Red Devil
Has anyone heard of the chemo drug called the Red Devil? That is what the nurses call it and I read this online. It is supposed to be very strong. I lost my hair with second treatment. I was washing it and it got all bunched up and tried to untangle it, and it fell to the bathroom floor. My nails may turn black. Sores in my mouth. And who knows what else. Please, anybody who has had this drug, let me know your experience. It is also called Adriamycin. I am taking two other drugs: Apo-Paclitaxel and Procytox. Thanks
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It is Adriamycin by name. 'Red Devil' is a 'name' sometimes used by some.
I did Adriamycin and Cytoxan. It was not bad and I did not have any nail issues (black nails) or mouth sores.
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I also had adriamycin aka red devil and cytoxan. I handled both well. When you get adriamycin your urine will turn red for a bit. For me it was just a couple of times after I got it.
Nancy
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Hi. I was just informed today that I need chemo and will get 8 treatments Every other week for 8 weeks . The first 4 treatments are Adriamycin & cytoxan which apparently I give to myself at home via injection. And the second round of 4 treatments every 2 weeks x 4 cycles of taxol.
Is it really as horrible as I think it is? And losing my hair. I mean I'm speechless and terrified. Any words of wisdom ladies (and gentleman)?
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Fancnancy
You must have misunderstood about the Adriamycin and Cytoxan. There is no way you can inject those yourself at home. The Adriamycin has to be manually pushed into your port or iv by a specially trained nurse. From what I understand it is so caustic that just a small amount leaking out can destroy your vein. The nurse will even be wearing a full hazmat type getup, including double gloves and a face shield. You're probably mixing it up with the Neulasta, a medication to beef up your white blood cells, which can be attached to your body, so you don't have to come back in for a shot. It will then automatically inject the medication on a set schefule.
I did Adriamycin and Cytoxan, x 4 plus the Taxol x 12.. They're not fun but they are doable. It wasn't nearly as bad as I thought it would be. Just make sure you stay really, really really well hydrated.
Good luck to both of you. You can do this.
Trish
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Hmm never had adriamycin, but here in Finland a different bc chemo drug, epirubicin, is red and is called that. (Chemo the summer of 2015 was docetaxal x 3 then FEC = fluorouracil, epirubicin, cytoxan x 3) Nurses gave ice cubes to hold in my mouth during the infusion. Also luckily warned that it turns urine red for a few hours --- would have freaked out without the warning! I had cold capping during chemo, but still lost my hair; but it all grew back --- with less gray than before! -- so no longterm problem there.
Hoping your treatment goes well and that your hair also grows back better than before!
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I had Adriamycin. Lost my hair, had mouth sores but no nail issues. It is a tough chemo but doable. Please read as much as you can from net and get yourself prepared for these effects. Hydrate yourself before and at the day of chemo. All the best.
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Epirubicin (Ellence) and Adriamycin are related compounds. Trishyla is correct--there's no way they (or any chemo drug) would be administered at home.
If a nurse really called it "red devil," s/he should be written up. There's no need to scare patients by using a frightening colloquial nickname.
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I took 4 dose dense adriamycin and cytoxan and 4 dose dense taxol--along with about 20 herceptin. I had a former male student who took adriamycin for a very rare cancer. I lost my hair between doses 2 & 3. It was all hard in different ways. But 5.5 years later still totally worth it. No cancer--just residual neuropathy, etc. I have hair. I look and mostly feel "normal.
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Yep, I had A/C. Lost every hair on my body, brows, lashes, nose, lady parts, etc. Got mouth sores. MO rx'd Magic Mouthwash. It helped. Got some kids flavor toothpaste, no mint or cinnamon flavors. Lost every nail. They grow back. Lost appetite and 34 pounds. Did have red urine. Drink LOTS of water to help flush it out.
There are 2 ways now for the Neulasta shot. Go back to office next day for it, or wear a disposable preprogrammed pod. You will not do it yourself.
No it's not a picnic in the park, but sure beats the alternative.
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this is the small disposable pod being used for Neulasta injection. Uses a hair thin cannula into your skin to get med in. Feels like a rubber band snap. It is water resistant. I use them as my insulin pump.
