Starting AC+T in March 2018
Hi All,
I just started dose dense AC+T in March of this year and am looking for others going through the same thing. I get confused with all the different drug regimens and find it most helpful to hear from others who are sharing the same regimen as I. I had my first dose on 3/16 and am still feeling my way through it. Anyone else out there doing AC+T this March? How's it going for you?
Ordinarybeauty
Comments
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I agree, I wanted to hear from others going thru same chemo drugs as I...4 does of AC then 12 of Taxol. First does was 3/5...day 2 thru 6 were horrible with nausea. Took all nausea meds prescribe 24/7, but not enough, couldn’t eat much, crying all the time, shaky weak legs..not a fun week. Then Monday came around and Lab/Nurse appt, they gave me IV filled with stronger nausea meds and steroid and Lorazepan, I felt human again and it lasted all week...finally got my head around I can do this!!!
Had my 2nd dose of AC yesterday ..with additional nausea meds and a patch subscription that goes behind my ear. I feel fine today...100% better than last week at this time...just shaky legs and a little sleepy. I can do this....with all the drugs!!! Hahahah
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I feel shaky too and have double vision. My nausea is not so strong, but my jitters are. They sent me to the ER for the double vision, but nothing showed up on the CT. I'd like to get it figured out so I can drive. I'm also crying all the time (which I have no problem with but folks around me get uncomfortable). Also, I', tired and just out of sorts.
Calee65, what's your diagnosis?
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This week I’ve had two IVs with nausea and steroids added, they made a world of difference. The nurse said the steroid is probably why I’m so shaky..at least that part wears off. After first dose I was crying all the time, so I asked for anxiety meds, I also couldn’t sleep at night, so they gave me something that has worked wonders for both issues.
Dx 12/2017 @ 65 yrs
IDC, left, 4 tumors up to 2 cm, bilateral mastectomy 1/25/18; Stage 2A, 2/13 nodes; ER+/PR+ /HER-
I decided not to do reconstruction...not worth it to me
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Had my second dose of AC two days ago and I'm doing OK. I get a little shaky from the cortical steroids they give me and the ones I am supposed to take for 3 days after chemo (dexmethasone), but that only lasts for the three days after chemo. I went to the medical marijuana store with a prescription from MO which got me a 10% discount on a product for constipation. It seems to be gently working! I'm waiting for my hair to begin to fall out. I had it buzzed short and bought some wigs, so if it doesn't fall out, I'm gonna be annoyed with myself for cutting it in the first place!
So this time, round two, so far so good.
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ordinary beauty thanks for starting this thread, I agree, it is nice to hear from those getting the same tx---the people who started at end of March chemo group seem to be getting mostly TC. I am getting neoadjuvant dose dense AC (4tx) plus taxol (12 tx) because my tumor had a very high Ki67=85%. The have have me on a anti nausea protocol that started last mon, 1st day of AC with IV steroids, Emmend, Aloxi and Zyprexa. Zofran was every 8 hours as needed. this seemed to work well as my nausea was controlled by the zofran and I just stuck to bland foods--have to say I didn't eat much in general first few days. I only had mild jitters from the steroids, feel weaker and shakier after they wore off. My biggest complaint was fatigue and the bad taste made it hard to stay hydrated with plain water. Then I stopped taking zofran Wed thought I felt kind of normal thurs and Fri--but thurs was my last steroid dose and experienced crash starting yesterday. Feeling super fatigued just trying to do any activity and achy and its uncomfortable to swallow going from my throat down my chest. Have you guys had that sensation at all? Doc said par for the course with the AC, lining of whole GI tract is basically affected. Also I was super constipated and ended up needing milk of magnesia yesterday although I had been taking miralax, colace, and senna for several days, turned into big D yesterday. Today I feel like my stomach is still kind of upset and overactive, back to eating sour dough toast again. I'm glad you sound like you're doing ok after your 2nd tx, starting to wonder if I will be back to normal before my second. I have medical marijuana as well, I read the 1:1 CBD to THC is supposed to be good at killing the ER/PR+ BC as well as ease SE's, haven't used it yet though because I didn't want to mix with all the other stuff, was planning on using it week 2 of tx . Are you also in CA then? I got my wig on Friday and I really like it but was very expensive--had to get human/synthetic blend because the others seemed to look too big on my head. So, yeah I would be pissed if I cut my long hair and then spent all that money for nothing. MO told me no chance of keeping my hair with this regimen though, cause I had considered the cold capping but he said wouldn't work with the AC I would still get patchy hair loss at best so not worth the money and hassle of freezing.
