Frenchie 77 I think mine started falling out a little later than others, but I have/ had a lot of hair! I think like you, it means the poison is working.
Always something to worry about x
I lost started losing mine pretty quickly - 17 days after first chemo but my hair has always been very fine and I lost loads of it when I lost my mum so I wasn't surprised - just plucking up courage to go to supermarket on my own and am sporting a seasalt handyband rather than my wig
Thanks for sharing your photo, you're looking good! I expect mine will start falling out next week after my second round. I need to stop worrying that this isn't working!! Always something to worry about isn't there? Gaah!
Thank you for your lovely supportive comments.
The port was mainly uncomfortable during the procedure but they gave me gas and air. It's not that uncomfortable afterwards, slight discomfort and tenderness for about a week, and a bit of tugging at the neck when moving in bed.
My hair started to fall out just after the second EC. The most annoying thing for me with the hair loss is the mess. Hairs everywhere. I am now 12 days post 2nd EC and most of my head is bald but there are some stubborn bits (mostly grey) that are clinging on!
Hope the port insertion goes well x
Thanks for all the advice re diet and books etc.
Fiona, sorry to hear you've been feeling rubbish but glad you'reon the up now. Well done for braving the wig. B4, it was painful for a few days for me after having my port fitted (although I also had lymph nodes removed on the other side at the same time so maybe that made it worse).
I was just wondering when those of you doing EC started to lose your hair? I'm dreading it but at the same time having a wobble as side effects haven't been too bad (which is obviously good), but worried it's not working. Aaagghh!!
From my experience, as the EC finishes and Paclitaxel starts.. it becomes easier comparatively. With Paclitaxel they do give 8 mgs of Dexamethasone.. just with the paclitaxel intravenously. Also no GCSF hence no horrible pains....
I am having my portacath inserted tomorrow. Not sure how long it would be painful for.
Best wishes and lots of hugs
Hey Fiona, I’m so sorry to hear you’ve had a crap first half of cycle. I know I can only speak for myself, but if you wanted to bore me off about it, feel free. I think that’s one of things we’re here for 😘.
By the same token, I know when you’re just feeling so rubbish you don’t even feel like you want to reach out, or what to say if you did, or what use it would be.
I had a disappointing attempt to avoid steroid misery this cycle and took hardly any, but still felt very low.
This takes you places no one wants to go mentally and physically. I feel like having cancer and all the associated fear and sadness, gives me so much negative crap for my chemo-addled brain to ruminate about, it’s like torture.
I think I just have to work on my ‘acceptance’ of that as part of the cycle. Some days that feels like a challenge I can face, with positive energy - some days I just think if someone uses the word positive again, or tells me I’ll get through this, I’m going to scream (if I had the energy)
Anyway, we’re here for you Fiona ❤️. Hoping you can get something good out of the next 10 days. And either way, know that you’re not on your own Xx
Good morning ladies
I have been quiet of late as I really haven't been feeling human, and managed to bore myself complaining about how crap I was feeling (didn't want to bore you all too). Feeling like I am through the other side of round 2 now and even managed my dog walk this morning.
Rizzer I agree with everything you say. As a health professional I understand where the doctors are coming from when they say there is insufficient evidence. For a treatment to become mainstream (and funded by the NHS) it has to be proven by multiple studies with large numbers of subjects and rigorous methodology which has been peer reviewed, published etc etc. Unfortunately, although sometimes there have been studies looking at alternative option they just haven't been studied sufficiently yo be accepted into mainstream treatment. This doesn't mean they aren't effective, it just means that they haven't proven it (yet). I agree with the motto everything in moderation, healthy weight (I struggle with this, but am parking it until I am at the end of this ride), regular exercise (which I love and keeps me sane) etc.
As long as what we are eating/ taking doesn't have a negative effect and causes no hram, carry on with it. I was taking acidopholus and eating live yoghurt pre chemo but was advised to stop as the gut probably can't cope with it on chemo. I think they are right, too. I had two massive bouts of diarrhoea last night which I can only attribute to the cheese I ate at lunch time (hard cheese, but I did scrape off a little mold which normally I would be fine with).
I apologise that I can't remember what stages everyone is at, but hope that the ladies who had their chemo last week are surviving. Remember it doesn't last forever, although it might be feeling like it.
Re hair- I braved it and wore my wig into town on Saturday for the first time! I did feel very self conscious and it was boiling hot, but most people didn't give me a second glance.
Hang in there!
Hey frenchie, yes! I waffled of for ages 😂 to say what you summed up: it’s a minefield.
