ATEMPT Clinical Trial - Roll Call
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I started my first treatment at Dana Farber in the ATEMPT (T-DMI) trial this week. Doing it for the HER2+ because tumor was removed and small. I'm feeling fine (today is day 4) except some constipation (that can be due to the stress with more snow and school closings!). Worried it has cumulative effects. Any thoughts if and when SE may occur? 1 year is a long time but it was a reasonable route for the HER2. I do not have a port, nor did the encourage it. They said they would find the veins on the one good arm and not to worry about that.
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Boston... Eat some prunes, dates, raisins, etc. Yep, had the same thing after infusion 1 & 2 and pulled out of it quickly. Pretty much feeling "like me", normal heading into infusion 5, Feb. 17... Port vs vein, Dana Farber must have confidence in their vein pokers! If you have that confidence, go for it! If not, a port is reasonable insurance!.... Maggie
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Boston45--My queasiness SE from TDM1 started immediately. Good sign for you that you feel fine on day 4! I also had a runny nose, no big deal. My SEs that developed later (several weeks/months in) were dry mouth, 2 episodes of mouth sores, and low platelet count (only sign of it was bloody nose and some bruising--it's not something you notice or feel). But I was very unusual in having these symptoms among women then on the trial. It's entirely possible to have no SEs. The important thing is that I felt like myself for the entire treatment--full of energy, went about my daily life as before, except for a couple of days of queasiness after infusion. So don't worry. And yes, those DF infusion nurses are amazing!
Would you mind telling me who your onc is at DF? Mine isErica Mayer.
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Isabel.. yep, I feel like myself too!!! Hope it stays that way as it did for you!
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Maggie, I think if you're feeling like yourself going into infusion 5, that you have smooth sailing ahead. Really, it's a great drug. So glad it's going well for you.
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Maggie and Isabel, good to hear about your experiences which don't sound too bad. Johara, you know that I'm thinking of you and will have a virtual celebration after your last chemo!
Central path was really quick for me. They sent the sample out last Friday (2/6) and I heard from the clincal trial nurse today that the HER2+ status was confirmed. Very quick as my surgical path was equivocal for HER2 and they had to run FISH for confirmation. I will be having my labs, EKG, echo and physical done on Monday or Tuesday with my MO. They plan to start tx no later than 5 days after. Excited and scared all at the same time!
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Be excited...... Honestly be excited..... just not so much as to be an echo issue!!!!
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MaggieCat, I'll keep that in mind :-) I start at MDACC at 7:45am (which means with Houston rush hour I'll leave home no later than 6:15am) and finish up around 3pm with the echo being the last test. The stress of morning rush hour should have worn off by then. I am mainly optimistic about getting started. Seems like it has moved slowily up to this point.
I know that I can't have my TE exchange susrgery until 6 weeks post chemo if I'm on the TH arm, but has anyone on the TDM-1 arm of the trial had exchange surgery while in the trial? Don't especially want keep these conrete cantaloupes on my chest any longer than I have to.
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Mom2threeboys--Yes! I had expander/implant exchange surgery while on TDM1 and everything went perfectly well. I had surgery in July '13, started TDM1 in September '13, and had the exchange surgery in early Jan. '14. It was delayed a bit because I had a problem with low platelet count. The head oncologist on the ATEMPT trial (Sara Tolaney at Dana Farber, where I was treated by another onc on that team), felt that to be perfectly safe going into surgery, my platelet count needed to be 100K. My plastic surgeon would have been OK with 50K, but the thing about this trial is, we're all starting out in good shape at stage 1, so they didn't want to mess around by introducing unnecessary health risks. Your "concrete cantaloupes" is priceless. But I gotta say, I flew to a destination beach wedding with that thing (between my surgery and the beginning of treatment) and even paraded around with it in a bikini, so it did the job! I hadn't worn a two-piece since I was 10--it was my way to say "to hell with you, breast cancer." The silicone implant is doing fine. I call that one Frankenboob, and the original one Organic Boob.
p.s. Wouldn't you know my first time on a Caribbean beach, and I couldn't go into the water deeper than my waist because of the concrete cantaloupe? Oh well, at least I was there--I made it! It was the thing I was living for through the diagnosis drama and recovery from surgery.
