Does anyone have triple negative breast cancer?

Posted by jboisjolie @jboisjolie, Jun 17, 2018

Does anyone have triple negative breast cancer? I am on my second diagnosis within 2 1/2 years. What have your side effects? Each time has been different. I will be headed to Rochester in a few weeks to have Stage 3 surgery.

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

@colleenyoung

Welcome to Connect, @jboisjolie
I'd like to introduce you to a few other members who have triple negative breast cancer. Please meet @queenp80 @marykaym63 @susierq111 @triplenegativesurvivor @berit and @fundytide to name a few.
These discussions may also interest you:
- triple negative breast cancer https://connect.mayoclinic.org/discussion/breast-cancer-277922/
- Number of radiation treatments for whole breast cancer radiation https://connect.mayoclinic.org/discussion/number-of-radiation-treatments-for-whole-breast-cancer-radiation/

JBoisJolie, what type of surgery will you be having?

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Does anyone on here have metastatic TNBC

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I was diagnosed with TNBC (rt breast) in Feb 2016 and had bilateral mastectomy followed by chemo. Planned tx was AC-T but I had an immediate reaction to the Taxol (elevated blood pressure, racing heart). I then started AC treatment but after the second cycle I ended up in the ER with pancreatitis. My oncologist then switched me to GemCarbo and I was able to complete tx with no side effects. I just had a PET scan and breast MRI last month and there was no evidence of disease.

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@colleenyoung

Welcome to Connect, @jboisjolie
I'd like to introduce you to a few other members who have triple negative breast cancer. Please meet @queenp80 @marykaym63 @susierq111 @triplenegativesurvivor @berit and @fundytide to name a few.
These discussions may also interest you:
- triple negative breast cancer https://connect.mayoclinic.org/discussion/breast-cancer-277922/
- Number of radiation treatments for whole breast cancer radiation https://connect.mayoclinic.org/discussion/number-of-radiation-treatments-for-whole-breast-cancer-radiation/

JBoisJolie, what type of surgery will you be having?

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Hi @marinak, I'm tagging @janicec8957 on this discussion. She also has metastatic triple-negative breast cancer.

Marina, are you currently taking treatment? How are you?

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@lucyholly18

Just had my lumpectomy in May,Triple Negative ,,had my Port put in the day before Chemo ,the Red Devil """ everything was going great until 5 and 6 day after treatment ,my heart felt it was coming out of my chest ,all my blood pressure taken during this time said irregular beat!! I go tomorrow for my first follow up with Onocologist tomorrow ! Has anyone else had these kinds of reaction taking chemo ,or is this normal ,I never read this was normal ,because nothing about feeling your about to die is normal !!! I had Neuropathy and take Metformin before for over 5 yrs or more ! Could this be my problem ???

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After 2 months of chemo now, Was sent to Emergency Rm for Heart Palpitations after my 2 nd chemo treatment, results of testing showed my thyroid had went hyper from having Hypothroidism for over 40 yrs . Got my newest lab results back,my T3 and Free levels are still very low ,my Primary Doctor had changed my Medication dose from 90mg to 60mg over a a month ago, I was told to keep taking that medication for now ! I have been so tired ,sore throat , and a really bad swallowing issue to the point of only have a liquid soft diet ! My Care team at the Chemo treatment center hasn't been concerned about my thyroid ,.matter fact they actually not even mention it ,,, shouldn't this be a major issue considering It could cause a heart attack or stroke? Anyone else that's had treatments to totally mess your thyroid levels up ?

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@lucyholly18

Just had my lumpectomy in May,Triple Negative ,,had my Port put in the day before Chemo ,the Red Devil """ everything was going great until 5 and 6 day after treatment ,my heart felt it was coming out of my chest ,all my blood pressure taken during this time said irregular beat!! I go tomorrow for my first follow up with Onocologist tomorrow ! Has anyone else had these kinds of reaction taking chemo ,or is this normal ,I never read this was normal ,because nothing about feeling your about to die is normal !!! I had Neuropathy and take Metformin before for over 5 yrs or more ! Could this be my problem ???

