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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Mentor
Chris, Volunteer Mentor | @auntieoakley | Apr 28, 2022
In reply to @leolion811 "How much Kefir do you add? Picking up a few items at the store today, the..." + (show)
@leolion811

How much Kefir do you add? Picking up a few items at the store today, the Miralax is not working for me.

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I mix in half kefir and half milk to where it looks a little soupy. Then add whatever you like. I add a handful of walnuts for texture. I freeze blueberries whole when they are in season then use a handful of those. I use berry flavored kefir to pump up the flavor.
My husband uses pecans and raisins and a bit of real maple syrup. He also microwaves his to a warm temp in the morning, I eat mine cold. This has made a tremendous difference for us in feeling better and avoiding the build up and then very painful emptying.
I still drink miralax at half dose every single night as an added precaution.
When is your next treatment?

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2 replies
leolion811 | @leolion811 | Apr 28, 2022
In reply to @auntieoakley "I can only tell you what my experiences were with chemo that had these same side..." + (show)
@auntieoakley

I can only tell you what my experiences were with chemo that had these same side effects. There was not the effective drugs for nausea that they have now. So that was a bigger problem. The constipation became a huge problem and continued for years after my initial chemo. If you can stomach it, whole grain oatmeal every day will help this, it might or might not be enough. I now mix up whole grain rolled oats and milk and kefir, add some blueberries and a touch of honey, I refrigerate over night and eat cold in the morning.
You can ask your oncology doctor for a consult with a nutritionist specializing in oncology if there is one in your area. They will have more tips and tricks for you to use. How are you feeling after your first treatment?

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How much Kefir do you add? Picking up a few items at the store today, the Miralax is not working for me.

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1 reply
callalloo | @callalloo | Apr 27, 2022
In reply to @leolion811 "Yes I had 4 weeks of rads including 5 boosts. This time I will have 5..." + (show)
@leolion811

Yes I had 4 weeks of rads including 5 boosts. This time I will have 5 weeks of rads with no boosts. The tentative timeframe will be in September. I pray that your cancer doesn’t come back 🙏🏼 I hate cancer 😡

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Cancer is a very wily opponent indeed. There is the philosophical view that I took that, had I died at a younger age if something else, I'd have dodged it but that doesn't help me much ;-). For what it's worth, and I have a good track record with this stuff, I believe you'll come through this just fine. Tired, but fine. Prayers up for all of us and the people who love us.

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leolion811 | @leolion811 | Apr 27, 2022
In reply to @callalloo "Did they do radiation on that same site after the lumpectomy? It was suggested that I..." + (show)
@callalloo

Did they do radiation on that same site after the lumpectomy? It was suggested that I have post-lumpectomy site-specific radiation as a kind of "clean up the area in case of missed cancer cells" but I was past the 6-week optimal time and declined. I was on the fence about it anyway so likely would have declined but this was an ER+, PR+ HER2- tumor, which I understand is a whole different animal.

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Yes I had 4 weeks of rads including 5 boosts. This time I will have 5 weeks of rads with no boosts. The tentative timeframe will be in September. I pray that your cancer doesn’t come back 🙏🏼 I hate cancer 😡

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1 reply
callalloo | @callalloo | Apr 27, 2022
In reply to @leolion811 "My reoccurrence showed up from my ultrasound not mammogram. It was found in the fibroadipose tissue,..." + (show)
@leolion811

My reoccurrence showed up from my ultrasound not mammogram. It was found in the fibroadipose tissue, localized (1.5cm) and they removed that with my Level 1 and 2 lymph nodes. It was right next to my lumpectomy. Thank you very much🥰

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Did they do radiation on that same site after the lumpectomy? It was suggested that I have post-lumpectomy site-specific radiation as a kind of "clean up the area in case of missed cancer cells" but I was past the 6-week optimal time and declined. I was on the fence about it anyway so likely would have declined but this was an ER+, PR+ HER2- tumor, which I understand is a whole different animal.

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1 reply
leolion811 | @leolion811 | Apr 27, 2022
In reply to @markagottlieb "What type of breast cancer do you have? I’m glad the treatment wasn’t bad for you." + (show)
@markagottlieb

What type of breast cancer do you have? I’m glad the treatment wasn’t bad for you.

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I have TNBC for my 2nd time in 2 and 1/2 years. So far this chemo protocol isn’t too bad (yet)

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markagottlieb | @markagottlieb | Apr 27, 2022
In reply to @leolion811 "For reoccurrences, they usually use Gemzar and Carboplatin and I had my 1st treatment yesterday and..." + (show)
@leolion811

For reoccurrences, they usually use Gemzar and Carboplatin and I had my 1st treatment yesterday and it wasn’t too bad.

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What type of breast cancer do you have? I’m glad the treatment wasn’t bad for you.

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1 reply
callalloo | @callalloo | Apr 27, 2022
In reply to @lindaheard "I am currently taking Xeloda and have been for 6 mos. The hand/foot syndrome has been..." + (show)
@lindaheard

I am currently taking Xeloda and have been for 6 mos. The hand/foot syndrome has been a big problem for me even though many have much less or no problem. Early on I had much more of a problem but now it is better after a lowering of the dose. I still have pain in feet and hands which starts a week into the two weeks I am on it. It goes away during the following week when I am off of it. My skin peels but less than on higher dosage.

What has worked for me to lessen side effects: take medicine right when you are eating.
Get some light weight gloves ( I got on Amazon).
Get some very good moisturizer preferably with urea in it.
At night lather up your feet and hands with moisturizer and wear socks and gloves over feet and hands.
During the day apply moisturizer a number of times.
After moisturizing I wear socks and athletic shoes and gloves. The gloves help do things that might be too painful otherwise.
Moisturize all the time even when you are on a week off from medicine.
Do not take hot showers or wash hands in hot water.
As always in this journey you also discover other things that help you. It took me several months after starting Xeloda to figure out what works for me.

It is definitely working as my last Petscsn showed no active cancer !

Wishing you all the best!!

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I read where a dermatologist recommended cream, lotion, etc., with a high urea content to help feet slough off thick skin. (He was arguing against the filing gadgets used in spas as he's seeing a lot of foot infections.) But the urea helps healthy skin shed the dead layers. One mentioned as inexpensive, easily-available and effective is Heel Balm.

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leolion811 | @leolion811 | Apr 27, 2022
In reply to @gbnana "Sorry to hear of your recurrence. I have the same diagnosis and had a mastectomy in..." + (show)
@gbnana

Sorry to hear of your recurrence. I have the same diagnosis and had a mastectomy in Dec. Of course I worry about recurrence and constantly think, when will it be back? Where did yours show up?
In the same area as your lumpectomy?
I wish you well with your treatments and send hugs for better days to come

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My reoccurrence showed up from my ultrasound not mammogram. It was found in the fibroadipose tissue, localized (1.5cm) and they removed that with my Level 1 and 2 lymph nodes. It was right next to my lumpectomy. Thank you very much🥰

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1 reply
leolion811 | @leolion811 | Apr 27, 2022
In reply to @markagottlieb "I’m 73 and was diagnosed with triple negative 7 years ago. It is a very aggressive..." + (show)
@markagottlieb

I’m 73 and was diagnosed with triple negative 7 years ago. It is a very aggressive cancer. I have no signs of my cancer returning. I would listen to my doctor if I was diagnosed at 80. My mother lived to be 95, so if I felt healthy at 80, I would do chemo again, maybe one of the newer drugs.

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For reoccurrences, they usually use Gemzar and Carboplatin and I had my 1st treatment yesterday and it wasn’t too bad.

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