ATEMPT Clinical Trial - Roll Call
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Empamr-- It is so good to hear how well you're doing, and congratulations on your baby! You were a pioneer. I'm curious--were you treated at Dana Farber? I still can't get over how fortunate I felt when I walked in there for a second opinion and was greeted with news of the trial, with the alternative of Taxol/Herceptin but not TCH or ACTH. I'm a little behind you--I'm about 3 1/2 years out since diagnosis. Also feeling great. And I too was so happy to find this discussion group.
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hi Isabelarcher, ya you must have been one of the first too, ya I was treated at Dana Farber. Ann partridge was my oncologist, great people there, was that where you were? We probably just missed each other! Same here, at the time i was offered ACTH, TCH or TH, I had a few different opinions but in the end I was happy to have the trial option
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Empamr, yes, my oncologist at DF is Erica Mayer. I can't say enough good things about the care I've received there.
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From the Marianne Study .....
This was an international, randomized, phase III study designed to compare three chemotherapeutic anti-HER2 regimens: trastuzumab plus taxane (T+T), T-DM1 plus placebo (TDM1), and T-DM1 plus pertuzumab (TDM1+P) in 1095 women with HER2-positive, advanced breast cancer. Progression-free survival was similar among patients who received all three regimens (median PFS, 13.7 months with T+T, 14.1 months with TDM1, and 15.2 months with T-DM1 + P). Adverse events ≥grade 3 were higher in the T+T arm, but the difference was not significant.
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Wishing you all a Happy Thanksgiving
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Happy Thanksgiving all! I'm grateful for a clear mammogram last week, and for the amazing family, friends, in person and on line, who got me through the last two years! Thank you all for supporting me and each other through it all
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After 6.5 weeks and 33 treatments, I am thankful that my radiation treatments are finally finished
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TTFan and MIPat, it's wonderful to hear that you are doing so well.
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To all the ladies who have taken part in this conversation--
I take it as a good sign that we've all gone quiet for the past month or so. I just wanted to say I check this site often in case there is a new person (or a veteran like me!) who has questions or wants to compare notes.
Happy holidays to you all. This has been an important "place" for me and I'm grateful for the community.
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Isabel, I too check this site weekly and I have been wondering how everyone is doing with their treatment, either currently or after completion. I think it is very important to stay in touch with others who have participated in this trial.
Happy Holidays!
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Nice to read things are good in your lives! I so agree with you all... the support received here has been important in my "glass 1/2 full, not 1/2 empty, view of life" post diagnosis.
12/16/14 was my first T-DM1 infusion....two years later no evidence of cancer... !!!!!
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Congrats MaggieCat, that's great news. Hopefully we'll all have many cancer-free years ahead of us. I am 2 months out from my final infusion and I'm still struggling with some depression and anxiety, but feel like things are getting a little better. I lost 20 lbs. during treatment so now am seeing a nutritionist at Dana-Farber to get on the right track for gaining weight. My appetite finally returned about a month ago, but since the weight loss was over the course of a year I'm trying to learn to be patient. Good to hear from everyone
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Went for infusion #8 today which was cancelled due to an elevated bilirubin. I go back in three weeks and hopefully my level will be acceptable and can resume infusions. I will admit that part of me is grateful for a break. Kadcyla messes so much with my GI system and I cry so easily anymore.
My RBC counts are going up each cycle too. I've never had a hemoglobin as high as it is right now. Anyone else have this issue
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Hi, MIPat,
I commend you for your determination to stay with the ATEMPT trial, despite your side effects. I had four months on Kadcyla and then switched to herceptin for the remainder of the year. So my participation in the trial will show what happened and keep track of my stats for five years, and it was a blessing to have had the Kadcyla during the chemo phase.
My side effects were not as bad as yours (my blood tests were good), but I had worsening neuropathy, which my MO felt could become irreversible. I also was unsteady and almost fell over, for instance, when I leaned down to tie my shoelace. I just soldiered on, but when I look back, it was a hard time.
When you finish your treatments, you will put all this behind, but like my surgeon said, most people have a certain amount of PTSD after chemo and surgery. The sisterhood of this forum, the attention of splendid doctors, and the outpouring of prayers and kindnesses have transformed my life.
Best wishes to you for the new year, MIPat, and I hope you can stay in the trial. But don't stress, because even if you have to change your course of treatment, you have already made a great contribution to the study of this more humane treatment of HER2+ breast cancer.
Ozoner
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Happy New Year.... 13 months since last T-DM1 treatment.... Hoping we ALL have a healthy and happy 2017!
