I have just got the Gaviscon Advance as normal one didn't do anything. My team suggested Rinatadine (Zantac?) but they were sold out up here (manufacturing problems!!) or the other one beginning with O? I just didn't want to take any more pills and when I used them years ago they gave me wierd taste too. The team said they were pretty well tolerated by most people...so will see how I get on with my Gaviscon Advance for now..
Wow, sorry, that was a bit of a chemo head ramble....
Hope that helps!!!
I have also got dreadful heartburn csn you suggest anything other than ginger as I'm not keen and milk isnt working or the bottle of gaviscon I have taken 😬 I didnt want to moan to the team so soon as I did have it the week before, think it was the stress and anxiety but its driving me nuts xxxx KC
Lol it’s the little pleasures xx
Im hoping to see my grandson in his first nativity - didn’t see either of the older ones as I was at school. It’s the silver linings lol
On the plus side, my dog is extra happy as I am at home everyday and spends half his time lying across my legs!! He is a Portugese Water Dog and not light but he is cosy....
Helen, I def had less crash after 2nd chemo and a bit more mobile Day 8.. i reacted awful to the steroids but maybe 2nd time round body adjusting to them. Still feel not great and Day 3 I cried all day. Glad you got a day out! I am keeping my fingers crossed I can go Christmas shopping next week (with many sitting breaks!!).
KC, Lisa and Chris, I felt awful till about Day 10 1st time, not as bad 2nd time but terrible heartburn. My head is fuzzy but am more mobile than I was 1st time.
I was describing it to my husband as having worse hangover ever, everyday along with weak body, heartburn and chalky mouth, ha ha
If you can manage it, walk around, get outside, even if it's just 10 minutes.
I am hating water right now and am forcing myself to drink. Taste buds not back to normal yet but it did come back last time.
I feel for you Lisa, every 2 weeks, how long is that for? Shorter time overall? Hopefully you will have at least some 'normal' time. I don't think I ever felt normal, fatigue seemed to be there all the time...although I did enjoy food again!! I am just really bad at being ill, ha ha
Lets just keep counting down the cycles. I am crossing them off my wall
Sounds like you guys (Lisa and KC) are having a similar experience to me...it feels so hopeless at the time. I remember weeping in my bedroom thinking I can't cope with feeling like this for 18 weeks. Luckily it passed, so I am sure it will get better for you both.
I gradually felt better after the crash on days 5-6...so days 7, 8 and 9 were better but still not 100%. I am on Day 13 now- and feel like a normal person again...so things may look up for you quicker than you think both (though I know we aren't all the same).
My daughter's teachers are on strike today, so we went to the Crown Court to watch a murder trial (she is doing Law A level). It is so nice to be able to do things with her instead of me working full time (the silver linings of sick leave!).
I am asking next week about tapering the steroids...it will be interesting to see if it lessens the crash or just delays it! If they let me, then I can be the experimental guinea pig! I am not very good at persuading health professionals to do what I tell them to..
am doing so so had a terrible night last night I don't know how many times I woke up so feel very tired today, but hopefully it will get better. I started my first injections to boost my white blood cells, hoping they work and I don't hVe a massive dip.
Sorry your not feeling so good, hope you pick up soon.
Hi lisa I'm not as good as yesterday very wooshy and didnt sleep, I had a good night first night chemo but last night was dreadful , but then I'm not a great sleeper full stop , I'm losing my taste which I hate everything tastes dull, i have read it's normal at day 5 /7 to feel the way you are doing ,please dont think you're the only one not doing well I'm guessing chris and i will be just the same at day 5/7
After my 3 cycles of EC i then go on to weekly carbo taxel so i know how you feel cant say I'm looking forward to that either, or the needles , just remember your not alone , it's tough and horrid and unfair but we will get through this every cycle is one less to complete.
Thinking of you 💕 KC xxx
Well done KC and Chrisy for getting started and hope you are both still doing ok 💜
I haven’t caught up much over the last few days as I have had a major crash after stopping the steroids and been feeling really awful. Also very miserable and like I don’t know how I’m going to cope. I have to admit I’m one of the few who is finding it worse than I expected.
