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Triple negative breast cancer

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Sgg0340
Sgg0340 Member Posts: 21

I’ve recently been diagnosed with triple negative breast cancer on August 9, 2019. I start chemo next week and I’m scared. I’m stage 3 and it’s in my lymph nodes too but good news is it hasn’t spread. I’m not scared to lose my hair but I do have questions about when receiving chemo through port, does it hurt? I know I sound like a big chicken and I guess I am but I’m curious. I got on the internet tonight and found this so it actually help me with knowing I’m not alone when I’ve seen all these people on here and a lot worse off than I am. I pray for all of you because my mind never has stopped since that day. My family has been tore apart emotionally and that’s hard. Any info from a more experienced person here

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  • HappyAnyway
    HappyAnyway Member Posts: 380
    edited August 2019
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    Well Sgg0340, I'm sorry to hear about your diagnosis.

    I'm also triple negative. So far I've had 4 AC. I am currently on Taxol and Carboplatin.

    It's normal to fear the unknown. Once the first treatment was administered, at least for me, infusion really hasn't been bad. It's the side effects afterwards that need my attention. Your MO should supply you with the prescriptions needed to combat the side effects. Most symptoms should be manageable.

    Do you have a prescription for EMLA (lidocaine cream)? If not, ask for one. It took me a few infusions to find the application that works for me. Those few hurt slightly. I mean very little. It doesn't hurt now. What I do is apply a thick layer onto and slightly around my port. I don't rub it in. I place plastic wrap on it and secure it with medical tape. I do this one hour prior to my appointment.

    You may want to check out the August chemo thread, too.

    Prayers back to you.

  • aaoz19
    aaoz19 Member Posts: 7
    edited August 2019
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    Hi Sgg0340,

    Sorry to hear about your diagnosis. I was diagnosed with IDC, Triple Negative Breast Cancer in March 29, 2019. I have had 4 rounds of A&C. I had my 11th dose of Taxol today and my final dose will be next Friday. I was recommended to use a prescription Lidocaine cream for my port which I received from my medical oncologist. I put a heavy blob of it on the port and cover it with a piece of saran wrap about 1 hour before my treatment. It has made it painless for me - I highly recommend it! I am also stage 3 and have a lymph node that is being treated as suspicious. It showed up in my mammogram and ultrasound. 3 biopsies of it came back neg., however my MRI made them believe it was cancer. I will be having surgery the end of September and will hopefully know for sure if it was pos or neg.. Following surgery I will have radiation treatments as well.

    I completely relate to how scared you are - it is all so overwhelming and scary! It's a whole new world and a whole new normal. I never thought I would see the end of my chemo - but here I am with 1 more to go. You can do this! I had a very difficult time with the hair loss. It came 2 weeks after my first chemo treatment. My hair has started growing back (around week 7 of Taxol).

    I hope you have a great support system. I have also found the oncologist nurses to be so wonderful, caring, and full of supoprt! You will be in my prayers as well.

    Any questions about anything please ask and I will be happy to answer as best as I can!

    I know it can be hard, but try to stay positive and be strong! And it's okay to cry and let it out too!

  • moderators
    moderators Posts: 8,051
    edited August 2019
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    Sgg0340 and aaoz19 - First of all, we wanted to welcome you both to Breastcancer.org, and tell you that while we're sorry for what brings you here, we're glad you found our Community and decided to reach out!

    As you can already see, there are many threads and forums to post in. Given your situation, you may want to post also in the following topics of the 'Chemotherapy - Before, During, and After' Forum:

    Weekly Taxol group

    Chemo Starting August 2019

    More Tips (and a Shopping List) for Getting Through Chemo

    Also, you can meet others who have Stage III breast cancer in the Stage III Breast Cancer forum.


    We hope this helps! Thanks for joining and posting and we look forward to hearing more from you soon!

    The Mods

  • Sgg0340
    Sgg0340 Member Posts: 21
    edited August 2019
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    thank y’all this is a huge help for my mindset. I did get the cream to rub one hour prior to chemo. I found out all of my lymph nodes tested positive too so after chemo they will be coming out. I think after chemo Tuesday I will shave my head next weekend. I’m starting with something nicknamed red devil and I will in total have 4 different types so this should be fun. I feel like I’m fixing to be nuked in the microwave. I appreciate your time and I will be praying for you all too! If one thing comes from this is it has made my walk with God much closer and I haven’t lost my sense of humor along the way. Stay positive my friends

  • aaoz19
    aaoz19 Member Posts: 7
    edited August 2019
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    Hi Sgg0340!

