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AC treatment

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yellowb
yellowb Member Posts: 102

Hi - I've really benefited from the weekly Taxol treatment thread, and was surprised that I couldn't find a similar thread on AC. So here it is - a place to compare notes on what helps, how we are feeling, what our nurses tell us, and how it goes.

Since AC is short, I'd like to particularly ask for people to post about their experiences after they have finished. It's really helpful to those of us just starting to hear how it went.

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  • yellowb
    yellowb Member Posts: 102
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    So for those just starting AC, my biggest problems the first time round were steroid-inspired sleeplessness, which I am sure did not do my body any favors; and constipation.

    On round two, I took an atavan around 6 pm after the infusion, and it worked like a charm against the insomnia -- I got nine hours of sleep and am back at work today. I also was very, very careful about my eating the night and morning before the infusion -- Soup with fiberful vegetables, and about twice the number of prunes I ate the first time around. It does seem that that might also be an effective technique for less grief this week.

    Also, my thinning eyebrows suddenly have gotten very short -- little wimpy dashes. I am down to about 10 eyelashes on each eye.

    I will update as to how it goes.

  • Each_day_2018
    Each_day_2018 Member Posts: 66
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    I had my first AC treatment 13 days ago. The first 5 days were AWFUL. I received IV anti-nausea meds beforehand, which are supposed to stay in your system 5 days. About 3 hours after the treatment the nausea set it. The rest of the night was just nausea, vomiting, headache, and blurry vision. My treatment was on Thursday, and I was unable to return to work until Tuesday. But by Wednesday/Thursday the SEs really started to subside and by Friday, I felt pretty normal again.

    I have not lost my hair yet and am not experiencing any shedding yet.

    My next treatment is Nov 1, and I hope I am better prepared mentally to handle it, now that I have an idea of what it entails.

    Edited to add: I also had constipation and sleepiness. I've also gained about 5-8 pounds, but I am wondering if that is from the steroids? I've been very bloated. I did have to go to the clinic for fluids and more steroids. If anyone has insight on weight gain and how to avoid it, I would appreciate it! I don't think I am eating anymore than normal, but maybe the lethargy can really take its toll!

  • yellowb
    yellowb Member Posts: 102
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    Each_day_2018 , that sounds so awful. Is this your first treatment drug (I'm doing it after 12 weeks of Taxol, and on a dose-dense schedule, so we might be quite dissimilar.) Also, did they load you up with prescription anti-nausea meds? I have a whole 8-day regimen -- a lot of pills to remember, but perhaps they helped.

  • Each_day_2018
    Each_day_2018 Member Posts: 66
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    Yellowb- This is my first treatment drug. I will do 12 weeks of Taxol after the AC...I did get a bunch of prescription anti-nausea meds. I took Compazine at first, but it made me soooo tired, so after switching to Zofran, I felt much better.

    I'm doing 4 treatments of AC over 12 weeks, so I go every 3 weeks right now. Dreading the next one, but at least then I'll be halfway done!


  • yellowb
    yellowb Member Posts: 102
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    For what's it's worth, they had me start on Zofran the third day out, and then had compazine listed as "use as needed" for the 5th day out and further. Who knows -- every nurse might have different ideas about best practices!

    This is definitely tougher, for me, than the Taxol. Good luck in November!

  • MoonGirlJess
    MoonGirlJess Member Posts: 211
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    Yellowb— you have weekly Taxol then dose dense AC? In that order?

  • yellowb
    yellowb Member Posts: 102
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    MoonGirlJes, yes. I think NYU's Perlmutter Center, where I go, always does it that way. I have heard that some places do it in that order for particularly aggressive cancers as well.

  • MoonGirlJess
    MoonGirlJess Member Posts: 211
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    What helped me survive dose dense AC was intermittent fasting (and cannabis—Delta8 thc is an amazing antiemetic. It’s not delta9 thc that gets you high.) I lost 18 pounds on AC.

    Prior to AC chemo they would premeditate me with Aloxi, Emend, and dex. (Plus, I had the Sancuso patch on 24 hrs prior to chemo)

    At home, zofran and compazine, didn’t work for me at all. At all. Switched me to the Sancuso patch ($$$$) that I wore for a week with each treatment thereafter. I could then start olanzipine the day after chemo for hardcore nausea. It did help. And it would help me sleep. The nice thing was I never had to remember to take anti-emetics with the patch and 1 pill at night. That’s it.

