Another quick question - is wine ok the night before chemo?!
Quick answer pleease!!! Xxxxx
Hi all,
Welcome to all new AAAs. Christine I’m also on 3xFec followed by 3 x tax.
Well done DiggyWiggy and Wendy for getting throgh day one. I hope you’re feeling better today Diggy. Linda I’m glad you’re feeling well. You and Amber seem to be doing really well.
Pauline I’m so sorry to hear about your dad. I hope he feels better and can return home soon. You and your family are really going through the mill at the moment aren’t you? Life seems so unfair at times! With regard to your question about coldsores, I asked my bcnurse about those as I suffer with them when I am run down. She said the hospital would probably prescribe a tablet form of zovirax to clear them. I have to ring a special helpline number for any sign of infection.
Is anyone here having treatment at Tameside or Christie’s?
Mel xx
Fec-t Cycle 1 Day 10
Well girls Iam a bit scared to say this but I thnk I’ve turned the corner and feel completely myself again, had a great day apart from low immunity and trying to stay away from the obvious places, no chemo fog, have all the s/e gone? Hope so, will see what tomorrow says for sure.
Wendy - well done today you ticked thbox first box
Kate - glad your portacath fitting went ok
Katie - good luck for tomorrow
Christine - nor so far away then, small world. Would be happy to meet half way sometime for a coffee n compare notes if you like
wishing you all a good nights sleep and minimal s/e
hugs xxx
Did I say that chemo brain has gone!!!
Just would like to say a big thank you to everyone on here for all the support, it’s invaluable. I felt quite abandoned by my BC nurse, she was great initially but that didn’t last long a phone call now and again or email would be great. Also I did expect at least a call from my onc nurse just to see how I was getting on with s/e, was I expecting too much.
Anyway I have learned so much from this site and the information is truly hands on, you’re a great bunch of girls, before we know it we will be looking back on this a year on
big hugs xxxxxx
So glad you are feeling so much better, Amber - well done! 
Wendy x
Kate - yes, they sprayed the port area with a numbing spray before the needle went in. I honestly felt nothing.
Carrot Juice - good luck tomorrow, and as far as I’m concerned wine is good any time!
Amber - snap! I have seen my BC nurse once, on the day I was diagnosed in December. I have never had an email and just 2 phone calls since. I have rung her with queries a few times and never got to speak to her as she is always in meetings or at clinic. I have given up on her totally.
Chemo brain? I spent a good 10 minutes searching the freezer … for my kitchen antiseptic wipes!!!
Lots of hugs to you all, Linda xxx
Hi all,
Well it didn’t quite go to plan today! a few minutes into my first infusion of Tax, I felt a funny flush, felt my face swell up and felt as though someone was pulling my earlobes downwards then I saw flashing lights and was struggling to breathe. Just as the nurse came in to ask if I wanted a drink, she took one look at me and next thing, she called the other nurses and i was being pumped with extra saline, BP being monitored, Piriton and oxygen!!! I don’t really get allergies but OMG I was terrified. After about 10 minutes, I came to and could feel my purple face going down. After 30 mins of saline, attempt no 2 on a slower infusion worked and I felt ok. Carboplatin went in ok without any problems. Hope that doesn’t happen again! Bit of tiredness tonight, hardly surprising given the time I got up so going to go up and see if I can sleep better tonight. Feel ok apart from dry mouth again. Hope all you lovely girls are coping ok, night night xxxxxx
I’m with you Lola65… Wine is the answer to any question anytime in this house!
Mamakaz, hope you don’t have the same reaction next time and they remember to go slower!
good luck tomorrow Katie.
I know how you feel Paulne, my OH’s mum has terminal pancreatic cancer currently but his Dad also died of lung and bone cancer in 2005 and his brother of cancer everywhere that they never worked out where it started in 2000…so he really is going through it currently with me! He has been a star so far but I do worry that he isn’t thinking about himself ometmes
Night to all
Kate
xx
Hi Ladies,
well today seems to have been s/e free apart from a few dizzy spells, but that I can cope with.
LOLA- I had a giggle to myself when I read about your freezer “hunt”
AMBER - that sounds like a great idea, im regularly in Macduff visiting family so we could def arrange a meet up.
MAMAKAZ - you have had an ordeal today, you must have been terrified, hope you are feeling better now and gt a good nights sleep!
