Adriamycin (Red Devil)

SyrMom

My understanding is Adriamycin continues to be used in early stage breast cancer to effect a "cure."  It's known to be very effective, but also a very tough chemo for the patient.  It's the one chemo I have tried to avoid because of the harsh side effects.  I know there's a limit to how much a patient can have due to cardiac complications; I also understand I will completely lose all hair, again!  I understand mouth sores can be a real issue - I wonder if sucking on ice during the infusion can help?  What about neuropathy?  Would icing help with that?  What about the nails? I also understand nausea/vomiting are real issues with this chemo.  What about constipation or diarrhea?

I'm getting over a severe toxic reaction to doxil (sister to Adriamycin) & would want to be pain free from the hand/foot syndrome before subjecting it to Adria.  I understand it doesn't usually cause hand/foot syndrome, but can!  Ugh.  I've had hand/foot twice now; this last time was horrendous & the skin is still peeling and painful! 

I've been Stage IV from day 1 & am told the dosing will be less than if I were curable.  I'm concerned because I do not want to be sick for the holidays!!  (Why bother to go through this if I can't enjoy important times!)

So, I'm asking for any & all experience with this chemo. Please don't hold back as I want to be as prepared as I can possibly  be to deal with any & all side effects that come my way.  Also, I'm planning to temporarily stop it before Christmas, with hopes of feeling good for the time I will be with family.  I would like to know how much time I will need before Christmas to start feeling good (days, weeks?). Even if this means I only have one infusion before the holidays, then, so be it!!  It's more important to me to feel good and enjoy this time with my daughters (although scarey being off tx).

I trust the information you share & have found these discussion boards to be more helpful than anything else I've tried.  So, please bring on your experiences. I extend to you a huge "thank you," in anticipation of your responses.

ruthbru

I did Adriamycin......yes, I lost my hair and everything tasted 'weird'.  No mouth sores (I used Biotene toothpaste and mouthwash which was recommended by my dentist), no heart problems, no neuropathy (my understanding is that neuropathy is more a problem with the Taxols), my nails got kind of soft but I did not lose them (I kept them polished, and that seemed to help protect them), no constipation or diarrhea, no vomiting (I faithfully took the anti-nausea meds the first three days as recommended but didn't need any of the ones for 'break through' nausea during the rest of the cycle). I felt like I had a mild case of the flu the whole time; but felt good enough to go to work, do everything I had to do, and most of what I wanted to do too (including traveling out of state for a niece's graduation). So, my experience was not as bad as I anticipated. A hint would be to drink water like crazy before, during & after your infusion. You will probably feel worse the first 3 days after your treatment, so you might want to play around a little with the timing during the holidays. I, for instance, usually had my infusion on Friday; but when I went to that graduation, they let me wait and do it when I got back on Monday so that I wouldn't be feeling crummy for all the graduation festivities. Best of luck!

knittingPT

I just finished my second round of A/C and the side effects have not been bad for me. I am very tired for three to four days but no nausea, GI problems or anything like that. I am expecting the hair to go this weekend. My tastebuds are funny and my normal crest toothpaste tastes disgusting. I am still working and have adjusted my scedule to have 3 day weekends. We will see what happens as time goes on

Nancy2581

I did 4 rounds of Adriamycin (along with cytoxan). My experience was very much like Ruth's (I also used biotene toothpaste and mouthwash so no mouth sores) I had it every 3 weeks. I felt flu like on days 3 and 4. I had no nausea but I took Emend the day of and for 2 days after. I was tired but by that 3rd week I felt pretty darn good. It wasn't as bad as I thought and yes I did suck on ice during infusion. I had my heart checked after adriamycin and it was fine. Good luck to you. I was scared to do adriamycin, but it wasn't as horrible as I thought.

Nancy

SyrMom

Thanks to all of you, this is very helpful.  Regarding emend - I was told there's a high rate of an allergic reaction (?) with this drug so they didn't give it to me with doxil.  I am known to be drug sensitive, but I also can't stand to be nauseous or sick.  Sounds like you have all tolerated it o.k.  

Keep the information coming!  Thanks again for the input so far!

 

SyrMom

Also, I think the plan is for weekly infusions with a lower dose & depending on lab values.  I'm sure there's a week off there somewhere ... so it might be I don't have many infusions b4 Christmas.  For the first time I'm putting my foot down & choosing quality of life over treatment.  Its scary cause I'm taking a huge risk, but what's the sense if I can't enjoy the time I have with my daughters?

