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.

Hello, has anyone gone through the oral chemo (Xeloda) 8 round (6 mos) regimen? It’s a fairly new treatment according to my oncologist, and has shown to reduce chances of recurrence but it’s a strong drug. I was diagnosed in April w Stage 2B TNBC, HERS-Negative. Had AC-T chemo by infusion but had to stop early due to neuropathy, after a few weeks had surgery to remove tumor and 5 sentinel lymph nodes with clear margins so was supposedly cancer free but there was still cancer in the tumor that was removed. This was followed by 36 radiation treatments, just completed last week. But because there was active cancer left in the tumor, I’m a candidate for this additional oral chemo. I’m worried about the side effects, especially the hand/foot syndrome which sounds very painful and debilitating. I’m in my 60s with other medical conditions so am trying to weigh the benefits vs risks of taking Xeloda. Sounds like there’s an equal argument for doing it or not, in my particular case, but I need to decide fairly soon or it will not be as effective. Really struggling to decide what to do. Anyone had a similar scenario? Comments? Thanks!

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I just read article that mentioned Immunotherapy for locally advanced triple-negative breast cancer.

Article:
https://cancerblog.mayoclinic.org/2021/12/16/the-4-types-of-systemic-therapy-for-breast-cancer/

Laurie

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@imlistening21

Hello, has anyone gone through the oral chemo (Xeloda) 8 round (6 mos) regimen? It’s a fairly new treatment according to my oncologist, and has shown to reduce chances of recurrence but it’s a strong drug. I was diagnosed in April w Stage 2B TNBC, HERS-Negative. Had AC-T chemo by infusion but had to stop early due to neuropathy, after a few weeks had surgery to remove tumor and 5 sentinel lymph nodes with clear margins so was supposedly cancer free but there was still cancer in the tumor that was removed. This was followed by 36 radiation treatments, just completed last week. But because there was active cancer left in the tumor, I’m a candidate for this additional oral chemo. I’m worried about the side effects, especially the hand/foot syndrome which sounds very painful and debilitating. I’m in my 60s with other medical conditions so am trying to weigh the benefits vs risks of taking Xeloda. Sounds like there’s an equal argument for doing it or not, in my particular case, but I need to decide fairly soon or it will not be as effective. Really struggling to decide what to do. Anyone had a similar scenario? Comments? Thanks!

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Xeloda isn’t really a new drug, but I am sure they are using it in new protocols all the time. When you mentioned the hand and foot syndrome are you referring to heat/cold sensitivity, or more neuropathy? I think all chemo therapies have side effects but some are only temporary to the treatment period. Has your doctor or oncology nurse discussed any of this with you?

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@auntieoakley

Xeloda isn’t really a new drug, but I am sure they are using it in new protocols all the time. When you mentioned the hand and foot syndrome are you referring to heat/cold sensitivity, or more neuropathy? I think all chemo therapies have side effects but some are only temporary to the treatment period. Has your doctor or oncology nurse discussed any of this with you?

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Thanks for your response. You’re right, Xeloda isn’t a new drug but according to my oncologist using it after radiation, like in my case, is fairly new she said. I have neuropathy that developed during my AC-T chemo therapy and I continue to have it 5 MOs after the initial chemo treatment. I take medication that relieves the nerve pain. From what I’ve read about Hand/Feet (or foot) syndrome it sounds much worse than just hot/cold sensitivity (which I don’t currently have) and can include peeling and blistering skin, cracking and in severe cases may make it difficult to wear shoes and walk. That’s what I’m most worried about and not being able to use my hands. Yes, I’ve discussed this with my dr but she left the decision to me so I’m trying to get as much info as I can.

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@imlistening21

Thanks for your response. You’re right, Xeloda isn’t a new drug but according to my oncologist using it after radiation, like in my case, is fairly new she said. I have neuropathy that developed during my AC-T chemo therapy and I continue to have it 5 MOs after the initial chemo treatment. I take medication that relieves the nerve pain. From what I’ve read about Hand/Feet (or foot) syndrome it sounds much worse than just hot/cold sensitivity (which I don’t currently have) and can include peeling and blistering skin, cracking and in severe cases may make it difficult to wear shoes and walk. That’s what I’m most worried about and not being able to use my hands. Yes, I’ve discussed this with my dr but she left the decision to me so I’m trying to get as much info as I can.

