ATEMPT Clinical Trial - Roll Call
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TTFan - Wow, that's great news that a low carb diet helped with your neuropathy.
I had my two week checkup yesterday after my Ooph and I'm healing very well, but still a bit sore. Pathology report is negative - YAY! It's amazing how well this skin glue holds the incisions closed with no stitches.
Today I had my 5 year check up with my MO and we discussed switching to an AI - Anastrozole, now that my ovaries are gone. So I will try it for 3 months and see how I do with the side effects.
I hope everyone is doing well and have a great weekend.
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I have been searching for Sarah Tolaney's presentation of the Atempt Trial results from the SABCS19 and I found some on Twitter (of all places). I searched "Atempt Trial" and found that many Doctors who were in the audience have taken pictures of her slides, but all of them are not there. I also thought it was interesting to read what other Doctors has to say about TDM1 and the "financial toxicity".
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TinyDancer, great news about the clear path report. Hope you're all healed! I had the larger panel genetic testing last week and will get results in a few weeks.
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Isabel, I hope your test results are negative.
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Results of my larger-panel genetic testing were all negative--no weirdo genes lurking around. I declined tests of genes for which there is no possible recommended action (as in they don't even know if you need more frequent screening--they don't know the significance of the variants or mutations), but the genetics counselor didn't see any reason to test for those based on family history anyway. I can always get tested again in a few years as the field advances. My brother had prostate cancer last year (he's fine) and also had gene testing that came back negative. This is good news for our kids.
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Isabel, I'm so happy to hear that your results are negative.
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Thanks, TinyDancer. And I hope you're fully mended from your surgery!
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Yep, I’m all healed, thanks. I started Anastrozole on 2/26 and noticed that I feel cold/chilly all the time even while sleeping too. Except for the last few nights I am starting to heat up a bit while sleeping - about the same as when on Tamoxifen. I do have this weird thing with my pinky and ring fingers on both hands. Sometimes they will lock up, get stiff, cramp and hurt. Ouch. If I rub them, then they relax again. It doesn’t happen all the time, just once in a while.
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Tinydancer, I had the same thing with my little finger when on that drug--trigger finger. It drove me nuts. I also had all-over joint pain. I didn't last long on the drug. My onc took me off it since I'm so weakly ER+/PR+ anyway. Hope you have better luck adjusting to it.
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Wishing all of us stay safe and healthy during this Coronavirus craziness. After going to four stores today and seeing empty shelves and the empty meat counters were a bit scary. I’m not too worried about myself at 55. I’m more worried about the elderly who can’t get around as much and who need to be protected and helped. I just hope we can all get through this safely.
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The last few months have been very difficult. On December 2 my husband died unexpectedly. I am dealing with probate issues which is frustrating for a variety of reasons. Eight weeks ago I had a total knee replacement and was so fortunate and blessed that for the first four weeks my brother and sisters-in-law stayed with us to help. Now I am looking at a pandemic and financial crisis with two children under 18 being strong and confident for them, yet getting so weary. Please remember me in your prayers.
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MIPat - With what you've gone through, is there anything other than remembering you in my prayers I can do? If you don't mind, tell us about your children. I have 2 grandsons (19 and 16) who lost their dad to cancer last year. Just wonder if they might be helpful in some way. Maggie
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My daughter is 17 and very stoic. She does not like to talk about her feelings, but I periodically sit and talk with her. My father died when I was 13 and I’ve told her the she needs to work through this now or when she is thirty (like I did). She resists talking to anyone but I told both of them that we would be going to grief counseling, but now that is on hold. My son is 14 and took his father’s death hard. He will talk about his feelings with me and a few trusted adults but doesn’t like to talk with others. After the breast cancer diagnosis he had a lot of anxiety about me dying. My children have a loving support system on both sides of the family.
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MIPat - Good morning. I hope this day is a good one for you. Are either of them into video games? I'm thinking that might be a silly question these days! Our 19 year old is also very stoic. Ryan went through counseling which helped to some extent. He appears to make friends online easily. Our 16 year old, Jason, is charismatic - the center of whatever group of friends he is with - very much like his father. Jason won't deal with this and to be honest is benefiting from "no school" as his grades went into the dumper this semester.
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MIPat, I am so sorry for your loss. 🙏🏻 Wishing you peace to bring comfort, courage to face the days ahead and loving memories to forever hold in your heart.
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MIPat, I am so sorry and will be keeping you in my thoughts. I lost my father when I was 16, and there is no doubt it changed me forever. My mother and I had to soldier on with our separate and combined griefs (my older siblings were already married and living their adult lives). But the early loss also made me resilient, and more philosophical about life. What helped me most as a teenager was meeting a girl my age who had lost her mother early on--if your kids can talk to other kids in that situation, that might help them too. Just to feel understood is comforting.
You've had more than your fair share of terrible difficulties--I hope you can find solace in the small everyday things of life. Now that we're all homebound, those small things are what we have.