Kicks

DD A/C (which I did neoadjuvant) was not bad at all for me.  I did lose 'head hair' and about 1/2 of all 'other' hair.  I lost sense of  taste and smell and appetite.  It did not slow me down at all.  I was given Emend with it along with other anti-nausea meds with no issues at all.  I have not heard that it causes reactions.  There is another anti-nausea med that used to be scripted that I was warned not to take because of the potential for long term consequences.:

I was not considered to be "early stage" (Stage IIIc IBC) or that I was 'curable' - doesn't exist.  I was 63 at the time (now 68) and have no cardiac.issues at all.

Neulasta shots may be done to keep white cell counts up.  It can cause bone pain but Clarita before and after are supposed to help.  Was not a problem for me.

When Adriamycin is infused, you may get a 'brain freeze' (feels like when you eat ice cream too fast on a hot day).  They just slow it down and quickly goes away.

Do you have a port or are getting one?.  Adriamycin is very hard on the veins.

WeeklyTaxol (adjuvant) was not as nice - it completely and utterly exhausted me.  I quit taking the 'script anti-nausea meds 1/2 way through it (of course got the pre-infusion IV ones) with no problem. 

Remember - we are each so unique - there is no way to know what you might experience because 'someone' else did.

mammalou

I did dose dense AC and it wasn't that bad. I didn't get mouth sores or have any heart troubles. The drugs for nausea work really well. Good luck to you

floaton

I hate to be the negative one, but I had a terrible time with a/c. I had dose-dense and was super nauseous and dizzy for at least the week after each dose. I had a bronchospasm reaction to my first infusion with emend (I'm unfortunately also known as drug sensitive), so couldn't take that anymore, but was on just about everything else for nausea and stayed well hydrated. I crashed off the steroids I finished on day 4 or so and then would have terrible mood swings and cry about just about everything for a few days until my brain adjusted to being off them again. I'll echo that everything tasted weird, including scrambled eggs, which used to be a comfort food but tasted like wet crumbled cardboard. I didn't get my brain or really any of my energy back until 2-3 days prior to my next dose. It made my arm lymphedema flare every time, and also caused worsening pain at my surgery site. I am always astounded when I read about other people's experiences with it, as we did not get along at all. I sincerely hope your experience is also way better than mine

Spookiesmom

I had nausea, but no vomiting. Completely lost taste, water was tasteless too. Had a few mouth sores, used Magic Mouthwash for that. Rx. Had diarrhea big time. I finally quit eating to stop it, didn't taste good anyway. The Nulasta shot didn't bother or hurt me, but I HAD to be home and close to bed 2 hours after, nap ATTACK. I'm retired, pretty much carried on as usual.

I just had a cardiac U/S, no issues there. I'm 2 years out from chemo.

Just because the SE is listed means you will get it. Just be attentive to your body.

Best wishes

Spookiesmom

Oh, your urine will look like red Kool Aid. That REALLY freaked me out!

Taxotere was much harder on me, that's another post. That's when I got PN, peeled head to toe, and lost all my nails

Kicks

When I said I lost all taste - that was it.  Nothing tasted bad just had no taste at all.  Long story short, that Thanksgiving we went to Deadwood for dinner.  I love hot horseradish but I was eating their hot horseradish slathered on my prime rib like it was mayo.  

I am a 'waterholic' so keeping hydrated was not a problem - habit took over.  Lost of appetite was a lot bigger issue.  I just never thought about eating which scared Hubby.  Mom had been aneorix for MANY years - her last 4 yrs we were married so he knew what it does.  He called me many times a day to be sure I remembered to eat something and made great meals.  

Spookiesmom - I had the same reaction to Neulasta basically.  Al!most to the minute, 2 hours after injection I would go to sleep for 2hrs.  

added - I used OP Nail Envy on my nails (after being given a sample at Look Good Feel Better) and nails did great.

Spookiesmom

I think cardboard would have had more taste! LOL

LauraW68

I'm following this as I had my first dose dense round of Adriamycin and Cytoxan today.

