AC tomorrow....SCARED & NERVOUS

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Hi,

I start my 1st of 4 cycles of AC tomorrow biweekly. I just finished 12 taxol treatments. It seems that from everything I've read that the Adriamycin/Cytoxan is the worst to endure. I have a lot of anxiety and want to know what to expect. For those of you that have done the taxol and AC, what can I expect? Any tips/advice? Thank you!

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  • moth
    moth Member Posts: 4,800
    edited April 2018

    I'm doing mine the other way - AC first and have had 3 so far. I've not found the chemo that bad. No problems with nausea (the pre chemo & post chemo drugs they give me have all been working fine). The worst complaint I have is that when the steroids wear off (around day 5) I feel really weak and shaky but that annoying feeling only lasts a day or 2 and then every day after is better. Food has no taste, water tastes metallic, and I need to use a mouthrinse to keep sores away. Fatigue, heart palpitations are the other issues. I try to walk outside daily but mostly I just rest and let people look after me. Eat even if you're not hungry.

    Are you getting Neulasta? Be careful of infections the first week post infusion especially...

    Do you have a port or are you doing it by IV?

    If it's IV the adriamycin will be pushed but if you have a port they might just hang it to infuse.

  • KBeee
    KBeee Member Posts: 5,109
    edited April 2018

    I did fine on AC. Everyone is different. I set my phone to alarm around the clock the first 5 days so I never fell behind on antinausea meds. I had no nausea or vomiting. The Antinausea meds gave me a little bit of a headache, so I took ibuprofen. You CAN do this!!!

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited April 2018

    AC was not nearly as bad as I had imagined it to be. I never once felt nauseous although I had a couple prescriptions to take afterwards if I did. I took zyprexa for 3 days after chemo but ended up being able to cut the dose in half and stop a day early after the second round. I still have a giant bottle of Zofran that I haven't used. I was very sleepy the first day I'm sure it was a combination of the drugs -especially Benadryl. I am a lightweight. I had a port but the adriamycin was still pushed and not hung in a bag. The first time you pee afterwards will be Red. Don't be alarmed.

    I did AC first. You have already done the Taxol so you kind of know how it will work and what things work to comfort you. I recommend Biotene toothpaste and mouthwash to help keep mouth sores away. I did not have issues with that but used the Biotene a lot.

    Good luck to you!! You are stronger than you think!


  • Katorissa
    Katorissa Member Posts: 1
    edited April 2018

    Hey there so this is my first time posting, and I too am scheduled for chemo as well mine is starting on 12 APR for AC PAC Treatment for the next 8 rounds of fund. I can say that i am SUPER SCARED as to what is going to happen to me and the reactions from the chemo and what my body is doing to do as well. This is the most scariest and I guess makes it more real for me as well. I prepared my self with some of the medications that i saw on previous reads and that was a great idea thanks for that to have them made up before hand ( which I thought was great ) cuz I'm a little of an OCD freak !! I am glad that this is available for me and that I can post things on here for other to read as well, it has been quite helpful for me to, thanks. Wish me luck talk soon take care everyone, and FIGHT LIKE A GIRL!!

  • KBeee
    KBeee Member Posts: 5,109
    edited April 2018

    Do remember to chew on ice or suck on popsicles during the adriamycin part (the red stuff). It prevents mouth sores.

  • Polly413
    Polly413 Member Posts: 124
    edited April 2018

    I did AC dose dense starting in mid August last year. It was not nearly as bad as I imagined. I did not spend any time in bed except to sleep at night but I did have a comfortable chair that saw a lot of me. I had no nausea or other digestive problems. The nausea meds during the infusions were all I needed and I did not take the prescription meds I had at home. I sucked ice during the entire time of the infusions, used Biotene toothpaste (but couldn't take the taste of the mouthwash so used a different non alcohol mouth wash), rinsed my mouth with salt and baking soda water during the day and had zero mouth sores. I felt great the day of the infusion and the next day. Felt pretty marginal by the 4th and 5th day but exercised my dogs 3x a day even on those days. Taste changed and I ate small amounts of food (including ice cream!) during the day and did lose some weight. Main thing was being weaker than normal except for blood issues discussed below. No true fatigue though. Chemo is supposed to be worse for older people but I was 72 and was told by the nurses that I "waltzed" though it. We are all so different and it will be what it is for you but might well be much better than you think. Here's hoping that is the case for you too.