PAULINE - sending hugs hoping that you and your family have a good support network behind you to help you the tough times ahead x
To all angels hope we get a peaceful nights sleep and wake refreshed ready to take on tomorrow and what ever its got instore for us all, night night
Christine x
Morning
Just wanted to say how I impressed I was with Mamakaz yesterday. I went into the same unit just after she’d had her Tax reaction and she was amazingly calm and composed - especially when they re-tried the infusion. I was of course anxious that something similar would happen but, fortunately, I was ok.
Hope everyone had a better night’s sleep than I did - still wired with steroids?? At least I can lie in today as it’s my first appointment-free day this week. No real chemo SEs yet either except sandpaper mouth.
Have a good day
Wendy x
Hi
I was referred by my consultant on 3 April to Christies hosptial for chemotherapy and then readiotherapy. I have not heard anything from them so phoned today to check I am in the system and they say they are waiting for an appointment, they tried to put me through to the oncologists secretary, but no reply. I know it has not been long, but I am getting really stressed and want to know what and when it is going to happen, does anyone know roughly how long it takes to start chemo after referral? Has anyone experience of Christies? I am concerned that I will get my consultation appointment quickly followed by the first chemo appointment and this will not give me enough time to sort out wig’s etc. I had my ops at Wythenshawe and the Breast Care nurses there were fantastic, I am concerned that I will not get that level of support at Christies.
Many thanks for any advice.
Fiona
Mamakaz (Karen) - that was some frightening experience for you. I hope you managed a good night’s sleep afterwards and are feeling fighting fit today.
Love and hugs to all of you with other problems to face, life can be so cruel. xxxxx
Fiona - I had my last minor surgery (cavity shave for wider margin) on Feb 22nd and only started chemo on April 8th!!! I was dx in December. The National guidelines say chemo should start within 6 weeks of last surgery.
TCH cycle 1 Day 4
So far so good again, but don’t want to tempt fate. No real side effects, very mild reflux/heartburn last night at bedtime. Gaviscon cleared it quickly. No more diarrohea since yesterday morning and back to normal today. No nausea at all. This is my second day without steroids and no reactions. I feel well apart from a dry mouth, but taste buds still there. Sleeping well. Can’t decide whether to go to supermarket with OH as day 4 is the start date for deteriorating bloods on Tax although nadir period not until day 7.
Hope everyone has a good day, Linda xxxxxxxxxxx
FEC T, Cycle 1 day + 4
Morning lovely ladies. well the sleep fairies abandoned me last night, got a couple of hours and feel pretty rotten today. (like i have been hit with a steamroller!) Just back from docs and got some stuff for my mouth and some sleeping tabs so hopefully get a sleep tonight. Also feel cold like symptoms - caugh, runny nose etc but thnk that is a normal s/e! No more steroids for me from today but gp has put my file on NHS 24 so that they react quickly should I need them over the weekend (hopefully not!)
Thanks for all your kind wishes for my dad, he will be in over the weekend but hopes to get out on monday.
Duvet day for me today now
Mamakaz - you must have got a real fright, sounds awful. Hope you are ok now
Amber - glad you are feeling a bit better and ditto your comments about BC nurses, I haven’t heard a peep from mine since about a week before my 2nd Op!
Big hugs all
Pauline xx
Hello Angels,
FEC t, Cycle 1, Day 4.
Pauline hardly any sleep for me too so got up early to take steroids at seven so I can have the last two at 2pm after reading Linda’s post. Take the last two tomorrow morning.
Linda am having BC nurse coming round to go through tablets with me. Like you have had the acid for which I take Peptac Aniseed which works lovely. I have to take sennakot for constipation at night and get really warm itchy heels at night too. Nothing else as yet. Have read that after the first week things start can to get back to some sort of normality although I know hair loss is on the cards. Anyone know if thats the case.
Mamakaz, sooooo brave.
Welcome Yorkshiregirl hope you get all the support you need from hospital and BC nurses and I have found this forum is full of support and lovley people. xxx
Blimey Primrose, a BC nurse calling round? Mine never even answers her phone!
I have noticed some people are having to go to see their GP and wonder how safe this is. Lots of germs in surgeries. My GP told me just to ring her if I need anything. If she can prescribe without seeing me she will do. if not she said she will do a home visit. That’s another unexpected surprise! I am also well serviced by the District Nurses. They have been to sort out my portacath dressings and stitches, and will be doing my bloods before each chemo, so no extra hospital visits. Brilliant!