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Oh Isabel, I'm laughing at Franken and Organic Boob! I had a prophylactic mx on the other side so I'll just have Franken 1 and Franken 2 boob. So happy to hear that I won't have to live with these weird looking boobs for a year. They are like misaligned headlights. TE on one side has fallen off my chest and looks huge, while the othe,r which looks much smaller, actually has 50cc more and has taken up residence between my collarbone and under my armpit. I did want perky new boobs, but that one has taken perky to extremes! I just have to laugh and have great confidence in my plastic surgeon. He will have his work cut out for him and Im hoping he needs some fat injections along the way since i have a few areas just waiting to donate. Thanks for sharing your experience with the exchange surgery and a Cariibean celebratoin sounds just wonderful!!
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mom2three--When you're all done you will match! My Frankenboob is as perky as can be, while Organic Boob is where you'd expect it to be at age 53 and having nursed two children. I declined a "lift" to make them match--didn't want more surgery, and my husband loves me as I am. In a bra and clothes I look totally as I used to. OK, this has gone off the clinical trial topic, so that's probably enough. ;-)
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No more boob talk :-). I am currently scheduled for my first treatment on Monday, 2/23. Won't know which until I get there. I know they pre-medicate with corticosteroids for the chemo arm of the trial, but does anyone know if they also pre-medicate for the tdm-1 arm? Steroids throw my type 1 diabetes for a major loop and I just need to know in order to adjust/manage my insulin dosages. Will bring diabetologist into the loop too if needed.
Also, my liver function tests were all elevated (some slightly, some about 2x normal upper limit). Any idea where the cutoff is for acceptance to the trial. I've heard 3x normal limit to skip txx until it decreases, but didn't know if they followed the same rationale for acceptance? Are they focused on all 3 values or just one?
Thanks in advance for any info you guys can share. Hope everyone is having a wonderful week!
Cherie
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Hi all: I am out of the trial, but thought you may want an update. I have felt so much better since taken off the trial and taking Herceptin only. I met with the local oncologist today and I will now take my infusions locally instead of going to Indianapolis. They accessed my port today for blood work and called me after I left the appt to let me know that I am severely anemic (again). They called in an Iron pill and Vitamin C pill for me to pick up at the pharmacy tonight. I hope I can tolerate them. And I hope they do the trick! My appetite still isn't what it used to be.
I finished up the high intensity radiation last Thursday. Sailed through those without any issues. 16 days total.
I will continue to read this thread and hope the best for all that is on the Attempt trial. I really wish it would have worked out better for me... Cheers!
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Well, Bernie, as I've noted in previous posts, I also had to go off TDM1 and finished up tx on just Herceptin. They are still going to follow me for the trial, though--it's of interest to them for the future of the drug that I had a low platelet count problem. How many months were you on it? I had 7 months. They can definitely learn from us, and we got the benefit of the drug even if not a full year. Congrats on finishing radiation!
Cherie--For the first TDM1 infusion all they put in the IV (in addition to the juice!) was Benadryl in case of allergic reaction. I was offered Zofran (antinausea) and I think steroids but refused them--I wanted to see how I would do without the extra drugs, and I was fine. (As I've said, I was queasy, but not full-on nauseous, and it was manageable.) So, once you're there, you need to bring this up BEFORE they order the mixture--ask exactly what's going in there, because you have some say about it. As for the liver tests, I don't know much about this in terms of getting onto the trial. I only know my liver enzymes went up on TDM1 but that this was expected, and they went back to normal when I went off.
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Bernie - hope the iron and vit C supplements do the trick and lead to a boringly normal set of labs! Will be nice to finish up your infusions locally.
Isabel - thanks for the info and helpful tips. I'm a pretty vocal patient anda will be sure to ask prior to the mixture being created. I spoke with the clinical nurse for the study at MDACC and learned that to be admitted to the study, the limit on liver function tests is 2.5x the upper cutoff of the normal range. My highest is right at the 2.5 number so docs and nurses are scrambling to see what's going on. Liver CT scheduled tomorrow along with referral to gastroenterology or endocinology depending on results.
You ladies are always a great resource!