I had no idea about using the nail polish. I even got a bottle of the Opi at the Look Goid Feel Better event too

ruthbru

polish your toenails too. I polished my fingernails but not my toenails & my toenails got kind of funky. A friend only polished her toenails, which stayed fine, but her unpolished fingernails took a hit.

linzer

I did 4 dose dense AC's. No mouth sores or any indication of them at all (which I fought back constantly on taxol). I did loose sense of taste and then sometimes heightened sense of taste. Sometimes sensitive to smells. Constipated due to the nausea meds (Emend, Aloxi, Compazine, Ativan and steroid). I worked through it but took 1/2 days on day 2 and 3 then had the weekend to regroup. I felt nauseous but not outrageously so. I never felt as if I would vomit. I drank a lot for the first couple days. Close to a gallon each day. Usually was feeling back to myself days 7 onward. Neulasta was a non event. I took Claritin to fight the bone pain which wasn't significant. I did get hand / foot near the end (just my hands got sore and a brownish red) and I'm told it will go away. I sure hope so! Lost all hair that had started to grow back after taxol. Overall not as bad as I expected but certainly wouldn't want to go back and do it again. Good luck! Linda

SyrMom

Thanks so much for the continued info - I start next Monday.  About the nails, does the polish need to be dark or any color?  I keep my finger nails covered, but have let my toe nails go as they look strange from taxol.  Had kept them covered with dark polish, but they still look ugly.

What worked the best for constipation?  Had it while on doxil and nothing worked, did a number on me.

Real worried about the hand/foot as it's been since Oct. and my feet still hurt!  Heels burn like crazy, but the skin has stopped peeling finally! 

tartie_pants

Hello stage 4 from the get go sister. I had the red devil as well only 4 of my 8 chemo treatments as my mid point mugga test showed i was nearing the cardiac issue zone but the good news was that I was doing so well with treatment it wasnt a hard choice. My dr did give me the same dosage as early stage patients however.

I started my chemo in Dec right before xmas the first rounds are easier to bounce back from. It takes longer as it builds in your system. I would say a week is a good amount of time.

So yes you will loose all your hair though oddly my eyebrows stayed on until after chemo when they fell off.

Mouth sores yes but use biotene mouth wash or there is a perscription one your dr can get you.

Nausea thankfully I never was nautious. The adivan helped.

The main issues I had were water retention fatigue joint pain and roid rage the week before when the little green steriod pills were taken. I did have mild neuropathy in my feet and cracked heels but once off they went back to normal. Oh and the night after chemo my tumor hurt like i was being stabbed but that was a good thing.

Honestly I had more issues with the chemo after I was taken off it than when I was on it.

ruthbru

any color polish should do it...a couple coats...

texas94

Hi SyrMom- I'm very drug sensitive and often have adverse reactions so don't have an easy time on any chemo, but like Spookiesmom above, Taxol was MUCH worse for me, because I never got a break from feeling awful! I'm about to have my last dose of FAC (AC with 5-fluorouracil). My side effects with the previous doses have all been pretty similar. I feel awful with nausea and flu-like symptoms for 4-5 days, beginning within hours of the drip. Then I have 3-4 days I feel much better but am still tired. After that, I feel rather decent until the next dose. After Taxol, these "decent" days seem like a complete gift! As for timing before Christmas, if you're planning to try to clean your house, play Santa AND cook the entire feast, I'd say get your dose at least 2 weeks prior (you feel pretty great your 3rd week). If you can take it a bit easier than that on Christmas, I think 7-9 days is doable. The only side effect that has been consistent for me is lightheadedness if I get up or move too quick. However, I really think it's leftover from Taxol (Taxol side effects take weeks or months to fade).

Hair- I went bald head to toe on Taxol except for a few straggler hairs here and there, but the first dose of FAC made any little hairs I had left completely fall out. I didn't have even 1 hair ANYWHERE! Then, I suddenly had all this white, thin, super soft growth all over. A couple of weeks later, it started turning brown and has slowly continued to do so, though it's still very soft (which I hear is normal at first). I shaved my head from the moment my hair fell out with Taxol until 2 weeks ago (I couldn't stand the stragglers!), and now I have ¼" growth on my head.

Mouth- I've held ice in my mouth during chemo ever since I started Taxol, and I've NEVER had taste issues or mouth sores. However, during the last FAC the ice made me nauseous (as well as my own saliva!), so I was only able to hold it in for about 5 minutes, and I've noticed this time my mouth is slightly tender in places (taste is ok though).

