Newly diagnosed, about to start AC
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Little Duck
Member Posts: 5 ✭
I put this in a new discussion thread but realised I should probably have put it here....
Hi,
Well as the title indicates I'm newly diagnosed with invasive DCIS, starting AC the week after next. I'm aware of side effects but wondering how the first treatment is likely to be - do they get worse with time, is it possible I'll feel well enough to attend uni two days later or is it just impossible to know? Feeling nervous, apprehensive, terrified but also wanting to get treatment underway...
Any advice greatly appreciated.
Hi,
Well as the title indicates I'm newly diagnosed with invasive DCIS, starting AC the week after next. I'm aware of side effects but wondering how the first treatment is likely to be - do they get worse with time, is it possible I'll feel well enough to attend uni two days later or is it just impossible to know? Feeling nervous, apprehensive, terrified but also wanting to get treatment underway...
Any advice greatly appreciated.
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Comments
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Hi there love. First thing first. So sorry you have to join the BC ship. But rest assured you will feel very supported with the crew on here. Tell us a bit more about your diagnosis. Have you had your surgery yet? And do you know many rounds of chemo you are having? How old are you etc The more info you put on here the more advice you can get from us all. I had triple negative breast cancer (may ‘16) and I had 4 rounds of AC and 4 rounds of paclitaxol 2 weeks apart. I also had left boob off (stage 2a grade 3] so I didn’t have to have radiation as well as chemo. Then I took the other one off as a prophylaxis as my guts told me too.
The AC was pretty much the same for me for the 4 rounds. The first week for me was the worst and I felt a bit better from about day 6 onwards. Everyone one here will give you different advice as it truly effects everyone differently. I’ll let you know what it was like for me but please keep in mind it may be totally different for you. And some of the crew on here get minimal side effects like @Afraser And @kezmusc
When I was diagnosed I was studying part time at uni too and I had to give it up due to the fatigue and issues with concentration. I was given pre meds initially then was doped up on phenergan and pain relief post for a few days as I had the neulasta injections too post that gave me body aches and pains so I wouldn’t of been able to concentrate even if I wanted too. But the fatigue was the pits. I was ok for a few hours in the morning when I got all my house stuff sorted and dinner etc then I had to rest for the day either in the bath (heavenly) or on the couch I then sorted dinner for the family then crashed after that for the night. My hair started falling out after dose 2. I shaved it after that and just rocked out in bandanas. I was also lucky enough to not have too many issues with nausea either.
The paclitaxol was a bit better but I had different side effects such as reflux and neuropathy to my hands. Rest assured love. It was doable for me..... shitty but doable. Does that make sense. Try not to google anything. Take advice from your team, be kind to yourself, delegate when you need to, take help if it’s offered, and trust your guts. Hope this helps. Biggest hug. Margie. Xx5 -
Hi @Little Duck. Welcome, although sorry you need to be here. It really is impossible to know how you'll react. I had a different cheo cocktail but the effects do tend to be cumulative. Keep a diary of the symptoms you get, and report them back to your oncologist. If any of your reactions seem excessive to you, don't be afraid to ring your chemo unit to ask for advice. They may be able to offer a different solution.
Have you had surgery yet, or are you starting your treatment with chemo?
Do a search of the forum under ac chemo, and you'll find lots of threads with useful information.
Have you ordered/ received a My Journey kit as yet?
I'm sure there will be lots of others along soon offering their wisdom
Take care3 -
Hi there @Little Duck..I don't want to come across as being flippant, but it's a little like pregnancy and childbirth. Some lucky women sail through pregnancy without so much as a burp. At delivery, they pretty much drop their dacks and out the baby pops. Other women have varying degrees of troubles both before and at birth. So hard to predict where on the line you will fall. Pretty much the same for AC chemo. You may have little or no side effects, or you may suffer a lot of them. For life in general, I say prepare for the worst, and if things are not so bad, you don't get taken by surprise. I had convinced myself that I was going to puke non stop, and so the first thing I bought was a plastic bucket...it remains a virgin. Not even the slightest queasiness throughout the six months of AC then taxol and herceptin for almost a year. However I did have lots of problems with other side effects, (spent a total of 56 days in hospital through chemo, but no vomiting). For your first session, I would suggest having someone go with you for support. Also to drive you home afterwards as you probably won't feel up to it, even just on an emotional level. Be well hydrated before you arrive. Take your own tea or coffee and anything else you might fancy to drink or nibble on. Boiled sweets are good, and I was very keen on salt and vinegar chips...the saltiness and tartness helped with the foul taste in my mouth. I took my knitting and my kindle also. Follow the advise in the written stuff you will have been given afterwards. After your first dose, you should have a better idea of what to expect. One step at a time, and we will be here to cheer you on and support you. You've got this!!!