    Make sure when they give you the red devil one you have ice chips to chew on. This will help to prevent mouth sores. I still always had a bad taste in my mouth - metallic, but I never got mouth sores. The ice chips taken during administering of the red devil is supposed to prevent them - they did for me so I would recommend that. You got this!!

  • KSteve
    KSteve Member Posts: 190
    edited August 2019
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    Sgg430 - You're getting good advice from the ladies that are going through chemo now. I just wanted to reach out to you as I'm approaching 9 years from diagnosis. I was also TN stage 3 with lymph nodes involved. By the time I had surgery, there was no evidence of disease in my pathology, including the lymph nodes removed. So I am hoping you will have the same result. Good luck with your fight, you can do this!!

    Hugs,

    Kathy

  • aaoz19
    aaoz19 Member Posts: 7
    edited August 2019
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    KSteve - It is wonderful to hear that you are 9 years out and doing well! Gives me hope! Thanks for sharing that.

  • Sgg0340
    Sgg0340 Member Posts: 21
    edited August 2019
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    I'm blessed to have found this website where I can talk with others in the same boat. Thanks for the info and congrats on 9 years that's awesome! Also it's awsome your still encouraging others still! Also I’m blessed with growing spiritually in my journey

  • snaffle53
    snaffle53 Member Posts: 107
    edited August 2019
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    I am also just diagnosed with TNBC. I get my port next Wednesday morning and first chemo that afternoon. I’m also getting Adriamycin the red devil. And Cytoxan. These two for 4 infusions every other week. Then weekly Taxol for 12 weeks. The cancer is just in my lymph nodes. No primary tumor in the breast. Extent of surgery after chemo as yet to be determined. Radiation to follow surgery.

    Thanks for the tip about ice chips to prevent mouth sores. This is all so unreal still. Though, it’s sure to hit me soon. Best of luck to you also going through this. None of this is for sissies

  • HappyAnyway
    HappyAnyway Member Posts: 380
    edited August 2019
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    In addition to keeping your mouth cold, you all may want to consider icing your hands during Adriamycin. My nails began to look bruised during that phase. On my 4th and final AC infusion, my nurse suggested that I ice my hands. Really, my last infusion! Smh. I find that a large, gel ice pack placed over both of my hands has done the trick during Taxol.

  • TSipper
    TSipper Member Posts: 1
    edited August 2019
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    I’ve also been diagnosed with TNBC and still in the mode of overcoming the shock wondering if I’m dreaming. I decided to have surgery first because my scans, MRI, EKGs and the list goes on were all great. The surgery was nearly painless; an outpatient procedure. My next round of treatment is chemo and I’m trying to decide whether or not to volunteer for a research program which includes Carboplatin. I need to ask if Carboplatin can be included with my chemo treatment without entering the research program. My biggest fear is having a grade 3–aggressive. If there are any remaining cells in my body now, finding it is extremely difficult. Survival rate diminishes quickly.

  • martaj
    martaj Member Posts: 307
    edited August 2019
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    Sgg0340, I' m very sorry to hear of your dx. I was also dx with triple neg breast cancer July 8 2019. I have axially node and breast node chain involvement. Stage 3. So far I've had 3 taxol and and 1 carboplatin treatments. Every 4th week either atezolizuab or placebo. I use the numbing cream 1 hour before accessing the port and it works wonders. So far only big side effects of chemo is hyper activity the night after chemo and next day. One day 4 I'm very tired. The port does not hurt at all, thank god for it. I have been losing my locks, started this week big time. Going to be cut today. My wigs and hats all set. I will have a total of 12 taxol infusions, on weeks 1,4,7,10 carboplatin and trial drug or placebo, then the red devil so to speak for 4 doses AC. then surgery and radiation, followed by a year every 3 weeks of atezolizuab or placebo. I wish you well. Think positive, I have a great support group of family and extended family, plus I attended our local cancer group held once a month which helps greatly to talk about the disease with others who are knowledged. I don't know about you but after being dx and before I started chemo I was in a tornado. Couldn't get out of my own way with the emotional stress. Now that there is a plan and it has started much more down to earth. Take each day at a time and listen to your body. You will get through this. It is a large bump in the road of life, as if we all haven't had bumps in roads before. I am extremely active so when I'm tired I just crash. Not like me. But I am learning to listen to what my body is saying and I've actually have had to learn to say no to certain things that I would always give in and do, Walk, get some fresh air to clear your mind, cry, shout out to no one in particular you'll feel better. Hang in there.

