research to prevent breast cancer. Are you all in the Army of Women?  After the flak she got, I think Dr Susan Love's response was a good one.

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  • meco
    meco Member Posts: 20
    edited November 2009

    Finished all my pre-screening tests(MUGA,chest x-ray, EKG) on Thursday and meet with my oncologist Wednesday to get my pills. Pretty excited but also have concerns about the heart and diarrhea. It's so great to see so many of us on this sight. Best to everyone!!!!!! Hey does anyone know what phase this trial is? I'm thinking Phase one.

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  • meco
    meco Member Posts: 20
    edited November 2009

    I had AC followed by the year of Herceptin and my Onc is very excited about this trial and I start my meds on the 25th. I questioned the heart issues and he said so far it has not been a problem and that is why they follow up with regular MUGA's.

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  • PinkME
    PinkME Member Posts: 3
    edited November 2009

    Hello to all! I have just completed 4 treaments of TCH and 8 more months of Herceptin. Friday 11/20, I obtained a "clean" bill following final CT scans, ECHO, and blood work.  My oncologist has asked me to join the study.  I am completely freaked by the possible side effects, as I seemed to have suffered all (except the liver damage) in the first 4 treatments. I had a lot of gastro symptoms with Herceptin alone, along with myalgia and headaches!  I must say that reading this topic really helps me. 

    Funny, I was never afraid when I was diagnosed.  Having gone through this first year, I do have fear.  Maybe I am just tired.  KristyAnn, you are just amazing!  Thanks for sharing your symptoms and your solutions.  I am most conerned about being able to work with the constant diarrhea and pain if I get the Neratinib. 

     In any case, I am taking a week off to celebrate this wonderful Thanksgiving in New Orleans with my family!  We leave on T-day very early and plan about 5 days in the residential section of the Quarter, where you can actually sleep at night!  My buddies at the infusion centre and I have started a support group called Pink Sisters.  Since my initials are ME, I am the Pink ME.

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited November 2009

    Hi Everyone,

    Side effects seem to have turned the corner and are much improved- Im sure taking me off the Magnesium tablets helped- but I was actually able to get outside and walk a mile and a half today- I havent walked the first 6 weeks of this trial due to diarrhea. Anyway- Good news finally in my fight with side effects. Im still taking potassium tablets and still some immodium-but only about 1/3 of what I was taking in the worst week of it!!!!!!!!!!!!!1

    Happy Thanksgiving to everyone and welcome to the group- it is nice to have more ladies joining in the discussions!

    Kristy 

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

    Hi All.

    Kristy, so glad you are feeling better, I hope you have turned that corner and the worst is over!!

    Frankie, sorry you had to join this club and I wish you the best. I hope bc.org helps you through this ordeal as much as it has helped the rest of us. 

    Estep, I had AC, Taxol, radiation and herceptin for 1 year and so far, my heart is doing fine and as far as the elevated liver functions go, the side effects appear to be reversable once the drug is stopped.

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  • my2boys
    my2boys Member Posts: 339
    edited November 2009

    Hi vickib....

    Thank you for your post.  Where did you hear that the side effects appear to be reversable once the drug is stopped?  This is great news and I will feel much better about the study now.

    Have a wonderful Thanksgiving everyone.

    Anne

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited November 2009

    Hi Everyone,

    I cant get my potassium levels corrected- went in today thinking it would be great- I feel great, diarrhea has been less, taking 2 potassium tablets a day and eating lots of potassium rich foods and the bloodwork dropped from 3.1 to 2.8- so they doubled the potassium supplements today and two in the morning and I have to go to the hospital for a blood check tomorrow- ON THANKSGIVING! The clinic isnt open so I actually have to go to the hospital- what a disappointment!!!!!!!!!!! Oh well, Im plugging along, I think Im going to buy a juicer or make some homemade veggie broth which is really rich in potassium and try that too!!!!!!!! Im determined to get this mess under control!!!!!!!1

    Thankful that I have a full head of hair this Thanksgiving, thankful for my kids, family, friends- online and in person--------all to say I am more THANKFUL than I am upset by the physical situation right now. I hope everyone finds MANY MANY things to be thankful for tomorrow!

