ATEMPT Clinical Trial - Roll Call
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BellasMomToo, I was looking at Kolhs but they haveso many. I'll have to check Costco, thanks.
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Tiny - I bought two ( SensorGel Adv. iCool) based on reviews. I used it for several months. The cooling aspect worked, it was just too high for my size. My better half still sleeps on his. Maggie
While I'm here - Wondering how everyone is doing???? Have any of our Dana Faber gals heard when preliminary results will start to come out?
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Hey MaggieCat-- My Dana Farber check up (FIVE YEARS) is later this month. I'll ask my onc what's up with the trial.
I've been having some Tamoxifen side effects--gynecological ones. Lots of discharge, some of it brownish. I went through a MAJOR FREAKOUT because Tamox increases your risk of uterine cancers, went to see GYN--new young partner of my aging doc, and I did not like her. I had an ultrasound, which showed some thickening of uterine lining, which is typical on Tamox, and possible polyp, also typical on Tamox. GYN suggested hysteroscopy just to be sure it was nothing worse. Checked with my DF onc, and she said it was reasonable to get the test but nothing I described sounded like a uterine cancer. Then my symptoms completely stopped. So I have canceled the test. My DF onc suggested having the gyn redo the ultra in 6-8 weeks. By then I will probably find a new gyn office. Get this: When I asked this gyn if there were risks of the hysteroscopy procedure, she said, "there's a risk of damaging the uterine lining. and of course there's a small risk of perforating the bowel or bladder, but... I haven't had that happen yet!" and she literally knocked on wood. Would you go back to a doctor who was that flippant? I don't think I can. Anyway, that's my story--remaining boob check in late July is the biggie.
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Isabel, absolutely not! Don't go back to that doctor.
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Thanks for your understanding, TinyDancer!
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3 year checkup with surgeon and mammogram. All clear
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Wabals, congrats on your checkup. It's always nerve wracking waiting to hear those two words..all clear.
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Tiny Dancer thanks such a relief
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Tuesday I had my latest follow-up with my MO. This month marks one year anniversary of completing my infusions. Everything looks good. I go back in 6 months and in October I have another mammogram as follow up to the stereotactic biopsy.
Just curious. Does anyone feel that their memory just isn’t as accurate at it was pre-treatment? I am sure that almost two stressful years had a toll on mine
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MIPat = Congrats on 12 mths! Short term memory has been affected in my case. I finished infusions 11/2015. Discussed memory issues at my 5/2016 appointment. Had options - could see a specialist within the Cancer hospital looking into post treatment memory affects, could utilize on-line programs, see a counselor ( was it depression?), etc. My MO suggested simply waiting (18 mths) to give my body some time to come "back" (if I determined it wasn't depression in need of treatment with an antidepressant). Fast forward to 7/2018, memory is better though I still search for words in conversation. Do wonder if this is a side effect with T-DM1....
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Congrats on your great 12-month checkup, MIPat.
MIPat and MaggieCat, I have not noticed memory problems other than what you'd expect from being 56 and not 26 or 36--friends my age all have the same issues (can't think of a word or a name, forgot something someone told you), so I don't think it's related to TDM1, at least in my case. Also, as MIPat suggests, the stress of the whole cancer ordeal could be the culprit for some of us. When results eventually come out, it will be interesting to see if this is identified as a possible SE.
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Hi ladies, I am now officially 5 years out and cancer free! Survived the mammo anxiety and got the good news. My onc is also taking me off tamoxifen, as my cancer was only weakly ER+ and she said the benefits, if any, of staying on it longer (for someone who's strongly HER2+ and weakly ER+) are so tiny that it's not worth the slight GYN issues I've been having on the drug. I'm excited because I will finally find out if my post-treatment 15-lb weight gain was due to the tamox or just menopause in general. Also because no longer on a drug, i don't have to go in every 6 months, just once a year for the mammo appt. I was shocked when she told me that Dana Farber won't follow me forever--I said, "I'm going to be dismissed?!" and she said "not dismissed, you'll graduate." :-) In other words, in a couple of years, if no recurrence, I will no longer need to go back. However, I still want to get my mammos there and not locally, so she said there's a survivor program I can join that will make it possible for me to do that.
I asked her about the TDM1 trial results and her reply was: it will be a while till we have results, but that's partly because everyone who was on the trial is doing so well. Pretty amazing.
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Isabel, Congratulations on your exciting news! Wow you have a lot to celebrate! 5 years, cancer free and your off Tamoxifen! Fantastic! I'm so happy for you!