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Maggie, thank you. John is very much into video games. He is able to connect with his friends during this time which is helpful since he is my extrovert. He does see a therapist and also talks with me so he is working through some of his grief. I think that he would benefit by more structure with schooling since we will probably be out of school for the rest of the year. Ava will deal with her grief in her own way with support.
Tiny thank you for your good wishes and prayers. I think that during this difficult time we can all use prayers.
Isabel, loosing our fathers does cause us to be more resilient. The loss is always there. My children are resilient. They lost their biological families, their first language, and culture. There is a fear that something will happen to me when they are young I don’t want them to loose any more.
As much as I panic every year when my mammogram is due, I am freaking out more this year because my April appointment was cancelled and rescheduled for August. Trying not to worry
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MIPat, just checking in to say hello, and send good wishes to you and your kids. The mammo delay adds worry but I don't think it add any actual risk. I remember my oncologist comforting me that things really don't move quickly with BC (I had a few months delay between diagnosis and surgery), and that was back when we all actually had it (so even less of a thing for routine testing). All best to you.
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I was able to get in today for my mammogram and got a clean bill of health! I was nervous (ok, cry high anxiety level) because I have been having some issues with the left side but it reminded me of when I was younger and had more problems with cystic breasts. Neither the mammogram or ultrasound showed anything. So I am happy.
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MIPat--this is wonderful to hear! Great news!
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Congrats MIPat!
How is everybody doing in these Covid times? I'm feeling lucky to be retired. No extra risk as I would have had working at the hospital and no financial impact other than the stock market hit, but we'll weather that. My main complaint is missing being with my grandkids. One son's family is at pretty high risk for a variety of reasons, so we've not seen them since February. The other one is being super careful, both of them working from home and no exposures other than careful grocery shopping, so we decided to risk a visit for mother's day. Heaven on earth is holding your grandbaby again! She's almost 2 and before the stay at home order we were babysitting for her twice a week, so totally in each other's lives. I miss her soooo bad! Her 2nd birthday is coming up, so we may do another (very careful) cheat day with us and her other grandparents.
Hope you all are well and coping with these trying times!
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Hello, TTFan! I hope by now you've had many more chances to see your grandchildren! As for these Covid times, I'm lucky that I have always worked at home, so for me that part of life went on pretty much as before. What grieves me is the loss of arts events this summer and into the fall. My older son is getting married next summer (in our backyard), so I really really really hope large gatherings will be OK by then! Best wishes to all.
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Wishing everyone here a Happy Thanksgiving!🦃🍁 I hope you all are well and staying safe during the holidays and end to this crazy year.
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I was diagnosed right when COVID hit so my oncologist was able to get me approved for Kadcyla to minimize visits to the treatment center. Encouraged by all of your comments that participated in this trial. Have a few more treatments to go and hoping I have the same good results.
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Thanks for your message Little Cheese! Our small group - here on BC.org - had great results. I queried my oncologist in November about the other participants from our location. All are doing great, no cancer return - 5+ years out. Maggie
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is anyone else suffering from loss of appetite? I take Tamoxifen, which can have that effect. I like fresh fruit and vegetables, but fried foods are no longer appealing.
I first had the aversion for months after chemo, and I’ve had bouts many times since.
This last time is after knee replacement last month. Just curious.
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Ozoner... Thanks for keeping this small group going! I wonder if you are/ or were on an antibiotic after the knee surgery... I lost too much weight (post breast cancer treatment) when I was on an antibiotic after falling and fracturing my wrist. The fall was 2 years ago. I got way too thin.. and too worn down if you will. I am better now.. though wonder what I will say if I need to go on an extended regiment of antibiotics in the future...
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HI MaggieCar,
You know it’s quite possible they injected me with an antibiotic, especially since it was joint surgery.
The good news is that I read an article on loss of appetite that said to keep your favorite snacks at hand. I’m always willing to eat fruit, for instance, as opposed to Tennessee country ham
So great to talk to you on here! We are part of a tight group—and lucky to have been chosen for this trial. You always kept us caught up the latest findings of the study. My oncologist did a happy jig when we found out I was accepted to the trial.
I turn 70 an March 16 and am looking forward to being eligible for the COVID shot. What a strange thing this life is!
🌻🌻🌻
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Hello all--I haven't checked in here for a while.
Little Cheese--very happy for you that you're getting "our" drug!
To Ozoner: I was on Tamox and then the other one only briefly. My problem isn't loss of appetite but extra pounds that won't go away!
MaggieCat--thanks for the update from your oncologist. I'm 7.5 years out from diagnosis--it seems like an eon ago.
Good luck to all in the time of corona. May you all get vaccinated and be well!
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Hello everyone and Happy Easter to all.
I have a question about the Covid Vaccine. I spoke to my Oncologist last month and expressed my concerns and fears over receiving the vaccine. Being a Doctor, he said "get the shot". But honestly, I'm a bit scared to get it. I'm 56, I think I'm healthy (but then I thought I was healthy the days prior to when I was diagnosed). I am super careful about who I see, where I go, wear my masks, and sanitize everything. I am a 5 year survivor. So, I'm just wondering if you all got the shot and what your thoughts are on this.
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