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Inflammatory BC - Triple neg - chemo, rad then surgery

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  • NatureYogi
    NatureYogi Member Posts: 135
    edited April 2021
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    I started chemo on March 9, Adriamycin and Cytoxan dense dose. Before the first treatment I was in bad shape, right side swollen and limited mobility in my right arm. First treatment amplified everything, After a week in, my WBC dropped and I was running fever. I went to bed around 10pm and prayed big time. I woke up at 1:00am and most of the swelling went down on my right side and most of my arm! They say it was the chemo, but I say it was divine intervention. Glory be to God.

    I have a wonderful husband that takes good care of me, I'm able to work from home (so grateful for that). I moved into the guest bedroom, so he can get some sleep, I take up the whole bed with pillows and my cat Sundance sleeps in there, watching over me. 90 year old Dad about 35 minutes away and two sisters that keep me uplifted and going.

    I'll check that book out....I love anything inspirational.

    I hope you all have family close by too!




  • EBBA12
    EBBA12 Member Posts: 36
    edited April 2021
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    natureYogi

    Not so much with family close by, my two kids came home to take care of me. My sons drives me everywhere so I would not be late for my appointments. YOU KNOW HOW DIFFICULT IT IS with parking. I am NOT being treated at a cancer center, I have to travel to different locations, some 50 minutes away... which is annoying and taxing.

    I’m glad you find the book interesting.

    I believe your reduced swelling was both chemo and God’s divine intervention. We all know that God is in charge. God is our healer. God is merciful and kind, anda loving father. We are very lucky be his daughters.

    Cat 🐈 cute - you have a protector. Your dad is 90, wow, and only 35 minutes away. How is he handling everything especially with covid? Does your dad still drive?

    Everyone, thank you for the 🙏 and well wished, good vibes, angels, for my upcoming surgery. Stay safe everyone, I will be thinking of you. I will be in the hospital either 1-2 days. Good news it will be a private room.

    EBBA

  • NatureYogi
    NatureYogi Member Posts: 135
    edited April 2021
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    EBBA,

    So glad you are getting a private room! What time is your surgery? I'll be thinking and praying for you, all will be well!



  • EBBA12
    EBBA12 Member Posts: 36
    edited April 2021
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    NatureYogi

    Yes private room, I have to be at the hospital @ 6am tomorrow. They did not tell me the time my surgery, maybe around 8am. I do understand the first day I will have a liquid diet...I only found about that today.

    Thanks for the prayers and well wishes.

    I’ll try to keep you updated when I can.

    EBBA

  • lw422
    lw422 Member Posts: 1,403
    edited April 2021
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    Good luck tomorrow, EBBA!! My best wishes to you for a successful surgery. Hugs!

  • EBBA12
    EBBA12 Member Posts: 36
    edited April 2021
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    thanks so LW422.

    I will try to post updates. EBBA

  • EBBA12
    EBBA12 Member Posts: 36
    edited April 2021
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    Had surgery and I'm ok and on pain meds. In my private room but I have to call nurse for bathroom assistance because they measure my urine. I am on Oxygen because I'm at 92-95 and need to be 98-100. It happens with chest surgery.

    Breast tumor removed + BS believes she got clean margins. She said skin look good too according to pathologist pathologist STILL HAS TO CHECK everything under the microscope. THEY have Took skin graft from my leg not as big as they initially thought.

    Eating hospital food is not great for my diet - you can select your meals but ..My Weight 139 before I will see what I am after I go home. BS thinks I might go home tomorrow, after she sees me tomorrow,

    Right now I'm not mobil unless assistance from nurse. I take off my mask when I am in my room alone, they knockbefore entering. Icing my breast. Compression on both calf legs to monitor both legs to avoid blood clots.

    Ancef general drug antibiotic... pain meds was Celebrex lyciira plus extra strength Tylenol 975.

    EBBA

  • mamacure
    mamacure Member Posts: 256
    edited April 2021
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    Good job EBBA12, glad to hear your surgery went smoothly, hope all turns out well with pathology reports. Also happy to hear leg graft wasn't as big as you thought. Rest up, sending you healing energy & no pain. Keep us posted when you get home.

  • NatureYogi
    NatureYogi Member Posts: 135
    edited April 2021
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    EBBA,

    Get plenty of rest, good to hear surgery went well.

    Praying for speedy recovery!



  • lw422
    lw422 Member Posts: 1,403
    edited April 2021
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    Thanks for checking in, EBBA! We are all thinking of you today, and so glad it went well. Take care and don't try to overdo it, girl. Hugs!