Overall dryness/feet- On recommendation of someone else on this site, I purchased NOW brand food grade glycerine from Amazon and add a few drops to each handful of my lotion, which is already formulated for extra dry skin. The addition of the glycerine definitely keeps the moisture in my skin much more so than lotion alone! The moment I began using it, any issues that were developing went away. I plan to keep using it even after chemo. http://www.amazon.com/Solutions-Glycerine-Vegetable-16-Fluid-Ounces/dp/B0019LWU2K/ref=sr_1_1?ie=UTF8&qid=1417537513&sr=8-1&keywords=now+food+glycerin

Pain- I haven't had joint pain or aches with FAC (they were awful with Taxol), but I do take a double dose of Zyrtec on chemo days and for a few after, so maybe that helps?

Nails- I've kept mine painted constantly with a good protein base coat (like the OPI one mention above, but I use Nailtiques) and a dark polish and have had no issues with nails in the least.

SelenaWolf

I had four rounds of Adriamycin and it wasn't too bad. The only thing I struggled with was the migraine-like headache after my first round, but I told my MO about it and she prescribed something to take before the second round, which made it loads better. Constipation, I got my MO's okay to take a stool softener starting the day before and to continue taking it until I had results. Fingernails were fine, although they ended up ridged and fragile for awhile, but my toenails turned brown. Only my baby toenails fell off, but they grew in again just fine. Metallic taste in my mouth, but no mouth sores. Because I lost EVERY SINGLE SOLITARY HAIR, my nose ran constantly; no nose hairs, snot falls out of head, so Kleenex was my best friend. My eyes watered a lot too because of no eyelashes to protect them. I took the anti-nauseants as directed and did not suffer any nausea or vomiting at all... which was the side effect that worried me most. I, actually, had more trouble with side effects from the Neulasta shot (I had dose dense chemo), than I did from the chemo itself. Oh, I went into menopause during chemotherapy and it's been permanent (woo-hoo!!! So don't miss Aunt Flo).

Three years out from treatment, I have no heart issues, no lung issues and only very mild neuropathy in my toes that I only notice after I've been hiking. Sweet almond oil did wonders for the fragile state of my nails, which now look healthy. Hair came back - very different in texture - but pure, healthy VIRGIN hair.

linzer

I took Miralax for the constipation, but only for the first few days of each cycle. one week I went too far and had the Big D. It can be tough to navigate it all...

SyrMom

Regarding Miralax, what liquid do you find it best to mix with?  I have a hard time drinking anything that has a weird taste, especially if nauseous.  Did you take a dose before the infusion or following the infusion?  Thanks ...

texas94

Miralax is a essentially tasteless, so you can mix it in anything. I prefer juice, especially orange or apple. I swear I can taste it in water, so I don't use that. Otherwise, you won't even know it's there. I take one dose the night before chemo, another the morning of and then continue it twice a day for two days after (though obviously stop using it if you begin to have the "opposite" problem).

floaton

Syrmom, I think the generic miralax has more of a taste (a little acidic / metallic than the brand name, so we spring for the expensive stuff around here .

SpecialK

syrmom - some find it helpful to go back to their infusion center the day after receiving Adriamycin for additional fluids to help with any nausea - some centers add some dexamethasone to that also.  If you are to receive Neulasta 24 hours after the infusion you can get the extra fluids at that time.  If you experience nausea that you have difficulty controlling with available meds, or are sensitive to those prescribed, ask about a Sancuso patch.

SyrMom

I heard about the Sancuso Patch; when I checked it out with Medicare Rx it was hundreds of dollars a patch!!  Can't do that!

Thanks for the tips on Miralax, I certainly need to try something.

SpecialK

syrmom - ask your onc if he has any samples of Sancuso, sometimes they do.  Due to expense it is often used as a last resort and hopefully you won't need it!

SyrMom

Resuming chemo on Monday.  Anyone experience random, severe, muscle cramps on Adria?  It's very strange, can happen in any part of my body - finger, chin, thigh, etc with no warning. 

farmerjo

Bumping this topic. So there is the red devil, and dose-dense red devil. I would think the side effects from dose-dense are more severe.

SelenaWolf

Not necessarily. You're not having a higher dose of Adriamycin, you are just having it more frequently. Dose-dense means that you are having chemo every two weeks (augmented by Neulasta or something similar to keep your white blood cell count elevated), instead of waiting every three- to four weeks.