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January 2019 chemo starters

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Re: January 2019 chemo starters

Live Yoghurt.....B74. I would carry on eating it if you have not been told otherwise. My friend had BC when she was in Hong Kong (she had top class treatment) and she was never told about it either and ate it all the way through treatment. My hospital told me to avoid, but here is a good link from Guys and St. Thomas’s hospital and it offers clarity. It says “generally considered safe, but use with caution” re; probiotic yoghurt.
https://www.guysandstthomas.nhs.uk/resources/patient-information/cancer/diet-and-chemotherapy.pdf
B74
Member

Re: January 2019 chemo starters

PS none of the doctors or nurses has said anything to me about yoghurt! Also, I don’t see the problem with sourdough. Yes it’s made with a live culture - but normal bread is also made with a live organism (yeast) - both are killed by cooking.

I’ve eaten yoghurt & drunk kombucha with no ill effects that I can tell. What did they say the risks were?
B74
Member

January 2019 chemo starters

Hi everyone - wow - I went to sleep and woke up to a new look forum and a dozen new messages! G how have your kids reacted to your bald head? (sorry if I'm getting mixed up but I think it was you who said they were really worried about it?) Sunnydaze I'm sorry you're feeling worse this time around - oh dear - not good to hear! - but also not really surprising I guess. This stuff knocks you around so it must get harder & harder for our bodies to bounce back. I certainly don't feel as good going into #2 as #1. Sparkie2001 - I don't know how you're doing it with little kids. My youngest is 7 and they've been on school holidays for the last 5 weeks which has been tough enough, I'm counting the days (6) til school goes back. (Only so I can get more rest time!!) Wantolive - geez I wish your husband would step up and support you by learning how to clean!! I can't believe you'd be up that late on chemo night cleaning up his mess. Time to put your foot down?

 

I'm 19 hours into my fast ready for next infusion Fri, feeling a bit weak but the fasting doesn't seem as big a deal as last time, maybe because I'm just so scared about the infusion and afterwards. I now just want it over and done with. Today I'm taking the kids roller skating and to the orthodontist and preparing a couple of meals and tonight I'll shave. I've been putting it off as long as possible but last night the back of my shirt was like a rug and lying down felt like pins in my head. 

 

Take care everyone, thinking of you all xxx

G
Member

Re: Hi everyone, it's good to know I'm not the only one strug...

I have done it ladies, hair has gone. Still in shock but feels better and I hope emotionally I will just get on with it. Eventful week really..port yesterday (not very nice to be honest), hair today, second chemo Friday (onc going to give me different sickness drugs so fingers crossed)....bloody exhausted!!! Wishing u all well xxx
Member

Re: Hi everyone, it's good to know I'm not the only one strug...

Nausea can make you feel miserable I know. But you have almost passed those worse days and Iam sure you will feel better and better every day. Of they sort out yoir drugs better next time you will feel the difference. Big hugs. I know what you mean about kids and every day life. My husband can't even use dishwasher. I was up at midnight on my first day of chemo and cleaning my kitchen as he left it in such a mess.
It seems at the moment that this 3-4 months will never end but iam sure we can get through it. Big hugs to you x
Member

Re: Hi everyone, it's good to know I'm not the only one strug...

Hi Lorraine.1
Thanks for the info re; sourdough bread. I wasn’t told that one, but of course it’s live too isn’t it. Harrrumph. It must be so tough going through this by yourself. I hope you have good people close to you to support and help out. You realise who your friends are through all of this.
I’m pleased your hair is holding out girl, even if you lose it, it will grow back the same as it was before. I didn’t think I would mind losing my hair, but it has been a really tough gig looking in the mirror
Sparkle, your post made me smile when you mentioned your washing basket. It’s an achievement when I’ve managed to empty mine. My kids are at school though, so it must be hard for you ladies with little ankle biters still at home during the day and needing attention.
I’ve just made myself go out for a walk in the winter sunshine for about a mile and I’m keeping drinking loads of water. These two things definitely help with the se’s.
Sunnydazex
Member

Re: Hi everyone, it's good to know I'm not the only one strug...

Hi stuckat14, I am on 4x EC (1st one  was 8th Jan) have you asked for Emend for your sickness? It's expensive to NHS but a very good drug. If they haven't given it to you please ask your onc or bcn to have it for the next round. I suffer with nausea quite easily but this helped me enormously. You should have it before your chemo then each day for 2 days afterwards.