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Happy New Year all! I too am now over a year out from finishing Herceptin and almost two years out from finishing Taxol as my bushy head of hair can attest to :-) I really struggled with all of the hormone blocking medications, but seem at least for now, to have found a workable combination of tamoxifen, antidepressants, and exercise. Retiring a few weeks ago certainly doesn't hurt either!
I wish you all the happiest and healthiest possible year in 2017! I think if you all far more often then I actually post here
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It has been 5 months since I completed treatment and yesterday I had an "all clear" mammo. I have been on Tamoxifen for almost 1 year and in August my MO suggested that I begin monthly Lupron Injections because my Estrodial levels were too high due to a cyst on my ovary. I have no SE's from either and feel fine. Blood levels are back to where they were before my dx too.
I hope everyone is doing well. Happy and Healthy New Year!
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MIPat-- I didn't have elevated RBCs as far as I can recall--only depleted platelet count which cut short my treatment with TDM1. Good luck with your bilirubin reading. I think I did have elevated liver enzymes but I only found out later--my MO was not concerned about it during treatment so I guess it wasn't that high. As I've said before on this thread, when you get to the point that you can't remember the details of the treatment year, you know you're moving past cancer!
A happy and healthy new year to everyone.
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I am humbled by all everyone has gone through, and inspired by your kindness and courage. Have a happy, healthy 2017
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Wishing everyone a happy and healthy new year !!!
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Yesterday my bilirubin was still 0.1 above the standard allowed and it was 42 days since my last TDM1 infusion which is the maximum time. So, they have taken me off of TDM1 and I will be receiving Herceptin only until the first of August. I do have mixed feelings about it. Since I didn't have Taxol, it was my only chemo and therefore slightly raises my chance of recurrence. However, I have so much more energy and fewer side effects since it has been awhile since my last Kadcyla dose so I have to have faith that this is the right thing for me. March I have my next mammogram and I am approaching that with a little fear. I suppose that is how it will be in the future.
On a side note, I was told that enrollment is now closed for the trial as they have reached 500 participants.
As if this and everything else in my life isn't enough, I started having post-menopausal bleeding. An ultrasound should endometrial hyperplasia and the ER resident freaked me out about endometrial cancer. The GYN did remove a polyp and and endometrial biopsy came back negative. However, I am scheduled for a hysteroscopy and D&C the first week of February.
Ozoner thank you for your words of support, I'm sorry that it took me so long to comment on it.
Everyone, this is such a supportive group and I am appreciative of it. I hope that everyone is having a good start to their New Year
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MIPat, I was taken off TDM1 after 7 months of treatment because of my low platelet count (which just continued to get lower, even after two dose reductions), and I finished out the treatment year on Herceptin only. Like you, I was somewhat upset about this and worried. However, my MO at Dana Farber made me feel a lot better about it: She said that a one-year course of treatment is simply researchers' best guess--it could be that a much shorter course is plenty. (I believe there was one small European study suggesting that 9 weeks was enough.) Also, she pointed out that if I had been getting Taxol, that would have been over in 3 months (correct me I'm wrong, somebody--but in any case much shorter treatment than TDM1). So as she saw it, I'd had several months of treatment, and several months was plenty. The other thing to keep in mind is that researchers do not know, but believe it is possible, that all we HER2+ stage 1 ladies need is Herceptin (no Taxol, no TDM1, no nothing)--but this is unlikely to be studied, because such a study poses a level of risk to the patient that researchers find too high. All in all, would I have liked to finish the full year? Sure, but I feel good about these reassurances.
Thank goodness your endometrial biopsy came back negative--what a fright. As for your upcoming mammogram, I confess that I go to pieces every year when it's my turn. Last summer I did a bit better, so maybe this summer I will be better still. But we're stuck with at least a certain level of anxiety, and there's not much to be done about it.
The good news about Herceptin only is that there isn't a single side effect, so you are going to be feeling fine. Good luck to you as you move forward! And thanks for sharing the news that the study is now closed. We are all among the very lucky ones to have had the chance to be part of the trial, and more than that, to have had our cancers discovered very early.
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MIPat, I'm sorry to hear of your difficulties! I agree with Isabel about the shorter duration of Kadcyla likely being just as effective. I never understood why they did a whole year of it. No other chemo for early stage BC goes so long, and it is chemo, even if it is targeted. I guess they were so optimistic that it would be SE free they figured why not?