Now on day 7 and not feeling any better and worried that as mine are every 2 weeks I won’t get any “normality” before the next one ☹️
Brilliantly put Helen
we can do this, we have to do this, and ultimately while we and we alone actually do it- I know that I don’t walk the path to health alone, I have people who love and care about me, every step of the way with me.
Great to hear everyone who has started this week is OK so far, and Debs has got round 2 under her belt. Sorry to hear you have been delayed Flou...but at least you will have an extra week of feeling OK!
Sounds like you are starting to pick up again VIv, which is great!
Vaneysha- you have every right to feel angry...it is rubbish that you, as a 33 year old woman with a young family, has to go through this. On a positive hair note, last week I sat opposite an 82 year old women with a lovely bob after 4 rounds of taxatere and cold capping. So you never know, you may be OK
Conversely a lot of people are saying my hair looks nicer as a buzz cut!!! (says something about the previous hair lol). I may never go back to long hair...….
I keep having friends ask me, 'What does chemo feel like?' , and I find it really hard to explain as it is like nothing I have experienced before. My overwhelming feeling is one of feeling trippy and strange in the first week afterwards.
Steroids are an interesting one...I definitely wasn't eating much at all when I was on the steroids, and I had a crash when I came off them. But I did feel more energetic on them. My friend said you can ask the ONC to taper them a bit if you are reacting to them....that is what I am going to ask for in round 2, in the hope I don't end up in bed on days 4 and 5!
I lean towards oversharing, so I have told most of the people in my life- and I have been overwhelmed by the support and kindness people have given me. I was also diagnosed in June, so I think the longer you live with the diagnosis, the easier it is to tell other people. When you are in hermit mode, and don't want to go near germy human beings, it is great when they text or call you to see if you are OK!
Also you guys on this forum have been absolutely fantastic...we are all a bit battered around the edges, but we are sticking together through this, and I am grateful to you all!
Thanks guys, I definitely have been a little bit of a horror though, but I mean, you don't expect to get slapped with a cancer diagnosis ever, let alone on 33rd birthday with 4 month old baby sitting there!! I'm def still in a denial stage and waiting for people to tell me it's all one huge mistake. I expect every single one of my emotions has been felt by everyone else here one time or another during this, I don't think I'm anything special, but I have a tendency to jump off the deep end emotionally so this has all been quite something for me. Yep, amazing team, also lucky with private health insurance so chemo privately, and they're listening and hearing me, and the fact they've dropped the EC has been a small boost. I'm miserable about a 12 week stretch of chemo every week coming up, still petrified that I'm going to lose my hair, couldn't care less about the rest of it, but am told scalp cap slightly better success with paclitaxel than EC?? I'm still on the pessimistic side and wig is in a cupboard ready for that awful day if it does happen. For anyone who doesn't feel like their team is listening, please keep shouting, it is making all the difference for me.
am sos so today but still got a bad head just can't shake it off,b ur tomorrows another day. You right I keep waiting for something else to happen don't know if it will be when the white blood cells drop. I have been given some injections to boost them have to take from tomorrow. We shall see what happens, just keeping my fingers crossed that I did not have loads of side effects when they do drop.
I agree you have a very supportive team Vaneysha and never think you are being a pain in anyway!! You have to deal with this the best you can and with whatever works for you, especially with having such young children who also depend you.
I have just done round 2 of my EC last week so by the time I do my 4 you should have finished and we can do the PTH together 😊.
Mine is about double yours, 6 x 6.5.( I thought I had hormonal issues as opposed to bc so dismissed all the changes). They are hoping to shrink as much as possible before surgery.
I only had a core biopsy and markers put in the same day I had my initial appt so no other surgery.
