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?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

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?

Jump to this post

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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1 reply
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 🥰

Jump to this post

@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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1 reply
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?

Jump to this post

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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leolion811 | @leolion811 | Apr 23, 2022
In reply to @olg1 "I was diagnosed with triple negative grade 3 invasive carcinoma last December. I couldn’t get chemo..." + (show)
@olg1

I was diagnosed with triple negative grade 3 invasive carcinoma last December. I couldn’t get chemo because I couldn’t get an eight and I am in a wheelchair because with Covid nobody wanted to work so I got radiation I finished radiation the end of September I have horrific fatigue I have no feeling around the breast near the surgery site and read they did the radiation and now I have to go for another ultrasound is this fatigue, after so many months of radiation

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Why didn’t you have chemo? TNBC is very aggressive and everything needs to be thrown at it to kill this beast 🙏🏼🙏🏼

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leolion811 | @leolion811 | Apr 23, 2022
In reply to @gbnana "I had my mastectomy in Dec for triple neg cancer stg 3 At age 70 here..." + (show)
@gbnana

I had my mastectomy in Dec for triple neg cancer stg 3
At age 70 here in Alberta I was advised by oncologist to avoid chemo as what is used for this type is too harsh on oldies like me. So I go forward without further treatment and just watch for indicators of possible recurrence.
I am ok with my decision.
Good wishes of health I send to all of you!

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Please ask your oncologist about the Gemzar/Carboplatin chemo treatment. You aren’t too old for chemo ( I will be 69 in 3 months) I have too much to live for and I won’t give up!

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leolion811 | @leolion811 | Apr 23, 2022
In reply to @colleenyoung "Hi @leolion811, I'd like to add my welcome. I moved your question about side effects with..." + (show)
@colleenyoung

Hi @leolion811, I'd like to add my welcome. I moved your question about side effects with combination Gemzar/Carboplatin protocol followed by 5 weeks of radiation for triple negative breast cancer (TNBC) that has recurred to this discussion:

- Triple Negative Breast Cancer: What treatments are you having? https://connect.mayoclinic.org/discussion/triple-negative-breast-cancer/

I did this so that you can connect with other TNBC members like @thielmann1 @kk57 @olg1 @imlistening21 @lindaheard @medical01 @mlk @gbnana and share experiences.

I hope you are able to rest well this weekend as you prepare to start chemo on Monday.

Jump to this post

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 🥰

REPLY
1 reply
leolion811 | @leolion811 | Apr 23, 2022

2 and 1/2 years ago when first diagnosed with TNBC, I had a lumpectomy, then 4 chemo treatments of the Red Devil and 12 treatments of Taxol followed by 20 rads including 5 boosts. My TNBC has reoccurred - I had a right auxiliary lymph node dissection and I start chemo next week of Gemzar/Carboplatin - 4 cycles followed by 5 weeks of rads. Good luck 🙏🏼🙏🏼

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gbnana | @gbnana | Apr 23, 2022

I had my mastectomy in Dec for triple neg cancer stg 3
At age 70 here in Alberta I was advised by oncologist to avoid chemo as what is used for this type is too harsh on oldies like me. So I go forward without further treatment and just watch for indicators of possible recurrence.
I am ok with my decision.
Good wishes of health I send to all of you!

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 23, 2022
In reply to @leolion811 "My TNBC has reoccurred after 2 1/2 years. I had a right auxiliary lymph node dissection..." + (show)
@leolion811

My TNBC has reoccurred after 2 1/2 years. I had a right auxiliary lymph node dissection with a 1.5 cm fibrodipose tissue involved. Having my port placed on Friday with chemo starting Monday April 25th. It will be a combination Gemzar/Carboplatin protocol which will be 4 cycles with a total of 8 treatments over 3 months followed by 5 weeks of rads. Did anyone loss their hair on this regimen? What kind of side effects occurred? Any tips on helping me make my chemo easier? Thank you 😊

Jump to this post

Hi @leolion811, I'd like to add my welcome. I moved your question about side effects with combination Gemzar/Carboplatin protocol followed by 5 weeks of radiation for triple negative breast cancer (TNBC) that has recurred to this discussion:

- Triple Negative Breast Cancer: What treatments are you having? https://connect.mayoclinic.org/discussion/triple-negative-breast-cancer/

I did this so that you can connect with other TNBC members like @thielmann1 @kk57 @olg1 @imlistening21 @lindaheard @medical01 @mlk @gbnana and share experiences.

I hope you are able to rest well this weekend as you prepare to start chemo on Monday.

REPLY
1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Apr 23, 2022
In reply to @leolion811 "My TNBC has reoccurred after 2 1/2 years. I had a right auxiliary lymph node dissection..." + (show)
@leolion811

My TNBC has reoccurred after 2 1/2 years. I had a right auxiliary lymph node dissection with a 1.5 cm fibrodipose tissue involved. Having my port placed on Friday with chemo starting Monday April 25th. It will be a combination Gemzar/Carboplatin protocol which will be 4 cycles with a total of 8 treatments over 3 months followed by 5 weeks of rads. Did anyone loss their hair on this regimen? What kind of side effects occurred? Any tips on helping me make my chemo easier? Thank you 😊

Jump to this post

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?

REPLY
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