ATEMPT Clinical Trial - Roll Call
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Congratulations, Laura!! Good luck tomorrow! It's so encouraging to the rest of us that there really is an end. Let us know how it goes & how you feel when it's over.
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I had my yearly mammogram this week at DF--all clear. My anxiety level going in was a little better this time. There wasn't much to talk about at my doc appt, which is a really great thing! I thought she might want to switch me from Tamoxifen to one of the aromatase inhibitor drugs because I'm past menopause, but she says she will keep me on Tamox for at least 3 years (it's been 2 yrs 3 months so far) and then reassess year by year.
Laura--way to go! Reikion--so glad your rash cleared up and hope you're done with that.
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Thanks all. I'm so, so happy to be done. Just a couple more days of blech and then hopefully I'll be back to me. The onc said the drugs stay in the system for a while but drop off after 3-4 weeks. Still, she said I should hold off on a celebratory binge (well, that's about 2 drinks for me - I'm a lightweight) until she sees me again in early September. And, she said some side effects (i.e., bloody nose) could linger a bit longer than that too. I really don't care though! I'm done! Happy dance. Now, back to sleep....
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Congrats Laura on finishing! This crazy year is finally over.
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Laura... So pleased you managed all 17! Hope you'll check in every now and then to share your recovery experience. Maggie
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Congratulations Laura! I am right behind you with 4 treatments to go!! Enjoy your new life!! Can't wait!
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Hi everyone,
I am new to this forum, but it has been so helpful reading everyone's experience with the ATEMPT trial. I was recently diagnosed with Stage I BC, ER-/PR-, HER2+ and was offered this clinical trial. I am so overwhelmed with my diagnosis and treatment options and still learning about what this all means. Thankfully I have options. I am almost three weeks post lumpectomy and sentinel removal. I've had a horrible experience with seroma's and arm soreness, but I guess this is common. Anyways, I consented to the study last week and all my testing/screening happens tomorrow 7/13. I then will start treatment the following Wednesday 7/20. I guess my biggest questions are, how long does it typically take to be randomized? I heard up until the day of treatment... What is the earliest people found out? And was everyone fully recovered from their surgery prior to starting treatment? I am feeling better, but still dealing with some fluid build up and chest soreness. Also, is there any preliminary data out for those who have completed the first 2+ years? Any information would be great!
I find you all amazing and inspiring!
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Tee2-- Welcome to the forum and sorry to hear about your post-surgical issues. I was randomized to the trial a week or two before I started. This is going back almost three years now for me, so I don't remember exactly. Others on this forum, I believe, found out as late as the day before. This is very nerve-wracking! I think the important thing to remember is, either way you are getting the best possible treatment for our type of BC. I had a mastectomy in July and did not start treatment till September, so I was indeed fully recovered. I was lucky--no issues. As for preliminary data, my understanding is there won't be any trial data for quite some time yet--I believe until women on the trial have gone 5 years post-treatment. Anyone else know something different? When I've asked my oncologist how women are doing on the trial, she says great (but says she can't go into detail)--I do get the sense the breast oncology world is very optimistic about it. Good luck with this anxious, scary, topsy-turvy time--it's an emotional storm, that's for sure, but it gets better as you regain your equilibrium.
LindaMae--hooray for being almost done!
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Congrats Laura! I have 1 more! Cannot wait. Yearly mammogram was good too
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Hi Tee2! I was fully recovered from my surgery in June and started treatment with TDM1 in August. I found out on a Monday and started on Thursday. Tomorrow will be my 16th treatment. I remember my arm being very sore after surgery. It takes time to heal and the pain will eventually go away. I know what you mean about being overwhelmed with your diagnosis and treatment options. I'm sure we all were. Are there any support groups you can go to where you are being treated? I have found them to be very helpful. Good Luck!
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Thank you IsabelArcher and Tinydancer5! I appreciate the feedback and positivity!! I'm done with all the screening tests and I told them to call me ASAP once they find out my treatment. I can't wait to put this year past me. I'm so busy right now, three kids, full-time job and I recently went back to school for my PhD... Not sure how I'm gonna handle it if I get standard care, but I'll figure it out. If this study didn't exist, I would have to anyways :-) That's how I'm looking at it for now. Congrats to all of you who have finished your treatment or are near the end! What a great feeling that must be. Thank you for your posts! I love all the feedback! I'll keep you posted...
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Yesterday I went for my blood test for #16 and the results came back showing my Bilirubin number (1.6) was slightly higher than MSK's parameters (1.5) so I could either have another blood test this morning, or wait until next week. I went in this morning and today's test result is 1.3 and my Platelets were 83K, so I was cleared for treatment. #16 is done and I'm on my way to the finish line on August 5th. Depending on my blood test results, of course.
