Hi ladies,
I don’t normally buy magazine’s, but October’s edition of Good Housekeeping caught my eye today.
There is a very good article on Survivors Guide to Breast Cancer worth reading. 4 woman’s experiences through treatment. And info on future treatments.
Vx
Well after bracing myself to go up and get my port fitted later this afternoon ahead of cycle 1 tomo, I’m now heading to the hospital now for a check up first. I’ve woke up this morning with a rash all around the nipple area of my surgery breast ?
Really hoping this is not a setback, what a week.
Dear All - I’ve been a bit quiet lately (for once) but I’ve been reading your posts with interest and with you all in spirit! I’m bracing myself for FEC Cycle 2 tomorrow - saw the oncologist and nurse yesterday and it was confirmed that the Domperidone was the most likely cause of the hyponatraemia and oedema that sent me into hospital, and as I will never be prescribed it again, there should not be a repeat performance. They are going to give me a different anti-sickness drug called Akynzeo which I’ve never heard of, but I hope it works! We’re also keeping our fingers crossed the armpit infection does not return again after 2 weeks of antibiotics, but the oncologist says he will refer me to a dermatologist if it does, which is reassuring. At the end of FEC Cycle 1 I have few side effects, apart from occasional dry mouth, fuzziness in the head and shakiness (oncologist mystified about the latter but could be side effects of the antibiotics) and the steroid (Dextamethazone) is still making me hyperactive and ravenously hungry. The house has not been so clean in ages (still it is all good exercise and means I am on top of things)! The downside is that like others also taking steroids I haven’t been sleeping well. The temperature plummeted here in Streetly (postally Sutton Coldfield, administratively Walsall in the West Midlands incase you are wondering where that is!) on Monday night which did not help either, as the sleeping caps I’ve got are very light and are not anything like warm enough - I have now ordered some warmer ones in anticipation of how cold it’s going to get as we move forward into the winter! I didn’t appreciate what a fantastic job my natural hair does in terms of regulating the temperature of my head until I lost it. I took the last steroid today and will take the last antibiotics tomorrow, and they are not going to prescribe these drugs again, so hopefully I will now calm down a bit and sleep better from now on (unless the nausea and other effects stop me). I got a great ego boost yesterday when I popped into the local Co-op wearing my wig. The lady in the shop asked if I’d had my hair done and commented that I had lost weight, and I confessed that it was a wig, the reasons why I was wearing it and had lost weight. She was a bit taken aback, but I said, no, I don’t mind people knowing, and I thanked her very much for the compliment and for confirming that she couldn’t tell. We have been preparing for FEC Cycle 2 by buying a wide selection of food from the supermarket this morning, which hopefully I will be able to eat some of even if I am a bit sick. I have also been taking some time out to order more turbans, and a selection of skin, nail and mouth care products from Live Better With, so I will be as prepared as I can be for any potential problems arising from the FEC and T cycles to come. I don’t know when I’ll post again as it depends on how I am, but good luck to everyone else who has had their 2nd cycle or is about to, and I hope those who have been feeling rotten will feel better soon.
I hope I’m posting this in the right way! I’m Anna and I started EC chemo today, following successful surgery to remove a grade 3 tumour. I had my treatment first thing and felt fine until after lunch when my nausea and vomiting kicked in. I struggled through until I could take my next dose of ondansetron, which settled things down. I’ve slowly nibbled a dry cracker and now I feel sick again ? I do hope I feel better in the morning because I really don’t deal well with nausea!!!
Hi Auntienanna
Welcome to the forum. Your experience sounds exactly like mine! Had first EC, and within 2.5 hours the nausea kicked in and I was confined to the sofa. I was eventually sick and started to feel a bit better. The next 6 days I suffered with the nausea feelings but I was only actually sick that one time. Day 7 I felt like a new person and back to my normal self.
Please don’t suffer in silence though. I phoned the ward on the evening as the anti sickness meds were not that great (Ondansetron) and I phoned again the Saturday. Borh messages were passed to the chemo nurses as one phoned first thing Monday morning and said she would prescribe a stronger alternative for my next session. It really is worth asking.
Hope you feel better soon. The only thing that made me feel better was eating. It didnt matter what, just anything. At this rate I’ll be he size of a house by round 6!
Sarah x
Finally back home after a long day.
Port fitted, just uncomfortable now more than anything.
But my rash has turned out to be a little infection. My oncologist was called in and is convinced it’s nothing serious, so antibiotics prescribed and we are still full steam ahead for starting chemo tomo. Just got to keep an eye on it.
Wish me luck folks!
Hello Ladies,
i am new here and think i will be starting soon, just waiting for an appointment, had 2 ops cancer was found in 1 node the other results still waiting for, not got oncolegy appointment yet thought but told i will very soon.
good luck everyone where ever you are in your tx xxx
Welcome to all new participants on the thread -
it is great to see how you are all supporting each other and sharing each others experiences. It has turned out to be a good and lively thread, which is great to see!
assaritti45 - I’ll be starting the October 2016 chemo starters thread soon. Considering you have not seen your oncologist yet, it may well be that you start with your chemo around then, so you may also wish to join that thread when it is there.