Taxol is for three months, for me it was weekly (with Herceptin) x 12, then Herceptin only every 3 weeks to complete the year. I have to admit that while hair loss wasn't great, I was very relieved to have the chemo part done so quickly. Herceptin for me too was very easy. I was originally so disappointed not to be in the Kadcyla arm, but later was grateful.
Hoping the bleeding turns out to be nothing serious and that you will continue feeling better every day!
And if anyone isn't scared at mammogram time, please tell us your secret!!
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Hi MIPat,
Sorry to hear about all the difficulties you are dealing with. I am glad to hear you have more energy now.
I wanted to share that I am also dealing with an endometrial polyp. After about 6 treatments of TDM1, my monthly cycles changed. My period would start exactly 2 days after chemo and was extremely heavy and lasted longer - something I had never had in the past. After about 3 of these cycles I saw my OBGYN since my oncologist suspected a fibroid. I had an ultrasound first week of Nov. Upon diagnosis of a polyp, I was offered a hysteroscopy or ablation. I chose to consult my acupuncturist. I am back to my regular cycle length and no heavy periods or spotting in between. The acupuncture treatments also help me with chemo fatigue.
My OBGYN was okay with me choosing to wait since I had discussed the acupuncture treatments with her. I will have a second ultrasound in February to re-evaluate. I will post back then.
I am also scheduled for my first post surgery mammogram next week --- anxious too -- looking forward to being done with it.
Wishing you the best,
Reikon
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Hi MIPat,
I just wanted to tell you how sorry I am to hear about your scare with the endometrial polyp & the additional procedures and surgery you have to deal with. At least your biopsy came back negative! It can feel so overwhelming but you just have to get thru it day by day. I have never gotten into meditation before thisbut it has helped me through my surgeries and treatment and beyond (I finished in October). I like the Calm app. You might want to check it out. I'll be thinking of you.
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Hi all, I had my 6-month checkup at Dana Farber yesterday (no mammo). My MO said that now that I'm 3 1/2 years since diagnosis my level of risk of recurrence is dropping. The five-year mark will be the time that level of risk returns to that of any woman. And she reiterated that my tumor was very small, as with all of us who qualified for the trial. I can never hear that enough. At this point she is ready to switch me from Tamoxifen to an aromatase inhibitor, but I had to have bloodwork to determine if I'm 100% post-menopause, so I'm waiting for results. She said if I have any bothersome SEs on the aromatase inhibitor, though, I can switch right back to Tamoxifen (which doesn't have SEs for me--I had horrible hot flashes, but they've gone away, and that was probably just menopause itself anyway). Since my cancer is only weakly ER+, she said the benefits of the one drug over the other are only marginal and not worth compromising quality of life issues. However, and this is interesting, she said there is some research showing that aromatase inhibitors may also have an inhibiting effect on HER2. So it's worth trying.
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p.s. Now that the trial has reached full enrollment, she said it would likely be a couple of years until conclusions are drawn from the study.
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Isabel - Congrats! So you did confirm the trial is closed? I want to modify the header to say that the trial is closed as of Jan. 2017 but was waiting... Sounds like I'm good to make the change... Maggie
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Hi friends. Good to see you on here again!
Did you notice the article about Kadcyla on the main page of this site? Pretty interesting (about the MARIANNE study).
Lately, I've been on the Femara discussion board after switching from exemestane. Symptoms have been new eye floaters, tingling and burning of the feet, muscle pain in my arms, joint pain everywhere, and even bone pain. I was limping along and becoming distressed about it. Who knew that hormone blockers would demand our attention!
When Femara started to be as problematic as the exemestane, the planets aligned thanks to three doctor visits, and I'm hoping for a better result. My Breast specialist said I still had one AI to consider and that Effexor and Cymbalta can also lessen SEs. I had ignored my joint pain and basically sprained my left knee, which spurred an X-ray ordered by my family doctor that revealed some arthritis and fluid on the knee. And, thankfully, my six month consult with my mental health provider was the next day, and she heartily agreed that since my Zoloft wasn't working any more, that she would transition me to cymbalta.
So, I know about the SEs of Cymbalta, but I am now hopeful that since it has a different action, that it will indeed make life a little better. Today is #2 of the transition and I will wait and see.
We are in a new year with so many possibilities before us. Blessings to us all!
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Sorry you are dealing with such difficult SE from the AIs! I had severe depression and joint pain on two of the three (Arimidex and exemestane) and my MO suggested Tamoxifen instead of trying a third AI. There's no good research to support one recommendation or the other - we just have to keep trying and be our own guinea pigs :-(. Lexapro and Tamoxifen is my magic combo at least for now. I hope the Cymbalta and Femara are yours!
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