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Anyone know about the red devil?

Tana36
Tana36 Member Posts: 6

I’m about to start chemo for triple negative breast cancer and that’s one of the drug

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,650
    edited October 2021

    Have you checked out the chemo threads?

    https://community.breastcancer.org/forum/69


  • spookiesmom
    spookiesmom Member Posts: 8,149
    edited October 2021

    I had it the first time around. I had a MUGA test on my heart to make sure all was ok. I had 4 infusion with cytoxin. Wasn’t fun, lost my hair, 34#. Water had no taste. I don’t have any heart issues today from it. It really messes with your white cells, so you will get a shot for that. The name escapes me right now.

    You can do it!!!

  • moth
    moth Member Posts: 3,293
    edited October 2021

    tons of us have had it. It's adriamycin. Check on chemo threads for the October support group.

    Triple negative treatment has been changing rapidly in the last few months. AC+T was standard but you'll see many triple negs now doing carboplatin + taxol + keytruda. And some are doing low dose xeloda after. Be sure your oncologist is super up to date on TN treatment to make sure it's right for you.

    Adriamycin is fine so long as you take all the anti nausea meds as directed & ask for more immediately if they don't work..

  • Tana36
    Tana36 Member Posts: 6
    edited October 2021

    Thanks everyone cause I’m kinda nervous cause I’m not sure what’s the stage. I just know it’s TNBC with a grade 3. I start chemo on Thursday so I was researching the medicines and found that it’s used for early stages TNBC or if it’s spread. So I’m lost cause I had a PET scan but I never received any results from it. I’m thinking the doctor would have let me know if it has spread before Chemo starte

  • Tana36
    Tana36 Member Posts: 6
    edited October 2021

    Thank you.. I’m thinking cause the size of my tumor is why he’s taking that route. It’s 4.1cm and I never received my results from the PET scan so I’m not sure if it spread to my nodes. I’m just so lost and scared right no

  • spookiesmom
    spookiesmom Member Posts: 8,149
    edited October 2021

    Stage hasn’t much to do with it. It’s the TYPE of cancer determines the KIND of chemo used. You won’t know for sure the size of the tumor, or possible spread until after surgery

  • moth
    moth Member Posts: 3,293
    edited October 2021

    Tana, I'd urge you to make an appointment to see your oncologist before you start treatment to get all the results and discuss your options. Are your results not posted online? In the US, most people get results immediately in their pt portal.

    The higher risk you are - which your tumor size qualifies as higher risk - the *more* important to consider immunotherapy (keytruda) and a platin plus either more keytruda later or xeloda.

    This is a rapidly evolving area. Keytruda was approved by FDA this summer for high risk early TNBC. you can read about it here: https://www.breastcancer.org/research-news/fda-app...

    I'd want to know why your MO is not choosing the newer treatment https://community.breastcancer.org/forum/72/topics...

    I mean, there might be very good reasons why this is the right choice for you, but I'd want to know the reasons & understand them. (the new treatment isn't even available in my country so there are still plenty of tnbc people who do AC+T ...)

    Are you doing chemo first and then surgery?

  • Tana36
    Tana36 Member Posts: 6
    edited October 2021

    Yes I’m doing chemo first to shrink the tumor. Instead of Keytruda they’re giving me Neulasta with the Doxorubicin and Cutoxan. I’m going to call the office tomorrow to ask questions

  • moth
    moth Member Posts: 3,293
    edited October 2021

    neulasta is just to keep up white blood cell counts during chemo. It's not a cancer treatment like keytruda (pembrolizumab).

    adriamycin = doxorubicin = red devil

    the other drug is cytoxan. It's the C in AC+T

  • Tana36
    Tana36 Member Posts: 6
    edited October 2021

    Thank you I’m trying to get the understanding of all this. Thank you so much

  • moth
    moth Member Posts: 3,293
    edited October 2021

    You're welcome! it's so much to take in at first. you get a crash course in cancer.....

    any questions, do keep asking. People here usually know the answers :)

  • trose348
    trose348 Member Posts: 2
    edited November 2021

    Hi, did you start the chemo on Thurs.? I know you mentioned the red devil, is that what you had? Can you tell me how you felt right after & then a few days later? TY am going thru the same thing & trying to find info. on this site. I spend all my time researching.