Your not a horrid patient Vaneysha , you're an individual with a history and have had a nasty fright with this diagnosis, it is life changing but it looks like you have excellent support with your team, work with them as you are doing , I'm sure they will understand your concerns and support you with you're decisions ,, accurate info is important so you can make choices with them
Good luck 💕 KC xxx
Get a little note book and write questions for when you see onc, found that helped a bit ❤️ Everyone’s chemo treatments are tailored specifically for you and your reduced dose could be someone else’s full dose if any of you get your doses reduced during this 💪💪 there are so many questions that buzz in your head, always best to ask away and not let it get you 🤯🤯 💕💕✨✨Shi xx
I've been a bit of a nightmare when it's come to the chemo, (today they agreed to drop the EC course completely and go straight to weekly paclitaxel). I'm lucky that I have a huge amount of support from my team (it's a real shame you didn't!!) as well as mental health support as the diagnosis knocked me completely for six emotionally (I mean, who wouldn't be) I will definitely be pushing back on the steroids. I'm already on heavy duty sleeping meds and anxiety meds, anti depressants, eating is a problem (not eating enough) it's complicated territory, if they start trying to stimulate my appetite I'm going to lose my shhhhhhh. I know I'm being a horror patient and I'm trying to be as compliant as I can, and they're sooo accommodating, but yeah, steroids is a big one for me. Thanks for your message!!
Hi VivMc 🌼
Yes I’m Her2 +ive too! When did you have your EC? We can compare notes! I had my last biopsy yesterday (a large core biopsy by MRI- they took out around 1.5cm diameter 😖) to determine my future surgery, but still have to have my CT scan. And then I can settle into the chemo cycle routines...
I wonder why I have 3 cycles and you 4 - maybe mine is smaller (2.5cm)?
Hi vaneysha, I’m very very naughty and a bit of a maverick and I don’t recommend you follow my example one bit, but I really didn’t like taking the steroids, they made me hungry, unable to sleep and the depression they caused was awful, it made me feel like stopping treatment altogether.
so, with the ec I took half of what I was supposed to, with docetaxel, for the first one I took the full dose the day before and the morning of chemo with half dose the rest of that day & nothing the day after. The depression continued and I told the chemo nurse who spoke to the onc and he halved my dose, I didn’t tell them I’d already done it but halved it again and was better but not brill. If I’d have had someone to talk to I’d probably have spoken to them, but as I was on my own, ( no breast care nurse etc) feeling as I did, it was the only way I could think of, luckily I was absolutely fine but I wouldn’t recommend you do it, but you can reduce them, but it should be under medical advice & supervision.
ps I understood they are to stop inflammation and any allergic reactions
Shi I wouldn't do anything like that without talking to them first, just like with everything else questions pop into my head all the time and I always forget to ask at appointments. Appetite stimulants is a bit of an issue for me (twenty years of an on off eating disorder) so that's definitely one for asking questions to the right people about 😊
KC57 I have asthma too, have had steroids for that in the past so good to have something to compare to, thanks x
Please speak to your unit about all meds given, you need to take as instructed by them , please do not skip anything without consulting them, the meds are given for a reason. 💕💕✨✨Shi xx
They are only a low dose mine were for 4 days, they help make your anti sickness meds work and give you a bit of an appetite and energy boost I was also told the dose with my chemo helps dampen any allergies etc. A nice pharmacist explained all this when I completed first treatment, I was warned about the iv steroid the day before but not everyone gets that symptom and it was very brief
I have been on larger doses of steroids before as an asthmatic , and the ones given to me were low dose , however talk it through with your nurses they will explain the reasons why
Good luck for December Vaneysha it really wasnt as bad as I expected
Can anyone tell me about these steroids? I know this is obviously a question for the professionals but it's on my mind. Do we have to take them? What are they for? I'm a meant-to-be Nov starter, now Dec starter, and trying to prepare myself. I don't really want to take steroids but I'm assuming like everything else this isn't a choice...
I too live in a small village and think everyone knows by now. The advantage is that everyone offers help and support and lifts and everything so have succombed to just telling people. I guess they only ever see me in a hat right now but have been out walking the dog as often so more obvious...