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Adriamycin and Cytoxan would not be sent home for you to self administer. Taxol wouldn't be sent home either. For some A/C is 'easy' and Taxol is 'bad' as far as the SE's one experiences. For me, the 4 DD A/C neoadjuvant were not bad at all - didn't slow me down at all. The 12 weekly Taxol adjuvant was not 'nice' at all - complete and utter EXHAUSTION the entire 12 weeks. For others - it's just the opposite - A/C nasty, Taxol not bad. We are each unique - what I (or anyone else) experienced, is not to be expected by you.
Especially with A/C (possibly with other Chemo too), Neulasta will quite probably be ordered. It is given the day after infusion to help build white cell count which quite often (usually) drops during Chemo. There is also another shot(s) (can't remember the name at this second- I did Neulasta with A/C, not Taxol) that I've heard of that is self injected.
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neupogenia? Is the other w/c builde
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I knew someone would know!
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Neupogen.
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I had 4 DD AC and 4 DD Taxol. The AC was hard, but doable. I found Taxol much easier. I continued full time work (some from home) throughout all of it. My nails did turn quite black. The palms of my hands and the soles of my feet also turned very dark. These are more common among people with darker skin. My hands a feet became extremely painful. I could barely walk. I started using Udder Cream with 10% Urea in it, and that fixed the problem. I had some mouth sores after the first AC, even though I chewed ice chips the whole time. I used Biotene daily starting with my 2nd dose and never had the mouth problem again. Yes, I lost my hair. All of it. Everywhere. My nose dripped constantly because it was always irritated without those tiny hairs. My hair is growing back, albeit very slowly.
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I fretted about having a/c the whole time I did Taxol. As it turned out, Taxol was worse for me. After the fact, I wish I hadn't worried so much about it.
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Adriamycin, Cytoxan and 5FU all at the same time. Taxol and Herceptin followed. For hands and feet: during the chemo infusion I rested my feet and hands on ice bags so as to minimize the damage of sore and tender red feet/hands, Also was given Aquafor to put on feet and hands which I did every single night before bed. Regarding the red urine and urine output after these infusions, I was strongly instructed to have my "own" bathroom designated to me for the day of chemo and 2 days afterwards. I had small daughters and because those medications are very toxic, I was instructed to keep my family out of the bathroom for those 3 days. We posted a sign on the bathroom door, which was kept closed all the time, "Mom's Bathroom" so as to remind my daughters and my husband to use the other bathroom. I mention this not to frighten you, only to be cautious and mindful for your family. No sense exposing them to any of the residuals that might be eliminated in the bathroom. All of these medications are powerful, but that's what you want to eradicate the cancer. I am 7 1/2 years out from stage 3 ER/PR-, Her2+ 9 positive lymph nodes and enjoying life and grateful for every single day as you will be too!!! Be kind and gentle to yourself and it will be over sooner than you can imagine right now.
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I did not 'ice' my feet and hands throughout 4DD A/C neoadjuvant and 12 weekly Taxol adjuvant. I did not have any issues with neuropathy or with nails. For me, 'icing' was not an option because of lowered body temperature thanks to Chemo. Not too bad with A/C but was extreme with Taxol (the lowest I know I dropped to was 94f - dangerous level). So to have 'iced' my extremities was not at all an option in any way.
We are each unique!
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trishyla
Thanks so much for your clarification. You are absolutely correct. Unfortunately however, the place I am having my chemo will only give me neulasta if I return the day after chemo to have them do it.
Best of luck everyone. We can do this!
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Fancynancy
That's how I did my Neulasta. I went in for a shot the day after my AC chemo. I tried the Onpro once, but it failed to inject all of the medicine, so I went back to the old way
. Don't forget to take a Claritin every day during AC. It helps tremendously with Neulasta's bone pain.Good luck.
Trish
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Fancynancy
That's how I did my Neulasta. I went in for a shot the day after my AC chemo. I tried the Onpro once, but it failed to inject all of the medicine, so I went back to the old way
. Don't forget to take a Claritin every day during AC. It helps tremendously with Neulasta's bone pain.Good luck.