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Bernie, I. Sorry the T-DM1 SE were so bad for you, but as Isabel said, at least you got the benefit of some of it. I'm sure you will feel way better soon, especially once you get that anemia treated. I'm delighted both for you and selfishly that the high intensity RT was easy for you. Congratulations on another phase over and done! I will start the same RT regimen in a few weeks having had my LAST Taxol today. Hooray! Do stick around on this thread, you are a trial sister regardless and we all want to know how you are.
Cherie, hope all is well with your liver. My LFTs jumped up to almost 3x normal after Taxol #9, then back to normal the next week and stayed there without changing anything. They can really jump around for reasons we don't usually understand. Keep us posted!
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You are right, at least I did get some benefit from the TDM1 and I am very thankful for that. I was able to take 4 infusions of TDM1 October - thru Dec. My Onc in Indianapolis did not mention following me on my path for the trial - but I do have a follow up appointment with her in April.
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TTfan, congrats on last Taxol! One huge box checked off...
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TTfan, so happy you've completed the last chemo! Cause for celebration 🎉 and very proud you've managed it with grace. Still chasing the liver issue. No MRI due to TEs so I'm off to CT in a few minutes. If it is anything other than fatty liver I won't be able to start the trial. Still hopeful!
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Good luck Mom!!!
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Thank you for all the congratulations! It feels really wonderful to have that behind me! Even though the side effects are certainly all still with me, psychologically it feels so much better knowing I don't have a next scheduled "poisoning"! I meet with my radiation oncologist for the first time this coming Monday to plan for the next phase, and get my first triple dose Herceptin on Tuesday. So treatment goes on, but hopefully with much less impact on my life.
Mom, please do let us know when your liver issue gets sorted out!
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just got word today was accepted into TDM arm of trial -felt weird to be so excited about a chemo treatment but I was! Sort of felt it would be win win no matter what ...but was hoping for TDM - I see various side effects for both so don't want to get too excited. In fact - I hate the whole ordeal - that started nov 7 but just want to get moving - and sorry to ask this again but those getting TDM 1 - how many have ports? I am opting for not..... I hope to meet my other UNC TDM 1 "buddy" one of these days - I start 2/26 - has anyone lost hair on it? Just curious - thanks for this chat room and support - am grateful to find other HeR 2 + women!Amy
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Amy, I'm happy for you that you were randomized to TDM1. To answer your questions--TDM1 does not cause hair loss, and a port is not an automatic necessity. Some women prefer them to getting stuck every 3 weeks, and some experience problems with their veins so have no choice about getting a port. But there is no reason why you shouldn't try treatment with no port. It worked for me. Good luck with the treatment!
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Amy ....
... Oh and
Got all my hair... I'm heading for infusion #5 in early March..... I think Nyssa is a lucky charm..... She worked her magic for you! Maggie
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I had my first 6-month checkup yesterday at Dana Farber (on the trial, you get checked every 6 months for the first 2 years, then every year for 2 or 3 years after that). My platelet count is on the rise and almost back to normal, so all is finally well with that. I asked the nurse practitioner whom I saw how the women on the TDM1 arm of the trial are doing, and she said, enthusiastically, "Great!" Just wanted to share that with those of you who will be starting treatment.
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Thanks Isabel... Great news for you ( and for us too)....
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congrats Isabel!
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Big congrats, Isabel! Happy that everything was good news for you on your follow up.
I have good news myself this morning. Just learned that I am on the TDM-1 arm of the trial! Wlll have my first infusion Monday and am relieved it won't be TH. The steroid pretreatment would cause such problems with my blood gluscose control for my type 1 diabetes which could last 3-5 days post tx...just in time to get ready for the next. So, that would have been a bit of a nightmare for me.
Going without a port for now as my TE is only about 1/2" below my clavicle on one side and the other side has existing issues with the chest wall muscles.
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Thanks everyone! Yay for my platelets!
Mom2Three (Cherie)--I just signed on to see if there was any news from you, and there it is. TDM1 is great news for you--so glad to hear you won't have extra worries about blood glucose control.
TTFan and Mom2Three, I see that you are both "triple positive" like me. I am on Tamoxifen for my small ER+ percentage. Have your docs recommended it for you? I started it after a few months of TDM1 treatment.
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