Hi Denim , it went ok had hoped hubby would be with me but he was hull of cold so I made him wait in the corridor, I'm a retired nurse, we make the worst patients lol one of the nurses stayed with me throughout and kept me company, I think I just quizzed her to death, it was over with quite quickly about 45 mins in the chair then a chat with the pharmacist where I received my goody bag of pills ! I had some IV dextomethasone to start ( steroid) which they warned can give an itch perinium for some whilst administered lol and deep joy that was me but it stopped when it went through , the cyclophosphamide felt a tiny bit spaced but all in all it was fine and I was glad to have completed number one . I'm 3x EC the carbo taxel not sure how long ,9 weeks I think but that's weekly so I guess I will become firm friends with the staff .
So all in all not as bad as I expected
Good luck for friday and as one of the girls said to me ,its one checked off !!
Hi Denim, i think I may be on same treatment as you? Are you her2 +ve? I am having 4× EC though.
I too struggle drinking water, literally forcing it down, ha ha.
Keep drinking and eating ladies, whatever it is at this stage. That's what my Onc told me. And to live life as normal as pos. If I only I had the energy!!
Thanks Debknits 🌸
I sometimes wonder if it would be easier to tell all, but I really do prefer my privacy! We live in a small village and I would prefer not to be the topic of local gossip - however, I know they would rally round if I ever needed them! Time will tell - maybe a few weeks down the road and I’ll find it impossible to hide it 😕
I’m pleased that you’re away from the viruses at school now 🤧
Thanks KC57 💐
Yes, it’s so difficult!
I’m so sorry that you get weepy, I hope your friends give you plenty of hugs? I had a thought after I posted that I must seem very optimistic- I have no idea if I will even feel like venturing out next week! But I will try your approach and see if I can find out if they are healthy by chatting 😊
How did your chemo go yesterday? I will be on 3 x EC then 4 x PTH
Hi and glad not glad you found us
Since I work with 5-6 year olds, I’ve been signed off work for the duration of my chemo, last week we had norovirus across the school. So was pretty pleased to be put of there I can tell you lol
I decided to tell people from the beginning and it’s helped us, but I realise everyone is different.
It does make socialising trickier for you.
So far so good thanks Viv
all done for this one. Have to go back next week for my denusomab which is 4 weekly.
Have MRI scan booked for 13th Dec to check the spinal tumour. Then back for round 3 the week after xx
Hi Chris sorry you had a rough day yesterday , I'm def spaced out and head fuzzy today and nausea in the background I managed dry toast breakfast and dinner and managed a coffee and biscuit in costa ( whilst I can) but that was the most strenuous thing I did today lol
Take care 💖 KX xx
Hi viv .
I dont feel to bad , bit of background nausea and def off food, meds seem to be taking the edge off , i just feel a bit spaced out, vision a tad blurry but I had a decent nights sleep which is rare for me, maybe the stress of the waIt to start chemo was over which helped? . I'm just struggling with the drinking plenty of fluids I'm really not a big drinker so am sat with a bottle beside me and keep trying to remember to drink .
I just feel it's like waiting for symptoms to kick in , I'm analysing every feeling and twitch , not sure what I'm expecting to happen as we are all so individual and we dont all get the same side effects plus we are all on different regimens ,I have never been so obsessed with my health !!!
Hope your ok today Chris xxx
felt really nauseous and bad head last night but managed to get some sleep. Don't feel as bad today, took anti sickness this morning and crystalised ginger so not a lot of sick feeling today., drinking loads.
Just been out with the hubby and our little dog round the block, but feel tired now and just chilling
thanks for asking it's nice to know that you all care
Hi Denim welcome to the group ,I'm still a relative newcomer here as well, I had my first chemo yesterday but have been reading in for a while .
To tell or not to tell , is an individual thing , i got so weepy when i met people, having just retired in March I kept bumping in to friends who kept saying " dont you look well retirement suits you " and I would cry copious amounts , it just seemed easier to let friend spread the word .
You can always bring up in a chat maybe ,"has e everyone managed to stay away from the lurgies that are about? ", its funny isnt it everyone goes on about infection over and over then my onc said live your life as near as normal as !! 🤪 😷🤷♀️
Anyway welcome to the group sorry you find yourself here , however I have found it invaluable for information and a very safe place.