    Kristy

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

    Kristy - I cant believe all of the troubles you are having! I hope the additional Potas. helps!

    Anne - I finally found my paperwork, it was noted under the side effects.

    May you all have a happy & healthy Thanksgiving!

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited November 2009

    My potassium was back up to 3.1 today- they doubled the supplements yesterday- 2 tablets twice a day- these things are HUGE- so I dissolve them in liquids and drink it- Ive discovered 2 potassiums, 1 packet hot cocoa and 1 scoop Isopure protein powder works pretty well. Anyway, got to hospital at 1 and was back on the road home by 1:24 - which was nice since I left the turkey, green beans and yams in the oven LOL for our 2 PM meal. Doc called with results before 2 PM- stay at 4 tablets and get rechecked on Monday!

    I also made a gallon pot of vegetable stock- all kinds of rich veggies and strained the juice to use in other dished- hopefully that will help. Its looking like I am going to need to AVOID dairy not just cut it way back- almost any small amount of dairy starts up the cramping and side effects even worse. Good thing I cook a lot- I can modify almost any recipe to be what I need and family will have to adjust.

    Vicki- you are my role model- Im going to catch up and get evened out like you SOON!!!!!!

    Well back to playing and drinking this hot cocoa concoction!

    Kristy 

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited November 2009

    The trial coordinator at Univ  of Penn called me on Wednesday. She said they have just signed their paperwork with the drug co and have not yet opened up to registration yet.  She said that the trial definitely will not be full when I am finished Herceptin (April). That was good to know. We left it that she will call me when they are ready to meet with me and we will do the initial appointment so I can meet the onc and get my questions answered.

    One question for you guys - I am finishing Herceptin in April and my daughter is getting married in June. I would rather wait to start until AFTER June if they will let me, or if not, then start immediately in April so i can get the 2 months of adjustment in prior to the wedding festivities.  Do you have any idea if 2 months is too long to wait? Of course I could get the placebo anyway and then diahrrea wouldn't be a problem. I swear I can never spell that word. Maybe if I have to write about it enough, i will remember how to spell it - diarrhea, diahrrea, diahr....it never looks right to me! Lol

     I really think I am going to do this trial. I am kind of excited about it, although my family does think it is  a little crazy to want to do more after everythign I've been through.

    Happy Thanksgiving to you all and thank you for all your support.

    Amy

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  • Frankie_
    Frankie_ Member Posts: 422
    edited November 2009

    Hi Estepp/Laura,

    I sent you a PM around November 18th. I then went down south to visit Family for a week. I was wondering if you came across it. Looking forward to your response and to learn from your experiences. Laughing

    Frankie

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited November 2009

    Amy,

    I finished Herceptin in April 2009 and started the trial in October= I think the limit is finishing Herceptin within the last 2 years so 2 months is OK. Another patient at my center is on the drug and has diarrhea- she only has to go about 3 times a day so hers i much milder than mine- I am on the extreme end of the side effects- i would think 2 months would be OK even based on the craziness I have dealt with on this drug.

    Kristy

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  • gk2bc0
    gk2bc0 Member Posts: 56
    edited November 2009

    I've been reading all your posts...i'm glad to hear the diarrhea eventually lets up. I didn't have anything but a sour stomach for a few days before it began, once or twice a day...manageable. Until Thanksgiving evening and overnight!  immodium helped but the sour stomach stayed with me so i only took liquids. I developed a headache and took some tylenol, but eventually that made me vomit. Finally relief and i slept most of last night. So, today I am on brat diet foods and staying close to home.  The onc's office says to call if I dont' feel good,  but I am never sure how urgent it is when the side effects are just what they said to expect. Since i signed on, they've found that some people experience liver damage which is one reason we are supposed to be vigilant, I guess.

