ATEMPT Clinical Trial - Roll Call
Comments
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Wabals, so glad you're feeling good after treatment no. 2, as the great photo surely demonstrates!
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We REALLY need a LIKE button!!!! Love the pic, Wabals!
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Oh thank you Maggie and Isabel! I agree that we need a like button.
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yes, LIKE would be great here
Had rads #10 today.
I always closed my eyes, but yesterday I got to see them set up my gurney, and today I watched the machine in action. The professionals there take such care with the settings. Reassuring.
Wishing you all a chance to enjoy these transitional days from summer to fall
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3rd infusion tomorrow. Not excited.
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Oh no Laura! Are you having difficulties with the infusions
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Laura - Time does pass! Finished #14 day before yesterday. I get that, not looking forward to it feeling, as well... that "ookie feeling" I just know will be here in a few days....
I was reminded of the SEs of the stronger drugs this week while talking with an amazing gal. She's going through what has to be hell (blackened fingernails and the slightly offset wig were the visible chemo parts, along with one arm that showed the worst that lymphadema can do...) There was no way she could cover the arm so it was front and center. Being here, interacting with others on this board, gave me the courage and the words to approach her and start a conversation. I'm so glad I did. We really DO need each other!
Watery eyes/nose medication change.... MOs want me off benadryl. Apparently I am now seen as a long term user which has become a concern to them. Started Flonase yesterday. Have been asked to give the change two weeks to fully control the histamine reaction.
Hope all of you have the best day possible.... Maggie
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Laura, I hope no. 3 goes as well as possible for you. Maybe giving yourself a "reward" every 3 weeks would help...whatever would lift your spirits, like new shoes or a piece of cake! One definitely needs to be one's own cheerleader, over and over again. It takes a lot out of you.
Maggie, you're almost done--amazing. You were the one who got this forum going, so thank you for that. I know what you mean about seeing other people going through tougher regimens--the patients who most gave me perspective were the bald children running around the cafeteria at Dana Farber. I have a friend who had HR-positive BC shortly after I did. She was given the TC regimen (taxotere and cytoxan, I think). She has short-term memory problems and brain fog as a lingering side effect, even though she finished months ago.
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Laura - Good luck today and I hope you are feeling well.
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Hi all. Thanks for the support! Just got home, tired, but ok. It's just a long day, and not looking forward to the next few days, but hopefully it will just be blechy/ookey (I like that one!) and nothing worse. Going to rest my head for a bit before my little munchkins burst through the door...
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Half finished with rads, and it's not bad. Just some fatigue mostly and some "stippling" of my breast tissue. They issue us a card w a barcode on it, so by the time I change put the card through the reader and change into a gown, they have set up my X-ray images and got the right body mold on the gurney. I try to relax and enjoy myself in a zen kind of way, and they have gentle lights that morph into different colors through my closed eyelids.
So now it usually only takes 10-12 minutes unless they're training someone new.
Mostly I'm grateful to have a local RO and to meet so many kind technicians and patients. Nine treatments to go!
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Susan - Congrats on the 1/2 way mark on rads! I didn't have mood lights, did have music! Last day was the Four Tops ( had to concentrate to stay still!)....
Had a pretty good day yesterday until early evening... joints started aching, etc. Looking back at my earlier comments, this same feeling began 8 days after infusion 13. Well, today is 8 days after infusion 14. Must have finally settled into a pattern!
Hope your day is a good one!
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Had to laugh about the keeping still part--my toe started to keep time with a reggae song, and I thought, oh Lord, you'd better get that under control!
Maggie, you're a trooper! Keep your eye on the prize, and by Thanksgiving you'll be done! You are part of history with your involvement with this study and have already helped so many others.
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I have a question for those on kadcyla who feel good. Does anyone ever drink wine?