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Hi, @lucyholly18,

I'm sorry to hear about the heart palpitations, thyroid, tiredness and sore throat.

You mentioned concerns about your thyroid and your primary care doctor changing your medications.

I noted you said previously you had an endocrinologist. If you still have concerns about your thyroid, have you by chance gone to see him or her to offer an opinion?

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Looking for any experiences with Xeloda. TNBC diagnosed in March 2016 had chemo, lumpectomy and radiation. Nov. 24, 2017 discovered it metastasized to the brain with 2 tumors. Surgery and cyber knife radiation. Scans were looking ok until July when they saw 2 new tumors in the brain but also found it moved to lungs in the form of several tumors. Started Xeloda Saturday at 2000mg morning and 2000mg evening. Of course I have read everything there is about it but was wondering if anyone had any personal experience they could share.

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@kerstin1

Looking for any experiences with Xeloda. TNBC diagnosed in March 2016 had chemo, lumpectomy and radiation. Nov. 24, 2017 discovered it metastasized to the brain with 2 tumors. Surgery and cyber knife radiation. Scans were looking ok until July when they saw 2 new tumors in the brain but also found it moved to lungs in the form of several tumors. Started Xeloda Saturday at 2000mg morning and 2000mg evening. Of course I have read everything there is about it but was wondering if anyone had any personal experience they could share.

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Hi @kerstin1, Welcome to Connect.
Members are talking about Xeloda in the Colorectal Cancer group in these discussions if your interested:
- Diet for Rectal Cancer Radiation with Chemo https://connect.mayoclinic.org/discussion/diet-for-rectal-cancer-radiation-with-chemo
– Xeloda https://connect.mayoclinic.org/discussion/xeloda/

@regionrat took Xeloda for breast cancer for a while and may be able to share her experiences with you.

Kerstin, I know it's only been a few days, but how are you doing on Xeloda so far? Is there something in particular that you are concerned about based on your readings so far?

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@kerstin1

Looking for any experiences with Xeloda. TNBC diagnosed in March 2016 had chemo, lumpectomy and radiation. Nov. 24, 2017 discovered it metastasized to the brain with 2 tumors. Surgery and cyber knife radiation. Scans were looking ok until July when they saw 2 new tumors in the brain but also found it moved to lungs in the form of several tumors. Started Xeloda Saturday at 2000mg morning and 2000mg evening. Of course I have read everything there is about it but was wondering if anyone had any personal experience they could share.

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Thank you for the links. I will check them out. Yes it has only been a few days but I guess I'm just a little nervous thinking that the bottom is going to drop out soon as far as side effects. I was also looking for any comments about success or failure on Xeloda.

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Local recurrence. This is the report: CK (+), GATA-3 (+), ER (-), PR (-), Her2 (0), Ki-67 (+90%) Is this still Triple Negative? Any recommendations about the treatment plan for my mom. She had a surgery last week and removed the tumor under the chest wall. The plan right now is to wait two weeks after the recovery from the surgery and then do radiation. Should I schedule an appointment at Mayo for her? Would they have a different plan? Thank you very much!

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@ellating

Local recurrence. This is the report: CK (+), GATA-3 (+), ER (-), PR (-), Her2 (0), Ki-67 (+90%) Is this still Triple Negative? Any recommendations about the treatment plan for my mom. She had a surgery last week and removed the tumor under the chest wall. The plan right now is to wait two weeks after the recovery from the surgery and then do radiation. Should I schedule an appointment at Mayo for her? Would they have a different plan? Thank you very much!

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Hi @ellating, welcome Mayo Clinic Connect, an online patient community where people can share experiences and ask each other questions about any health issue. To find out more about treatment plan options from Mayo Clinic experts, I encourage you to contact Mayo Clinic directly. Here is the contact information for all 3 campuses: http://mayocl.in/1mtmR63 A team of doctors can review your mom's records and let you know what options they may suggest.

How is your mom doing? How are you doing?

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