AC treatment
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I also lost my eyebrows and lashes during taxol. The aches and pains were far worse on taxol but fatigue was not quite as bad.
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Well almost done with first treatment. Started with tears as they were hooking me up to saline but got better from there. They all were very caring and compassionate and my mom and DH were here with me. I am getting the Neulasta onpro so DH has added Claritin to the shopping list. I also am anemic already so adding another vitamin. Flintstone chewable with iron were recommended since they are easier on tummy than the straight iron ones and have added vitamins to help! Now to wait and see what SEI might have.
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@HopeBry Thank you for sharing the fact that you refused the 4th AC. I did the same thing and was worried that I was the only one. Every part of my body was telling me not to take it. I asked to begin my taxol that day instead of the AC and my onc said ok.
She sent me for an echo and fortunately the results indicated no change from the one I had before beginning treatment.
I have completed 9/12 and my treatments have been delayed 4 times because of a low ANC. It seems the last 3 weekly treatments will end up being biweekly. The taxol is a breeze compared to AC with very little side effects.
Best of luck with your remaining treatments.
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I am from the October 2018 board. I completed AC chemo and now am on the weekly Taxol but I thought i would write about my experience with AC to help other ladies get through the treatment.
Nausea- My symptoms started a few hrs after the infusions. Even with pre-meds within an hr or two I was starting my nausea meds. Definitely take them on a schedule and don't wait to be nauseous or you'll be hanging over a toilet quickly. Keep food in your stomach. Sip a soup or nibble on saltine crackers if eating is hard. Keeping a full stomach HELPS the nausea alot.
Hair loss - I shaved my head to a buzz cut before I started Chemo, because I had long hair I thought it would be traumatic for me to see long clumps of hair fall out. So I took my own hair, one thing I had control over and I felt that it put me in "Fight Mode". The Buzzed bits fell out shortly after AC #2. But the first hair to fall out actually was down below and the hair loss worked its way up the body and the last to fall out was my buzzed hair bits. I kept my eyebrows and eyelashes until the start of Taxol #1.
Lack of Energy- I precooked batches of meals for myself beforehand. Enough to last me at least a week. Reheating in a microwave was such a blessing as opposed to cooking. Either a cassarole or something similar- lunch kits - with a sandwich, fruit, chips, and a cookie along with a bottled water, easy to grab and eat. Salad kits with everything chopped up I just needed to put the dressing on it. Mini ice cream cups as a treat, portion controlled but really helped when I really felt like poo. Sometimes having a favorite meal really can perk you up so sometimes I'd do that too, to try and make things feel as normal as I could make them. I found protein shakes and gatorade helpful too. I was drained for energy right up until the day before the next infusion starting from AC #2. I rebounded pretty quickly from AC #1 but from there on it took longer each time with the worst being AC #4.
Food Sensitivity- One of the biggest pains in the butt was the Acid Reflux. Your MO should prescribe you something for it but even with the prescription Prilosec I still experienced awful Acid Reflux. I found things like OJ and tomato based things would especially irritate it. Sometimes a cold glass of milk helped calm things down. I didn't really experience things tasting "off" I just found that I craved food that was unusual for me to want.
GI issues- I mostly dealt with constipation on AC. Senekot with the stool softner helped. Also drinking as much water as I could get down helped with keeping things moving.
AC wasn't easy to get through, its one of the toughest protocols out there, but for those of you going through AC, I have found Taxol to be much easier in terms of side effects. Once I was on the other side of AC and had recovered a bit I really felt great and felt so proud for getting through it. You can do it ladies!!
