After mx on 9 Nov I had my appointment with oncologist today. He said I am border line whether to have chemo or not. His assistant doc kind of said if you don’t want it you don’t have to. But after going thru the FEC info and side effects (I have vomiting phobia!!) which would take 18 weeks the onco came in and said you could have AC for 9 weeks but a bit more intense i.e. definite hair loss and prob more sicky I got scared. He says you don’t HAVE to have chemo but if I was you I would do the 9 weeks of AC!!
Please, can anyone here give me info on AC chemo and how they felt?? I really have to decide whether to (a) no chemo; or (b) which one??
This is my second time - first in 1997 = lumptectomy, rads and tamoxifen and onco said if they knew then what they know now they would’ve given me chemo so I’m thinking I should go down that route?
I am generally fit and healthy and positive - can I cope??
Don’t panic! I have a hatred of being sick as well - managed to go for 20 years without throwing up once! It was a dodgy prawn sandwich that did for me a few years ago - not chemo.
The antisickness meds they give you these days are really good - I went through 3 x FEC and 3x Taxotere and wasn’t sick once.
If it’s just that from holding you back, explain your fears to your team and ask for Emend - it’s not always given as standard, but it’s one of the best antisickness meds going.
Good luck whatever you decide.
Dx
PS I also live alone, coped fine and managed to keep working for two weeks out of three each cycle. x
Yes I have a phobia about vomiting too…whether it’s me or someone else. Get very panicky (which is sounding really stupid to me as I type this but it’s true). I can happily report that during my 6 months of chemo I wasn’t sick once and the only time I really felt bad was when I forgot that I wasn’t supposed to eat pâté and had some! The anti sickness mess work fine and I also seem able to have anaesthetics without any trouble too ( my first conversation when I come round from ops is what can I have to eat…lol). Try not to be afraid and you’re not alone with your fears bit the meds these days are pretty effective.
I also have a vomiting phobia and get panic attacks if I feel sick. I had AC and had no choice as to whether or not to have chemo. But if I had - I would have gone for it as I wanted to throw everything at it.
I thought chemo would be 4 months of continually throwing up and got myself into a right state and even bought lots of sick buckets! A few days before I started I saw my breast care nurse who promised me I wouldn’t be sick. What? How? That’s what chemo does to you, isn’t it…?! I explained how scared I was that if I was violently ill the first time that I didn’t think I would be able to drag myself back for the following treatments. She reassured me again that that wouldn’t be the case. Anyway, AC1 was fine! I felt a bit queasy for a few days - like a hangover, but not enough to stop me from eating and never to the point where I thought I was going to be sick. From AC2 they gave me a drug called Emend which really helped with the queasiness. It’s expensive, and they don’t tend to give it to people from the start - it seems as though they like to see if you can cope without it. But if you’re really worried, try stomping your feet a bit and demanding Emend on account of your phobia.
The majority of women put weight on during breast cancer treatment because we’re not sick, we just crave comfort food etc!
My chemo nurse said the likelihood of being sick can also depend on how “sicky” you are in general - travel sick, sick after anaesthetic etc. I don’t know how true that is - but if you do get sick easily, another reason to beg for Emend from the start!
My side effects were so few I asked them to up my dosage (which they did - but only slightly) and after I finished I asked for more rounds (which they refused!).
Oh, and by the way - I managed to keep a full head of hair on 4xAC and 4xTAX by using the cold cap.
Hiya, i am travel sick and anaesthetic sick and morning sickness sick and any other kind of sick, but i was only sick 3 times during my 3fec/3tax, which was once on each fec cycle when i got home from the infusion. I think it was a combo of feeling sick and all the emotion. I felt naseous a lot on fec but it was that funny general sicky feeling rather than actually vomity feeling sick.
If it is just the vomiting affecting your decision maybe you could discuss a less sicky chemo, like some taxanes, and/or get an urgent referral to a psychiatrist to line up cognitive behavioural therapy to get you through the vomit phobia. I think its very reasonable to ask for this if its standing in the way of important treatment which your oncologist has said he thinks you should have.
I would go for the chemo personally, I think it is definitely the best way to minimise it coming back. I was diagnosed in November 2011 and had 4 x AC and 4 x Paclitaxol at 2 week intervals followed by Herceptin which I am just coming to the end of 12 months on.
Being sick was my thing also. I wasn’t bothered about hair loss at all or the tiredness but the thought of feeling sick really stressed me. I mentioned this to my onc and she said she would guarantee I wouldn’t feel or be sick and she did.
I had Emend before and after the chemo along with 3 other different anti-sickness which I took religiously, 2 types (which I can’t remember the name of) for 5 days after and then Domperidone continuously 3 times a day for the whole 4 months of chemo.
My onc was of the view that because I would young, fit and healthly I could cope with the regime which she said was probably the harshest.
Looking back it wasn’t too bad, I didn’t feel sick once, I wasn’t working but I still managed to go out and about now and again, mainly in the second week and it got it over and done with in 4 months.
I decided against the cold cap because the nurses advised that it gives the chemo chance to go round your whole body and that my hair would grow back better and more even without it. And it has.
As well as the support you are receiving here it might help to talk this through with a trained member of staff on the BCC helpline. Here you can share your concerns with somone who will offer you a listening ear as well as support and information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 9 to 2pm.
Thank you all for your comments/experiences - I am SO glad I found this forum - a mine of information and support! I know, I feel so pathetic having this phobia thing - goes back to childhood and a really bad bout of sickness - but I can’t help it! I am leaning towards having the chemo and doing the 9 weeks of intensive AC - not too worried about hair loss but still scared about the vomiting - the Emends med sounds good so I’ll definitely ask about that. I can cope with the nausea - hangover feeling - plenty of practice on that!!
So if anyone else has had the 9 weeks of AC I would love to hear your experiences.
Thanks again and thanks Sam for putting my post in the right place - I was in panic mode last night and had a couple of wines - got lost on the forum!
For what it is worth I think the 9 weeks of intensive is better, get it over and done with. I found the Paclitaxol worse than the AC, because I was having the high dose I really suffered with numb fingers and toes which 9 months later have only just got back to normal. At the time I would quite happily have had more AC!!!
I didn’t have to shout for Emend as my treatment has been done privately, but I would definitely if I was you - it is the best anti-sickness medicine, you have 1 tablet an hour before, and one tablet on day 2 and one on day 3. According to one of my nurses it stops sickness for 9 days. Don’t know how true that is though.
Hello - just to let you know - I decided to go for the 9 week AC option of chemo - eek!! I rang the onc’s secretary yesterday to let them know so I guess now they will get the ball rolling with all the tests I need to have before the chemo starts I guess in a couple of weeks!
I am still VERY worried about the vomiting but will definitely ask (demand!) the Emend medicine.
I’ll post when I know more but thanks for your support and information - wish me luck!
Wishing you good luck - I think you have made the right decision.
Remember, tell them about your being sick fear and shout for the Emend, its not them having the chemo so don’t let them push you around. I think if you do this you will be fine.
Hurdle 1 is making the decision. Well done. And as SamLee says, tell them about your fears and just how strong they are and ask for Emend. Don’t feel silly about it - it is a common fear.
Take it easy for a few days after your first session and keep a diary of any SEs. They should be similar each round and it’s good to know what to expect from a planning point of view (eg maybe meeting a friend for lunch).