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Happy Thursday all! So pleased to "see" new faces ... and read of successful #16s (Wabals and TinyDancer). Received a great complement from my personal trainer yesterday... his view is my form, strength and stamina are back, comparable to pre-T-DM1 & rads. Looking back, been 8 months since last infusion, for me the 6 month point was huge...
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MaggieCat that is so great! You bring up a question I've been meaning to ask. I am very physically active and I am really hoping to continue this activity, maybe to a lesser extent, but nonetheless I want to keep exercising the entire time, whether it's 12 weeks of taxol/herceptin, then herceptin for the reminder of the year or TDM1 for 12 months. Is this possible?? Did anyone exercise through it all? I wonder if there's a difference between the two arms with exercise capacity... I would love to hear from anyone/everyone :-)
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Tee - I stayed with my personal trainer throughout... but the intensity had to decrease as the months went on. Power Pilates was the first to go based on discussions with the MO about joint aches (after infusion 3 I think)... Had to back off some yoga moves when acid reflux set-in ( infusion 9 or 10).... I tried to reference these things as I went through treatment,
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Hi Tee2,
I had more energy in the mornings, so I put that time aside for walking or Zumba gold.
My surgeon said to wear a lymphedema sleeve when I do repeated moves w the arm where the sentinel nodes were removed. One year after surgery, I have gone to Juzo soft sleeves with colorful designs (pictured in photo). The sleevs were, in my opinion, recommended in an abundance of caution, so after half a year I took my original sleeve dimensions and got a couple with lighter compression. Now I can fling my arm with abandonwhile doing Zumba dancing.
Sounds like you have a completely full life! I did something active or enjoyable each and every day, and you will be able to as well. For the first time ever, I had to factor in time to rest, and now two months after my last herceptin infusion, I'm feeling strong and engaged. Best of luck to you. This discussion board is uplifting and informative and you will be buoyed by many new friends
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Wabals - Congratulations on getting closer to finishing.
MaggieCat - It is encouraging to hear that all of you who have finished are doing so well.
Tee2 - I walked and biked through my treatments. It helped me to stay active, whether it be exercising, gardening, what ever you like to do. The place I go for treatments has a variety of monthly support and wellness programs available for free: Yoga and Pilates for Cancer Survivors, Art Therapy, and many others. Just make time to take care of yourself and rest when you need to.
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Thank you all so much for the uplifting news! I think I'll struggle with the "rest" factor, but I'll take everyone's advice and listen to my body, as hard as that might be... It's only a year... A crapy one, but I can live with that, if the end result is so positive, which it sounds like it is! Thank god for all the amazing women before us and research!
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Thanks Tiny and Maggie.
When we were in Fl I walked on the beach a lot which is great exercise. I got lazy when we came back due to the heat here in Va. and more fatigue towards the finish line. I plan on playing tennis when I get my port out (soon!) I have always been active and feel guilty but I will get back to it. In spite of that I have lost about 10 lbs as appetite is not as good.
Cannot believe I am almost done! Do not miss the every 3 week flights from Fl to Va for treatment!
Best to all!
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Tee2, my exercise is fast walking (outside or on treadmill in bad weather) and/or swimming laps 5 days a week. I kept this up all through treatment.
Have a great weekend, everyone.
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Congratulations to all those with good news and wonderful milestones!
Tee2, I remember just how hard it was to not know which arm I would be in til the last couple days before treatment started. I thought I would be emotionally fine with either one, but did get very discouraged for awhile when assigned to the Taxol arm. But that is all long behind me now - finished Taxol March 2015 and Herceptin November 2015. The upside of the Taxol arm is that while there are somewhat more intense SE than most people get with TDM-1, they are manageable, and mostly condensed into 3 months. I walked at least 20 or 30 minutes every day through treatment and during recovery afterward, rain or shine and felt better for it I'm sure. Not sure I could have done much more intense exercise then though. Hair loss can be prevented by cold capping, though I didn't choose that route. For me I didn't mind "looking like a cancer patient", given that I was one. I got some beautiful scarves, discovered that BIG earrings are fun, and met some amazing people and got support I don't think I would otherwise have gotten. The Herceptin only part was almost without any SE for me - maybe a day or two of slightly less energy, but nothing that stopped work or play. As I watched the TDM-1 folks go through a long year, I did occasionally think that I might, after all, have gotten the easier option. But then my son calls me a "pathological" optimist. The point being, you will be fine regardless of which arm you get into! I was able to work for two of the three months of T/H, and could probably have slogged through the third, but am fortunate to have good disability insurance and supportive co-workers, so decided for once in my life to take the easier road and took off til I felt ready to return after chemo and rads were finished. Best wishes to you regardless of your assigned study arm - but should you be in the 25% - I'm more than happy to chat if that would be helpful.
