Neratinib Clinical Trials

Boo,

I am dealing with the rash right now- it started on the front of my legs and it is doing OK there but my hands are horrible- very itchy and red- Ive tried just about everything on them. My doc also said she saw patches of it on my back but it doesnt bother me there!

Kristy

I tried to add mine- also added that I am on the real drug (no placebo) since I actually know- will see if it shows up when I post!

1rarebird,I don't understand why there would be a difference in gender. it is supposed to check the HER2 on the blood brain and be a follow up after the herceptin from what I understand. I would certainly find out if the reason was only gender. Now there may be other reasons I don't know about. I do know I had a rough time with this med. I took the reg dose 4 days and got dehydrated and could not eat or drink anything. the diarrhea was not the cause of my quitting but may have been after while but the nausea was the biggy. I am so proud of those who could take the real stuff. I could not have done it for a year and then I worry about it coming back in my brain and not being able to have something to take care of it. I will just let God take care of it I guess. I wish you the best!

Carolyn

Hi 1rarebird,

Sorry you are not able to join the trial. I am considering this trial but am still receiving Herceptin. A friend of mine was going to join the trial but just found out it has been closed to those with node-negative status. I had isolated tumour cells (ITC) in the first node, which is for some reason considered node-negative, but will find out if this excludes me when I meet with a trial coordinator in a couple of weeks. So maybe you would not have qualified anyway?

Best regards to you

Boo--  Yes, I see the male exclusion criteria in the study design.  I suppose the main root of my disapointment is my doctor telling me for almost a year that when I finished Herceptin this trial would be available for me.  I didn't think I needed to double check him on that, but it turns out he was wrong.

The exclusion of males from breast cancer clinical trials is a major problem in the search for optimal therapy scenarios for men.  I hope that the 'powers-that-be' will someday realize this and start requiring the drug comapines to include males before signing off on the design of the studies.

bird

Bird,  I agree completely about the shortsightedness of excluding men.  I also didn't think I had to indepedently check what my surgeon, oncologist, or radiologist told me, so I learned the hard way.  Are you familiar with www.uptodate.com?  It is a subscription service (as low as $13 for one week and you can print or cut, paste, and save in Word)?  It is my standard reference and they update stories regularly through the year incorporating newly accepted research findings.  They had a story on male BC. 

Is reconstruction covered for men as with women under the 1997 law?

Kristy,  Did you have a lumpectomy?  I had substantial bilateral surgery to my radiated breasts and am very happy with the results.

Boo

when I started the trial it was closed to those without node involvement at that time. I did have several nodes involved so that is why I was in but now that I tried it I wish I had not even tried it. that is me and not everyone else. I was just so sick! I am glad KristyAnn could go this far with it. I was so sick I would have rather died than feel like that for a year. I cheer for those that can do this and say don't feel bad to those who can't. Must be something else out there for those that need something else. Carboplatin was really hard on me too. Maybe a connection. It killed my brother but he had head and neck cancer. Too weak to take the Carboplatin I guess.

Carolyn

Bird:  Sorry you are unable to participate but good luck to you.

Kristyann: I had tissue expanders put in place at the time of my mastectomy and had my implant put in after I finished chemo.  After all that healed, I went back for my "accessory", (nipple). While I won't be posing for playboy anytime soon, I'm happy with how it looks. I am still constantly conscious of it as I received the teardrop saline implant. With everything I went thru, mastectomy, lumpectomy, chemo, expanders, implant..the worse had to be the skin graft for my nipple.  It was taken from inside my groin, near the crotch. That sucker took a good month to heal and was painful.  After a year and a half you wouldn't even be able to tell. It was taken from there because the coloring is almost exactly the same. Good luck to you.

As for everyone else, I wasn't really bothered by the skin rash until the warm weather set in.  It appears I have patches on my stomach and my shoulder. A few times at night I find myself scratching without even thinking.

Hi All

Just wanted to post a quick update on my Mom.  She went through the screening for the clinical trial, which included a brain MRI.  We thought they had checked her brain with the first round of screening but it turns out this was not done.  Apparently due to the cost, they don't do brain MRI's unless the patient exhibits symptoms indicating brain involvement.  (I find this quite unbelievable as spread to the brain is common with breast cancer according to what I have read!)  Anyway, to cut a long story short: they found multiple brain mets.  Horror of horrors!  

She is now undergoing whole brain radiation for 2 weeks.  After this they will repeat the MRI and if there is no progression she will join the trial. 

I am very sad and scared now.  Have taken some time off work to be with my Mom and go to her appointments with her.  She is amazing though.  She has moments of anxiety but mostly she is full of courage, determination and even has her sense of humor in tact.  Not sure I would be the same in her position.

Anyway, still holding out some hope for the clinical trial.  I know that Neratinib would be a good option for her as it passes the blood brain barrier.  But Herceptin would also reach her brain after the radiation as radiation disturbs the blood brain barrier.  

Still fighting but the picture is a lot bleaker now. . .

Just a word here to let you know that I will receive Herceptin until the first week of September -as requested by my onc (one full year post-surgery).  Then 2 weeks after that last dose, will start the trial.

Until then, will continue to read your post .

Shell

I went for my 9 mo muga on 6-11. Ive never had any problems with any of the muga scans and my score has always been high 70 to 85. After they injected the isotope my heart rate was erratic and was high up to 170 bpm. They did three tests and came back inconclusive.At my follow up after EKG my Dr. told me I had a heart attack and ordered an echo. He said they were going to phase out Mugas and uses echos anyway. Still havent gotten the results from echo, but thought Id put this out to you guys that have more mugas to do. I feel that the isotope had something to do with this but Dr. says no. If I had a choice, Id do the echo. Cora

Hello All!  I haven't posted in a long while.  I started the trial in late Feburary and the SEs were immediate.  I have been dose reduced two times and now the four pills seem to work OK.  The big D is just about every morning until my system is cleaned out and I am good for the rest of the day. On my face, I have started getting under the skin teenage acne!  Hurts terribly and then goes away after two days and a new one emerges. Anyone else have this issue?  Food related?  Who knows.  So, I am 5 months in and 7 more to go.  I have lost alot of weight (which was needed), but what a way to lose.

Franci & KristyAnn,ya'll are my heros. I am so happy you are able to do this. I wish I could have but just was not strong enough. I know you will help many others just like those that did the Herceptin. I am your cheer leader because I know this is not easy.

Carolyn

Wishing you all the best. and hope that the microcalcifications are nothing to worry about.  In my thoughts and prayers

Vashti:  How is your Mom doing.  I hope that they will be able to lick the mets she is having.

Welcome Mary- Glad you found us!