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RadagastRabbit—- thank you, thank you, thank you! You have hit the nail on the head as to how I feel and I was just rereading all these posts to see if I was “normal” I am trying to stay positive but really felt like crawling up in a hole the past few days. I dread it getting worse, but know I will get through to the other side thanks to wonderful people like I have found here
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Mncteach - your so welcome! Yep, even being a slightly seasoned chemo lady I find being positive sometimes still challenging, I mean this crap is hard, it makes you feel like poo and sometimes it feels like time is standing still and like it'll never be over. One thing I would I constantly remind myself is that this whole chemo thing is a temporary reality, not my final reality
Sometimes this helped, sometimes it didn't - The emotional toll this takes on the mind and the body, totally normal! Give yourself permission to cry, yell, punch a pillow, whatever it takes, sometimes letting those feelings out helps with coping and pressing forward. How far along are ya? You can do it!! 0 -
radagastrabbit— I had my first AC last Thursday.... keep trying to go forward but keep getting pushed back by my body.... so tough for someone who usually is constantly on the go...
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Hi ladies, for those of you who had Taxol first then AC, when did your hair start growing back after AC?
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@BrinkOfEternity, I really like your name here -- you went for it!
I did do Taxol first, and never lost every hair -- there was always some awful, random, damaged fuzz up there -- but the real hair started coming back 5 weeks after the last AC. It's very slow-growing, but thick.
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I too had Taxol first, then AC. I finished AC end of January (2014) and stopped wearing my wig mid June. My hair came back curly which i think is pretty common. It probably started growing in about a month, but not ready for prime time. It really does grow back though.
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Thank you for your replies! I just finished AC#2 and can see my hair shedding now... hope I get to keep some though I doubt it.
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Thank you ladies for sharing your experiences!
My mom just started AC. I’m just wondering how did you know if your chemo is working? And when did you assess that? Towards the very end? Or midway
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My friend said my losing my hair was God’s way of saying it worked. However I am receiving it post surgery so there is no real way for me to know if it worked. My tumor is out already so basically if I stay cancer free it worked
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Hello All.
I needed some mental health time while transitioning out of chemo (Last day was 1/15) and into radiation (started 2/20) but wanted to weigh in with my experience in case its helpful to anyone.
I did 12 weeks of weekly Taxol followed by 4 DD AC every other week.I know everyone's experience is different but if any of you are needing to hear that someone found AC manageable, I mostly did.
A few words on taxol first:
I had some sort of allergy to Taxol which led to my having asthma for the entire 12 weeks (and one rather severe allergic reaction during infusion). It also seemed to aggravate a bulging disc in my neck which led to a lot of pain in both arms for a lot of the 12 weeks, so I wasn't too sorry to see the Taxol come to an end. it was manageable but I had a harder time with it than a lot of people do. I kept quite a lot of my hair through taxol and almost all of my eyebrows, but my eyelashes fell out toward the end.
AC:
All four of my ACs went pretty much the same way (with some variation)
I infused on Tuesdays with premeds of Emend, Pepcid and Steroids. Got the Neulasta OnPro as I was leaving and it activated 27 hours later.
I took Zofran at 10 or 11 on Tuesday night and continued it every 8 hours through Sunday afternoon. I originally stopped it (at drs. suggestion) on Friday and found that i got really nauseous on Sunday morning so we extended. I had a compazine prescription also but never needed it. I took a daily Claritin through Saturday for the Neulasta and never had any bone pain.
Around 11 am on Thursday morning I the fatigue hit. I generally slept most of Thursday, Friday and Saturday getting up to eat starchy foods (lots of them.) and drink water and then I'd go back to sleep. The crushing fatigue would lift around Sunday afternoon and I was mostly ok from then on out. If I had had to commute to work it would have been much harder but I worked from home once out of the fatigue state.
At around day 8 or 9 I tended to get bad diarrhea that lasted for the next three days or so. I thought it was random at first but it repeated with each cycle.
AC #2 was the hardest for me because I ran a lowgrade fever from the Neulasta. AC 3 and 4 were progressively easier, I think I got used to it a bit. Also, I made sure not to go long without eating, and to drink enough water. It made a huge difference. an empty stomach definitely makes nausea worse and dehydration makes everything worse. I drank a lot of gatorade during the first 5 days of each cycle and a lot of water and it helped.