Could you download a kindle app or similar on your phone (if you don’t already have) and request a free sample of that book, via amazon. I’ve not read it. Perhaps others here have... Then you can take a look at the start of it and see if it appeals to you? I’ve dOne that with a few. Saves wasting money. Interesting the PR positive, oestrogen negative... I’m + on both, so never considered the separate progesterone bit, although I read some new stuff on cancer research UK I think investigating possibility/effect of giving progesterone (I think) to oestrogen + patients to improve outcomes. Might have something interesting to say about progesterone + cancer Xx
Yes, I feel the same as you (albeit less well read!). Want to do the right thing but also quality of life is important too and obviously a very radical diet where you completely eliminate whole food groups can cause other problems. It's a minefield!
I'm already vegetarian and my cancer is ER- but PR+ so not sure where that stands me really? I was thinking about buying Take Breast Cancer off your Menu" but not sure if it's worth it?
Thanks for taking the time to reply, good to know I'm not alone!
I can completely sympathise with how you feel. Wanting to do your bit to keep this disease gone for good, feels so important to mental health as well as physical health.
I’ve read a lot of books on cancer! I’m sure I’m not alone in that...
I’ve kind of come full circle now. I spoke to my oncologist about diet early on and really, as I’m sure you know, we get the standard conventional medical line about ‘no evidence’ etc, but he did say that whilst there isn’t enough evidence to say for certain there’s a connection, if you have er + cancer, removing potential sources of oestrogen from your diet such as meat, diary, toxins in tap water, he felt he understood/stood up to reason that women might want not to ingest additional hormones.
I also read ‘how to starve cancer’ which was very interesting, if a bit stress-inducing. The main thing about that book is that it is challenging some received medical opinion, but isn’t suggesting you choose between that and curing yourself with plants. This suited me as I have always felt I would take all conventional treatments going, but also investigate what supplements/dietary changes might help.
Problem is, I then got told to stop taking e.g Berberine as it may (or may not - they’ve no idea) interfere with chemo effectiveness. So on the one hand I’m reading an apparently scientific article on how it could actually increase effectiveness of chemo, then you’ll speak to an oncologist, and they will only ever say (and I understand why!) look there’s not enough evidence to take it and risk reducing the effectiveness of your chemo. Then you feel you’re in frightening territory where you’ve nothing concrete to go on. Or at least I did, so stopped. His point, which I understand is, why not just do all that stuff afterwards...
Things like fasting, which I do either side of chemo he says are fine in terms of managing side effects, but of course I’m also hoping that it might help make the cancer cells more sensitive to chemo. Choices like that are easy, as he feels it’ll do no harm and is dubious about any additional benefits, but as long as no reason not to do it, I can try it and pray for the best!
I know it’s not diet per se, but onc did say there was strong evidence growing across a range of cancers that staying a healthy weight and exercising regularly were the biggest contribution you could make to reducing your risk of recurrence. So on the days when I’ve eaten a load of rubbish I just think, don’t beat yourself up about the, palm oil/alcohol/dairy/asparagus/insert literally any food type here, in that meal - probably isn’t going to make your cancer spread, but sitting about feeling stressed and unhappy, absolutely certainly makes you miserable, so just go for a long walk etc. and enjoy life.
Anyway, my investigations on that front have definitely made me feel that a) I can do all that and the cancer could come back anyway so quality of life is important, b) a few bad food choices probably aren’t going to cause cancer to race through my body c) most important beyond food type is that overall, I eat a varied diet d) lowering alcohol intake, exercise, stress reduction, good sleep and trying to stay a healthy weight are the biggest contributors that most people agree on.
Everyone has their own philosophy on this don’t they...
Sorry, long reply. I got well in to this and wished that the naturopath side and medical community could meet somewhere in the middle, so that those of us who want all the orthodox meds but are also interested in other ways that might help, don’t feel unable to make informed decisions. That’s all any of us want at the end of the day: to make informed decisions...
ok I’ll go now...!
wishing you all a good day Xx
Great good luck at work this morning! Will be thinking of you.
Take care of yourself and hope it goes well.
I will ask my manager about options about work as I do miss it - well, some of it!!
I'm keen to read about how my diet can influence the effectiveness of treatment and reduce the risk of recurrence but there seem to be so many books out there and I don't want to get sucked in to some kind of gimmicky miracle cure. Does anyone have any recommendations? (Just to clarify, I am having all the medical treatment available, just looking at ways to improve my chances as I feel that what I eat is one thing I can control).
Ladies good evening x
I am so excited to be going back to work in the morning......I can't believe it....I haven't worked from the 11th November......work bag is packed and early nite…...I have set my alarm to go off an extra 15mins before usual to give me time to draw my eyebrows on...…I have a few eyelashes still so all being well they won't be on the pillow in the morning.....I will be thinking of you Madcatlady on your first day back x
Livers I am also having Herceptin along with Perjecta and will hopefully be finishing my treatment in March '21 like you.....omg I have just realised that my sister will have 2 birthdays in that time
I love your chat about the Yew trees......I didn't know about their significance.....I work on an estate that is filled with trees of all types.....it really is beautiful....I am going to ask my boss if any are yew trees.