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Congrats Isabel Archer! Happy for you! I just had my 3 year checkup and all is well
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Thanks, TinyDancer and Wabals!!!
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Yesterday, I had my 3 year mammo / ultrasound checkup and I am also "all clear"!
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Fantastic, TinyDancer!
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Tiny Dancer 3 years Woohoo!
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Hi everyone, I’ve been off the site for awhile. Glad to hear everyone’s good news, IsabelA, Tiny Dancer, and Wabals! Isabel, I have a gynecologist I really like, but she’s through Harvard Vanguard, so unless you use them for your doctors, she wouldn’t be accessible to you. Let me know.
I have indeed experienced short-term memory loss since my treatment (finished 10/16). I used to have a really good memory, and now I can’t remember where I put things or if I did certain things. It’s rather concerning, but I don’t know if there’s anything that can change that now. It’s certainly a common side effect of chemotherapy, so it’s not all that surprising that it could happen also from TDM-1.
Are you all measuring your “time out” from diagnosis, or end of treatment??
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SerenitySis, thanks for the rec of your gyn, but I live 3 hours away from Boston, so for that sort of routine care I do need someone local. I wonder if Tamoxifen could be having an effect on your short-term memory? It's not far-fetched to think that hormones play a role in this?
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Congrats Isabel A, Tiny Dancer, and Wabals. I hope that we keep hear good news from everyone
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Yesterday I had my 6 month follow up mammogram and post stereotactic breast biopsy for what turned out to be fat necrosis. It came back negative - yeah! I hate the anxiety that I felt before hand, more so since I know that it is going to be this way every year for the rest of my life.
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So glad about the outcome, MIPat. But yeah, the anxiety is a b---h, isn't it?
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Congratulations on your results, MIPat! Our “routine" mammograms will never feel routine again. For me, it used to be just something to check off my to-do list. Now it's so much more. But aren't we all so fortunate to have been diagnosed in early-stage?!
I just had my 2 year post treatment exam this morning with my oncologist and nurse - no complaints. The last of my SE are gone. This was apparently my last visit with the trial nurse. They said they expected results comparing side effects to be presented at next year's ASCO conference in June. Results about efficacy will probably take longer to be reported.
Hope everyone is doing well. Happy fall!
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This is a T-DM1 trial that my MO @ Dana Farber is leading. This article was recently published in Turning Point, a publication of the DF Center for Women’s Cancer. I couldn’t find a link so I copied & pasted it.
Studying Older Women with Breast Cancer
Cancer disparities involve complex factors. Women with breast cancer may be disadvan- taged not only because of their socio-economic status, race, or access to care, but also because of their age and potentially frail status. A clinical trial, led by Rachel Freedman, MD, MPH, is exploring whether a treatment called T-DM1 can prevent recurrences for older patients (over 60) with HER-2 positive breast cancer. Funded by Gateway for Cancer Research, Susan G. Komen, and Genentech, it is the first-ever adjuvant trial dedicated to older patients with this breast cancer subtype.
T-DM1, a novel antibody-drug, is considered an easily tolerated treatment with less traditional side effects. The trial aims to find out whether this new therapy may be an option for older patients, who may not be able to, or strongly prefer to, avoid chemotherapy-based standard treatment. Patients who had surgeries for their breast cancer are enrolled in the study, and will complete one year of T-DM1 treatment and be observed for five years. Researchers are studying a variety of aspects that may also prove important for patients with HER2-positive cancers, including patient-reported symptoms, quality of life, functional status, as well as markers of aging, toxicity, and outcomes.
In addition to the T-DM1 trial, Dr. Freedman also has other studies looking at patterns of care and reasons for undertreatment, trying to understand the optimal way of following older patients in the long-term, who may have other medical risks.
"I am very interested in the care of older women. They are under-studied and under-represented in clinical trials," says Dr. Freedman. "I've been com- mitted to changing that by trying to improve the evidence base for this important patient population. With more research dedicated for these patients, we can optimize their outcomes."
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Very interesting, did the article say the name of the trial? Found it:
ATOP TRIAL: T-DM1 in HER2 Positive Breast Cancer
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Thanks for posting that, Serenitysis. Very interesting!
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Hi TinyDancer,
That is the entire article. It didn’t give the name of the trial.
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Very interesting especially since I am older. I did have tdm1 and tolerated it well
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It is an interesting article. I was 60 when I started TDM1 treatment and was taken off after five months due to liver enzyme elevation
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