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AC - Any non-horror stories? Tips?

ARJal
ARJal Member Posts: 18

Hi everyone,

I will be starting AC soon after 12 weekly TC+Keytruda doses. Although it wasn't a walk in the park Taxol was manageable for me. I've read many horror stories regarding AC and it is nicknamed "the red devil" for a reason. I'm just trying to find a ray of sunshine in this storm and wanted to hear from you beautiful ladies that didn't have it so bad. Also any tips are welcomed. Thank you!

Comments

  • scaredme
    scaredme Member Posts: 65

    I did 4 rounds of dose dense A-C followed by 4 rounds of dose sense Taxol. Believe it or not, I didn't find it all that bad. That said, I was quick to take preventative anti-nausea meds and was 48 and in excellent health (other than my cancer diagnosis). I actually kept working through it as well and maintained my walking routine of 10,000 steps per day. Hoping that you do well with it!

  • parakeetsrule
    parakeetsrule Member Posts: 605

    I found it relatively easy too. I was also young and in good shape and had no other health problems. After the first treatment I felt horrible and couldn't even get out of bed, but after doubling the anti-nausea meds I was fine. And then I made sure to take them in advance, right after chemo was over on my way home. Take them BEFORE you feel sick! I don't think there's any escaping the fatigue and general "blah" feeling. But I was only really useless for a few days and then I went back to work and stuff. (but I worked from home so that was easy too)

    If you have long hair like I did, I'd recommend getting it cut short in advance. I never had short hair and it was a fun and new thing to do. And then have somebody shave it off for you when it starts falling out so you're not shedding all over the house, bed, and clothes like a dog. Ha.

  • mle42
    mle42 Member Posts: 124

    The ray of sunshine I can offer you: I was on a dose-dense schedule (infusions every 2 weeks), and during the second week I always felt good enough to enjoy myself - going out to eat, some easy hiking, and just generally making happy memories. So while I had plenty of side effects and it was tough, it wasn't unrelenting.

    Tips: be aggressive with the anti-nausea meds, and don't be shy about asking for a blood transfusion if your RBC/hemoglobin numbers get low. (after I finally got a transfusion it was clear that the worst of my crappy feeling was due to AC-induced anemia!)

    Good luck!

  • mountainmia
    mountainmia Member Posts: 857

    Everyone reacts differently to each of the treatments. We are all different. I didn't have a problem with 4 rounds of AC, every 2 weeks, other than fatigue that hit worst a couple of weeks after my last treatment cycle.

    PLEASE don't continue with the red devil thing. It's truly unfortunate that it got that nickname.

  • moth
    moth Member Posts: 3,293

    I agree with MountainMia about the nickname - I don't like it. It's a medicine that has great potential to cure. Take all your meds as prescribed, jump on nausea early, if your symptoms persist, call your cancer clinic - there almost always are more/different drugs to deal with side effects. Some people insist on being martyrs for some reason & have bad SEs but never tell their team or escalate the protocols... really it's not a vacation but for most people, it can be just fine with extra TLC.

    I had a rough ride with my neutrophils on it but that was pretty unusual . I would recommend to stay away from germs& minimize contact with non household members.

  • laughinggull
    laughinggull Member Posts: 511

    I had 4 rounds of dose-dense AC and I found it pretty manageable. Like scaredme, I was 48 and in excellent shape. I worked full time through all of it -but I have an office job. I also worked out (in moderation) during those weeks: light swimming, jogging/walking, this was very helpful to me. Each round was a bit tougher. First round, I was back to normal in a couple of days, second round three days, third and four rounds four days to a week. The bad days, I was way more tired than normal, but still doing more or less normal life, including dressing up and going to the office to work. Nausea: there is nausea medication, this will be the time to use it. Going for walks and getting fresh air helped me -if you are being nauseous, staying inside a small apartment full of smells is bad. Cooking, staying inside your kitchen: bad. Walking by the water, being out and about: good. My hair fell off two weeks after the first AC treatment. But, as I used to observe at the time, during my subway trips to and from work, while wearing a woolly beanie over my bald head: most people around you don't have beautiful hair; they, too, could definitely use a reset, and get themselves some new hair. I also enjoyed showers and the feeling of hot water over my bald head.

    We are talking a few weeks of slow down. If you start today, in 6 weeks you will have your last AC. You can totally do this. It will be a very small blip on your life.

    Good luck, and pls take any horror stories with a grain of salt.

    LaughingGull

  • parakeetsrule
    parakeetsrule Member Posts: 605

    I agree with moth. Don't try to power through side effects! There are treatments for all of them and if one doesn't work, they can change the dose or try a different medication. Cancer already sucks enough, there's no need to let it suck more than necessary for no reason.