Calee65 I'm so glad it sounds like they adjusted your nausea med regimen, it sounds like you had a really rough time before, hopefully you will get a lot more rest now, the sleep is so important to heal our bodies. So sorry you had to go through major sx before as well.
So glad to hear round 2 seems to be ok so far, hoping for a good week for all
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Hi, I started AC+T in Feb. Was supposed to be biweekly but so far because of bad blood counts (& hospitalization for febrile neutropenia after round 1) they've been every 3 weeks so far (and 2 and 3 were both reduced dose to 75%)
I just had third dose last Thursday. Yay, only one more AC to go. Hopefully this one will actually be 2 weeks.
They're still changing their minds about whether we're doing 12 weekly taxols or 4 biweeklies so I don't know when the end date is & I can't have a nice countdown calendar - oh well.
I've had no nausea - which was my biggest fear honestly because I'm a super barfy person and so many things make me nauseous. The protocols here work for me so that's been good. My biggest bad side effect is that I hate the steroid crash - which is just starting now & if past two cycles are to go by, Monday will be my worst day. I hate that shaky weak feeling.
I just noticed last night that my nails are turning a bit blue at the cuticles. Just weird looking.
mLghtn - I have that weird swallowing thing too, esp by week 2. I was prescribed a mouth wash which I'm meant to swish & swallow and it really helps. It soothes the mucosa of the esophagus. Chemo kills all rapidly growing cells and that means the mucosal layer of your mouth & whole gut is also trashed. Ask your MO if they have something like that. If you want I can send you the ingredients - it's something the pharmacist has to mix up & you keep it in your fridge. -
Moth thanks for the tip for swallow problem. I think they told me about some "magic mouthwash" prescription i could ask for as I am now also unfortunately starting to get some mouth sores too, despite my vigilant mouth rinsing
. I think I will call tomorrow, I didn't realize it was a swish and swallow med, so that will help help with both issues. I did read a lot of the Feb group posts during my diagnostic period so I know some of what you went through and so sorry to hear you experienced the febrile neutropenia (serious and scary thing to go through). The MO told me I shouldn't be too concerned about becoming neutropenic being on the neulasta, his nurse practitioner acted like it could just randomly happen within a week and be carefulI. On top of everything I had to get a mole removed from my ear the week before my chemo started so now I have basically an open wound (I keep it covered all the time) that will take some weeks to heal now that my body is compromised by chemo. I also have 2 kids and pets, I'm pretty fanatical about hygiene and wear gloves/mask when I'm cleaning etc since I don't know what my counts are. They are only doing blood draws prior to infusion right now. Staying infection free is definitely on mind and I'm trying to be as safe as I can. I also really felt that shaky weak feeling much more after steroids wore off. Glad to hear that you are much better now with only 1 left to go!
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@mlghtn I'm in WA state where MJ is legal. And, I have to say, the MJ product for constipation (a suppository) works! Hallelujah 'cuz the other stuff is too strong for me. Maybe TMI and yet, I'm celebrating that some part of my body is now working right! I also have amend and eloxi (but no zyprexa) with my AC. Do you know your oncotype score?
@calee, glad to hear that the addition anti nausea and steroid meds worked.
@moth, you've had a rough go of it. I'm glad to hear its going better.