  • EBBA12
    EBBA12 Member Posts: 36
    edited April 2021
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    I'm home. BS ordered 3x pain meds for my pharmacy but only 1 of 3 were sent. I called the BS since something is a miss. Take pain med 2x a 10:30 am and 10:30 pm + Tylenol extra strength 3x a day.

    its raining and thundering here, off and on. but I got home before it started...but I hope and pray we don't loose power because of VAC (for drain tubes) it has battery pack that lasts for 2 hours. VAC for my drains so I do not have to do anything. Device will accompany me to the PS appt on Friday.

    I feel ok, BS told me I could leave 1pm, they told me at 10:40 they would come and help me get dressed. I called at 12:45 because my son was already here to take me home and I was still not dressed. When they eventually came in (2 people to get me ready) I did not have time to change out of their mesh underwear, and they put my Veloce pants on backward. I bought large so they would be baggie....but I noticed lol.

    🙏👍 for HEALING + clean margins on pathology report and NED.

    EBBA

  • lw422
    lw422 Member Posts: 1,403
    edited April 2021
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    I'm glad you're home and I hope you're resting comfortably without pain, EBBA. As for getting dressed to leave the hospital, I'd have put my robe on and said "get me outta here." :biggrin:

    Let us know how it goes; my best to you for a speedy recovery and good news on the pathology!

  • NatureYogi
    NatureYogi Member Posts: 135
    edited April 2021
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    EBBA,

    Will your sons stop in and check on you? Hope you are doing well and are comfortable, getting plenty of rest.

    I had a time on Tuesday, had to get a blood transfusion, hemoglobin took a dive to 6.9. The nurse at the hospital said they didn't have any numbing spray or cream, she tried accessing my port and ouch!!!! Hurt bad. I told them to put IV in arm, they couldn't find a vein that would cooperate. I started crying like a 5 year old and told them I wanted to go home. Another nurse came and she wanted to try accessing my port, success finally! Good news is, I do feel better with more energy. Tomorrow is treatment #4 and I'll see Oncologist.

    Everyone hang in there!


  • EBBA12
    EBBA12 Member Posts: 36
    edited April 2021
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    NATURE YOGI, OMG I am sorry to hear about your port issues. Some medical personnel are better than others. I’m glad you finally got a good one. PS I would cry too!

    I had an issue when someone punched my port to hard it was never the same since.

    Make sure no touches your right arm (cancer arm). YOUR RIGHT ARM IS OFF LIMITS FOR EVERYTHING. They all should know better, but it happens —- so no IV CHEMO infusion, NO drawing or administering blood, also no blood pressure should be taken on your right side.

    Good luck on your 4th treatment tomorrow and speaking to your MO.

    Remember to let us know what he reports. I remember you had good response with your swelling

    Sending a powerful 🙏 prayer for healing your way. Read this — I curse this cancer at the roots like Jesus did at the fig tree. I command you to leave my body and never to come back again.

    EBB


  • NatureYogi
    NatureYogi Member Posts: 135
    edited April 2021
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    EBBA, How are you feeling today? Hoping each day gets better, get plenty of good nutrition so you can heal faster.

    Thanks for telling me about cancer arm being off limits, I had no idea! I had my last AC treatment today, graduating to Taxol on May 7.

    LW422-what is going on in your world? Hope you are doing ok!

  • lw422
    lw422 Member Posts: 1,403
    edited April 2021
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    EBBA--hope you're feeling OK today.

    NatureYogi--I'm doing well, thanks. Taxol has been so easy for me so far that I am really dreading AC coming up in a few weeks. Glad to hear you've had your last AC!! YAY!

    As for "cancer arm," I believe EBBA means after breast surgery. The possibility of lymphedema is increased after surgery so any injections, blood pressure readings, etc. should be on the non-surgical side, especially if lymph nodes are removed.

  • EBBA12
    EBBA12 Member Posts: 36
    edited April 2021
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    sorry I know how dreading your next chemo treatments. An be, keep in mind, keep your eye on the prize.

    NatureYogi - Make sure you eat protein, triple negative can drink soy milk as well as Greek yougurt. BUT By all means confirm this with your treatment center before adjusting your diet,

    NATUREYOGI - no one should touch you cancer side arm. That arm is off limits for anything from diagnosis thru treatment. (So no blood pressure, and no IV chemo or drawing blood). I found that out early on, almost flabbergast, when infusion Almost used my right arm, but the quickly regained their senses.

    EBB

  • NatureYogi
    NatureYogi Member Posts: 135
    edited April 2021
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    EBBA, Did you get a robe or shirt with the drain pockets for your post surgery? When do you go back in for check up? My brain is starting to shift towards surgery, I see surgeon next Thursday, maybe he will say get MRI, we will do surgery, then you finish with Taxol. But we know things don't go the way we want, HA!

    I noticed at surgeons office and treatment center they always take BP, etc on left, no hesitation. But at the hospital for the transfusion they kept going to the right. Hopefully I won't have to go back there!