 

Sunnydaze, i really miss live yoghurt too and not allowed sourdough bread either! I'm on 4 x EC and  was told bloods start dropping on day 7 and come back up day 14 onwards, onc said the drop can start as early as day 5 though. Please take it easy and rest and I hope you feel better soon.  

 

Hi Wantolive, I do try to get organised before chemo. Live alone so try to have a full fridge and freezer in. I ate pretty lightly first few days but on day 5 was back to normal eating, no taste changes as yet. I've been brushing teeth or rinsing mouth out with salt water each time after eating and for first time in my life using a tongue scraper as taste buds are on the tongue. If anyone here is on paclitaxel I read that sucking ice lollies when you have infusions helps with taste thing - not sure how you keep them ice cold though in chemo unit. I have a cool bag but it's not a freezer. 

 

G, thank-you for your good wishes hon.Hair is holding on for now, I'm day 15 since first one and shedding could happen any day so thanks for the symptoms. I think i had a tingling on top of scalp on day 12 but it went.I definitely will continue to cold cap even I lose it all because from what I've seen hair does grow back faster afterwards and same as it was before. Got 3 friends all early 40s going through this and at different stages (some had chemo first). I'm going to continue with the vitamin D oil at night too. 

 

Member

Re: Hi everyone, it's good to know I'm not the only one strug...

Hi everyone,
Just catching up and loving reading all of the many different posts. We are quite a community now 😍 Don’t apologise for your long post WantOlive, I loved learning about your life! The Christmas glass baubles sound lovely and the chicken noodle soup. I understand many of your feelings too. Why me? Why have I got breast cancer when I have looked after myself and lived a healthy life 😢 Life sucks sometimes. I also agree with the lady who mentioned she doesn’t like the new design of this thread. It’s so much harder to see who said what and remember names and stuff. It might look better, but I don’t find it very user friendly. Worse than it was! Oh well .
Stuck at 14 I am on day 6, second round of FEC and I am still feeling grim, worse than last time. I feel nauseous and my skin has darkened, looks like I’ve been under a sun bed😵No chemo pallor for me, but it’s a bit worrying, so keeping my eye on it. Last time I was baking on day 6, this time I can only get out of bed for a couple of hours during the day to do a bit of housework or preparing food for dinner. One of the ladies on here said she felt like a “dead battery”, great description, sadly that’s how I feel too. Really done in. This corner is taking a long time to turn. Fingers crossed 🤞 all those feeling rough today feel better tomorrow ❤️ I think I feel worse because my bloody period has dragged me down. I’m trying to eat lots of leafy greens to stop any anemia. Does anyone know when your bloods drop in the cycle? I thought it was about day 4-9 but maybe I’m wrong.
My heart goes out to all of you ladies struggling with hair loss just now, although we put a brave face on it, it’s a tough one especially when you are feeling rubbish from chemo se’s. I told my husband last night that this whole process is So dehumanising. I have lost my breast and my hair and I look rubbish, it’s definitely upsetting when you’re feeling vulnerable. My husband said, but I still love you, so that was nice, but it’s hard and at least we are not on our own on here. I do know that the effects of chemo are dragging me down right now and I will hopefully have a “glass half full “ not”half empty” again soon.
Anyway, I was having a laugh with my sister. I was wearing a little black type of sleep cap and my sister called me”Ali G innit”. Well that made me laugh, so true😂 It felt good to laugh.
I am really missing strained Greek Yoghurt and Yeovalley Yoghurt because it’s live Yoghurt I haven’t been able to eat it, due to the live cultures. However, I have been able to find a Tesco and Asda Greek Style yoghurt that don’t state they have live cultures, only pasteurised British milk, so hoping these are ok.
Ok ladies keep fighting the good fight. I’m up here fighting from Scotland. Look after yourselves those that are struggling this week and enjoy the freedom for those of you who are enjoying their “normal” days.
Sunnydazexxx
Member

Re: Hi everyone, it's good to know I'm not the only one strug...

Day 6 and still some naseau.  Im wondering if the filgrastim jabs have something to do with it as when I get up I feel fine and then half hour later I do the jab and then a short while after I start feeling sick.

But at least Im not getting the bone pain which is a more common side effect.  

 

Huggss to all. 