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ordinary beauty great to hear that suppository worked! maybe I'll inquire for next time as all those meds I used work a little too well and created opposite effect. The zyprexa is kind of weird because its an antipsychotic (which made me reluctant to take it) that acts on brain and its part of a newer protocol. I guess a couple years ago studies were done and it was found to be up to 75% more effective than without in first 24 hrs after chemo. I definitely felt like combo worked and the nice thing was it knocked me out for infusion and each night that I took it thereafter, so I got a lot of sleep in first few days. I stopped taking it a day early cause didn't seem to need nausea meds anymore and felt like it added to constipation and I don't love the idea of taking that type of medication. I don't have an oncotype score since I didn't have a lumpectomy yet, they want to shrink the tumor and make sure the chemo works before they remove it. I think you have to have the tumor not just the biopsy for the oncotype, but could be mistaken...
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Ordinary beauty, thank you for starting this thread.
I am doing 12 Taxol first, followed by 4 AC. Not sure, why in that order... Had 2 Taxol injections done, the third one is on Wednesday. I realize that Taxol is much easier for many than AC, for now I got minor insomnia and constipation.
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@mlghtn Are you saying that the studies showed that zyprexa made the chemo 75% more effective? In that case, sign me up! Or is it 75% more effective than what in the first 24 hours? I asked my team to do my oncotype on my biopsy tissue as I didn't want to wait for the lumpectomy. The test takes 4 to 6 weeks for results and I wanted mine asap. Prior to my oncotype results, lumpectomy, radiation, hormone treatment and no chemo was the plan but my score changed all that.
@Liza, welcome. Its good to hear that Taxol is easier than AC since I have it in my future. On the bright side, my second dose of AC seems to be OK. I'm in a crappy mood, but my SEs are minimal. Some jitters from the dexamethasone (today is the last day of it) and some mild nausea after eating.
For some reason, I am angry about cancer today. PO'd that my life is now bounded by chemo and doctors and avoiding crowds and.....
I think I need to take a walk!
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Sorry for the confusion, i meant 75 % more effective against nausea in the first 24 hrs of chemo tx, it goes down after that. unfortunately not he cancer killling activity..
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Hi Ladies,
I am also on the AC+T protocol, neo-adjuvant. 4 bi-weekly rounds of each. Had my first dose on March 16th and my second last Friday. So far, Monday's are the toughest. Mostly just tired and some heartburn. I take Neulasta as well. My hair has now started to fall out. Now on my third haircut to shave it down. Which for me is the hardest part at this point. Overall, this is not as bad as I had imagined. One question, I thought Taxol was harder, but, someone mentioned it is easier. That would be nice :-). 6 more to go!!
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@Tlow, you and I are on the same schedule. Had my second AC last Friday as well. The second round was much easier for me. I'm not sure why but just a little constipation and heartburn. My hair hasn't started to fall out, but my MO assured me today that it would.
Well, my walk did wonders to get me out of my head. Now, I'm just tired. Yeah!
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Glad to hear you guys are doing so well, makes me hopeful for the tx#2 next week! My first was Monday a week ago and I feel like I'm almost back to normal. I think I recovered from what seemed like a steroid crash (flu like feeling) over the weekend and even that horrible difficulty swallowing sensation was gone today as well as the mouth sores that had started yesterday. When I woke up it was like all had miraculously healed overnight and hasn't come back yet...
Thanks for all your posts, it really helps to hear other's experiences!
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I don't mean to butt in this group - I had 4 AC treatments and then 12 Taxol (and Carbo) back Aug-Dec... My oncologist suggested sucking on ice just before the adriamycin started and while I was getting it and a little after - it's to keep your mouth cold and for the drug to not go to your mouth - I didn't get any mouth sores. I hear it isn't proven but I feel it worked for me. When I got sick of ice I would eat a popsicle.
Thinking of you all!!
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Good to know Ordinary Beauty :-).
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Hello all,
I started AC beginning March and am going thru aftermath of 3rd round. I don't get really nausea so I am taking nausea med sporadically when the odour of the water is too hard to bear. However, as other stated, I got pain/burn swallowing about 1 week after chemo dose. I had also a harder time with round 2. Now thru round 3 I don't have nausea but felt weak and days 2 to 4 felt like fainting each time I stood up. I have also spots in my vision like I watched the sun or a lamp, which I did not. What I have also is insomnia. Yesterday I didn't sleep during the day hoping to sleep at night but it didn't work unfortunately. Also, yesterday I felt restless didn't know if I should sit or move around or just stand or lie down. Very annoying! Today I am fine liyng on the sofa reading all the threads from this website and moving every 2 hrs to drink.
