ATEMPT Clinical Trial - Roll Call

Hi Laura-- Let us know how things go on July 30. Waiting to find out which arm you get assigned to can be nerve-wracking. Best of luck to you as you go through this process.

MaggieCat--that CT scan must have taken a lot out of you. As I've said from day one of Adventures with Breast Cancer, FEAR is the worst part of it!

Kerry--it was really great to read that you experienced feeling normal while on a Taxol delay and that it made you realize you will be OK again after treatment ends. Also I want to hug your son for telling you to ditch the scarf or wig if and when you feel like it.

Last weekend I was with cousins I haven't seen since before my diagnosis. It's interesting to see how people react to cancer--most of the time they don't know if they should mention it at all. I'm very open about it with family and close friends, but I've kept the circle relatively small, not telling neighbors or acquaintances. I do like to educate people a bit about the different types of BC, which most people are completely unfamiliar with. I don't think I'd ever heard of HER2+ before I found out I had it--I imagine that's true of most of us.

Hi Heidi, on the ATEMPT trial those of us on this forum who got or are getting Kadcycla (TDM1) received that drug by itself, but there is one woman on this thread (Swissrn2002) who is on a different clinical trial in which she is getting Kadcycla and Perjeta together. Some of us on this forum got or are getting Taxol/Herceptin. In my case, I was taken off Kadcycla after 7 mos. and then received Herceptin only for 5 mos. Not sure if this resolves your confusion, but very best of luck to you in coping with the drugs!

There may be, Laura, but not that I know about. I believe I am the "veteran" of this particular forum--started treatment in Sept. 2013, finished Sept. 2014. When i started, the trial was pretty early in the enrollment process, I believe. So I'd be surprised if there are women much farther along. But maybe!

Welcome TinyDancer,

I joined ATEMPT about four months ago, and a great benefit is that you get expert care and follow-up. I saw on another site that you were looking at wigs. I'm preparing to donate mine to a wig bank, since I'm receiving Kadcyla, which doesn't hurt your hair.

The people on this discussion board are great, and their experiences have helped me a lot. They will be here for you, too.

Are you really a dancer? The women on here encouraged me to pursue what I love in life, and while I don't dance as much as before, when I do, it provides great joy. I've had five infusions of Kadcyla so far, and just know this is something you can do. You've got this!

welcome tiny dancer! I am in the 25% assigned to Taxol/Herceptin in Atempt. Not what I hoped for, butwhile not fun, it was certainly do-able. I did lose my hair, but never used a wig. I tried a few on, and hated how they felt so just make do with scarves and hats. I'm done with chemo and now on Herceptin alone til November. That is when it is nice to be in the T/H group. i'm all done with the hard stuff! The Herceptin hardly affects me at all. We will be here for you whatever group you get in. Wishing you all the best!

Just venting - was supposed to find out today which arm of the trial I'm in, but the HER2+ confirmation still hasn't come back. There's still some hope it could come back today, but I assume it's unlikely, and then tomorrow's Friday! Oy! I know some people find out the day of (mine is scheduled for next Wed) but I'm pretty type A. I guess this whole cancer thing is great way to test my (very limited) patience!

Laura, the waiting is so hard. I had at least 19 nervous breakdowns waiting to find out--I mean, you just want to know either way!

The wait is over. I got TDM1! Starting next Wednesday. Words of wisdom anyone???

Hi everyone. I had my second dose of Kadcyla/Perjeta. The transfusions are easy, no problems. This time no nausea, yay!!!!! However; I felt tired all day Sunday and on Monday I got a nose bleed that just wouldn't stop ( I live I CA and it's been in the 100s for heat, with air conditioner, it's really dry). Since it wouldn't stop and it was 7:30am I went to he ER . Labs drawn and packing with Meds to constrict the vessels, it begin to finally slow down. My plattettes on the day before chemo were 245, by Monday at the ER, they were 63. My MO said that's fine, it's to be expected. Wish they told me that. Anyways, no more nose bleeds and feeling good. I just have horrible dry mouth since first infusion. Ok now only16 more to go, come on liver, hang in there. I really want to finish the trial using Kadcyla/Perjeta. I want to wish all my trial friends good luck and no SE

Hi Swiss. I think I will be taking concurrent Kadcyla and rads starting next week. My sixth infusion is Tuesday, and my MO will schedule me with the radiation oncologist then.

So in spirit, I'm extending my hand from Tennessee to offer and seek support. I lived in Santa Clarita Valley for 15 years, so part of my heart remains in the Golden State.

Best wishes on getting set up for rads, Swiss. I'm curious and reluctant myself, but I do want to get this part of the treatment going. Talk to you soon.

Swiss, just want to wish you well with your platelet count and dry mouth. I had low platelets while on TDM1 but not as low as yours. (Lots of minor nosebleeds and bruising, but manageable stuff.) I had dry mouth that did drive me insane--I couldn't go anywhere without a bottle of water and gum. But it wasn't persistent--it came and went. Hope your SEs remain manageable!

Kerry, I am so sorry to hear that you've had this much trouble on Taxol. I don't know if it's comparable, but I had to go off TDM1 after 7 months, and at first I too was terrified of not getting the full course of treatment. But try to keep this in mind: our cancers--very small, node-negative HER2--may not need any chemo at all. We might all have been fine with just Herceptin. No one knows...until a trial is designed to test that. So any chemo we get is very possibly extra insurance--but not absolutely necessary. At this point it seems your doctor is about to conclude that the severity of your side effects outweighs the possible benefit of the treatment. I hope you feel better soon and don't worry too much!

My husband and I are leaving for vacation, so I won't be checking in here for 10 days or so. Best to everyone!

Well, I'm officially 1/3 of the way through treatment!!!

I've loft 20 pounds since April, and the MO says I've got to stop because much of the loss is coming from my muscles. My mouth is so dry and nothing tastes good, so I'm going to try eating more protein whenever possible. TTfan, was it you or Isabel who mentioned strength training?

So next step is rads, and MO said I might see more blistering because of concurrent TDM-1. I have one outing planned per month, and my goal is to be feeling up to travel.

Thanks for your continued support. I was rather depressed the past five weeks, and your posts on here have buoyed me up.