Fec-t cycle 1, day 2
Good night’s sleep. Dry mouth but drinking lots of water. Still feeling sick and very weepy. Cry at every kind word or deed from OH! Managed to walk around garden today, not up to much else. But hey it will get better. Encouraged by amber D’s post! Thanks.
So sorry for your awful experience mamakaz. Well done for getting through it.
Hope your dad home soon Pauline and hugs to you and all your family x
I will def ask for more anti sickness for next cycle. Need to contact the wig lady and also get some practical help with scarves. Hadn’t thought about not visiting go surgery due to germs!
OH just gone for a lie down - think it’s really taking it out of him too and I feel so selfish! Tomorrow will be another day - onwards and upwards!
Wishing all you angels a peaceful night and a really good weekend. Diggywiggy x
PS anyone in Somerset or Dorset?
Hi Lovely AAA’s.
I do hope you are all getting through ok. I read your posts daily 
I signed up to your lovely club in the early days - thinking I would have my chemo with you all in April. To cut a long long story short, I had my MX with immediate recon on the 18th March. I’ve not healed at all well and have an infection that is raw and covers 90% of my breast. Its hard to stay possitive when I thought this would be the easy part of the whole journey!
Anyway some advice if possible. … … … … when I had the pathology report from my MX 2 weeks ago I was told 14mm grade1 ER+ HER2- second tumor 7mm grade2 (hormone receptors are awaited).
I was then told that at this point chemo would only increase my survival rate by1% so it may not be offered after all - I have to wait until the 9th May to see the oncologists. 1% seems a really low increase to gain by putting yourself through the ups and downs of chemo.
BUT i read in a recent letter to my doctor that Lymphovascular space invasion (LVSI) was preswent around both tumours (my consultant didn’t discuss this part with me!!!). I’ve googled it and it seems like a bad thing - in the sense that the cancer cells have got into the blood stream - so how can my survial rate only be increased by 1% by having chemo???
I have been driving myself insane over this for the last week and it is so long away until I see the oncologists - can anybody advise if they were given a low % increase and has anyone else had LVSI explained to them.
Thank you in advance for any replies x x x
Fec-T Cycle 1. Day 11
Good day again, the s/e seem to have gone fingers crossed
_ Wendy - thanks for the encouragement_
Mamakaz - what a nightmare day you had, hope you’re ok now and s/e not too bad
Pauline - I have a bit of a cough too and developed a sore throat today, difficult sometimes to tell what’s s/e and what’s normal. Hope you feel better after your duvet day
Linda - You’re doing really well hope it continues
Diggy - Take all your anti sickness meds even though you don’t feel sick at the time and drink loads of fluids, hopefully you’ll better soon
Meemoo - sorry can’t help on the % side but hope you get some positive info soon
Fiona - hope you get things sorted out soon, the waiting is the hardest part
Christine - just let me know when you want to meet and we can sort out something
To everyone else, hope s/e are minimal, have a lovely evening
ps forgot to say oh bought me one of those cocoon chair swings for the garden, so bring on the sunny days
xxxxx
Hi all,
Chin up Diggywiggy, you’ll get through this. Don’t wait until next chemo before asking for sickness meds. My bcnurse and oncologist both said there are different types so if one doesn’t work ask for something else. It sounds like I’ve been very fortunate too with my care team. My bc nurse has been fantastic and is available to talk to whenever I need her.
Fiona I’m under Christie’s for my treatment, though the oncologist and chemo nurse will be overseeing my first 3 infusions at Tameside, where I had my op. It took 3 weeks from my referral to seeing a consultant, though my bcnurse did have to chase up my appointment. My chemo should have started a week after my oncology appointment, but had to be deferred a week because my heart check hadn’t been done in time. That will make it 5 weeks from referral to treatment. At Christie’s you will have blood tests and consultations the day before your chemo. I booked an appointment at the wig room for that day and was sorted out in no time. I hope that helps.
Meemo it sounds like you need a longer conversation with a specialist about your condition. Is your breast care nurse available to talk to?
Amber/Mel - thanks.
My BCN is soooooo scary even my surgeon gets told off by her - my friend said she hates coming to the appointment because she always feels like she is getting told off when she asks a question on my behalf.
Guess I’m just in limbo land for a bit longer (I got dx early feb - seems so long ago just want to get on with things and know what I’m actually facing)
Does anybody elso know what lymphovascular space invasion means in reality???