Side Effects:
Hair loss. What remained of my hair ran for the hills after week 1 of the AC. My eyebrows and any remaining body hair did the same.
Mouth sores: Had none, and I'd be lying if i said I did a whole lot to prevent them.
Nausea: Mostly covered above but a few more things about it. I remembered that Yellowb had said that she had had nausea that didn't always seem like nausea but Zofran helped it I took that to heart. I had this weird "ill at ease" feeling that I couldn't place and i took Zofran and it went away. Have food in your stomach.
Part of the nauseaish dread I had of the next AC, it turns out, was from being able to "taste" the Adriamycin and dreading doing so again. When I was diligent about keeping popsicles in my mouth during that part of the infusion, it was much less bothersome.
Fatigue: This was easily the worst side effect. Its indescribable but thankfully relatively brief. And it got better. Sleep when you need to sleep.
Appetite: Yeah, that was just fine. I gained 21 pounds.
Aftermath:
I went back to work at 4 weeks following my last infusion. The first few days I was EXHAUSTED by the end of the day but my strength ramped up pretty quickly. I suspect it would have been hard to do whenever I started so I'm glad I didn't wait much longer than that. I'm now up to my usual pre-chemo step counts and i'm upping the other exercise.
My eyelashes came in almost immediately but are very light. My eyebrows started coming in at 6 weeks. Now that i'm at 8 weeks they are fully in. I already need to shave my legs, which hardly seems fair. I have a nice layer of dark fuzzy hairlike stuff on my scalp - its evenly spread over the whole scalep. I look like i have the worlds shortest crew cut and I like it.
My post-AC echocardiogram was normal, but showed a 10 percent decline in ejection fraction and trace amounts of pericardial effusion (fluid). I'm not thrilled about either of these things but they are at non-worrisome levels. (my Ejection fraction went from 70 to 60 .. both are normal) I will need to do a follow-up echo in May.
General Advice.
1. Try to eat well even if its challenging
2. Drink. Drink Drink
3. Try to keep moving some, even if you don't want to. It is far easier to retain strength than to rebuild it. But if you can't, you can't.
4. Listen to what other people have to say about it, but don't let it panic you. Everyone's experience is different and it is possible to freak yourself out over things that may never happen to you.
5. If people are offering to help. Let them. If they aren't, ask them. If that doesn't work, come on here and meet new people.
6. There are a lot of groups out there that provides both support and 'stuff" and there is no shame in enjoying them.
I loved the Look Good Feel Better program through the American Cancer Society.
I signed up for Chemo Angels which was great and gave me two "angels" who wrote to me every week. That mail cheered me up every single week and I cannot recommend the org enough.
Lastly do not hesitate to avail yourself of your medical team if you are having a problem that you find unmanageable. You aren't bothering them, it is what they are there for.
I hope this was at all helpful.
Amy.
PS: Have something planned to look forward to. A trip, a treat.. something
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Hello ladies,
All your experiences and advice are very helpful. I just finished round 4 of Taxol, 12 rounds total, then 8 rounds of AC. Taxol has been non eventful so far but after reading all your words of wisdom, im nervous and a little scared of the future and the AC treatment.
The more I read the more freaked out I get. You’re all so amazing and strong. Thank you for sharing your stories!!
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KitKat— I know it’s hard, but try to to focus on the here and now..... my MO said she does the AC first because it is tougher, but just know you are tough and maybe you won’t have most of the side effects because you’ll already have a plan for the SE!
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KitKat - don't freak! speaking from experience it was unpleasant but not impossible and way less bad than I was expecting
On most of the bad days i didn't feel any worse than I did with a fluey virus and there were only few of those per cycle
On the good days i felt like me with a little less energy.