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Only you can make these decisions, but I understand the need to discuss these things. What I know about this is that it is not like the neuropathy we get from chemo that sticks around after we are done. It is a temporary condition caused be leakage of the medicine through the capillaries in your hands and feet. When the medicine stops, so does the problem.
Much like the your previous regimen, if the side effects are too much you can discontinue the drug, only in this case it will end the side effects as well.
On the pro side, you may not even get this if you didn’t get it before, because adriamycan, one of the drugs you took initially is one of the worst offenders of this.
On the con side if you work with your hands or on your feet and you do get it, it can be debilitating.
I am hoping that someone else here might chime in with a little more personal history with this, I had a tiny bit of disturbance in my hands and feet but nothing to really slow me down. I don’t know if you have read this article but it does have some good information.

https://www.breastcancer.org/treatment/side_effects/hand_foot_synd
Do you have a good trusting relationship with your doctor? Did he offer any alternatives to xeloda? How long of a regimen is he recommending?

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@auntieoakley

Only you can make these decisions, but I understand the need to discuss these things. What I know about this is that it is not like the neuropathy we get from chemo that sticks around after we are done. It is a temporary condition caused be leakage of the medicine through the capillaries in your hands and feet. When the medicine stops, so does the problem.
Much like the your previous regimen, if the side effects are too much you can discontinue the drug, only in this case it will end the side effects as well.
On the pro side, you may not even get this if you didn’t get it before, because adriamycan, one of the drugs you took initially is one of the worst offenders of this.
On the con side if you work with your hands or on your feet and you do get it, it can be debilitating.
I am hoping that someone else here might chime in with a little more personal history with this, I had a tiny bit of disturbance in my hands and feet but nothing to really slow me down. I don’t know if you have read this article but it does have some good information.

https://www.breastcancer.org/treatment/side_effects/hand_foot_synd
Do you have a good trusting relationship with your doctor? Did he offer any alternatives to xeloda? How long of a regimen is he recommending?

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Yes a good relationship with her. No, she didn’t offer an alternative other than to say I had the option to take this additional treatment. She has always let me know of other options if they were relevant in my particular case so trust her.

I didn’t know the neuropathy I developed during AC-T was permanent. I thought the reason we stopped treatment early was to prevent any permanent damage.

Thanks for sending the article, I’ll check it out.

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@imlistening21

Yes a good relationship with her. No, she didn’t offer an alternative other than to say I had the option to take this additional treatment. She has always let me know of other options if they were relevant in my particular case so trust her.

I didn’t know the neuropathy I developed during AC-T was permanent. I thought the reason we stopped treatment early was to prevent any permanent damage.

Thanks for sending the article, I’ll check it out.

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It isn’t always permanent but it can definitely hand around a while.

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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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@auntieoakley

I am not triple negative, but I do know a bit about it. This is just a hard thing to suddenly feel things changing under our feet. Can you explain a little more about your journey. When you say you have had estrogen positive for 21 years, have you had active breast cancer for 21 years or did you have that cancer 21 years ago treated successfully and now you have another diagnosis? Do you have staging for this triple negative? Has your doctor recommended treatment yet?

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The clinical manifestation of triple-negative breast cancer is an aggressive course, with a higher risk of distant metastasis, a higher chance of visceral metastasis than bone metastasis, and a higher chance of brain metastasis. The risk of distant metastasis of triple-negative breast cancer reaches its peak at 3 years, and may decrease thereafter. The median tumor size of triple-negative breast cancer is 2 cm, and 50% have lymph node metastasis. The histological grade of this type of breast cancer is mostly grade 3, and the proportion of cell proliferation is relatively high.

Treatment
There are no specific treatment guidelines for triple-negative breast cancer. Therefore, its treatment is generally carried out according to the conventional standard treatment of breast cancer.
1. Chemotherapy
Compared with other types of breast cancer, chemotherapy is more effective for triple-negative breast cancer, but if it is just a conventional standard treatment, the prognosis is still very poor.
2. Adjuvant chemotherapy
FEC sequential docetaxel chemotherapy has a better response. Taxanes have a certain effect on triple-negative breast cancer. Platinum drugs may be more effective in triple-negative breast cancer. Cisplatin neoadjuvant chemotherapy is quite effective.

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@auntieoakley

I am not triple negative, but I do know a bit about it. This is just a hard thing to suddenly feel things changing under our feet. Can you explain a little more about your journey. When you say you have had estrogen positive for 21 years, have you had active breast cancer for 21 years or did you have that cancer 21 years ago treated successfully and now you have another diagnosis? Do you have staging for this triple negative? Has your doctor recommended treatment yet?

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im in very similar situation.had er pos 21years ago...now surg for 3Nbc...now margins/nodes all clear...not anxious to do rec chemo prefer holistic supps,diet,exercise

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