    What made AC hard on me was that the Neulasta shot on the day after the infusion did not bring my blood levels up as fast as expected. So on the off week when I was tested my white blood cell numbers were so low there was concern for infection from other people. I had to stay at home basically during those months of AC. Then on the day of the next treatment I never knew if I would be good to go. Always was but had that worry every time. On the other hand I had zero problems with the shot itself. No bone pain or other SE's. I did take Claritin the day of the infusion and the next day. Also took an Aleve on the day of the shot (I had arm patch with the delayed auto shot at home).

    Ironically the Taxol was harder on me because I began to develop neuropathy in my dominant hand when I was 3/4 through and had to stop. I think this happened because when I iced my hands and feet I would take my dominant hand out of the ice to put ice in my mouth or do other tasks. Wish I had used the other hand instead. So you are already though the chemo that was hardest on me. Sending good thought your way. Polly


  • EmbracingToday
    EmbracingToday Member Posts: 12
    edited April 2018

    Thank you everyone! Your kind words of encouragement really help!Smile

    I'll just take it a day at a time. Like I said, I finished taxol last week. My main side effect has been the fatigue. Even if I sleep the entire night when I wake my body is still tired. I'm anemic, so that doesn't help. I have stage 2b breast cancer. 2 positive lymph nodes with the sentinel lymph node biopsy. I had a bilateral mastectomy, chemo, and will then have 6 weeks of radiation. 

    Did anyone of you need an echo before starting AC?

    Also, does anyone know why there is a lifetime max dose of AC?

    What are the main risks associated with taking the AC?

    Thank you.




  • Polly413
    Polly413 Member Posts: 124
    edited April 2018

    Yes, I had a Echo, also a bone scan and a CT scan. Don't know if my MO was atypical or not so will be interested in other people's responses to your question. My understanding is that you get "A" only once in a lifetime. Not sure about the "C". My main worry about the AC is if it did damage to my heart. During the treatment when I had all those blood issues, I worried that my bone marrow might be compromised but my blood numbers are normal now so I have put that worry aside. There are probably other things I should be worried about but heart is it for me at this point. Polly

  • moth
    moth Member Posts: 4,800
    edited April 2018

    Yes, I had an echo before AC and yes, there is a lifetime max dose for adriamycin due to the effect it has on the heart. The main long term risk with adriamycin is cardiotoxicity and the risk of congestive heart failure.

  • HoneyBadger47
    HoneyBadger47 Member Posts: 98
    edited April 2018

    Everyone gave great tips.

    Demand an echo prior.

    I do have heart problems from it. Pretty rare but it happens. My cardiologist said they are encouraging MOs to check after each treatment. Had my echo before but nothing after and mine only shows on EKG.

    Again...very rare. More common with Herceptin.

    You will do great. I took my antinausea drugs religiously, too. Never threw up!

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited April 2018

    I had a MUGA scan prior to starting adriamycin. Kind of like an echo with a radioactive dye that measures pumping efficiency and blood movement. I have not had a retest yet after chemo do i don’t know if there was any issue or decrease in function. I feel fine, althoughI think think cardiac issues can show up long after chemo is done.

    There is a lifetime limit on adriamycin.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited April 2018

    For what it is worth,I am almost 10 years out-- I had 4 rounds of A/C over 8 weeks--- it was not fun, but it was not nearly as bad as I imagined. I took all the anti-nauseau drugs they gave me. I had a MUGA scan before the test- and while I have not since had a Muga, my heart has been checked out over the years for other things-always looks incredibly healthy!!!! Be very kind to yourself during treatment. I was able to work through most of it-- but I cut some corners!!!! 10 years out I am healthy, well-- my little babies who were 7 and 12 are now 17 and 22... I am active, still working full time-- all is good. Good luck- this will pass before you even know it.



  • star2017
    star2017 Member Posts: 827
    edited April 2018

    Hi Embracing Today,

    Starting chemo was the scariest part of this process for me so far, scarier than surgery. But it went okay. I also had an echo before starting AC, as well as a CT scan and bone scan. I did dose dense AC (4 infusions).