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  • traceyz
    traceyz Member Posts: 745
    edited November 2009

    HELLO MY HER2 SISTERS!!! I AM NEW ON THIS THREAD AND I HAVE BEEN SCREENED TO GET IN THE TRIAL. I WAS ALMOST THERE BUT MY WHITE BLOOD CELL COUNT WAS A LITTLE LOW (COMMON IN AFRICAN AMERICANS) SO WE HAVE TO GET THAT UP AND I WILL QUALIFY FOR THE STUDY. SO PLEASE SAY A PRAYER FOR ME AS I REALLY WANT TO GET IN ON THIS STUDY!

    TAKE CARE LADIES AND I WILL KEEP YA POSTED!

    TRACEY

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited November 2009

    Welcome Tracey!

    Keep us posted on your progress- I started October 7!

    Kristy

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  • traceyz
    traceyz Member Posts: 745
    edited November 2009

    HEY LADIES, AS I SAID BEFORE THE ONLY THING THAT IS KEEPING ME FROM THE STUDY IS MY WHITE BLOOD CELL COUNT. ITS A LITTLE LOW. THE ONC THINKS THAT IF SHE SWITCHES ME TO ARIMADEX INSTEAD OF THE TAMOXIFEN THAT THEY WILL GO BACK UP. DOES ANYONE KNOW OF A SUPPLEMENT THAT HELPS WITH WHITE BLOOD CELLS??

    THANKS,

    TRACEY

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  • k4katz
    k4katz Member Posts: 240
    edited November 2009

    Amy, if you are going to U of Penn you must live near me...I am in Sourth Jersey just about 15 minutes from Philly.  Luckily there is a study site over here as well so I don't have to cross the river for my appointment!

    Kristy, hope you are doing better!  I can't believe all the issues you have had!

    I have my one month follow-up tomorrow.  So far, no side effects!  I hope I am getting the drug but even if I am getting the placebo it is neat to be involved with the study.  Plus I get another onc looking me over every few months, which can't hurt!

    *Hugs*

    Kristin

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited November 2009

    Hi Everyone,

    Im home from work and waiting on todays potassium check- I had to go into the hospital lab on Thanksgiving to get it checked since on Wednesday it was going down again and was 2.8, TDAy was back at 3.1 so they have left me taking 4 tablets/day instead of 2- I feel A LOT better and side effects have lessened - so maybe I am getting back into balance and things will settle down.

    Neratinib is an appetite suppressor in my opinion and when you combine that with trying to take 4 HUGE potassium tablets a day- Im not getting a lot of food in and losing weight- which is OK as long as it is not too fast LOL. Went shopping on black Friday and bought some new work clothes!

    Kristy 

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited December 2009

    Well dang- my potassium was down to 2.9 AFTER upping the potassium tablets to 4 a day since last Wednesday. Now the plan is to take 8 tablets a day for 2 days, a potassium sparing diuretic daily and NO neratinib for 2 days- trying to get my body back in balance. My onc actually called a nephrologist to discuss what to try next after its been out of whack for so long- hopefully this will work and then I am probably looking at a dose reduction based on the potassium toxicity.

    Kristy 

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  • Warrior517
    Warrior517 Member Posts: 355
    edited December 2009

    Thanks, girls, for sharing so much information. If it wasn't for this blog, I would of never known about this trial. I called my onc today and they don't participate. Come to find out, there are only two cities in Michigan that DO participate. They are both 2-3 hours from METRO DETROIT! Weird..why they pick cities that are so far from majority of the population here. So...my question. Can I participate still? Do I have to get a new onc up north? or can my current onc take care of me?? How often do you have to see the trial drs?? I assume its every qtr for the first year..then how often after a year??? Do you think this is feasible for me? I hate to miss this opportunity. I am Her2 positive AND Estrogen positive. I also participate in the bisophate (boniva) clinical trial, too.  Sorry for so many questions, just want to know if this is worth driving 6 hrs round trip. Will they be opening any other sights??? Hmmmm.....lots of questions! Sorry!!!

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