  • Tana36
    Tana36 Member Posts: 6
    edited November 2021

    yes I’m actually finish with my A/C treatments. I start the taxol on next Thursday. I really didn’t have symptoms until like the 3rd day just felt tired and needed to rest and I lost my appetite. Other than that I was fine it last for maybe 3 days and I was back to normal

  • bishopdrive
    bishopdrive Member Posts: 2
    edited November 2021

    I wonder if any others out there have had a real problem with the Red Devil or are my side effects unique? I had the first dose on 11/17 along with Cyclophosphamide and Keytruda. Since then (10 days) I have had to have 2 fluid infusions, been to the ER on Thanksgiving Day, had one Neulasta, extra magnesium twice, extra anti-nausea twice plus very bad headache, diarrhea, nausea, dehydration, and I think possibly constipation. My oncologist ordered new pain meds twice for the headache, and a new anti-nausea. I’ve been in bed for 8 of the last 9 days, and I am not the type of person who sits and relaxes. Today, I think I may be finally on the mend. The nurse in the ER, who previously worked in a cancer facility, told me that the side effects build up as you progress through the cycle. I have to have 3 more doses (3 weeks apart) and I am very fearful of what they may bring. I know I have to do it.

    I had Taxol/Carbo in the first cycle every week for 12 weeks and really had very little trouble. I have also received Keytruda all along and will continue that well into next summer. I think the Keytruda is responsible for the headache, which I have had continually since late August but I dealt with it. Now it is pretty much unrelenting.

    Thank you all for whatever guidance you can provide.

  • moderators
    moderators Posts: 7,693
    edited November 2021

    Hi All, please also feel free to register for our weekly Tuesday Zoom virtual meetup to talk about your treatments, and how they are affecting you.

    This virtual meetup is for people in treatment for breast cancer. If you're undergoing chemotherapy, radiation, or immunotherapy, pre-surgery or recovering from surgery for breast cancer, join us for support.

    To Register, download the Zoom app and click the link below.

    When: Tuesday, Mar , 2021 01:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting:

    https://us02web.zoom.us/meeting/register/tZUrc-Cor...

    After registering, you will receive a confirmation email containing information about joining the meeting.

  • aram
    aram Member Posts: 319
    edited November 2021

    bishopdrive, AC was really harsh on me. I ended up in ER with WBC of 0 and fever on my first round as well. The side effects of AC were not accumulative for me, it was just different every time. My worst was second one. The worst constipation of my life was on the third one, and I didn't have any with other rounds. On the other hand, Taxol side effects were accumulative for me. But even the worst week of Taxol was better than the best week of AC for me. There are people that are the complete opposite.

  • minustwo
    minustwo Member Posts: 13,004
    edited November 2021

    I made it through 6 rounds of TCHP, but with out a pCR. So after surgery my oncologist wanted me to do four rounds of AC (Adriamycin & Cytoxan). I only made it through 3 rounds before my blood levels when through the basement. Because it was Thanksgiving weekend & I refused to go to the hospital (where most people were off on holiday), my blood levels built back up enough w/o a transfusion and I skipped round four. I don't know how I would have done if I hadn't already been through TCHP and lost 30 lbs.

  • BarbTheBCBarbie
    BarbTheBCBarbie Member Posts: 29
    edited November 2021

    red devil starts Tuesday for me

  • trishyla
    trishyla Member Posts: 698
    edited November 2021

    Instead of calling it Red Devil, which makes it sound like something evil and unnecessary, why not call it by its name? It is doxorubicin, also known as Adriamycin. It is a powerful chemotherapy that just might save your life. I, for one, was grateful that it was available for me.