Member

Re: Hi everyone, it's good to know I'm not the only one strug...

Hi all 

 

LB - I've got a number 2! It's very cold though so if you're ready to roll get your hat ready :-) 

 

As with most things I went head long in to the hair loss and thought I'd take my hair before any horrible drugs were getting their hands on it. I had a series of terrible haircuts from a seven year old on the day of my first cycle and then we shaved it all off. The thought of it dropping out made me sadder than just getting it over and done with. Can't say I particularly love the look but I guess it won't be around for much longer anyway! 

 

Stuck at 14 - I'm a week into it all and my food tastes rubbish but I am eating like a horse. I'm not back to normal by any stretch of the imagination and have felt pretty spaced out the last few days. I've not been too bad with the nausea but the indigestion/heartburn is doing me up like a kipper. My kids have been out at school/nursery for the last couple of days so that's helped but today the two youngest are at home and it's double the effort to keep on top of things. Don't be too hard on yourself. And I frequently feel like running away... 

 

Wanttolive - your chicken noodle soup sounds fab. Recipe please! :-) It is really odd that so many of us seem to be in our early 40s with kids but comforting to know we're not alone. I am planning to spend my good days getting everything sorted so the house runs like clockwork (hahaha) or at least emptying the overflowing laundry basket. 

 

ktk
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Re: Hi everyone, it's good to know I'm not the only one strug...

Hi LB. when I found a small animal in the bottom of the shower I decided to brave the shave. I went all in and took the lot off, mind you it was June!!!🤣. Felt much better afterwards. Lots of pretty scarves. Kx
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Re: January 2019 chemo starters

Hi , I started last week 23 jan , ec x 3 then will decide after , feel ok , sick once , very tired in afternoons but pretty much feel ok 😄
LB
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Re: Hi everyone, it's good to know I'm not the only one strug...

Hi Stuck at 14

It was day 9 before my food started to taste normal and after that I had much more energy.

It's day 16 now and my hair has started pulling and falling out - it's time to brave the shave - my husband wants to do it - I might stick it out for another day or 2 - I didn't think it would be this hard to do.  I had several friends who were going to help - guess what - all got colds. I'm not sure how short to go - any suggestions please.

I love all the tips that we share on here - it really helps.

Hugs to all  

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Re: Hi everyone, it's good to know I'm not the only one strug...

Thanks G and Wanttolive. Yeah first one, I was so sure if have 3 days out then be feeling better so now I'm just thoroughly miserable. Everything tastes and smells disgusting - ginger and pineapple especially. Also struggling with being so helpless with the kids etc, all this and I still have hair. Does anyone else feel like giving up? I wouldn't obviously but I just wasn't prepared for how bad I feel.
Member

Re: Hi everyone, it's good to know I'm not the only one strug...

Hi Stuck at 14
Was it your first cycle?
Day 6 I was feeling nauseous too. I remember thinking that it's already day 6 and still feeling sick but then suddenly this feeling left me on day 7. Sorry you feeling poorly though to the point you don't can't go to doctor. Ask them to try different medicine this time. They will be happy to do so.
G
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Hi Stuck at 14, my sicknesss lasted exactly a week, almos...

Hi Stuck at 14, my sicknesss lasted exactly a week, almost to the hour, and then just lifted. I was able to do the walk to and from school but that was all. I definitely didn’t want to meet friends or socialise so if u don’t either don’t beat yourself up. The following two weeks I was back to myself (if a little hyper because I didn’t feel sick!!). I also got emotional on about day 5 (steroids reaction has been suggested) but really low, I now know to expect that and again that will pass.
Big hugs xxx
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Hi everyone, it's good to know I'm not the only one strug...

Hi everyone, it's good to know I'm not the only one struggling with sickness. I'm on day 6 now and haven't left the house apart from to see the out of hours doc. I had first ec on Friday, started domperido Saturday and changed to cyclotizen on Sunday but I've still barely left bed or the sofa. Is this just how it is? I feel so sick, weak and tired. I've not got the energy to go back to docs to try a different anti sickness, surely it should be better now? How many days was it before you could say arrange to meet a friend? X
G
Member

Hi Wanttolive, please don’t apologise for anything on her...