    I think some people suffer so much from chemo because they think that's how it's supposed to be, and they don't reach out to their medical team for help. The only reason I knew I could get help was because I had relatives with me who had had chemo themselves. They compared my nausea prescription dose to what they took, and knew I could double it. Who knows how long I would have been stuck in bed feeling like I was about to die if they hadn't known that.

  • sbelizabeth
    sbelizabeth Member Posts: 955

    Doxorubicin (adriamycin) was derived from a bacterium found in a soil sample in France in the 1950's. The bacterium produced a natural red pigment, like beets are naturally colored. It was found to be a powerful treatment against tumors, and even today, it's one of the most effective chemotherapeutic agent ever developed. A gift from nature, whose purpose is to kill cancer.

    I had six round of TAC chemo (taxotere, adrimycin, cyclophosphamide). I tolerated it well. A couple of days after each round, I started feeling achy and tired, and my head felt like it was stuffed with wet cotton. Like having the flu, without the cough and fever. This lasted just a few days, and then I was fine to go back to work at my administrative desk job. What I believe helped me get through chemo with relative ease was being determined to stay active. Every day, I walked or rode my bicycle. Getting out in fresh air and moving your body is like a prescription for feeling better.

    I had zero nausea. None. I was given a couple of IV drugs during chemo that prevented nausea, and I had a boatload of Zofran pills at home. That first round I took my Zofran round the clock, but I found that I didn't really need it much during subsequent rounds.

    Some people notice their nails turn dark. I didn't notice this, but I was surprised to find a couple of dark spots on my backside where my bicycle saddle hits. I was warned, fortunately, that adriamycin will turn urine kinda red for a couple of days. Don't wear your favorite panties until the color clears. It's not blood.

    I agree with all here who urge you to not just suffer through side effects. If you're uncomfortable in any way, call your oncologist. There's an army of chemo nurses who can help you work through whatever you find to be distressing.

    Doxorubicin is a powerful weapon in our arsenal to slay the cancer beast. It sucks that any of us found ourselves in need of it, but I'm grateful it's there.

  • Blinx
    Blinx Member Posts: 82

    I just bumped up a good thread on AC. I've only had one treatment so far. I prepped a tote bag with all my (possible) meds in it along with "easy" snacks like crackers, animal crackers, and applesauce cups. When I'm nauseous I feel better if I don't have to go too far for what I need. Sitting is easy but once I stand up I remember how unwell I feel! It's best not to have a completely empty stomach -- try and eat a few crackers every few hours, and keep up with the fluid intake.

    I had the good luck to start the week between Christmas and New Year's when my work was closed. Then the next week was only 4 days, and I had off 2 half days for appointments. A nice way to ease back into work after a long holiday break + chemo. I wish I had kept better notes on how I felt each day. I think I had 2 days of basically napping all day. I also had more than one day where I felt fantastic! Better than I had in a long time. I had to remember to keep from doing too much on those days, though, to not get overly tired out.

  • 7of9
    7of9 Member Posts: 474

    Red Devil ....Toro! I was told I'd never like red again. I wore red shirts and ate red popsicles to preserve my taste buds at each infusion. Aside from the crazy depressing voices in my head and a one nighter hospital stay in between #1 & #2 treatments...I did very well. My father in law and my aunt gave me their colds. No joke...keep everyone at arms length. But get out and walk. Take all the meds they give you and get er done. You got this!

  • ruthbru
    ruthbru Member Posts: 46,915

    No one can predict how anyone else will react to anything. But I would say to expect that things will go okay and adjust as necessary. I did 4 rounds of dose dense AC while teaching full time & only missed infusion days (which were Fridays). I did everything I had to do and most of the things I wanted to do too. I didn't feel normal (I felt like I had a slight case of the flu) but I didn't feel rotten enough to sit home and do nothing. My advice is to drink loads of water before, during & after the infusions, take the anti-nausea medication exactly as prescribed, get some light exercise, if you haven't figured out what to do about hair issues (scarves? a cute wig?) do so now because you will be bald for awhile. I kept my fingernails polished, which seemed to protect them from getting brittle (this is just an observation, don't know if there's any science behind it). Hang in there and remember you are nearing the finish line!

  • serendipity09
    serendipity09 Member Posts: 769

    I did 4 rounds of done dense AC every 2 weeks. The day of infusion (Thursdays) I was ready to run a marathon thanks to the steroids. The next day I would wake up feeling good, by evening time I could tell I was slowing down and by nighttime I was tired and a little weak. Saturday I was laid out which lasted me about a week. I'd have several decent days and felt really good by the time the next infusion came along.