Thanks ordinarybeauty to start this topic. I will put it in my favourite.
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@lolotte welcome and sorry to hear your 3rd round is not so great. I also have some trouble sleeping so I got medical marijuana gummy chews for it which seemed to help. My MO had suggested Benadryl which worked as well, but I prefer the natural stuff. i had double vision in my first round, but I think it was from too much Ativan. I'm not using Ativan this time and my vision seems to be fine. Hope the sofa stays comfy for you.
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Well yesterday I thought I was having a normal day (day9) and even exercised albeit slower with more breaks than usual. Then in the evening headache started and no medications seemed to help, it wasn't an excruciating headache but I just felt bad in general and very fatigued again. On top of that I thought my mouth was back to normal and so ate various nuts, had mouth sores by last night---even worse than before despite brushing teeth and rinsing with biotene after eating. So frustrating, trying to live like normal as much as I can and not constantly focus on what I can or can't do, but last night I felt like oh yeah I feel terrible cause I have cancer and going through chemo, and I should've done differently, ugh... I feel all is getting better again today, though not as good as yesterday morning. Sorry for the vent, I really appreciate the site and everyone's posts.
Wishing you all well today
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hello,
I am also prone to mouth sore and this time around I am chewing gum all day long. My sis who is a doctor says that the saliva acts as an anti bacteria solution so less sore. So far, this is the only positive thing happening to my body compare to the last 2 times. I have found that chewing gum remove the weird taste and sensation in mouth so for now I stick with it.
Anyone having issue eating? Nothing appeals to me and I am finding myself full with extremely few food. For example yesterday 1 slice of bread, 30g cheese, one instant soup cup Lipton style and half a cup baked ziti for the whole day.
Also without asking MO i took Xanax yesterday for sleep. Feel bad about it but couldn't see my self not sleeping for 3 nights in a row.
How are you all dealing with your SEs?
Cheers
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lolotte Thanks for the gum tip, I will definitely try that especially first week after tx when I had the taste issues. I did use Xylimelts last night before sleep, its a minty moisturizing lozenge you let slowly dissolve and I think that helped too. I had a lot of food issues the first 4-5 days after tx and hardly wanted to eat. the only thing that appealed to me was sour dough toast with butter or bananas or banana smoothies. I made myself drink a lot of broth but the thought of it now makes me sick so don't think I will be able to have the broth like last time for #2. I did make up for not eating starting around day6 became very hungry and taste was back. Also water tasted really bad (salty metallic) and even though I was trying not to have any sugar I ended up putting apple and cranberry juice in my water to make it drinkable because I felt I was probably not hydrating enough. Also I did notice my vision bothering me and felt like hard to focus for a couple of days, I think it was dry eyes and the lubricating eye drops helped for that. You shouldn't feel bad about Xanax because you need to sleep, its the most important thing for your body to have that total rest to heal. Luckily the Zyprexa they have me taking the chemo week knocks me out and I sleep a lot. Hope you start to feel better soon.
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hey everyone. I wanted to join in on the conversation. I had my second AC treatment last Friday. The issue that bothers me the most is the throat and ear pain. I know some of you mentioned the throat pain, but does anyone feel it all the way up to their ears and in their chest? It feels like bad sinus pressure in my ears and sometimes I feel like sounds are so loud! I think the chest pain may be related to my surgery. I am also desperately hanging on to my hair. I am 31 and still working everyday and just can't bring myself to shave it off. It is going pretty fast after this round though.
Thanks for making this thread! We can all get through this together!!