    My main side effect from AC was the fatigue. I was extra sleepy for the 7-10 days after the infusion, but I was still functional. A couple times I got slightly nauseous and took Zofran to keep it from getting worse, but it was very minimal, and I would likely have been fine without any meds.

    My premeds before AC included antinausea meds and dexamethasone. I also had dexamethasone pills for the first few days after the infusion to help with energy and nausea. I also had a Neulasta on pro device. After my second infusion I developed a fever right around the time my white blood cell counts hit a low and I was hospitalized. The fever turned out to be due to a minor virus, and my WBC jumped up quickly in response to the Neulasta, so I was kept in the hospital "just in case" only.

    Wishing you all the best.

    Star

  • Denise-G
    Denise-G Member Posts: 1,777
    edited April 2018

    Sending all my best to you during AC. I was one of those rare ones who had a heart attack during AC because of it, so good they are giving you an Echo. My only advice - if you have anything weird with your heart, call your MO and tell him. I remember the night I had the heart attack, but I thought it was just SE from AC. I had no idea. Fortunately, I lived - LOL!

    AC is tough, but you can and will get through it!

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited April 2018

    Hi ET, I was thinking about you today. Hope your first AC infusion went well. One down!!

  • EmbracingToday
    EmbracingToday Member Posts: 12
    edited April 2018

    Hi,

    I had my first AC treatment on 04/03/18. Pretty uneventful and felt good the day of infusion. Yesterday afternoon I begin to fill ill. Fatigue and bone pain primarily. Trying to stay on top of my anti-nausea meds and prn meds. Feel miserable really, like the flu with no fever.

    Question: When are the worse days supposed to be? Is the second recovery week better as far as side-effects?

    Thank you!

  • star2017
    star2017 Member Posts: 827
    edited April 2018

    did you have neulasta?

  • moth
    moth Member Posts: 4,800
    edited April 2018

    EmbracingToday- my infusions are on Thursdays & usually I start feeling a bit bad by Sunday & the Monday is my worst day. After that each day is better. A week after my last infusion & I feel pretty much normal except for no taste & a bit of mouth sores (managed with the medicated rinse)The second week is definitely way better.

    If you had steroids during the infusion, part of the sick feeling is coming off the steroids. Just wait it out, rest, but also try taking small slow walks outside - it really helps.

    If you had neupogen or neulasta, that can cause the achiness and bone pain. Find out what you can take for it (Claritin or tylenol etc.). Baths with epsom salts can help a bit too.

    keep drinking lots - popsicles, soup, ice chips, whatever you can. The more dehydrated you get, the worse you feel.

    gentle hugs

  • moth
    moth Member Posts: 4,800
    edited April 2018

    Just an fyi you guys, I participated on the 'let's post our daily exercise' thread between my lumpectomy & starting chemo. After I started AC, I had days where I was getting winded from just walking down the hall. I popped in that thread yesterday to ask about AC & how it effects exercise & had some excellent responses from people who've btdt and a super video on the benefits of exercise during chemo. I hope you guys check it out.

    I'm feeling pretty much 100% back to normal except taste is still affected. The thing I miss most is the taste of tea. I'm a big tea drinker & it just doesn't taste right. I have blood work on Wed & if all is good, my final AC on Thurs.

    Hope everyone is doing well!

  • moth
    moth Member Posts: 4,800
    edited April 2018

    I'm done with AC!

    I want to share that what really worked for me was having the treatments in the afternoon, coming home & eating & maybe a walk or rest, and then I loaded up on all my prescription steroids and anti nausea meds + GRAVOL and going to bed for about 11h. Gravol knocks me out & counteracts the steroids which can make you wired. This way I just slept through the worst "I feel poisoned" part. Treatment 1 (before I figured out this method) I felt really bad - just sick and shaky and weepy and I needed people to rub my back and say "it will be ok". Sleeping through the worst of it really makes a completely different experience. The next morning I get up and feel totally fine.

    Hope this helps someone!

    *of course always check whether your doctors are ok with adding meds to your protocol :)

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