ATEMPT Clinical Trial - Roll Call
Comments
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Tiny Dancer, I did have a couple of breakouts during treatment. They weren't all over my face, and they weren't awful, but they annoyed me. I hope a good concealer will make you feel better about this!
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TinyDancerNo I have not. I really have not had any side effects except an occasional metallic taste.
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Wabals, I get the metallic taste only on the day after infusion and everything tastes awful.
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Yes me too. I have had 4 infusions and feel normal
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I have a "rash" on my upper right arm. It started ~ 3 months ago... gets better for a while and then comes back again. I assumed it was in response to the B-12 shots, not the T-DM1. (Changing nurses at my local provider has meant a change in injection location, no longer in the butt, now in the right arm muscle.)
I found comments on a different site about a rash similar to teenage acne for someone on herceptin.
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Hi, this is a reply to Laura61's post from 10/9: Laura, I have felt the same way you do. I am 38 years old and have 2 kids, almost 7 and almost 3. I don't have any advice but just want you to know you're not the only one who feels that way--it's hard not to wish for the year of treatment to be over, but at the same time, it's a whole year of life! I find that my kids do keep me grounded in the present moment, when I'm spending time with them. When I'm in the middle of a long commute to a job that I want to leave but can't because I don't want to switch jobs/insurance while on treatment--well, then, it's a little harder not to be impatient. it's a good job and I love my coworkers; I just need a better commute and a new challenge. I try to focus on the positive aspects of my life, of which there are many, but it's hard at times. I am now between treatments 10 and 11, in the third season of my treatment (I pay a lot of attention to the changing trees outside the treatment center's windows), so I can tell you, time does move along. It's a great feeling to be more than halfway done--you will get there too.
To all: I don't visit this board a lot because I find it easier not to focus on my cancer all the time, but it has been very helpful to read these perspectives. I had my implant surgery recently and it went great--thanks to those who reassured me that it would.
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Well ladies... tomorrow is # 16 of 17. The end is really here... just a few more weeks. Look forward to following NY in the "not so frequent visiting" of this or any Her2 website....
( Oh and Pinktober is almost over... excited about both of these ending.)
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Congrats Maggie! I can't wait for the day to come when I can say that too.
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Maybe getting a flu shot on the same day as an infusion was not the best idea.... Feel like I got run over by a truck.
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Wabals, just want to say how glad I am that you are an example of a TDM1 patient with (basically) no SEs. I hope there are hundreds more like you on the trial in its various locations across the country. It will help move this drug toward being first-line treatment for HER2.
Maggie--I was afraid to celebrate "out loud" after my last treatment--like I might jinx it! But please plan something wonderful for yourself--whatever you most enjoy, do a lot of it.
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Isabel Archer thanks but I have only had 4 treatments. Hope it continues
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Tiny Dancer, on second thought, my breakouts were probably related to hormonal changes, not necessarily the TDM1. I was going into menopause when I was diagnosed... But a friend of mine, also early 50s but totally post-menopausal, had one of the tougher BC chemo regimens and had acne breakouts. In the end, who knows--it's hard to pinpoint what causes some of these SEs.
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Isabel, that could be the reason. Thanks.
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I had my simulation today and now have three freckle sized tattoos. Start rads on Monday
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Tiny Dancer I have my simulation Thursday. Good luck with rads. Are you nervous?
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Hi all,
Had my first radiation treatment today. It was so quick (5 minutes) and wasn't at all stressful. Just closed my eyes for a few and it was over....
I'm still in bed from infusion #5 last Thurs. I have just felt super crappy, fluish, achey, blech. I feel a little better today, but I still felt more like lying in bed than getting up. Hopefully tomorrow that will reverse. I'm not much of a lying in bed type!
Laura
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Comments about flu-ish feelings, hit by the truck, ..... my reaction to #16 was a bit of the flu-ish feeling, joints were not cooperating, popped a Zofran! Had gotten used to having an easy week #1... not this time! Maybe the full moon????? I'm hanging in there with ya'll!
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I had that fluish thing after my first Prolia (denusomab or something like that) shot. Also a monoclonal antibody type of drug so I guess it's not surprising.
Good to see everyone making their way through all this. I read the posts regularly though I don't post too much any more. I'll be done with Herceptin next week and will also get my mammogram, final echo, final Atempt trial onc appt and port out! I'm both excited and a little emotionally up and down.
I focused so hard on getting through treatment, it feels a little strange to be "done". I still am dealing with the hormone blocker side effects and my energy is not yet back, yet those around me expect me to be celebrating. I will, but it's also a little hard to realize I'll never be quite the same. It's never completely "over", though it is certainly MUCH better than the last year plus has been
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Oh, Maggie! I'm so jealous you are almost done! I hope this is the worst of it....