    The side effects can be rough, especially if you've done Taxol first, as chemo is cumulative. I did Adriamycin and Cytoxin first, with mostly manageable side effects. Taxol was much harder for me. Others have terrible side effects with both, and some have none. You just don't know until you've had all your treatments.

    What I do know is that, as someone with triple negative cancer, I had to do the chemo if I wanted to live. It really was a no brainer for me.

    I wish all of you well with your treatments. Embrace them as the lifesaving therapies that they are. That way the side effects are just something to endure, rather than terrible things to fear.

    Trish.

  • trose348
    trose348 Member Posts: 2
    edited November 2021

    Hi Barb, how'd it go w/ the red devil? How long did they administer it & how did you feel right after & the next few days? Thxs, T

  • minustwo
    minustwo Member Posts: 13,004
    edited November 2021

    I agree with Trish - better to call it Adriamycin.

    There are lots of threads that discuss this treatment and the side effects.

  • bishopdrive
    bishopdrive Member Posts: 2
    edited December 2021

    Yes, ok, so sorry. Of course I know the real name as well as how to spell it, and I also know that I have to have it if I want to live, so thank you for pointing all that out unnecessarily. I just wanted to know if my case is unique in what I would describe as unrelenting side effects, and if anything can be done to help me get through the next 3 treatments. But of course your technical pointers were so much more helpful.

  • moth
    moth Member Posts: 3,293
    edited December 2021

    bishopdrive, some people do find the AC component hard. It landed me in hospital twice even though I had no preexisting conditions and was otherwise in good health. In my case we did a dose reduction to try to get better control of the side effects. There is ongoing research on optimal dosing and sometimes the doses are just too high for an individual.

    And also chemo is hard to predict. the next cycle might be quite different. I hope it goes better for you

  • lw422
    lw422 Member Posts: 1,375
    edited December 2021

    Bishopdrive--I had a very bad time with the Red Devil. After my 2nd of 4 doses I honestly did not believe I could continue, but at the urging of my MO and a slight reduction in dosage I managed to finish. I'm glad I did but it was HARD for me, though it sounds like it's much harder on you and I'm sorry that you have to deal with the harsh side effects.

    Try to hang in there; many of us understand how dreadful it is. As Moth said, chemo is unpredictable so hopefully your next infusion will go better for you.

  • minustwo
    minustwo Member Posts: 13,004
    edited December 2021

    I did OK with 6 rounds of TCHP, but after surgery I could only get through 3 of the planned adriamycin/cytoxan infusions. Even though I was getting a Neulasta shot 24 hours after each treatment & extra hydration. I managed to avoid the hospital for a transfusion because it was the holiday weekend & no one could get organized. But I skipped the fourth dose.

  • ab45
    ab45 Member Posts: 153
    edited December 2021

    Bishopdrive--I also completed AC Taxol chemo regimen. It was rough but made it through. Each treament can be different with different side effects. Baking soda rinses helped with ulcers. I would check out the chemo discussions, I was part of February 2021 with Lw422. I felt our group put a ton of information on the there..sending best wishes your way

  • Emily21
    Emily21 Member Posts: 67
    edited December 2021

    Hi Bishopdrive, so sorry to hear that you are having a bad time with the AC red devil, a very common name for it!! I started it this week last year, I was lucky to get through it with few problems, I found that a walk every day helped enormously, fresh air and rest, eat when you can be gentle and kind to yourself. Best wishes. I'm well now.


  • gb2115
    gb2115 Member Posts: 551
    edited December 2021

    I found Adriamycin to be rather tough. It took them a bit to find the best anti nausea regimen for me, so the first cycle was a lot of vomiting and needing IV fluid. After that, the rest of the cycles were me being a sleepy zombie for 4 days because of all the nausea meds. I also had oral thrush each cycle, so lots of mouthwash.

    Made it through though and am very glad you can't get that drug more than once in your life!

  • spookiesmom
    spookiesmom Member Posts: 8,149
    edited December 2021

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  • minustwo
    minustwo Member Posts: 13,004
    edited December 2021

    Interesting SpookiesMom. Thanks,