OldDawn63 - I was given Akynzeo an hour before each treatment, with another anti sicknes drug to use for the first 7 days. It certainly did the trick for me - I hope it will do, for you, too.
Auntienanna - the advice offered by Sarah04 is very right. Should anti sickness meds not work it is always very worth while to call your breast care nurse or chemo unit, to let them know, so they can address this. No one should suffer ongoing sickness. The first cycle is always a bit of a trial run, as we all are likely to react differently to the treatment, but the medical team is always happy to make adjustments to our accompanying medication, to make things as easy as possible for us.
Hugs to all
Sue xx
Hi all,
So I had my first cycle of FEC yesterday, and cold capped too.
The cold cap was just dreadful for the first 15-20 mins, I’ve honestly never experienced anything like that. But I just kept taking slow deep breathes and imagined nice things and it did then more bearable. It was difficult when 5 mins into it more husband told me to quit as this was just too much. It does unfortunately add time on to your day too, and I had ice on my head when we finished. Now I’ve just got to pray that it works for me, although I am already dreading it again in 3 weeks.
The chemo itself was fine as it was a huge difference to have treatment administered through my port.
However, I completely came down to earth with a bang after being at home about an hour. Bless my husband, he had just started preparing dinner which I was so looking forward to - and it was then as if someone just flicked a switch.
Straight to bed with the most awful nausea, and then about another hour after, I had really bad diarrhoea (apologies if TMI). Both of these have kept on till about 7am this morning so I’ve barely slept a wink. It was truly the worst night of my life from a sickness aspect.
Took my steroids etc this morning and managed half a slice of toast and I’ve just finished half a little yoghurt. Right now, feeling a bit rotten but certainly not how it was. I have my mum popping down to keep an eye on me today so I’m hoping to just not be sick/diarrhoea and catch up on sleep.
Good luck to everyone else starting today and next week 
Steph
Thanks to Sue H-S, Madmac22 and everyone else for their good wishes and support. I am pleased to report that following FEC 2 yesterday, I have had no nausea at all, the only side effects have been a temporary slight fuzzy feeling around the face (nurse said this is a normal reaction from the C), which had subsided by this morning. So for me the Akynzeo has been very effective at controlling nausea and sickness, so I would definitely recommend asking for it if nothing else works for you. I have also been drinking loads of water and barley water since the day before the treatment as advised by the nurse, to reduce the risk of UTI and flush as much of the nasties out of my system as possible, and I think this has also helped to reduce the effects. They have also put me back on the steroids (just for *3 days), which I didn’t expect, but because it is only for 3 days and could also be helping control the nausea I am not too bothered. I hope that everyone else who like me has had complications with their first treatment is also now back on track, and that their second treatments are going as well as mine (so far, though I shouldn’t really tempt fate/ speak too soon…).
Hi everyone
Just to say well done on those who have got through round one of chemo.
Steph03 don’t be afraid to ask for different meds as OldDawn advised. I phoned up the evening after chemo as felt just like you and they said they’d change the meds next time. They have prescribed Emend for the next round. Apparently it’s the “gold standard” or so I’m told!
I have a huge ulcer that appeared yesterday, preventing me from eating much. Again the nurses have been great and prescribed Gelclair. It’s my own fault for letting it get so big. It started off really small so I just left it and now it’s erupted. Even the nurse said it’s a beauty! So make sure you are religious with oral hygiene.
Still no shedding from cold cap although I’m only day 15 post first one so expecting some any day now. I have orders a wig just in case and “Veronica” will be arriving shortly!!
Love to all
Sarah x
Thanks Sarah, I will definitely mention it to them. I’m doing a little better this afternoon as have managed to eat about 3/4 of a roll with some sliced banana and so far so good.
Can I ask a question please on the cold cap - is it correct that you can’t style your hair at all - as in hairdryer etc? My natural hair unstyled and left to dry natural is a total mess (I have wavy kinky hair) which now has me questioning doing the cold cap, xx
Yes I did take two paracetamol before hand, and still felt awful. I know now what to expect but it really is a thought.
I’m going up to see about a wig next week as back up, but there is now a large part of me thinking if my own natural hair can’t be styled to still look like me, this cold cap might not be worth it. Definitely a decision to be made before cycle 2.
X
Hi I start my first round of chemo this Thursday the 29th September. Quite scared of the side effects that you are talking about, I had nievely not thought of them. I have decided to ‘brave the shave’ for Macmillan to make some money for charity out of me losing my hair. Also it’s my way of being positive and putting a brave face on this for my two kids who are 9 & 5.
Anyone else have younger children? Anyone else start this week?
Julie
Hi Julie
I have my 2nd round the same day as your first. I have a 6 year old daughter who has coped very well so far.