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TTFan, it is definitely a weird feeling to come to the end of the treatment year. The nurses at DF told me many patients at that point feel uneasy even while they're supposed to be celebrating. This may be especially true for HER2+ women because it's a whole darn year of treatment. I think the crux of it is that while you're getting treated, you feel like you're in charge, you're doing your job--zapping the cancer is your purpose. When treatment ends, it's just you and your life again, and the knowledge, as you say, that things will never be the same. But for me, and I hope this will be true for you too, many things are also much better now. If I could go back and un-have cancer, I'd do it in a heartbeat, but since I can't, I do acknowledge that since BC I am living my life more consciously, more lovingly, and more appreciatively. Wishing you peace of mind as you go through this next transition.
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Thanks Isabel. It's always good to know we are not alone in our feelings! And I totally agree about there being many improved things in post diagnosis life. While I was in the thick of chemo I was talking with a friend who is 5 years out now from her BC Tx. She commented on how "in the moment" I was and how sorry she was that she no longer lived that way. She told me to try and hang on to that way of being in the world. It gets harder as we re-enter work and our more expanded world. I do my best though to follow her advice. Now that I have grandkids around I have teachers all around me
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My RO said there is a 20% chance I may have rads on my back instead of being in the prone position, but he won't know until he reviews the CT scans. RO just called and said my scans look good and I start rads on Monday in the prone position, M-F for 6 weeks.
Wabals, good luck with your simulation. Yes, I am a little nervous for the first one. Are you?
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Hello ladies...even though I am not in the trial, this is one of my go to threads to check in on all my HER2+ sisters... happy to read about new ladies starting the trial as well as the veterans who helped me in the beginning... I just had # 9 Herceptin, completed radiation 2 weeks ago and am on to Tamoxifen. Feeling great most days, physically... and completely agree about the unexpected feelings that come along with completing treatments. It's such a whirlwind to look back on and at times I can't believe it really happened. I sometimes wonder if the real challenge is in learning to live in this new normal place, rather than enduring the actual treatments. I plan to start exercising regularly to minimize the anxiety, insomnia and lingering neuropathy. I am in complete agreement with you Isabel about many things in life that are so much better now. I am grateful for the knowledge of how deeply people care for me (that was so humbling!), the strength I found, and the insecurities I shed.
Wishing you all the very best as you continue on this journey...
Hugs,
kerry0 -
Yes I am. 😬
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Wabals and TinyDancer....
Soooo understand the nerves going into rads. Just got to go through that first day or so. The rad techs are amazing. They will pull you into their world and make the time spent with them, well not sure how to put it, a daily visit not a daily chore. Look at Ozoner's crazy 50s radiation sign posted... Piped in music, just need to be vocal about your preferred songs... then again you DO need to be still! And hey, these guys and gals will manhandle you for all the right reasons!
Wishing you both an easy go of it..... Maggie
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MaggieCat
Thanks for the encouraging words! What I fear most is side effects😝 I am now having some side effects from tdm1 not severe but definitely there. Also traveling to DC every day to Sibley Hosp which is now a part of Hopkins. Not an easy commute due to traffic.
It will all be OK just have to push thru like so many of you have.😃
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Kerryd423-- It's wonderful to read that you are feeling great! Tamoxifen is a whole other topic of conversation, but if you feel like it, let us know how you fare on it. I have just two problems with it: (1) hot flashes--They have been variable--very bad in the summer, less bad now. They're manageable, but I always have to wear layers so I can strip things off as needed. (2) Weight gain-- I was my perfect weight before diagnosis, having lost about 10 pounds on a low-carb diet. Now I'm heavier than I've ever been--I gradually gained back the ten plus a few more, even while keeping to a low-carb, very healthy diet with daily exercise. There seems to be NOTHING I can do to lose the weight, and honestly I feel worse about that than about having a Frankenboob (which, oddly, just doesn't bother me much at all). So, I hope this doesn't happen to you or anybody on this forum--it certainly doesn't happen to every woman--but just in case, be careful. I would be a lot heavier if i didn't stick to my low-carb/low-sugar regimen.
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Thank you Isabel! So far, feeling well on the Tamoxifen- just one week down! No side effects yet. As far as the hot flashes, they started with the Taxol back in May. I still get them, though much less now and I really think acupuncture may have helped that. I went regularly through radiation and when I mentioned an improvement in the hot flashes they told me that often happens with successful acupuncture therapy. I lost 10 lbs while in radiation- perhaps dietary changes (I loaded up on protein- they recommended 90 grams/day- so there was little room for carbs!), perhaps the weight shed due to increased metabolic demands on a body healing from radiation. I hope to keep it off and hope that starting an exercise program at this time will help to balance any potential weight gain from Tamoxifen... this is my plan...I have learned this year that things don't always work out as I plan! I will give it my best shot!
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Wabals and Tinydancer: It looks like I'm a week ahead of you for rads, started this past monday. So far, it's been a piece of cake. Really, it's over before I know it and I agree with Maggiecat - the techs are great. No side effects so far, and hopefully will stay that way. I'll keep you posted!
My doc says I got a very poorly timed cold after my last infusion. I'm still not feeling great one week later. I wonder if my blood counts go down right after an infusion and make me more susceptible during that time (even though day of treatment my counts are fine!) I will be washing my hands a LOT next go round.
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I'm worried about the sunburn-like rash and any other SE's from it
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