    That Neulasta crushing bone pain was also quite memorable. I don’t miss that.

    Jess

  • MoonGirlJess
    MoonGirlJess Member Posts: 211
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    Dose dense AC after weekly Taxol sounds brutal. Mad props to you, yellowb! I have a feeling I would have not done well with that regime.

  • yellowb
    yellowb Member Posts: 102
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    MoonGirlJess-

    Would you tell me a little about intermittent fasting? How did you do it? Thanks in advance.

  • jaboo
    jaboo Member Posts: 368
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    I had dose dense AC, which was really difficult, but I survived. Most importandly - everything was back to normal 2 weeks after the last infusion. (Apart from the missing hair from the knees up, that is. Yep, I had to shave my legs all the time.)

    Hair - shedding started 14 days after the first infusion - which was the day of my 2nd infusion. 3 days after the shedding started, I shaved the remaining bits.

    The day of the treatment, I slept when I came back home. I took an anti-nausea pill the moment I woke up. The 1st time around, I waited a bit and the nausea hit me hard. So after the next iv's, I didn't wait and took it before the nausea really started.

    I NEVER VOMITED!

    But the nausea was constant for 6, 8, 9, 10 days (worse with each consecutive dose). I had to be careful what I put into my mouth. But I discovered that being hungry is the worst! I had to eat at least something. My BMI was hovering aroun 19, I really couldn't afford to lose any weight. So I ate dutifully and felt better when I managed a decent small meal. A bowl of blueberries each day was my best meal (they were in season in our garden).

    Important: Drink, drink and walk and drink!

    I drink plain water my entire life, but during AC, the very sight of water made me almost sick. So I tried various drinks and settled on juice, very much diluted in water (since I consider juices very unhealthy sugary drinks).

    I received filgrastim injections to boost white blood cells and they were worst than the chemo for me. I discovered it is better to take them in the late afternoon/evening (was injecting them myself), so that I was in bed afterwards till the morning.


  • yellowb
    yellowb Member Posts: 102
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    JaBoo, I'm guessing the filgrastim is the equivalent, purpose-wise, of my Neulasta? The pain from the Neulasta has been the worst part so far for me. (Also, it announces it's injection timing in the middle of my quiet, quiet office with a series of beeps, but that is mainly funny.)

    Also, that is very encouraging about getting back to feeling okay so quickly after the series.

  • trishyla
    trishyla Member Posts: 698
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    Couple of hints for getting through A/C. Hydrate, hydrate, hydrate. Then hydrate some more. Water is best, but any liquid you can tolerate will do. Before, during and after. It makes a big difference.

    Ask your M/O to put every anti nausea med they have into your pre-meds. I'm a barfer. Always have been. They threw the kitchen sink into my pre-neds, and I didn't vomit once. Was nauseous, but didn't vomit.

    Stay ahead of the nausea. Take the zofran, or compazine ON SCHEDULE. Don't miss a dose. Also learn the acupressure point on your wrist for nausea. I think you can find it on the internet. It helped me with breakthrough nausea.

    If you're having constipation, consider figs , either dried or in Fig Newton's. For many people they work a lot better than prunes.

    Take Claritin (NOT Claritin D) the day before, the day of and three days after your Neulasta shot. No one knows why, but it almost eliminates the horrible bone pain entirely.

    And most of all, be kind to yourself. Don't feel like you have to be Superwoman. Take it easy. Let others do for you. A/C is one of the most powerful chemos you can be prescribed. There is a reason it's called the Red Devil. It's hard, but effective. You can do it.

    Best of luck to each and every one of you. Sending healing hugs.

    Trish

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159
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    Yellow B, good on you for starting this thread. I used to read up on previous month's thread to understand AC SEs.

    What I found different between AC and Taxol is Taxol is cumulative, the first 5 weeks on Taxol I hardly felt anything. Maybe some random aches.

    The thing I found with AC was its very predictable. It follows a set pattern, atleast it did for me all 4 DD cycles.

    I stopped taking the steroids from cycle 2 as I did not like the wide awake and jumpy state I used to be in. Drink lots of water. Add a squirt of lemon juice or orange to make water tolerable. Use plastic cutlery if the metallic taste feels too much. I used to have food which had lots of texture as I couldn't taste much. I had a huge craving for olives and ice lollies which just vanished with Taxol.