  • Sgg0340
    Sgg0340 Member Posts: 21
    edited August 2019
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    thank you for sharing. It really helps to talk to others that have it. I think after a week of chemo I’m gonna shave my head so I can at least be in control of that part lol. My dr said surgery after my chemo and then radiation to follow. Not real sure why in that order but it will all be done regardless. I’m waiting on my gene test to come back. Good luck 🍀 and hang in there my fr

  • mountainmia
    mountainmia Member Posts: 857
    edited August 2019
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    Sgg, with a stage 3 diagnosis, that usually implies a larger tumor. Having chemo before surgery makes it likely the tumor will be much smaller, or sometimes even gone (pathologic complete response, or pCR) before the surgery, which makes the surgery simpler and more likely to be successful. Good luck with your chemo. Check in with the threads on chemo support and tips. They are very helpful.

  • Sgg0340
    Sgg0340 Member Posts: 21
    edited August 2019
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    ok so today I took my first treatment of red devil and three hours after getting home I’m sick as a dog! I can’t keep anything down. I’m taking zofran that was prescribed but any suggestions and also is this what I have to look forward to now

  • HappyAnyway
    HappyAnyway Member Posts: 380
    edited August 2019
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    Sgg0340, do you have another anti nausea prescription to alternate with? I take a 500-550 mg ginger capsule twice a day, per my MO. Ginger candy, ginger beer or ginger ale may help.

    Santabarbarian, are you around?

    Santabarbarian fasted during chemo. You can search her by name when you are feeling better.

  • Sgg0340
    Sgg0340 Member Posts: 21
    edited August 2019
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    thank you so much for quick response. This is terrible

  • HappyAnyway
    HappyAnyway Member Posts: 380
    edited August 2019
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    I'm sorry, I wish there was something I could do to help you. Several people on BCO have more than one prescription for nausea. The ginger tablets have no SE that I'm aware of. Don't hesitate to call the after hours number for your MO if you can't get the nausea under control.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited August 2019
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    Spa I am so sorry you are having this reaction. I am not sure how to bring it under control for tonight,, but I do have ideas for how you can avoid it next time (search Fasting or Fasting Mimicking Diet/ Dr Valter Longo). Fasting helped me have a very peaceful GI during chemo so I am not that up on nausea meds and can't help the immediate situation much..

    Know that you can get IV fluids (and there are IV meds that work rapidly for horrible nausea). When you get dehydrated even a fluids IV feels so much better. Just an idea, and something to ask your MO for.

  • aaoz19
    aaoz19 Member Posts: 7
    edited August 2019
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    Sgg0340,

    I'm so sorry to hear of your nausea! That's awful! One of my premeds was Aprepitant/Fosaprepitant that was to control nausea for 24 hrs - this was combined with my steroid dexamethasone. I also have two Rx at home to help with any nausea - prochlorperazine and lorazepam. I had 2 incidences of nausea and they helped me. You should call the doctor if you don't get any relief. I wish this wasn't happening to you. There's nothing worse than being sick on top of it all - especially if you aren't resting and able to hold down fluids to stay hydrated. Hope it gets better!! :) Sending prayers your way!

  • kber
    kber Member Posts: 243
    edited August 2019
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    TSkipper - I had Carboplatin added to my cocktail when I had Taxol, but not as part of a study. On the one hand, it is more toxic and expect you should some harsher side effects than on just Taxol alone. On the other, there are several studies that indicate that TNBC patients achieve pathological Complete Response (or pCR in the lingo) more often when Carbo is added and, for TNBC, a pCR is a key to reducing reoccurrence later. I decided the trade-off was worth it and I stand by that decision now.

    In the end, I did achieve pCR. (pCR, by the way, means there is no residual cancer after neoadjuvant (before surgery) chemotherapy.) I can never know whether Carbo was the deciding factor, but given the size of my original tumor, without it, I had only a 30% chance, so it was likely at least very helpful.

    With Carbo, you are likely to be more tired and it also contributes to a likelihood of neuropathy. I iced my hands and feed during Taxol / Carbo infusions to try to ward it off, but did develop mild neuropathy in my fingertips and toes. 4 months out, my hands are almost back to normal and the tingling in my feet is greatly reduces, but it's not zero.

  • HappyAnyway
    HappyAnyway Member Posts: 380
    edited August 2019
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    Sgg0340, how are you feeling today?

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited August 2019
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    Lorazepam = Ativan (in case that's how they gave it to her)


    Slipper, I had T/C but mine was Taxotere not Taxol. I did feel a few tingles, but never got neuropathy.