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Hi @LittleDuck
It is really hard to know - if anyone can crack how it works it could help some people - but possibly not help others. As @onemargie has said, I got through pretty well. Lost my hair day 14 and was rather glad to see it go - it felt horrible! Got it cut very short so that losing it was pretty straightforward - not what you want but manageable.. You will know best whether you want to go au natural, use scarves or go for a wig. As I was otherwise pretty well throughout, and working, I went for a wig. Most people at work, apart from those I told, didn't know a thing and I quite liked that! No nausea, no fatigue, no chemo brain. I did get one side effect, after A/C but possibly partly attributable to A/C, but also partly attributable to my age (I was 67) and a pre existing condition. So almost certainly not going to happen to you - isn't that much of a problem anyway, but don't think you have to be concerned about it. I travelled to treatments on my own (really didn't want to drag my husband along when I felt fine) and he actually went overseas for a week after my first treatment as there really was no reason not to. It's a lucky dip - lucky for some, not so lucky for others. I had Taxol after A/C, most people find it much easier and I hated it. Got more irritating side effects on that and one long lasting one. Best advice I can give if you have a harder time is to try and remember it's finite. Every treatment is one less to go through. It seems like for ever, but you may be surprised that it sometimes goes faster than you think. Keep your eye and your heart on the end date! Best wishes.
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Sorry you find yourself here Little Duck, but having said that, it's a great place to be. Lots of good advice and wonderful support. I have found it invaluable!
I had different chemo from you but if I may I'd like to add to the excellent advice above. Chemo can give you the runs or set you like concrete. You don't want the latter to hit in the middle of the night and be unprepared! So have something on hand. If you go the other way, it's handy to start a couple of days before your infusion. Coloxyl and Movicol get good reviews! After your first dose you'll have an idea of which way you go.
Drink lots of water to flush the chemo through, 2-3 litres a day for the first few days. And exercise during chemotherapy can help reduce side effects, even if it's a 15 minute slow stagger!
I wish you all the very best. I was shocking scared before chemotherapy and had a full blown panic attack. But you know what, I managed OK. Accept all offers of help, be kind to yourself, and take it one day at a time. K xox3 -
@LittleDuck as everyone says it's a bit of an unknown. Your first will give you an indication of what the rest will be like but I would not assume that you will be at Uni a couple of days later. For me, my first was dreadful, but that had more to do with me not realising that I could ring the nurses on the weekend and get better anti-nausea medication (Maxolon was no better than Smarties). So, take someone with you on the first visit in case you need something that will prevent you from driving - I did. Ring the centre if the medication they've sent home with you doesn't cut it. Some people have absolutely no issues but I don't think that it's uncommon to be out to it to some degree for until Day 6 or 7, then you'll probably start to come good. 2nd & 3rd AC not so bad, possibly because it's more expected. I'm currently getting over number 4 which has knocked me a bit more with the nausea again. Good Luck2
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Thanks everyone for all your responses and advice, as you all know everything is so overwhelming in the first month. A bit more info about me - I'm 46, have three kids (13, 11, 9) and am studying for a degree in Nutritional Medicine part time (oh the irony). Until this bombshell I was on track to finish end of next year but this will put me back at least 6 months, assuming I can finish this semester, which I'm really hoping to do. At my biopsy (which happened after a routine mammogram due to family history - can still so clearly recall mentally ticking the mammogram off my to do list back in February), initially they thought it was DCIS but contained, so I had visions of maybe 1 month of disruption (surgery then recovery and surely I'd be back on the netball court in time for the upcoming Winter comp?!). But within a week it went from preventive surgery to "you've got cancer and may need a mastectomy". They are recommending chemo first as the cancer is Her2 positive and apparently trials of chemo then surgery in this instance have been very positive. So herceptin is on the cards as well. I have 12 weeks of AC then 12 weeks of taxol coming up, then surgery after that. It's all so surreal as I feel perfectly healthy (aside from a constant headache and slightly ill feeling since all this began!).1
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Oh gosh, I did that too, happily ticked the mammogram off my health kick to do list last November. The rest of that list is still waiting...1
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Similar story, here. Had my health check to-do list - then wham! Mine is ILS and was originally thought to be about 2.5cm with no nodes so I went in for partial a few days before Christmas. Path report came back as 4.5cm without clear margins and in the nodes, so back in after New Year, mastectomy, clearance, AC chemo, then it'll be Paclitaxel, radiation and hormone therapy. One of the common themes on this site is of people going along in their life, feeling well and then being completely sidelined by this bastard.4
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Dear @Little Duck , Best wishes from jennyss in Western NSW
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Hey @Little Duck ,
Welcome to the forum. As you have seen already, everybody here is full of warmth and tremendous advice. Unfortunately no body can tell how they are going to react until they start. I really believe it's important for those who managed ok to share their stories for those just starting out. I had myself that worked up about the side effects I was so very close to bailing out on the whole thing. It's no picnic run but it was nowhere near as horrrid as what my brain had conjured up.