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Wabals... Yes to a glass of wine, for me anyway. I so enjoy a good cab but found I had to stop celebrating with reds after three to four infusions into treatment. The histamine reaction I get from the infusion is amplified with a red. (I hate weeping eyes more than I enjoy a glass of vino.) I will infrequently have a glass of a white wine when a special occasion calls for it! Guess I should note that my liver numbers have stayed in the "ok" range ( upper normal limit to a bit less than 1.5X upper normal limit. If my numbers were any higher I'd opt out completely). Maggie
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Maggie.
Thanks for your response. I have had only 2 treatments so a glass of white still tastes good.
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Hi Wabals, I found that wine didn't taste as good as usual while getting TDM1, but I did keep drinking a glass from time to time. The taste issue seemed to vary during the 3 week intervals. If it tastes good to you, I would say go for it.
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thanks Isabel
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Hi there. I don't drink any wine. My onc said it was fine to have half a glass here and there, but I don't. Part of it is that I'm not a huge drinker to begin with so I just don't care that much. The other is that so much of the time I feel dehydrated, have dry mouth, funny taste in mouth etc. that it's just not appealing!
That said, if you're still enjoying it, go for it! (In moderation, of course!)
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Laura - Are you drinking a minimum of 96 oz fluids daily? I dealt with dehydration early on and had to learn (the hard way) to keep with the additional fluids no matter the week of the infusion cycle ....
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Hi Maggie. Yes, I drink a ton! I guess I have to up it even more. It's hard when water tastes like tin, but it's a good reminder to keep gulping!
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Yes, my doctor told me wine is fine. She basically said eat & drink whatever I want! That being said, I try not to drink anything for the first few days after treatment, as I tend to feel very hungover after even a glass or two. And I don't drink a large quantity, of course. Because of the liver side effects, I try to limit my glass or two of wine to the weekends only, but I'll have a glass during the week from time to time if I'm going out, or if I just feel like it. My attitude is, why not enjoy something pleasurable if I'm feeling well?
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NYWriter
Thanks for the response. I do the same that you do with wine. Sometimes it does not taste good now. But I enjoy it a couple of times a week if it tastes ok.
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Had my #3 today. I am feeling pretty good. I noticed after #2 that I have the hiccups more than usual. Has anyone else experienced this? My MO said not to worry about it and it is a SE with some drugs.
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Tiny... no hiccups for me. A new SE. Seems T-DM1 has a unique signature in each of us. Based on my experiences I'd like to read an update from you in maybe 4 or 5 days from now ( how you feel then).... For me #3 ended up being one of my low points. I was thrilled when #4 was as easy as # 1&2.... Next week is 15/17!!!!
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Maggie - I'm headed into #4 next week, so I'm glad to hear that maybe it will be easier than #3, which was a bit rough! I'm so jealous that you are almost done!!
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Maggie, yes I will keep you updated over the next few days. I feel good, no hiccups yet or any other SE. My blood tests were fine too. Why has #3 been so much trouble? What should I look out for? Woo Hoo, you have 3 more to go! Thank you for starting this thread. It has been very helpful.
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Having labs tomorrow in preparation for #3.Definitely need more sleep and my appetite is not great(which is a good thing!)
Craving ice cream (which is a bad thing!)
Overall feel good but a little off some days. Not complaining tho!
Exercising most days and having fun with grandkids.
Hope you do well with #4 Laura.
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I mentioned in the earlier message that #3 was one of the harder ones for me.
Thought I'd look back at my notes and labs.... Have had 3 "peaks" in ALT and 3 "peaks" in AST ( #3 56/45, #7 73/60, #13ALT/#14AST 69/62). Each peak was less than 1.5 times upper normal limit, so not close to the point where a change in dosage, etc, would be considered. How I felt after the infusion pretty much mirrored the graphs of these two. So, most infusions were, if not a piece of cake, 3 weeks where things were pretty normal!
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Still feeling good after #3. My nose goes from runny to drippy now and then. My AST and ALT were high after my first infusion, so my MO said not to worry, we will check it again after #2 infusion and if it is still high then we will reduce the dose for #3 infusion. Last week both AST and ALT were back down again to were they started so nothing to worry about. I have'nt noticed anything different yet. The hiccups stopped. I hope you all are doing well.
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