Main side effect for me was the feeling of nausea. It lasted from 2 hours after chemo when I was actually sick until about day 6. I was able to get out and about though and it wasn’t as bad as some others have experienced. Oh and last week I ended up with a huge ulcer so be vigilant with oral hygiene ! I phoned the chemo ward after the first day aboit the nausea and they were very good. They are changing my anti sickness meds for this round. Please don’t be afraid to let them know if you have any side effects as they can change your meds etc
Well done on the brave the shave! I am cold capping (for now) but if it starts to come out drastically then I may well join you!
Sending hugs for Thurs. I’ll be thinking of you
Sarah x
Morning September Ladies, hope you are all well and coping with whatever SEs are being sent to try you. I ended up in A&E again on Sunday to get some worrying new SEs checked (puffy/swollen feet and ankles, slightly greenish wee and mysterious stomach pain) on advice of nurse, but fortunately nothing wrong, no UTI, blood normal apart from abnormal high white blood cell count (Neulasta working!). Dark wee down to not quite drinking enough, stomach pain probably due to excess acid, no explanation for puffy feet but was assured is temporary and has now gone. They did an X ray to check for evidence of perforation of stomach, which can apparently be caused by steroid, but fortunately found no evidence of that. I felt very guilty for dragging my husband to the hospital and for wasting the hospital’s time when they had so many real emergencies to deal with, but was assured by the doctor I saw that I had done the right thing. But the lesson I have taken from this is not to worry unduly about unexpected SEs as the chances are they are nothing serious and they will pass. Anyone else plagued by puffy feet - if you check out Neulasta SEs online you will realise this is the most likely cause, it is temporary and is nothing to worry about. It will soon pass if you apply the usual remedies of keep moving, walk around as much as you can, wiggle your feet, don’t stand for long periods and put your feet high up on a stool when sitting down and on pillows in bed. All the best, virtual hugs to all.
Morning September ladies, I hope you are all feeling well. I’m sorry to hear you weren’t well at the weekend, Dawn but I’m glad it wasn’t anything more serious.
How do people count their chemo days? i had my first dose on Wednesday last week so am I on day 5 or 6? Whichever day I’m on I am feeling a lot better than I did for the first couple of days. Wearing Sea Bands for a few days worked wonders for the nausea and I’m glad that eating fruit helps with it too because I’ve just lost 3 stones and don’t want to put it all back on again by Christmas! The past few days have been experimenting with what adjustments I need to make for a happy Anna and learning to cope with feeling different and what I can manage and when I need to slow down and take extra care of myself.
If this is how it is going to be then I think I will be able to manage getting through this treatment. Please don’t tell me the SEs get accumilatively worse - I know fatigue does but if the others don’t I will feel better prepared to cope with them. I’m glad I don’t start uni until Monday because I’ve had this time to work out what adjustments they will need to put into place to make sure I don’t fall by the wayside. Apart from being able to eat/drink in lectures and classes and be able to go to the loo at will I don’t think there is much else they can do - unless one of the tutors wants to write my assignments for me :smileyvery-happy:
I know that hair doesn’t fall out straight away but I think mine is dying. I keep getting tension type headaches on various parts of my head - migraine strips are marvellous for these - and my head is itchy and tender in a healing-scab kind of itch. I have very fine, soft hair so I wouldn’t be surprised if it went earlier rather than later. I’m going for my wig fitting tomorrow afternoon, with a friend, which should be fun and I have ordered a fun rainbow wig as well. I’m resigned to hair loss so I’m going to have some fun with it. This isn’t to say there won’t be a few shrieks and/or tears when the first clumps come out, I am only a human who loves hair!
Anyway, take care of yourselves ladies and let’s get this :heart:
Hi Sarah, so nice to hear from you and for you to comment on how you feel. I think I felt that doing the brave to shave meant I was in control of that bit and as my hair is long I can donate the ponytail and so far have raised over £500 which keeps me positive. Its nice to hear that you have managed to keep getting out and about. I walk a lot with my dogs and am going to start yoga. Big hugs to you too xx
Rosie - sorry to hear you have been unwell and hope you are feeling better soon - make sure they give you something more effective next time. Anna - SeeSee is right about the wigs, they can’t fit one properly if you still have too much hair because it could end up being too loose. My hair was falling out big time by the time I got to the hairdresser but I got her to clip what was left short so she could fit the wig. I didn’t look as bad as I feared with clipped hair, so maybe this is an option for you if you know anyone with hair clippers who could do it for you to save the expense of getting the hairdresser to do it. It’s just a suggestion, I know it is difficult to know what to do for the best. I hope you find a solution that works for you, particularly as you are planning to continue with your studies during treatment, which will not be easy. Anything you can do to make yourself look and feel better will help you on your way, so if there is a Looking Good Feeling Better course in your area (they are free) you could give that a try too. All the best.
Hi Antienanna
Maybe you should check with your local wig suppliers, when I purchased mine I still had my long thick hair. But they told me I could come back at any time for a shorter cut or shave free of charge. They also trimmed my wig to suit once my hair was cut to a short piXie style. All free of charge.
Vxx