ATEMPT Clinical Trial - Roll Call
Comments
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Thank you Laura61 for sharing and special Congratulations on being in the home stretch!!
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NattyB-- I understand your decision about the BMX. I have to say, since my diagnosis, mammograms (of the remaining boob) are wrenchingly difficult emotionally--my anxiety goes through the roof. For me, feeling glad to still have that one around outweighs the yearly panic attack, but again, we are all different.
Ozoner, congrats on your clear mammo and saying adios to your breast surgeon! I hope never to see mine again. ;-)
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Ozoner, you look fabulous! Congrats!
Laura, we are getting closer to the finish line. Yippee!
NattyB, I am also receiving TDM-1 in this trial. I had my #12/17 on April 7th. So far so good. In the beginnig, I was tired the first few days after treatment, a little queasy and sometimes had a dry mouth. Nothing I couldn't manage. I just drank lots of water. Sometimes I would get a bloody nose and my finger nails are weak, bendy and split. But no hair loss or thinning. Unless you tell someone you have BC, they will never know. Good luck to you
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Thank you so much IsabelA and TinyD - surgery is 5/16 and at this point I'm hoping I will still have the option... I'm not a patient person so this is a learning experience:)
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Natty, I had a long delay between diagnosis and my mastectomy--from May to July--because of insurance issues. It was so difficult!!!! I wanted to get it over with. So I sympathize. Hang in there!
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Thank you Isabel - I'm reaching the point where I'm getting more frustrated with waiting that my mind wanders all over the place. I have a lot of work to do before I go on leave and am totally distracted by all things BC related - I'm on my own nerves at this point. Your wait was even longer - sheesh!!!!!
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Natty, definitely at first your mind is the 24/7 BC channel, and you cannot turn it off. During treatment I wondered if I would ever have a day where I didn't think about BC, and (1.5 yrs out from treatment) I'm happy to tell you that I don't think about it much anymore.
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Isabel - I sure am ready for a new topic. So glad to hear that there are other things going on in the world besides worrying about my stupid boob. How long were you on the TDM1 - is it the same length of therapy as TH?
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Natty, both treatments are one year. With TH you have 13 weeks of weekly Taxol with the hair loss & other side effects, and then Herceptin every 3 weeks for the rest of the year, which reportedly has no side effects.
TDM-1 is every 3 weeks for a year, so you may have some side effects all year. Mine, especially the fatigue, have gotten worse the more treatments I've had, but I think they're still mild compared to Taxol.
So getting all the side effects over in 3 months vs. spreading them out over a year was one issue I grappled with. But I decided to do the trial and am glad I did. I am almost halfway through, AN I have my hair!!
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Hi there. Just wanted to chime in having bc take over your mind! I couldn't think about anything else in the beginning and had to take sleep aids every night. I'm happy to say that now, still in treatment, it's much further back in my mind. In between treatments I practically forget about it and the treatments now seem like this nuisance I have to deal with (oh, that again!?!) Other people seem to have forgotten too, which is good and bad (mostly good!)
Now I'm just thinking ahead to how to not let this experience define who I am - it's been such a big part of my identity for the last year! I've stopped telling people just cause I don't feel the need as much emotionally to talk about it. I feel like I've sort of moved on.... hopefully it has too - would love for this to be a final divorce!!
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Thank you Serenity, that is my understanding of my TH schedule too given that there aren't any surprises at surgery. The SE time period is a consideration... every 3 weeks, every week, longer, shorter, hair, no hair.... Laura, glad to hear that it doesn't stay in the forefront forever. I'm in the nightly sleep aid mode right now and it still doesn't take me through the whole night - I cling to the nights where I get 5 hours of solid sleep. Since I'm still in this pre op, pre treatment phase I find myself struggling with this limbo between feelig totally fine health wise and knowing I wont be able to even shower in a few weeks.
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Just want to confirm what SerenitySis said--"reportedly no SEs" with Herceptin only: I had to stop TDM1 after 7 months because of a problem with low platelet count. I then finished out the treatment year with Herceptin only, and I can promise NO SE's. Ozoner also had to stop TDM1 early (for different reason) and found the same thing (NO SE's for Herceptin only). It's like you're getting nothing. Herceptin isn't a chemo drug.
Ladies, I will never forget waking up at 4 am every night after dx and then for months afterward and confronting the I HAVE CANCER terror, but it does go away. As all of us seem to have discovered, the anxieties do resolve themselves as time passes. Now I wake up at 4 am and think about other worries--there's always something to worry about! And sometimes the thought occurs to me: You're not thinking about cancer.
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I have treatment #9 on Tuesday, but I also have to have my annual mammogram (or half-mammogram now) since it's been a year since this all started for me. I'm feeling very anxious about it.
