ATEMPT Clinical Trial - Roll Call
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Hi everyone,
I just decided to enroll in the trial. I will find out what arm July 30 and then start treatment Aug 5. Was glad to find this thread and read through a lot of it as part of my decision making process, so thanks!
Laura0 -
Welcome Laura! Sorry you are joining us... but if you have to, well then the ATEMPT group is here to provide whatever we can....
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Laura-
Welcome to BCO! We're sorry for what brings you here, but we're glad you've found us, and hope you find the support you need as you begin your trial!
Please keep us posted on how it's going for you, we look forward to seeing you on the boards!
The Mods
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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.
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Am a little confused ... am considering switching to Kadcyla but all my reading says it's taken by itself, not in conjunction with another chemo med. Am currently on Herceptin/Perjeta and am still getting {mild} allergic reactions to the Perjeta. My body just does NOT like this stuff and I feel like I'm fighting the drug more than the cancer!
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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!
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Someone mentioned that there was another chat room with folks from ATEMPT who were further along that this group. Is it worth looking at? Can someone send me the link? Has anyone else found other ATEMPT groups out there? Ours is the best, of course!
Just trying to gather up any info. I can before I start!0 -
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!
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I have enrolled in the ATEMPT Trial too. I will find out this week or next week which group I will be in and when my treatment start day is.
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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!
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Hello Ozoner,
I hope to get into Group 1 of this trial which is T-DM1/Kadcyla. Group 2 is Paclitaxel and Herceptin and that's why I was asking about wigs. Just in case I'm in Group 2, I want to know what kind of wig to purchase if I need it. No, I am not a dancer, but I am staying positive.
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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!
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Welcome Laura too! Looks like you and TinyDancer will be starting together.
How are the rest of you ladies? I'm hoping everyone is feeling good enough to be too busy to check in here often!
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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!
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Laura... I was exactly where you are ... Had two initial infusion dates, depending on when the confirmation came from the "independent lab". Wanted to go with the first date, 12/16.... and LATE (as in just a bit before 5 pm) confirmation arrived. The next morning, which it seems to me was also a Friday, I registered! Another day and I'd have been delayed until January..... Stay positive.... Maggie
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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!
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Thanks guys. And, now, I just learned that - unless some miracle happens in the next 27 minutes - my lab work has expired and I have to go in for more blood work tomorrow. Seriously?!!
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The wait is over. I got TDM1! Starting next Wednesday. Words of wisdom anyone???
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Words of wisdom....RELAX!!!! And forget any thoughts of wigs, hair cuts, etc!!!!!
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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
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sorry, one question, is anyone or has received radiation while getting Kadcyla? I start radiation next week
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Swiss - Yes I had concurrent rads and T-DM1 (kadcyla)....
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https://am.asco.org/questions-remain-about-optimal-treatment-her2-positive-breast-cancer
Good summary from 2015 ASCO.
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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.
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Laura--now we can welcome you to the TDM1 club. ;-) The advice I would give you is this: You've got a job to do, and it starts Wednesday. Go in there dedicated to getting the job done over the coming year. It helps to have a family member or pal go with you to the hospital, so if you have someone you can rely on, definitely ask him/her. Every woman seems to have different SEs (or none at all--I think the women who are sailing through treatment don't bother to seek out a forum like this one, so we're not hearing from them). So just take things as they come. It's a relief to get the thing started, so good luck for Wed. and report back here!
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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!
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Hi Everyone- just thought I'd check in with you all to say THANK YOU for doing this trial... I elected for off trial treatment and am now unfortunately having adverse affects from the Taxol which will be cut short. After week 8, my rash and neuropathy was very significant. They held Taxol for 2 weeks and the symptoms subsided. I received the 9th dose and the neuropathy returned more severely. It's not just numbness and tingling, but weakness with an ataxic gait along with shooting pains in my legs and feet. Last week was held again and MO said I am likely done with Taxol but will make a final decision this week. She reminded me the reason for TDM1 is because Taxol is just too toxic for many women. At this point I am ambivalent. On the one hand, relieved that my MO is so cautious about proceeding through neuropathy and that I only have to continue with Herceptin- but on the other hand feel terrified about not completing 12 Taxol treatments.
I admire your bravery to do this trial and hope for good results and minimal side effects for everyone!
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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!
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Kerry - You've got an amazing group that you work with, so have to believe you'll have the best advice currently available. Backing off from neuropathy that is getting worse... yep, they have your back for sure!!!! When you appeared here and I read your situation I thought the trial was an excellent option for you. Hey, I'm not triple positive ( just Her2+++) so things look very different to me! Just might be that "a hit of paclitaxol" is the ticket for the triple positives among us. I honestly thought you were getting some guidance to opt out. That being said, T-DM1 does seem to offer a lower toxicity option target for BC that is Her2+++. Please keep posting here.... You never know how your experience might help others ... but know it will!
Maggie
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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.
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