    I actually did split doses (my request) and had my Taxotere first thing in am, left for lunch/errands (taped off) and then returned for Carboplatin at 4. I did not ice for Carbo, only iced for Taxotere. My girlfriend got Carbo alone for NSCLC, and she did not even lose her hair.

    I would get the Carbo if I were you. You want to slam that cancer with everything you can right now while its still small in your system. You'll feel somewhat lousy anyway whether you get it or not. I don't think it's any worse to have both and it ups the pCR rate by about 10 points.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited August 2019
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    Slipper as you can see I WAS grade 3. I had a huge 3.8 cm tumor with a few smaller satellites near it. I had 2 lymph nodes with active cancer, one was 3 cm. My chemo came first, then surgery. Like kber, I got a pCR. High grade TNBCs can respond VERY well to chemo. So if your tumor was low grade, you did right by having it out pronto, and if it turns out to be high grade the carbo ought to help. Most "basal-like" TNBCs are high grade and those are the ones that respond to carboplatin.

    Also ask your MD about metformin. Very good anti-metastatic properties. Also melatonin 20 mg at night is anti-metastatic (work up to that dose). I did not need either drug for their normal purposes but take both now and will through my 3 year window of prime recurrence risk and probably forever.

    Last I want to mention HEAT.

    Hyperthermia is something that is VERY good against cancer. It causes the cancer cells a lot of distress to be heated. At a lower temp than will kill healthy cells, they give off "heat shock protein" which makes them "visible" to the immune system. Heat a cancer cell to about 107-108, keep it there for 1 hour, and it will die or be very 'wounded.' Normal cells withstand up to 111 degrees. I did an hour of high heat 3-4 x per week during chemo. My breast and underarm were magenta from very light burning but this healed rapidly when I stopped doing it.

    Anyone who can feel their tumor or node can probably use heat as I did. I read something about vets using heat to shrink animal tumors to make them more operable. The vets use a kind of recirculating hot water bottle. Very low tech. I used a VERY hot hot water bottle, changed the water frequently to keep it hot, as hot as I could tolerate. I love a 105 hot tub so I am pretty sure I was in the right temp zone of 108 because it was definitely hotter than I would be able to do in a hot tub.

  • HappyAnyway
    HappyAnyway Member Posts: 380
    edited August 2019
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    Sgg0340, thinking of you today. I hope you feel better soon.

  • Sgg0340
    Sgg0340 Member Posts: 21
    edited September 2019
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    thank y’all for your replies I will be asking the dr about something else. I feel like a wus because after first chemo I made it 2-3 hrs and was sick for 5 days then got a good two days and yesterday was a good morning tilllunch and was sick again. It’s like it comes in waves but I go back for second chemo 9/10. My question is “does each treatment get worse or does ur body ever get used to the torment?

  • mountainmia
    mountainmia Member Posts: 857
    edited September 2019
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    If you haven't spoken with the doc (or doc's nurse) yet, do so today. Don't wait until 9/10. They may change your pre-treatment prep meds, for the day or 2 before chemo. They may be able to help you out now. They may change your treatment meds. They may reduce your chemo dosage a bit. They may give you more or different after-treatment meds. They can't do any of these things if you don't tell them your symptoms. Good luck.

  • mightlybird01
    mightlybird01 Member Posts: 161
    edited September 2019
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    Sgg0340, are you hydrating well throughout the chemo and for at least 2-3 days after? For my fist few chemos, I set myself a reminder on my phone that beeped every h to drink a small glass of water every hour. I think this is very important for your body to be able to flush out the chemicals. After that, I just bought two 1l glass bottles and filled them up in the morning and I just had to make sure I drink those two bottles throughout the day (+1-2 cups of green tea per day). If you don't like the taste of water, add a small amount of juice, or try sparkling water. Sparkling water was actually the only thing I really enjoyed drinking during the AC part of my chemo. Plain water just tasted horrible. But I still forced myself to drink it.

    I agree with the others, you should discuss your symptoms with the nurse and oncologist and see how things can be improved for you. It does not get better with time unfortunately. If everything goes well, it does not get that much worse, but I would definitely not hope that it does get much better either by itself.

  • mountainmia
    mountainmia Member Posts: 857
    edited September 2019
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    mightybird brings up a great point on hydration. Also for the water, I also hated the taste of plain water. I made up pitchers of lemonade Crystal Light, using 2 single-serve packets for a half gallon of water. It made all the difference, and it isn't expensive.

  • Sgg0340
    Sgg0340 Member Posts: 21
    edited September 2019
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    thank you all I will call my dr office and let them know Also did any of u have trouble sleeping after receiving chemo? I can’t sleep any