    I do have other health issues that probably attributed to the week long tiredness and weakness. I was still able to get some exercise in as it was summer and I was able to go to the pool daily. The days I did not go to the pool, I found that I was even more tired and weak. Days where the weather did not allow for the pool, I'd take a walk. She exercise definitely helps.

    Like others have said drink a lot of water and take the anti-nausea meds.

    Everyone responds differently. Some days were better than others, but I don't feel it was a terrible experience. To be honest, the worst part for me was losing my hair, but it comes back.

    Good luck and I hope everything goes well for you.



  • btwnstars
    btwnstars Member Posts: 81

    I did 4 rounds dose dense AC followed by 4 dose dense Taxol. In hindsight, AC was easier for me than Taxol. I recommend as others do to take the side effect medicines regularly and as advised and not wait to see to tough it out. Also lots of water and as much healthy proteins as you can get.

    I had my AC on Thursday, 3 out of the 4 I got sick once that night. I would start feeling the effects about 6 hours later. I took Ativan the first night just to relax/sleep. Friday I would sleep most of day, except to take meds, eat and drink water, until about 3/4. Then I could get up, have some dinner, watch tv. Saturday and Sunday were spent laying around, napping, tv, continuing to take the recommended 3 days of steroids and anti-nausea meds. I changed anti-nausea meds halfway, and then also started weaning off them a bit, make sure to take the stool softener, bcz the meds will cause constipation - that was the worst part for me about 4-5 days after.

    I worked from home starting Monday after and in all the weeks I only took off one additional afternoon on a Wednesday after my last AC the week before due to fatigue. I would still be tired and take it easy Monday-Tuesday, then slowly by the 1 week mark would feel better. It was cumulative for me, so by the 3rd and 4th round it would take more like 8-10 days to feel really better, but I could do stuff in the off week, go to farmers market, etc. I tried to walk/exercise any time I felt like it.

    Everyone is different, probably also what order you get it in... Just monitor your side effects and ask the nurses for help with them.

    Taxol was harder for me with the bone/joint pain, which I ended up taking relief meds and epsom salt baths helped.

    That said looking back now, it wasn't as impossible or scary as I imagined/feared before I started. Hope you do well, good luck!

  • norcals
    norcals Member Posts: 206

    ARJal,

    I had dose dense AC once every two weeks for four cycles before taxol. Before treatment, I was expecting the worst and I placed buckets in every room just in case I needed to vomit. Fortunately, there was no vomiting and minimal nausea. I got through AC without any severe side effects. I was very tired the day after the infusion, but all the other days I was able to walk every day. The exercise really helped me. As many have said, people react differently to these drug but there are many who tolerate it well

  • parakeetsrule
    parakeetsrule Member Posts: 605

    NorCals's post just reminded me of the only time I threw up during chemo, a self-inflicted event I had totally forgotten about. I was having hash brown cravings so for some reason I thought it was a good idea to go to the hospital cafeteria before one of my chemo appointments and have breakfast. But not just any breakfast...a big breakfast....I had eggs, bacon, corn beef hash, toast, hash browns, the works. Hot, greasy, just like yummy diner food.

    It all came back out after I got home after chemo. Whoops.

    So...don't eat a giant breakfast before chemo.

    Happy

  • lw422
    lw422 Member Posts: 1,399

    I had a horrible time with AC and it will always and forever be "the Red Devil" in my book. I'm glad that others didn't suffer much, but the best thing I can say about it is that I made it through. I still have a visceral response if I see an IV stand, and I finished AC last July.

  • sbelizabeth
    sbelizabeth Member Posts: 955

    LW422, an honest perspective! Like you said, you made it through. You hung in there until the end of treatment. Good for you.

    I have a similar visceral response when I see an image of a radiation treatment gantry. I know many of us breeze through that part but I found it heinous. We're all different, and have different responses to treatment, don't we?

  • ruthbru
    ruthbru Member Posts: 46,915

    For years afterwards, my stomach would flip over if I had to even drive down the street past the cancer center. No matter how 'doable'; the whole thing is a tough, tough experience. Heart

  • ARJal
    ARJal Member Posts: 18

    Thank you ladies for your useful input. I had my infusion yesterday and as suggested across the board, I am keeping up with my nausea meds (which made an appearance yesterday) and trying to stay hydrated. I'm also focusing on my protein intake. So far, it's been manageable, hopefully it stays this way in the days ahead. I will be updating my experience.

    I hope this thread also helps others calm their nerves and get out a laugh or two (thank you @laughing gull).

    Hugs to all. God Bless.