    LW422-How many Taxol do you have left? As far as the AC, I'm not going to lie, it was rough at times, but you will get through it. Main thing is to drink water all the time. I haven't had bad nausea, I eat small meals throughout the day. Take naps, I think I was fatigued the most. Once you get past day 3-4 of infusion you feel better. Have you ever had acupuncture? That has helped me a lot, I haven't had to take very much nausea meds at home.

    Hope everyone is having a good day, storming here in Savannah.


  • EBBA12
    EBBA12 Member Posts: 36
    edited April 2021
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    sorry to hear about the storm, batten down he hatches.

    I did not receive the Manual drains with tubes that you had to empty twice a day so no special robe needed.

    They gave me a MICRO VAC that had to be plugged into a wall that had a battery attachment that lasts 2- 7 hours depending on who you ask. I had the same thing in the hospital only bigger. So, I had to carry the small box over my shoulder with a strap. It was annoying but thinking I only had it until Friday when the BS removed the drains. Much shorter than 10 days to 3 weeks with the manual drains.

    Does that help. The Vac Ran 24 -7 and I only had one from tues - Friday 4 days.

    Protect you right side. EBB

  • NatureYogi
    NatureYogi Member Posts: 135
    edited April 2021
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    I hope I get the Micro Vac! I see surgeon this Thursday, I'm going to ask him him about it.

    Hope you are doing well!

  • EBBA12
    EBBA12 Member Posts: 36
    edited May 2021
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    How is everyone doing, air hugs 👐 and prayers 🙏 to all.

    LW422 Starting a new chemo drug soon, how are you holding up?

    NatureYogi how did meeting with BS go, is he on board for the micro Vac? What did d he have to say?

    BS said I achieved clean margins but not so sure about PCR because I see tumors mentioned below in pathology report. Even though they removed level 1 + 2 lymph nodes. READ below —- also My HER2 negative changed after surgery. I started as triple negative - inflammatory BC, so HER2 negative was a I.0 - after initial pathology came back changed to 2.0 neutral, so they did a supplemental FISH test - results just in I am now 2.1 so HER2 positive. Not sure what that means for treatment. I am meeting MO on 5/6 to go over treatment options. I don't have my mediport anymore because of skin infection so I have that to discuss with MO too. Not sure that they can put it same back in the same spot as before removing the scar tissue - I wouldn’t mind because I was left with a terrible scar.

    I have to see BS in 3 weeks for FU then in 3 months because of dog ear left ON RIGHT side and it’s still swollen so she would she would do an in office procedure

    pathology report - A Breast, right, modified radical mastectomy:

    INVASIVE DUCTAL CARCINOMA, NOS, HISTOLOGICAL GRADE 2.

    MULTIFOCAL, 6.5 CM IN LARGEST DIMENSION, PRESENT IN ALL 4 QUADRANTS.

    TUMOR INVOLVES DEEP DERMIS AND BASE OF NIPPLE.

    MARGINS ARE UNINVOLVED BY CARCINOMA.

    13 AXILLARY LYMPH NODES: 4 WITH MACROMETASTASES, 2 WITH

    MICROMETASTASES AND 7 WITH ISOLATED TUMOR CELLS.

    DEFINITE RESPONSE TO PRESURGICAL THERAPY IN THE INVASIVE

    CARCINOMA (1-5% RESIDUAL TUMOR) AND LYMPH NODE METASTASES (20% RESIDUAL TUMOR)

  • lw422
    lw422 Member Posts: 1,403
    edited January 2022
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    Hi EBBA and everyone. EBBA, how are you feeling? I hope you're doing well.

    I'm a nervous wreck over a scheduled ultrasound on Tuesday. I suppose they want to see how my cancer is responding to chemo which scares me. I don't notice much change in my cancerous breast; it's still pink and a bit swollen so I'm trying not to freak out.

  • EBBA12
    EBBA12 Member Posts: 36
    edited May 2021
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    I don’t have the same amount of energy , feeling ok but my body is healing.

    Your tumor was small 1cm mine was 4.5cm and my breast outside affected skin affected area measured 13cm. Taxol did not work for me. My skin looked and felt the same during all my months of chemo, 4 rounds of A/C then 4 rounds of T. BECAUSE my breast did not look any better during treatments, my breast actually looked angrier and harder during treatments. I did not have a scan between different treatments, so I had no knowledge what was happening inside. I wish I would have. Knowledge is a wonderful thing.

    So after my 8 rounds and no tumor or breast change the tumor board opted for combo chemo & radiation concurrent treatments that worked well and reduced my tumor to 45% and detached itself from my chest wall. I HAD 33x treatments overall, 50.4 gray radiation and the last 4 60.0 gray I was vigilant on cooling the radiation area after by putting on MIADERM cream 4 times a day.