Trish
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I had epirubicin (related drug, also called the Red Devil), along with cytoxan and some third poison. My nurse did not wear a hazmat suit, but for sure this is not something you shoot up at home in your living room.
Yes, your hair will fall out. I buzzed mine off before starting chemo. I preferred being in charge of the hair loss, rather than wait for it to happen. When it came back I had fun trying various short hairdos. I took it as an opportunity.
The docs were concerned about SEs, but I had a relatively easy time on the stuff. I had more trouble with taxotere, which all the docs swore was cakewalk in comparison. My point being that it all depends. What helped me greatly was to go out for at least one walk every day, more whenever I was able (which was often). I often walked 3-4 miles a day during chemo. The other thing that seemed to help was being careful about eating properly, i.e. protein and fibre mainly. Because my appetite suffered a bit, I ate on a schedule. That way, even if I didn't feel hungry, I would get some basic nutrition on board.
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Fancynancy - even if you have to go back the day after infusion for the Neulasta - it is worth doing.
My TX was outsourced by VA to the local Cancer Care Center for for my chemo but insisted that I come to Ft. Meade (So Dak) VA for my Neulasta shot so I had to drive 43 miles from my house to VA the day after infusion (about 15 miles from home).
I had no pain at all with Neulasta - only issue with it was almost to the minute, 2 hrs after injection I would go to sleep for 2 hrs (again almost to the minute) and wake up alert.
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Kicks, I never thought about a lowered body temperature possibly being caused by chemo! My body temperature is normally a degree below normal anyway, but I've noticed a couple of 95.7, etc. readings. Guess I'd better include that on my list of things to ask about when I go for round 3 on 6/30.
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Fancy, yes, my doc expected me to give myself the Neulasta shot on the day after chemo. Not gonna happen. I got my local pharmacist to do it for me.
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I'm a cancer survivor who is been in remission about a year. I was diagnosed with breast cancer in August 2016. It was triple negative breast cancer so I was given the drug called the red devil. After doing much research I found out that my symptoms are a direct result of this drug. I now have chemo brain which causes cognitive dysfunction such as not being able to formulate my words and I've lost my short-term memory. Based on articles I've read it can take 10 years or be permanent for this to go away. I also now have neuropathy in my right leg which is extremely painful and medication doesn't help. However, medicinal marijuana does wonders for the pain! So get your medicinal marijuana card, you're probably going to need it. It's very frustrating and I read that the drug is worse than the actual cancer cells. So make your decision wisely. Oh yes, and my toenails turned black and fell off. Each person has their own personal decision to make when it comes to cancer. I'm putting this information out here to help you make a sound decision.
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I was diagnosed with invasive ductal carcinoma triple negative breast cancer in August 2016. I was given the drug also known as the red devil or 5-FU. It has caused a severe cognitive disorder Leaving me with no short-term memory and I have trouble formulating my words. After doing much research I found out that this can last up to 10 years or be permanent. It’s also known as chemo brain or chemo fog. My toenails also turned black and fell off. And I now have neuropathy in my right leg. My bones are brittle and my teeth are crumbling. So I wanted you to know about the severe side effects that you may experience. Losing my hair was the least of my problems. It’s a personal decision for each cancer patient whether they want treatment or not. But I wanted to put this out there so you knew what you were getting into. I guess it’s a fair trade off to be alive. Stay strong and know that you’re not alone!
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I had the 'red devil' in the summer of 2013, i.e. almost five years ago. Continued working through it and haven't stopped working since. My work requires excellent memory, ability to multi-task and work under pressure. No chemo brain, in fact I am doing better than some of my much younger colleagues in terms of memory.
Edited to add: neuropathy in the legs might be the result of taxanes, not the 'red devil'
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FNS - the fog lifted significantly after my 2nd year out, and after adopting a consistent workout program. Im hoping with time you'll see a reduction in the SEs too!
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They called it Red Kool-aid to most, but after I was done they told me they lovingly call it Red Death on the unit. Yeah, lad they didn't tell me that ahead of time.
Most are right is rough but doable. Just listen to your body and try to "prevent" side effects rather than fix them after the fact.
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