Love and best wishes to all my study sisters!
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Hi everyone, welcome Tee2!! I have 5 more treatments to go. I ended up having a lot of surgeries (5) unfortunately, so I stopped going to the gym. I do, however, do yoga several times a week and try to walk 45 mins. to an hour every day. I find now that I get winded about halfway through and have to slow down, but I still do it. I don't know if that's the TDM1 or what.
Wabals, I have also lost 10 lbs. and I was thin to begin with. I can't eat very much now before I feel full. I'm going to talk to my oncologist. I don't like it, I just don't feel like myself.
Congratulations to those of you who are finishing up!! It's a long road and a huge accomplishment.
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Thanks TTfan for all that information and sharing your personal feeling about the T/H arm. I do feel there are pros and cons to both arms, I really am hoping I will be OK for whatever arm I'm randomized to. I really appreciate your story, it is so nice to have such a great group of people here!
Serenity's I'm sorry to hear about all the surgeries, but congrats on coming along this far into the study, 5 more treatments that's great! I hope you get some tips from your MO for eating, maybe high caloric shakes/meals/snacks might help? Good luck!
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Hi Tee2. I was in the same boat, wanting to stay super active. For me, it was important to take it easy for a few days afterward TDM1. I learned the hard way after trying to stick to the norm after the first few infusions, but then feeling horrible a few days later. But, as long as I took it very easy the day of the infusion (huge nap!), slightly easy on Day 2 (maybe a short walk and then a big nap or reading in bed), and then easy Days 3-4 (maybe lying down in the afternoon but otherwise going about normal daily business), by Day 5 I was generally back to 100% normal with daily exercise (summer - 10-15 mile bike ride; winter - elliptical plus weights). I even managed to do a few stadiums in there! Everyone is different though, so you might have to learn what pattern works best. Good luck!
Laura
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A question for each of you ... How did you find out about the ATEMPT clinical trial?
I was interviewed this past week, specifically about my choice to participate in a drug related clinical trial. I may get a call back this coming week, who knows... I wonder if you found the trial or if it was suggested for consideration by an oncologist or other medical professional.... fyi I found the trial while doing research on Her2 breast cancer and contacted two participating locations for more information. Not much in the way of clinical trials happening on the SE coast of NC!
Thanks for taking a moment to share....
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I lost 35 pounds while taking TDM1--and that's why I switched to herceptin only in the fifth month, and I finished up in May. I've gained about 18 pounds back and hope to keep fit and have more muscle than fat in the gain. BTW, most energy drinks are soy based, so if you're ER+, you should ask your doc before drinking them.
Hi Maggie! My oncologist presented me with the drug trial option, and I jumped at the chance. Like you, I felt pleased to be contributing something out of all this. Also, the movie about herceptin--LIVING PROOF--puts HER2+ in a new light. Hope some of you watch it--I was so grateful to have seen it.
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Maggie my oncologist at Johns Hopkins told me about it. I could tell she was hoping I would do it tho she did not push it at all. In fact I said no at first then did research and changed my mind. She then said she thought I made the right decision
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Maggie, my Oncologist told me about the Trial during my first visit. He first suggested TCH. I asked if there was anything else with less side effects since it was so small andcaught so early. He said he was waiting to receive information about a Clinical Trial with a promising new drug that had minimal side effects. We discussed it. I read the Trial information and did my own research for the next two weeks and I decided it was right for me.
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Like Tee2 I too am new to this forum and look forward to learning from everyone's experiences. All of this is basically happening while we are in the process of moving into a new home. After an incisional biopsy I was diagnosed on 6/1/16 with IDC 1cm Grade 2 ER/PR negative, HER 2 positive. While the margins were clear, they didn't meet the minimum required and I had a revision of the excision and Sentinal node biopsy. The node was clear, but they did find DCIS. I was asked to participate in the ATTEMPT Clinical Trial by my Oncologist and have signed the consent forms. Barring any unforeseen problems, I am suppose to get my port and start infusion therapy on 6/26. At this point I don't know when they will let me know which arm of the trial that I will be on and am trying to maintain a positive outlook.
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Dear MIPat,
Welcome to the BCO community. We are sorry for your diagnosis but glad that you reached out to our members. Please keep us posted and let us know how treatment goes for you. The Mods
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