    I am glad your medical team is checking and fighting for you.

    Eat well, drink a lot water and do something to maintain your strength and calm your mind. 🙏 and air hugs. EBBA

  • pchyen
    pchyen Member Posts: 96
    edited May 2021
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    Hi EBBA, going from TN to HER2+ opens door for HER2+ target therapy (Herceptin, Perjeta, etc). Your MO may decided on Herceptin+/-Perjeta to target HER2+, and maybe TC chemo to go with HP.

  • EBBA12
    EBBA12 Member Posts: 36
    edited May 2021
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    pchyen thanks for the input, much appreciated 👏

    I heard about her Herceptin and Pejeta. Not sure if I loose my hair again?

    I already had AC + T so cyclophosphamide and doxorubicin , then pactixel...all three did not do much. I had a 45% tumors reduction with concurrent cisplatin and radiation. Surgery yielded clean margins and level 1&2 lymph nodes removed.

    Now with HER2positive there will have to be foods I need to avoid FIDOEXTROGEN so no more soy which is where I received most of my protein. With COVID food choices are limited to what the stores are selling. I know BS just recommended going organic.

    I will post after I see MO on thursday. I appreciate the input for any strategy, treatment level as well as anticipated monitoring schedule. I also had my medi-port removed because after IV #7 due to a skin infection, so not sure if they can put it back in on the left after removing scare tissue. Right side is a mess just having surgery modified radical mastectomy with thigh graft

    EBBA

  • pchyen
    pchyen Member Posts: 96
    edited May 2021
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    Hi Ebba, you will not lose hair if you are only on Herceptin/Perjeta. You will lose hair if your MO adds TC chemo.

    Also, being HER2+ And ER-/PR- you don’t need to avoid FIDOEXTROGEN. HER2+ does not feed on estrogen

  • EBBA12
    EBBA12 Member Posts: 36
    edited May 2021
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    LW422 good luck on your ultrasound today —- I know you are a nervous wreck

    Just realize this is to help you❗️IF they need to adjust your chemo, after they see how you are responding to treatment. Remember I did not have intermittent screening between chemo drugs, also changes could be on the inside and read it takes at least 3 treatments for see results.

    🍀EBBA

  • mamacure
    mamacure Member Posts: 256
    edited May 2021
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    Thanks for keeping us updated EBBA, hope you continue to recover well from your surgery. I'm sorry to hear about your port infection.

    Good luck LW422 on the ultrasound!

    My MO said my lumps seems smaller by touch so that is good news, she will have me do another MRI in 2 months to check progress, we shall see the truth then. Boobie is not red or swollen, but thick skin dimples are still there. Scared but want to get to the other side of surgery like EBBA.

    I think Carbo is kicking my butt every 3 weeks. Just had a hell of a nauseated weekend, barely could drink with no energy. The shot for low WBC count was no fun and I think that added to the low energy. So far no bone pain, taking Claritin for 10 days. Next Carbo round, I may have to take more anti-nausea med. Only took half since constipated, but doc thinks it's carbo that makes constipation. Ugh. Also, I'm bald now. Shaved off the burnt hair.

    Thinking of you all. Stay strong. It's rough, but we can do it.


  • EBBA12
    EBBA12 Member Posts: 36
    edited May 2021
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    MAMACURE I missed seeing your fuchsia umbrella ☂. Wow - tumor reducing is always GREAT news...also not red or swollen is another double plus. I am glad they are monitoring your progress closely with MRI +/or CT scans so they can recommend follow-up treatments . If it reduces enough - maybe surgery before radiation❓HAIR is the easy part, it does grow back

    I had cisplatin + radiation before surgery because mine tumor did not reduce and my breast stayed red swollen.

    I heard GOOD things about carboplatin, I was originally slotted for carboplatin but they changed it is cisplatin when I went concurrent with radiation. Not sure why - can't look back just ahead. I run anything I take with my MO but senokot worked for me one tablet after dinner for constipation.

    IBC is always skin involvement which is why it is often misdiagnosed as an infection. Stay rested and stay 💪 my friends, prayers🙏For healing and sanity for everyone 😇 EBBA


  • NatureYogi
    NatureYogi Member Posts: 135
    edited May 2021
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    Hope everyone is doing well, let us know about your check ups/ultrasound/scans.

    I met with my BS last Thursday, he was pleased with the shrinkage of my lymph nodes. They were hard and protruding in the beginning, he said he can't feel them at all. Breast is still a little thick, but not as bad. I'll start Taxol tomorrow, I finished my 4 rounds of AC. I've got these little bumps/pimples from chemo all over.

    I'll do 4 DD Taxol, then probably scans to see where I'm at. Taking it one step at a time!

    Healing prayers for everyone!