Just stay on top of the antinausea drugs is all
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My mom is on day 9 after AC#3 which hit her hard. She is still fatigue, does not eat much and her throat hurts her when she swallows anything all the way down to her stomach. She has AC every 14 days. I think the result of the chemo is cumulative because she is having the strongest side effects with this round. Hopefully she will not feel that bad on AC# 4 *fingers crossed*
Her MO will put her on 12 rounds of weekly taxol afterwards.
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Round 3 hit me the hardest too! There were times it hurt just to move. I was much better after round 4 and start Taxol Thursday
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hi ladies. My mom just had her 2nd AC treatment on Monday and has not noticed hair loss yet. Her SEs are minimal, consipation, fatigue, headache/dizziness. Should i be concere her chemo isn't working? When did everyone start with the hair loss? I am super anxious about all this. Should i contact her MO?
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Breathe!! She's doing fine!! Don't worry about hair loss, it will happen to some extent.
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I was told I wouldn’t lose hair until sometime after my second treatment. I lost much sooner but when it came out it, it just came out all at once. It wasn’t shedding before that. I went to comb my hair before bed and it just came out in chunks.
She will lose it.. I don’t know anyone that gets away with keeping their hair on AC.
My side effects weren’t terrible on AC; as long as you keep ahead with the meds it’s more the psychological toll I felt in my case. The first two were very easy for me then last 2 a little tougher! Make sure she doesn’t get backed up, that’s the worst thing that happened to me.
If it’s any consolation some people grow back hair more beautiful than ever. I hope this is your mothers case! Hang in there ! It will be ok.
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mine started shedding after two weeks but fell dramatically about three weeks after my first infusion.
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i guess i should calm down! This is her 2nd infusion and shes doing ac every 2 weeks. So about 17 days from 1st treatment I want to stop overthinking
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UCFknights— it is tough to be calm when a loved one is sick. And just remember everyone reacts differently to chemo. Sending hugs,
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UCFknights- don’t worry! My mom had STARTED losing her hair after 14 days of her first AC treatment. After six weeks of her first treatment, she lost about %95 of her hair. She is still not completely bald after her third AC. Some hairs on the sides are still holding up. She doesn’t want to shave it though LOL.
Her MO told us that some people just don’t lose their hair (although most patients do), but it’s nothing to worry about!
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I just finished my AC and just wanted to share my experience.
Nausea was the only big SE for me. It wasn’t too severe, but felt like a very long-lasting (5-7 days)stomach flu. I looked through cooking videos and recipes to find things I wanted to eat.
One thing is I had quite a bit of reaction to the anti-nausea medication Compazine. It made me very sleepy 24/7 and my eyes blurry. I think it somehow exacerbated the nausea too. When I switched to Zyprexa I felt much better.
Another thing that helped was acupuncture. When I got a full-hour session on the day of chemo, my nausea was minimal until day 3, then began to lift on day 5.
My hair began to shed on the day of Taxol #2, but on AC it didn’t start until a few days after AC #2. The rate and amount were about the same.
I did already have neuropathy from Taxol. When I received AC I noticed more numbness in my fingers, but it would always improve by the next cycle.
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Brink - I really hated the Compazine too! I couldn't even watch tv, it made my eyes blurry which made me more nauseous. The fatigue is already debilitating, so taking meds that also cause fatigue makes it so much worse! Once I switched to Zofran, it was much better. I also ended up getting dissolving anti nausea meds, because the first few days after each treatment, I couldn't keep the pills down.
So for anyone going thru AC now, if one med doesn't work, ASK for something else!! I suffered through 2 treatments before I realized there were other meds I can try! The doctors/nurses won't always tell you there's other options.
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hi everyone! I posted on another thread about this but who here is BRCA +? What surgery did you have? The genetic testing people called me yesterday for my mom but missed the call so I’m calling today.. it’s been about a month since they sent it in. I am so anxious!
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I’m brca2+. I had the mx on the cancer side and a prophylactic Mx, Fallopian tube, and ovary removal (not all at once)
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