1. < Breast Cancer

Triple Negative Breast Cancer: What treatments are you having?

Posted by thielmann1 @thielmann1, Dec 9, 2021

I have just been diagnosed with Triple Negative Breast Cancer after having Estrogen Positive Breast Cancer for 21 years. Is anyone familiar with this diagnosis and treatment that you are having for it?

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leolion811 | @leolion811 | Apr 23, 2022
In reply to @auntieoakley "I have a friend who just underwent treatment with carboplatin, and she did lose a lot..." + (show)
@auntieoakley

I have a friend who just underwent treatment with carboplatin, and she did lose a lot of her hair, but not all. I was happy to see that she retained her eyelashes, and eyebrows. She did pull the remaining hair that was dead on her head to prevent it from just being everywhere as it fell out. (It does not hurt, you cannot feel it)
Her main complaint was not nausea but the unpleasant taste and smell. This is really common with chemotherapy. The doctors controlled her nausea quite well with odansetron and compazine.
The smell and taste associated with many chemotherapy drugs is a challenge. I found that aveeno unscented is the only truly unscented body wash I can find. Daily showering with it didn’t dry out my skin and kept the smell at bay. Everything tasted like it and I never found anything that changed that, but it doesn’t last the entire cycle.
I know you are full of anxiety right now, because I have been where you are. Not TNBC, but relapse. Are you doing anything to try and enjoy the time before treatment? I find that eating things I love during this time, helps me to set them aside during treatments. Also I seem to enjoy the outdoors more, how about you?
How are you feeling after getting your port?

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Thanks for all of thoughts and good wishes. I attended a virtual Respite Retreat today and I really needed that. I highly recommend it. I will check out the Unscented Aveeno body wash. The hospital messed up my port placement yesterday so it will be placed on Monday and my chemo will start on Tuesday. 😢 and I had to have another PCR COVID test in order to go back into the hospital on Monday 😢🙏🏼

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 23, 2022
In reply to @leolion811 "Thank you 🙏🏼 The hospital messed up my port placement yesterday so now my port will..." + (show)
@leolion811

Thank you 🙏🏼 The hospital messed up my port placement yesterday so now my port will be placed on Monday with chemo starting on Tuesday. I attended a virtual Respite Retreat today and it really helped my spirits 🥰

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@leolion811, I'd like to hear more about the Respite Retreat. How did you find it? What was most helpful to you? Any tips to share?

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leolion811 | @leolion811 | Apr 23, 2022
In reply to @colleenyoung "@leolion811, I'd like to hear more about the Respite Retreat. How did you find it? What..." + (show)
@colleenyoung

@leolion811, I'd like to hear more about the Respite Retreat. How did you find it? What was most helpful to you? Any tips to share?

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At my Cancer Center thru my hospital ( they recommended me to be a part of this wonderful organization (respiteretreats.org) Their corporate office is right near me but they are always looking for people all over the country to participate. Please check them out! We did all kinds of fun activities- bingo, journal writing, creating our own Mandela, creating our own poems, chair yoga. And they send you all the activities ahead of time to join in the fun including a beautiful blanket, coffee cup, hat, coloring materials etc.
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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 23, 2022
In reply to @leolion811 "At my Cancer Center thru my hospital ( they recommended me to be a part of..." + (show)
@leolion811

At my Cancer Center thru my hospital ( they recommended me to be a part of this wonderful organization (respiteretreats.org) Their corporate office is right near me but they are always looking for people all over the country to participate. Please check them out! We did all kinds of fun activities- bingo, journal writing, creating our own Mandela, creating our own poems, chair yoga. And they send you all the activities ahead of time to join in the fun including a beautiful blanket, coffee cup, hat, coloring materials etc.

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How liberating to color with crayons again. I love your adjective of zealful! What is the program called and how might others take part?

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1 reply
callalloo | @callalloo | Apr 24, 2022
In reply to @leolion811 "I have never heard of miracle fruit. Wonder where I can find it? Asian Market?I have..." + (show)
@leolion811

I have never heard of miracle fruit. Wonder where I can find it? Asian Market?I have a lot of ginger ale on hand . Popsicles too! Never heard of ginger ale popsicles? Thank you 😊

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I just freeze gingerale in waxed-paper cups, lol. I have a finicky stomach so have a lot of old nostrum-tonic tricks that I've read about. And frozen liquids are just soothing as the doctor told me they could be. Another good frozen option for nausea that seems to help me is mint tea with honey. And a favorite, non-frozen, is Angostura bitters in soda with a small amount of sugar.

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2 replies
callalloo | @callalloo | Apr 24, 2022
In reply to @leolion811 "I have never heard of miracle fruit. Wonder where I can find it? Asian Market?I have..." + (show)
@leolion811

I have never heard of miracle fruit. Wonder where I can find it? Asian Market?I have a lot of ginger ale on hand . Popsicles too! Never heard of ginger ale popsicles? Thank you 😊

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There are growers of miracle fruit in Florida who sell it online. It's such a niche fruit that there are no commercial growers of size that I know of. According to botanical media, the sugar industry did a lot to suppress attempts to commercialize it as it allowed people to skip sugar. That's unfortunate as it would have been a boon for people who cannot have sugar in their diets.

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leolion811 | @leolion811 | Apr 24, 2022

I see where they sell the dried miracle fruit in packages on Amazon!

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leolion811 | @leolion811 | Apr 24, 2022
In reply to @callalloo "I just freeze gingerale in waxed-paper cups, lol. I have a finicky stomach so have a..." + (show)
@callalloo

I just freeze gingerale in waxed-paper cups, lol. I have a finicky stomach so have a lot of old nostrum-tonic tricks that I've read about. And frozen liquids are just soothing as the doctor told me they could be. Another good frozen option for nausea that seems to help me is mint tea with honey. And a favorite, non-frozen, is Angostura bitters in soda with a small amount of sugar.

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I will have to get some wax paper cups to freeze ginger ale. So you also freeze mint tea with honey? Angostura bitters in ginger ale? Thanks for all of your tips and suggestions 🙏🏼

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1 reply
leolion811 | @leolion811 | Apr 24, 2022
In reply to @colleenyoung "How liberating to color with crayons again. I love your adjective of zealful! What is the..." + (show)
@colleenyoung

How liberating to color with crayons again. I love your adjective of zealful! What is the program called and how might others take part?

Jump to this post

Yesterday was a lot of fun! Check out respiteretreats.org . You should be able to fill out the information online or ask your nurse navigator at your chemo center.

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1 reply
leolion811 | @leolion811 | Apr 24, 2022

For my 1st diagnosis of TNBC, I had 4 cycles of the Red Devil followed by 12 treatments of Taxol. Followed by 1 month of rads. This time I am having Gemzar/Carboplatin for 4 cycles ( 8 treatments) followed by 5 weeks of rads. Good luck to you 🙏🏼

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