    Practice good hand hygeine. Avoid closed crowded spaces, you dont want to catch something as your immune system is quite compromised. You will feel quite okay from Day 6 onwards. So one bad week followed by a good week.

    On the day of the infusion, drink lots of water. Maybe keep a ginger candy in your mouth, I did as I did not like the taste of saline when they flushed my port. If you have a headache during your infusion tell the nurses to slow the drip it helps with the headache. You can take a painkiller beforehand as well. Also, use an emla cream to numb the port area. My port worked fine for the 4 DD AC and 9 weekly Taxol. After that there were some issues with it so we went through the veins. Take your anti nausea meds beforehand.

    Alternate between Biotene mouthwas and baking soda rinse every 6 hours. Biotene also has a dry mouth gel, I found it really helpful at nights as I would wake up parched every couple of hours. Use a soft toothbrush and be gentle. Earringing is a thing. Ear muffs help.

    I lost my hair after the second cycle. It just started coming off. I would run my fingers through it and there would be .... oh wow..I had forgotten how that felt. Well, on a positive note, my hair is coming back so are my lashes and eyebrows. Its slowly filling in. This saturday I shaved my legs after 7 months.

    I had surgery 3 weeks after finishing chemo and now am undergoing rads.I hope this helps someone out there. Happy to answer if anyone has any more questions

    Lastly ladies, be kind to yourself. You can do it.

  • Polly413
    Polly413 Member Posts: 31
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    I did AC dose dense last Fall with Taxol following. Although I had days when I didn't feel right, I never had nausea and never stayed in bed during the day. I did get emend in the infusion. I had two prescriptions for anti nausea but never used them. I have heard that women who had nausea with pregnancy are more likely to have nausea with chemo. Maybe there is some truth to that as I never had nausea with my pregnancy either. I took Claritin the day of chemo and the next day before the Neulasta shot activated. I never had bone pain at all and assume the Claritin was the reason. But I did have lots of problems with my blood despite the shot. When I went to the clinic on the off week for blood work, my white cells were practicable wiped out every time. I never knew when I went for the next infusion if my blood would qualify for the infusion.Perhaps my age of 72 was a factor -- don't know. I had to stay at home all during the three months of chemo (stopped Taxol before the final month because of neuropathy issues) because of the risk of infection. Kind of like house arrest. I am deaf so couldn't talk to people on the phone either. Pretty frustrating to be so cut off for so long. Thank goodness for email and the fact that my husband was very supportive (practically a saint) and my dogs attentive! I did walk for about 20 minutes 3 times every day that I was not at the clinic having an infusion. (Live in the country so didn't see anyone on these walks). Its been almost a year since I finished and I am just now getting to feel normal again. Polly

  • MoonGirlJess
    MoonGirlJess Member Posts: 211
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    yellowb—one chemo nurse told me abt intermittent fasting and santabarbarian here on the boards. Our healthy cells go into self protection mode and the malignant cells (don’t have that ability) are left exposed to die when the chemo hits. With weekly Taxol I have to modify it a bit and I go low cal Friday and Saturday (less than 800 kcal/day) with lots of hydration. Sunday a virtual fast with lots of hydration. Monday chemo, with lots of hydration and no food until Monday night. But low cal then also. Low cal with hydration Tuesday. Wednesday I’m virtually SE free. I eat and drink what I please Wednesday and Thursday and start all over with low cal Friday.

    From what I’ve learned (my memory might have failed me) it’s 5 days at 800 kcal/day then chemo. Or you can go 3 days with just water prior to chemo. It’s a strange idea to starve yourself well but I’m not even having any body aching from Taxol today. The fast signals your healthy cells to ‘hibernate’ and not be as susceptible to the chemo. Thus, eliminating SE.

    Yes, I’m thin #115 5’7” BMI below 19 but I’m not sick. My last 2 ACs went so much better than my first 2 due to the fasting. I wish I had known abt it for my first 2 ACs. The better I stick with the fast the better I feel. I don’t eat but twice a day during the fast, morning and late afternoon but that gives my body like 16-19 hours with no food so it’s been effective to mimic a fast.

    It might sounds counterintuitive to fast but I’m convinced. Saved my butt time.

  • yellowb
    yellowb Member Posts: 102
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    Polly413, that sounds so very isolating! I'm so glad that you are starting to feel better.