I had the surgery first but the same chemo regime then 6 weeks rads. I was 45 at the time of diagnosis.
You will get your chemo education prior and, like everyone, it will scare the daylights out of you. The list of side effects is long and daunting. However, they are all the possible side effects that could happen. It doesn't mean they will.
My first 3 x AC I coped well. Day 2 and 3 after chemo I was on a high from all the steroids and went flat out, got heaps done. Bit of a crash day on day 4 but then pretty good from then on. Number four was a bit more rugged, but hey, at least that's the last one. Maxalon is a waste of time so ask for the good drugs straight up!
Taxol was soooooo much easier. Next to no side effects with that one.
Hardest thing I found throughout was the hot flushes, mild light headedness at times, and everything tasted blah. (Lots of mints and fruit tingles) Luckily, wine and tim tams tasted the same or I would have been really ticked off. lol.
I kept my hair with the cold cap, so that was very helpful. I worked, shopped, cooked, ran the farm, rode my horse, went to horse shows, partied in the bar with the cowboys, renovated my dining room etc etc etc. I just planned around it. Keeping busy really helped me I found. It was a distraction for my brain and I didn't spend every waking hour thinking about treatment.
Get someone to take you to the AC definitely but I easily managed to drive there and back with the taxol.
Keeping my fingers and toes crossed for you.
All the best.
xoxoxoxoxox
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@Little Duck everyone has given you lots of advice, this is such a wonderful forum and I really can't add much except to say for me , it's been about the planning. Usually when we come down with a bad bout of the flu it hits out of thin air. With chemo, there is the little luxury of pre-planning and organisation. Plan for the worst and hope for the best ..... get as much done beforehand. Meals, housework, everything you need sorted. I call it my chemo-holiday to to try and stay positive. Book in something for yourself to look forward to before your next infusion.
Take care xxxxx1 -
Thanks again for all the advice and suggestions. My first treatment is 30th April so I'll let you know how I go. I had to get really cross with the surgeon yesterday. They had made an appointment to review my MRI plus put in a titanium clip so they can monitor the location once chemo starts, but they had forgotten to book me in for the clip. Firstly they tried telling me I was supposed to get it done on Monday, then that I needed to come back next Monday. We'd already waited over an hour for the 5 minute MRI discussion, I had study notes with me for an exam today plus I have three assignments due in the next week and they were telling me I had to come back again next Monday because they had forgotten to arrange something? I lost it and said I couldn't keep spending hours sitting around in this waiting room and they needed to fix it. I'm normally pretty mild-mannered and go with the flow particularly with doctors, but this was ridiculous. Anyway they found someone to do it so at least I can have one whole appointment-free week before chemo starts.2
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Good on you! The squeaky wheel gets the oil and sometimes that's just how it's got to be. Good luck with your assignments. You go girl!1
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Similar experience yesterday at hospital my appointment was canceled but they didn't let me know. Luckily breast care nurse managed to get me in to see the registra for results. It's a long story i tried to post it as a discussion but got problem with computer at mo need to get on to tech support to sort it. I can post on others discussion for some reason. Sorry to rant about my problems. Good luck with your chemo like others have said everyone is different with side effects. Take care2
