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Topic: Anyone know about the red devil?

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Oct 5, 2021 03:54PM

Tana36 wrote:

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

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Oct 5, 2021 03:57PM exbrnxgrl wrote:

Have you checked out the chemo threads?

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


Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Oct 5, 2021 04:29PM Spookiesmom wrote:

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!!!

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Oct 5, 2021 04:34PM moth wrote:

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..

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Oct 5, 2021 05:30PM Tana36 wrote:

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

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Oct 5, 2021 05:34PM Tana36 wrote:

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

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Oct 5, 2021 06:15PM Spookiesmom wrote:

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

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Oct 5, 2021 06:22PM - edited Oct 5, 2021 06:30PM by moth

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?

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Oct 5, 2021 06:41PM Tana36 wrote:

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

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Oct 5, 2021 06:49PM moth wrote:

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

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Oct 5, 2021 07:05PM Tana36 wrote:

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

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Oct 6, 2021 01:25PM moth wrote:

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 :)

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Nov 26, 2021 10:52AM trose348 wrote:

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.

Dx 6/24/2021, IDC, Left, Stage IIIA, Grade 2, 5/5 nodes, ER+/PR+, HER2-
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Nov 26, 2021 01:15PM Tana36 wrote:

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

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Nov 27, 2021 05:54PM bishopdrive wrote:

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.

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Nov 27, 2021 06:39PM Moderators wrote:

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Nov 27, 2021 07:17PM - edited Nov 27, 2021 10:36PM by Aram

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.

Dx at 40, BRCA1 Dx 2/5/2021, IDC, Left, 3cm, Grade 3, ER-/PR-, HER2+ (IHC) Dx 2/5/2021, IDC, Left, 1cm, Grade 3, ER-/PR-, HER2+ (IHC) Chemotherapy 3/9/2021 AC + T (Taxol) Targeted Therapy 6/1/2021 Herceptin (trastuzumab) Targeted Therapy 6/2/2021 Perjeta (pertuzumab) Surgery 10/6/2021 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right)
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Nov 27, 2021 07:27PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 28, 2021 04:43PM BarbTheBCBarbie wrote:

red devil starts Tuesday for me

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Nov 28, 2021 06:09PM Trishyla wrote:

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.

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Nov 29, 2021 06:26PM trose348 wrote:

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

Dx 6/24/2021, IDC, Left, Stage IIIA, Grade 2, 5/5 nodes, ER+/PR+, HER2-
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Nov 29, 2021 08:49PM MinusTwo wrote:

I agree with Trish - better to call it Adriamycin.

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

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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23 hours ago bishopdrive wrote:

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.

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22 hours ago moth wrote:

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

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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22 hours ago - edited 22 hours ago by LW422

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.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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21 hours ago MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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18 hours ago AB45 wrote:

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

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16 hours ago Emily21 wrote:

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.


Dx 9/4/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 3/31 nodes, ER+/PR+, HER2- (FISH) Surgery 9/23/2020 Lumpectomy Hormonal Therapy Arimidex (anastrozole) Radiation Therapy 3DCRT: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol)
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14 hours ago gb2115 wrote:

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!

Dx IDC in Oct 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes, Lumpectomy + rads + tam. Age 38. 5/21 Dx IDC. 1.6 cm ER/PR+, Her2 -. Gr 2. 2/2 nodes positive. AC/T. Age 42
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13 hours ago Spookiesmom wrote:

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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9 hours ago MinusTwo wrote:

Interesting SpookiesMom. Thanks,

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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