I would play it by ear after your 1st Chemo as you're not sure how you are going to be feeling. I've only been out to friends houses who know about my BC and check with them 1st regarding bugs. Also when I'm not feeling at my tip top best I can just chill in the corner. I guess it depends on where you are going and who is going to be there?
I am def avoiding anyone who is germified apart from my kids!
PS, I am a Biology Teacher so I may be slightly over cautious, ha ha
Hi all, I’m due to start chemo on Friday, so just squeeze into the end of the November group! I’m posting as I’ve just had an invitation to go out next week and they weren’t people that I had any intention of telling about my cancer - how are you all managing your social lives with the germ phobia that they have instilled into us?! How can I visit them without questioning their health before accepting! 🙃
Aw Flou, sorty that's rubbish, especially as you don't even feel unwell. Hopefully they will all come fighting back for next week. Will keep fingers crossed for you...🤞🤞
You are going to look stunning with no hair aswell..😊
I am craving a Big Mac but have gone into germ paranoia and keep imagining people sneezing into my food, ha ha.
I might have to give in tomorrow. I know it's not healthy and it's full of crap but the craving is driving me mad.
Today I had to have seeded crispbreads with Tzaziki dip...
I also braved our local garden centre and bought Christmas decorations
I am now resting on sofa..😴😴
After my anti-sickness meds were sorted out after my first cycle 2 weeks ago I’ve felt pretty good and was due in again tomorrow until my bloods came back low neutrophils 1.35 needs to be 1.5 so now it’s delayed a week. Really frustrating (even though it’s clearly for the best) as I genuinely feel fine so I hadn’t expected it at all, I’m telling myself if the chemos wiping out the cells I need then it’s getting those I don’t need too 🙏🏻.
Hopefully a bloodtest on Monday will be better and I’ll get back on it next week, in the meantime I’ve got to be even more germ vigilant and watch my hair start to go - yes it’s been a sh***y day 😬.
All the best to you all, I find so much here that helps. Thanks for letting me have a moment! 😊xxx
I battled to find anything that even tasted decent to be honest. Next one is in a week and I hope I suffer less with the taste.
Was just thinking about you and chemo 2!! Hope it goes well and that the last week allowed you some normality
Hi viv she has a hubby but he had to work , the nurses were making sure she got support , they were amazing , must be so scary as English wasnt her first language either , my heart broke for her xxxx
Well done Chris and KC and hope you guys are feeling Ok today. So now count down begins till final one!!
I was feeling sorry for myself yesterday until I had the image of the poor lady undergoing chemo whilst pregnant..how does she cope with that? Horrendous 😪
Lot to catch up on...sorry you got your period on day of Chemo Helen, that is not a great present. Mine stopped in February for 6 months and came back with a revengeful 5 week hell when I was diagnosed. I def think that one of the side effects of treatment is no periods in alot of people.
Ironically when my periods had stopped I had seen the doc about hot flushes and other menopausal type stuff and decided not to try HRT because of higher risk of breast cancer..
Off to my local cancer support centre that we have here in the wild North of Scotland to have chat with their councillors and get myself some chat and reiki therapy...
Def get your Picc line checked Helen, better to be safe with it. Checked with my nurses, for some reason they don't use them anymore where we are.
Anyone else struggling to find something yummy to eat week after chemo? I just can't find that certain something...
Hi Helen I havent had a line put in as havent had surgery yet ,and I have two arms of veins for them to go at although my hand is a bit bruised , you do right check with the team they will know if this is usual , like you I think it's best to err on the side of caution always.
Yesterday put things in to perspective for me , I was sat next to a very young mum with a 4 week old baby ( induced 4 weeks early) going through BC treatment I think she was polish and there on her own , the nurses were wonderful making sure she got lots of attention and made sure she got home safely but made me feel how lucky in the great scheme I am .
Well done Chris and KC- I think the wait has been torture for you both!
One question for the PICC liners. I am getting a tenderness and soreness under my left breast on the rib cage (but not the right). I am wondering if it is to do with the veins that the PICC line went into.
I will probably ring the oncology team, as I haven't noticed anyone else talking about this, so probably need to check it out