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Serenitysis... #9!!!! Crossing the half-way mark! Totally get the high anxiety with an upcoming scan. Take a moment to remind yourself you are currently getting an amazing treatment. So, chances of anything of merit showing up are pretty low at the moment.
Last week was a tough week for me, and a reminder of days of infusions past! Minor food poisoning, too much in common with some of my worst post infusion days! Feeling much better this morning, 7 days later. Did someone say stamina takes a while to return?
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Hi Serenitysis. #9 - that's more than halfway! Yay! I also have an upcoming mammo in May. I'm strangely kind of excited about it - looking forward to that little bit of good news that can hack away at one little part of doubt and worry that fogs my brain. At least, I'm trying to think about it that way! Good luck and keep us posted.
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Good luck to you Serenitysis, Praying it will be a plain old normal, boring, clear as a bell mammo.
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Thanks everybody. Fingers crossed
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SerenitySis-- As one in the same boat as you, I can tell you one good thing about post-BC half-mammograms: they take half the time. ;-)
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Hi Ladies! I have been offered this trial just yesterday. I hope it is okay to post here and ask a few questions. I am seriously considering the trial. If chosen for the T-DM1 I have a few concerns/questions that I am hoping you can help me with? I am sure before beginning you asked yourself about effectiveness of treatment since this is not standard of care, do any of you have any comments on that, or have some of you been on this for a few years that can comment? I realize this is a trial and the point is to research further to see if this can be offered some day for standard of care, or provide women like us with options. Has this trial been a strain commitment wise? I realize that I would be helping women world wide for possible advancement in treatment and that really appeals to me overall. I am also comparing side effects of both chemo/therapies-struggling with a few months of side effects, or getting through a whole year. I am post lumpectomy-Stage 1- 1.2 cm-grade 3-Triple positive. Port May4th-treatment to begin May9th. Anyone on this board triple positive participating? I appreciate any comments, or insight that you might have for me. So glad to have you all as a resource! Thank you,
Slapp
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Welcome Slapp!
You may want to send a private message to TTfan. She isn't here very often these days but is always available if you just get her attention ....
Maggie
TTfan was triple positive and was in the taxol/herceptin group.
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Hi Slapp-- I am triple-pos and was on the TDM1 arm of the trial beginning in Sept. 2013 and ending Sept. 2014. So I'm a veteran! Have you read through posts on this forum? I know there is tons to get through as it's been going for a while now, but there's a lot of information to be gained. If you prefer, send me a private message with your questions and I'd be happy to answer them.
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Hi Slapp-- I'm glad you found this forum. Have you read through earlier posts? There's a lot to get through, but you'll find good information. I'm triple-pos and was on the TDM1 arm of the trial 9/13-9/14, so I'm a veteran. I will answer your questions one by one:
I am sure before beginning you asked yourself about effectiveness of treatment since this is not standard of care, do any of you have any comments on that, or have some of you been on this for a few years that can comment? YES, for sure I worried/wondered about whether the trial would be as effective as the tried and true treatment with Taxol. My oncologist assured me that the clinical trial would never have been offered unless the researchers were confident that TDM1 in fact would be as effective as existing treatments, with the hope that it would be better (or at least present fewer side effects). I was treated at Dana Farber, the "home" of the trial, but before signing on I got another opinion at Sloan Kettering in New York. The oncologist there (tops in his field) said it was an excellent option--he recommended Taxol/Herceptin or the trial.
Has this trial been a strain commitment wise? Speaking for myself, I felt it was a privilege to be on the trial, and I did not view my commitment to it as a strain. I drove 3 hrs each way to Boston, every three weeks for a year, and I never regretted doing this.
I realize that I would be helping women world wide for possible advancement in treatment and that really appeals to me overall. For sure this is true, but I would urge you to first make sure this is the right decision for you. I was definitely glad, once I made the decision that I wanted to sign on, that my participation was of benefit to others.
I am also comparing side effects of both chemo/therapies-struggling with a few months of side effects, or getting through a whole year. My SEs were queasiness and some fatigue for a few days after infusions, but never vomiting and nothing that interfered with daily life; dry mouth; runny nose and bloody nose; and low platelet count. I had to stop getting TDM1 after 7 months because of the platelet count problem, and finished out the treatment year on Herceptin only (no SEs whatsoever). All the women on this forum have had variations of similar SEs, some worse, some better. You get to keep your hair. As Maggie suggested, TTFan would be able to advise you on Taxol SEs.
Anyone on this board triple positive participating? Yup, I am, and I'm now on Tamoxifen for that reason.
If you have more questions, feel free to send me a private message. Good luck with your decision!