Hi Wanttolive, please don’t apologise for anything on here hun, if you want to do a long post then do it.
I can’t imagine having your phobia and going through this, although you have to keep telling yourself that people aren’t physically sick usually having chemo, it is just the feeling to manage and it sounds like another thing you have conquered in this horrific journey! I was given domperidone same as you but I really want something else on Friday so going to see what they say based on suggestions from my very knowledgable friends here 😊
I think you sound like your are doing amazing...I think we alll need your chicken noodle soup recipe especially if it is something healthy in chemo week...all I could eat was beige food, and carbs aren’t great for my tummy either...lactulose is what you need, you need to ensure you drink a lot of fluid and the lactulose (get some from your pharmacy).
I know what you mean regarding the emotional side, I wanted to tell someone the other day to stop moaning about the wait to pay for some shopping at the till, I found my self getting cross thinking if that is all you have to moan at!!! Then I thought I don’t know what people are going through as I have never looked like I have cancer, I imagine the first time I will is when I sort out my very thinning hair. But I totally empathise, everything has a different weird spin on it. I found the hardest thing to deal with about feeling so nauseated was what had made me feel this way, total brain confusion on what the hell am I doing.
Sounds like your crafting is a good escape for you, I often read for a few hours before the rest of the house is awake (or message on here!) and I quite like that mebtime where the world isn’t up yet.
Take care x
One last thing, anyone else finding the new look of this forum weird to get used to...I don’t like change 😂
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Re: January 2019 chemo starters

Hi girls it will take me a few days to remember who is who. Looks like a few of you having chemo on Friday. I also can't believe so many of us the same age. With kids.
MaMaJuJu good luck with hair. I have shaved my hair myself. Just sat on the floor with shaving machine and decided to try. And ended up shaving off all of it. Not very short. Left about an inch. I have good thick hair and a thought of it coming off in big chunks makes me feel sad... So I think it's better this way. Now I have just a few hair here and there left and I look so weird in the mirror. I wear wig. For about 2 weeks now. I love the look. To be honest better than my own hair. But I already miss my hair.
I haven't red all comments yet but can see everyone suffer with nausea mainly. I was thinking wow all of us having different pills prescribed. I was sent home with Ondansetron and domperidone. I took all of them LOL as I suffer with phobia of vomiting unfortunately and one thought of being sick is making me wanting cancel my treatment. I am having EC chemo. And I had very strange nausea during my first round that make me eat , making me very hungry. Like bring pregnant when you feel nauseous but craving sour and salty foods, first day after treatment I spend on kitchen cooking a lot. I was really craving chicken noodle soup and Russian salad. I ate a lot during my first week. I would get up in the morning and had noodle soup at 7 in the morning which would make me feel so much better. And it tasted so special. Also found crisps and greapfruits are very helpful with nausea. My nausea was was mild and I wasn't very fatigue at all. Maybe first a few days. Another side effect I had was indigestion on the day 2 and constipated for first 4 days.
I also was going to ask you girls what is your routine on the week of chemo. Are you trying to get yourself organised before chemo? To have utoninv done and food shopping cleaning and cooking?
I feel like I live somebody else's life for months now. I feel like there is no dignity during this treatment. Starting from mammogram and continue with surgent drawing on your boob and looking your hair through treatment, I found it very emotional sitting there for your first chemo watching this drug going through yoir vein knowing and at same time not knowing what it will do to your body. I often think when iam walking into the shop or being around strangers on the street that all those people don't have cancer and I do.

G, I had high oncotype as well. Because I had breast implant I can't have chemo. So my doctor advised to have chemo.
I don't work at the moment but I do have my little workshop at home. Where I handpaint my glass Christmas tree baubles. I have sold a lot and I am planning to sell a lot next Christmas. This is what keep me sane. Sometimes I get up at 5 in the morning put my jazz music on and start painting. Before my demanding family makes up.
I hope girls you all having a relaxing evening and looking forward hearing from you.
I am sorry for such a long post. I will try yo keep it short.
Xxxxx
LB
Member

Re: January 2019 chemo starters

Hi go cat I was told to take the as and when anti sickness pills as often as I needed - better than feeling nauseous. I also found that eating a salty cracker helped with that queasy feeling - someone described it as like morning sickness. I too had Emend. I saw my oncologist today and asked to see my breast mri scans. I just needed to see what i’m taking on. I’m pleased that I am enjoying the good week and have got a lot of energy ready to start again next week. Good luck and hugs to all x