    And thanks, MoonGirlJess, for the info!

  • yellowb
    yellowb Member Posts: 102
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    I am a week past my second AC ... and here's an oddity: The hair that had made it through Taxol is just now giving up and falling out, but I have new hair everywhere else on my head. No eyelashes, and just the tiniest remaining baby eyebrows.

    I know I'll probably lose all of it again -- but it's nice to have a little temporary velvet up there. I keep rubbing it.

  • MoonGirlJess
    MoonGirlJess Member Posts: 211
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    yellowb

    There is a video on Amazon about fasting. The Science of Fasting. Looks to be abt an hr long. I would have watched it during chemo today but my daughter took my ear buds out of my chemo bag 😡


  • poisedandpink
    poisedandpink Member Posts: 21
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    Is anyone doing AC without a port? I'm starting treatment soon. My first session is scheduled, but my oncologist did not mention putting in a port before starting.

  • beeline
    beeline Member Posts: 193
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    poised - I’m doing AC without a port, just had round 3 yesterday and no problems on that front so far though I have always been told I have “good veins.”Good luck!

  • poisedandpink
    poisedandpink Member Posts: 21
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    That's great to hear and thank you!!

  • Each_day_2018
    Each_day_2018 Member Posts: 66
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    After first AC treatment, My hair started shedding really bad day 14, was coming out in chunks by day 15 and I shaved my head on day 16 (Saturday). Have round 2 on Thursday....

  • jaboo
    jaboo Member Posts: 368
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    poised - I'm doing the whole chemo without a port and in only one arm (since the other arm is cancer side and lymph nodes were removed there). I have beautifull veins to chose from. Had 4 AC and 7 TH weekly so far and OK on the vein front.

    In fact, ports are very rare here and used mostly for longer or continuos chemo...

    My friend went through the whole chemo (4 x AC + 12 TH weekly also without a port, with bad veins at that. But she had neo-adj. chemo and thus had two arms to choose from

  • cbk
    cbk Member Posts: 323
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    Poised and Jaboo

    I did all 16 infusions without a port and on one arm. My chemo was neo-adj but there was some argument that they should only use my one arm. My infusion nurse wrapped my infusion site tight post treatment and Iwas fine.

    Very personal decision but I was adamant NO PORT!!

    I wish you all strength and positive vibes through your treatments!

  • yellowb
    yellowb Member Posts: 102
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    Hi, all - I'm a week out from my second AC, which is happening after 12 Taxols.

    I'm having pain when I urinate, which I do see is a possible SE of the AC. Did any of you learn of helpful home or OTC remedies for this SE? Other than drinking a lot of water?

    Thanks!!

  • Each_day_2018
    Each_day_2018 Member Posts: 66
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    Just coming back to life after my 2nd AC! Second was a little worse than the first. I requested fluids after the chemo and went back the following day for more fluids, did not notice much of a difference in SEs by getting more fluids...but it had been recommended by family members.

    For those of you who are further along, did your SEs stay the same from treatment to treatment? Were they worse/different/better? I am seriously scared to go back......

  • yellowb
    yellowb Member Posts: 102
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    Each_day_2018 -- I'm only one dose ahead of you, so I don't have a lot more experience than you. But my SEs have not gotten worse -- a little easier to deal with as I figure out what works to ease them. I have heard some people's do get worse, which makes sense to me; this is a cumulative sort of thing. (My third AC, but my 15th chemo infusion -- I am tired!)

  • MoonGirlJess
    MoonGirlJess Member Posts: 211
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    AC was awful for me—#1 was the worst. Needed more fluids and antiemetics. Had to change the game plan. #2 was bad also. #3 my mom tried to take me to the hospital. I told her I would die at home, thank you. After #3 I learned about fasting and it allowed me to finish my last AC with very little side effects. My onc tried to boot me out of chemo to rads because of my insane SEs on AC. She said she had 50 clients on chemo and I was her sickest. So now I fast prior to my treatments, which is a pain because it’s weekly Taxol 😭


  • Each_day_2018
    Each_day_2018 Member Posts: 66
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    MoonGirl - I read your previous post about fasting and I just read a few articles about it...I am def doing it before #3.

    Aside from your first post on the subject, any recommendations? I'm not much of a faster...more like a grazer; I tend to snack frequently, so it'll be a change for me!