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Hi all,
I've mostly been a lurker here but appreciate the insights. I finished TDM-1 about 6 weeks ago. I had pretty good luck with SEs, very few overall. But I'm finding that I'm still experiencing some of them even now--and seem to be developing some new little things, though that may be my mind playing tricks on me. My oncologist said the drug stays in the system for about 6 months, so I'm assuming this is normal.
But just curious whether others who have finished have experienced this. As I said, these are minor side effects but I get worried. My bones in my rib cage are achy & sometimes, though that could be because I started exercising again (including swim). My eyelids get this annoying twitch, which happened a few months into treatment but then stopped for some time, and now I've got it again and it seems worse. All this is sort of making me paranoid, including the fact that I thought last night I felt the tiniest lump in my natural breast (had mastectomy just on the affected side), though I had a mammo & u/s just 2 months ago, and I think actually this is the way my breast normally is, but I'm now second-guessing myself.
any insight on post-treatment stuff would be useful. I have a great social worker/therapist at MSK who told me that post-treatment anxiety is normal, and I think this may be linked to it, but would be curious to hear others' experiences. Thanks!
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NYwriter 77- I'm with you on the aching bones/sore muscles in the rib cage. Getting better and less frequent. Went to a chiropractor for 6 weeks as I ramped up my exercising routine after I finished infusions. Her view it was as much muscle as bone... Now 5 months out I have re-started all of my former exercise routines. Skipped my Pilates class today 'cuz, you guessed it, my ribs are talking to me at the moment. Congrats on finishing! Maggie
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Thanks, Maggie. That is helpful to hear. I can't help thinking about bone cancer when my bones hurt, though they did hurt on and off during treatment (the off is key to not worrying, I think!).
Yeah, I'm glad to be done & thanks for the congrats--it's just this post-treatment period is weirder than I thought it would be.
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Hi Slapp, I second the recommendation to slog through earlier posts, since the same question brought me and a bunch of subsequent people to this thread! I also got many opinions (some official and some friend friends in the field) and the advice was unanimous to do the trial! One person I spoke to in particular runs a cancer center that does not trials, so he was unbiased in that way. I know his wife well and he unequivocally told me he would advise her do the trial if she was diagnosed. My impression is that there is little doubt on the effectiveness and that the primary purpose of the trial is to study side effects.
My main side effects have been being tired for 2-5 days after the infusion, but then I feel pretty much normal in between. Some other annoying side effects, but nothing too bad.
Happy to answer any questions.
Good luck!
Laura
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HI Ladies, I wish i would read it before. I was also offered same trial at MSK center (and yes my MO is one of the top in the field) . However, I chickened out because I know this med is good for those on advances stages and i am stage 1,so i refused a trial and will start taxol + herceptin tomorrow. Now i am thinking did i do a right decisions?;
But too late to go back . Best of luck to all of you girls on that trial. Hope it works!
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NYwriter77-- Great news that you're done! It is a psychological adjustment, though--you've had a year-long job to do, and now it's over. I felt sort of untethered for a while when I finished. This resolved gradually for me. I didn't have rib or other bone aches, and I suspect your twitchy eye is just a coincidence (I've had that off and on forever). Back during my treatment year I had a cold and then a swollen gland in my neck--I soon became convinced it was a cancerous lymph node and found myself sobbing on the couch. At my next treatment i asked my research nurse about it, and she brought in the RN to do a little "gland poke"--the two of them got me laughing and that was that. From time to time since I finished treatment, the recurrence anxiety erupts into my usually cheerful, optimistic mindset. I've had a pulled muscle feeling in my lower back for a few weeks, which I'm sure was from the Pilates floormat exercises I do by myself (no teacher, no class). But one day I was feeling around back there with my fingers and it popped into my head that I had a spinal tumor. I went down the road toward irrational panic before pulling myself back again. I don't think anyone who's had cancer can totally prevent these episodes. That said, I think you'll find that you'll feel less anxious as the weeks pass. Try not to let worry spoil a perfectly good day--I remind myself often that worrying doesn't change outcomes anyway.
Viktoryak: Taxol/Herceptin is the standard of care, so you can be sure you're getting what's been proven to be safe and effective. Even if you had signed onto the trial, there was a 1-in-4 chance you'd be assigned to the Taxol arm anyway. I hope you experience minimal side effects. Once you get past Taxol to the Herceptin only part of treatment, I can assure you there are no SEs at all. Best of luck!
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Viktoryak: I agree with Isabelarcher. Don't second guess yourself! You made the right decision for you! There is no right answer, just what feels better for the patient. You are getting top of the line care!
#14 done yesterday. It was a long day (something was wrong in the lab and it took hours to get the results!) 3 more to go. Almost there....
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Laura61 ...... Wonderful to read you are 14 done, 3 to go! Let's see 9 weeks from now, looking at my calendar, that's the week of July 4th! .... will be over before you know it.
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