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Hi Ig10, sorry you are joining us, but these forums definitely help. I did feel the the swallowing discomfort extended into my neck, like back of neck even and into my chest. Also the neulasta gave me chest pain on like day3-4 since there are large bones there making wbc's. Sinus pain or pressure I would clarify with doc and just make sure you're not getting sick. Any pain that is really hard to bear I would just call to be on the safe side. I called on saturday when i started having swallowing issues and doc called back right away and was reassuring it was par for the course. I'm sorry you are so young and dealing with the hair loss while trying to work. I'm 49 but pretty much felt like I just turned 40 and had long blond hair, hair thing was huge for me initially, worried it would come back gray and I would suddenly look really old. Now I feel I'm kind of over it most of the time. I got a really nice wig that will be fun to style, not to mention much easier and it looks great, my overall health and knowing I'm doing everything so I never have to deal with this again is more important. I cut most of my hair off so its much shorter but I will probably start freaking next week when it starts to come out
Hang in there, at least you can say you're like 1/2 way done with the AC.
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hello Ig10,
I started to loose my hair around round 2. I got them shoulder length and ended up shaving them as loosing them by lump was an inconvenience for me. However. I have still some on my head and wonder how they would look like now.
No ear pain for me but feelings is like having water in one hear although it was checked by the nurse. She told me to continue claritin for longer period of time. She mentioned allergies. I don't know if she is correct though.
Congrats on continuing working Ig10
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Thanks, mlghtn. I mentioned the pressure in my ears at my last appt and we are watching it. It happened last time too. I was having some inner ear issues after my surgery and I'm wondering if all this is related. I probably need to bring that up. It's so hard to know what's normal and not during chemo. I was healthy before my diagnosis and rarely got sick. Now I'm worried about everything. The neulasta is hard for me. I have the onpro and the day after is my sick day. I am sore to the touch all over my body. Luckily it only last a day and you're right --I'm halfway done with AC! I will have to cave soon and shave my head. I have a nice wig as well and need to get used to my new normal.
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My hair is definitely falling out. I have one friend who told me how cute I look almost bald. Such a kind thing to say, gotta love her. I have a feeling some patches of hair are just gonna stay put.
Saw my MO today and while I'm doing pretty well chemo wise other than no appetite (lost 8 pounds Yay), the awful taste in my mouth, constipation and trouble falling asleep, my SEs from the second round aren't too bad. Turns out I have some lymphedema from the surgery which, according to my MO, can be handled with massage and a sports bra. My MO also suggested sucking on lemon drops to deal with the bad taste in my mouth. My challenge now is to find something to drink that doesn't taste like salted metal sawdust.
FYI, my wig maker said not to shave the head as the little bit of hair that is below skin level will not fall out and will be annoying. He recommended buzzing it to 1/4 inch which is what I did. When I have nothing better to do, I can pull at the quarter inch that's left. What hair that hasn't already fallen out comes out in my hand. It's an interesting past time..................I hope it gets easier for us all.
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Ordinarybeauty Thats great to hear that you're SE's are not too bad this round! And a little weight loss is always nice
. I also lost 8lbs but it was more from anxiety and loss of appetite from my new dx prior to chemo start. Now I seem to be maintaining same weight. Totally relate to salty metal taste of water and unfortunately didn't find a good solution for that---added juice to my water and helped minimally, so not looking forward to that again next week. Good tip for the hair, have seen some others post similar and will probably have to do the same next week. Looks wise I think the patchy part would be hard and you are brave to let your lovely friend see you. I'll probably be pulling it out not just as a past time but also to try to make it look even...
Hang in there, wishing everyone well this weekend
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I was expecting the Taxol part of the ACT regimen to be easier than it is turning out to be. I had my first Taxol infusion 5 days ago and I have been a hurting puppy ever since. I've had dry mouth, muscles spasms, constant bone and joint pain interrupted only by stabbing lower abdominal pain, lethargy, mild neuropathy on my hands and feet and constipation. For the last 5 days I could not get comfortable, even to sleep. I spoke with my MO yesterday and she advised that this was par for the course, take lots of Ibuprofen, go to the pot store for pain relief as well, continue the Claritan and up the Miralax. So, I did all of those things. I took the Ibuprofen and quarter of the dose of the pot tincture and sure enough, the pain changed. It didn't quite go away, it just got muffled. I felt too high to do anything, so I slept the day away and slept well last night. I'd rather not be high, but at least I was out of pain. I have to work today so I'm going to try the day with Ibuprofen only, as I do not trust myself to do my job (or anything else for that matter) while high.
How are the rest of you all doing with Taxol?
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