Lady34 it might not be for you but I have been taking a Bach flower remedy that a lady who I see at our local cancer charity made up for me for when I am feeling really low and sad after I came of my steroids and along with it there are flowers added to help me sleep.....it had definitely helped me as I haven't felt I needed to take my sleeping tablets or diazepam this cycle at all.....as I said it might not be for you but if you would like me to send you any details please let me know x
I wish you all a restful nite….Debbie x
I'm glad you managed to sleep last night 🙂
I can really empathize with what you said about being easily wound up and your defences being low at the moment. It's hard enough keeping your own feelings and thoughts under control without having to manage other people and relationship dynamics.
Hope you can relax tonight.
Thanks B4 - yep, we all need to focus on that light at the end of the tunnel.
Sending you lots of hugs too!
Ah ok - I’m ER/PR negative and HER2 positive hence 18 rounds of Herceptin - so won’t finish all treatment until March ‘21!
Yes sounds the same except I'm not having herceptin as triple negative so that won't work for me - I love that the Yew tree is helping us - in going to find one to visit 😊 it's amazing that in this science led world nature still plays a part I thinks the break between my chemo and radio is about 3 weeks
I seem to be on the same regime as you one more EC (28/1), then 3 x T (Docetaxel) 3 week break, then 3 weeks of radiotherapy Mon-Fri. I also start Herceptin on round 4.
No sure who mentioned about the yew, but thank you. I have an Irish yew tree in the garden so willhave to start stroking it every morning!
wow I’ve always loved yew as they’re believed to ward off bad spirits 😀 every churchyard has one. I had a small one in my garden but strimmer lost it. Only a stem left! I will definitely stroke yew too may buy one now too.
So lovely that yew as a poison is a medicine too but so are many things in nature. Interesting as Turning poison into medicine is a thing in Buddhism. 🙏🏽
My second day after chemo did sleep last night. Took injection and meds this morning.
Not hungry so maybe won’t eat till I am.
Emotionally and psychologically im easily wound up so watching my short fuse level. It doesn’t have to be another person winding me up. It’s mainly my own thoughts or feelings about stuff eg not been treated with proper respect love from some family or ex friends and why I put up with it.
Trouble is I’m vulnerable now so must not take action on this stuff as it’s mostly old and dealt with. But now my defences are low stuff may come up. Being sensible to stay stable.
Bit o bell ringing will cheer me up 😀😀😀
Have a good day ladies. Stroke a yew🌲🌲🌲
Ring a 🛎🛎🛎
Eat something naughty 🍰🍩🥟🍪🥧
Feeling positive as the time is passing, seeing light at the end of tunnel.
I wish you all the very best and sending you loads of hugs.
I didn't know that about yew - I know a really old one not that far away and shall definitely go and say thank you.
Night ladies. Hope you all sleep well.
The T bit definitely comes from Yew Trees! Taxus Baccata. I’ve always loved yew, especially the really ancient ones, and I know this will sound silly, but ever since I found out about this cancer treatment I’ve been brushing my hands through any yew hedges I meet out on walks and asking it to do it’s work. I promised myself I’d plant one in the garden after treatment. I know they’re v toxic if ingested by us or livestock, but I’ll be forever grateful to them if they kill any cancer still in my body X
Best wishes with your treatment, hope your EC treatment finish quickly. Are you having 3 weekly Paclitaxel?Would you know how much is the gap period between the end of chemo and starting radiotherapy, if you have been informed at all?
I have one more ec then 3 T then radiotherapy already had my Mastectomy ( which was not too bad at all) struggled today was lower back spasms had this last time consultant said it was bone marrow making white cells - hope everyone is having a good weekend I'm watching rubbish on TV - sad to admit I'm watching the masked singer!
Hi madcatlady yes got 3 t next like you
too tired to research today what t exactly is. Did it for FEC found it was found in nature in shellfish uniquevti japan. Didn’t actually say this was included in FEC.
Happy bell ringing ladies 🛎🛎🛎🛎🛎🍀😀
That's good about work and the precautions sound very sensible. I am visiting vulnerable children and families at home so it is hard to avoid exposure to germs and indeed the work can be emotionally draining too, but I am going to ask about whether I can do something office bound such as follow up referrals/enquiries received via phone or email.
Good luck - it will really help with feeling like the 'old' you.
That's good to hear. Yep, I'll be ringing a halfway bell too on Monday.
You've got the three T treatments next like me, haven't you?
Love the little bell pic!
I also work with children (primary school admin), but managed to persuade them to let me work days 10-21! My office is literally inside the main door of the school and I promised to stay out of the classrooms, main hall, staff room and away from Reception/Medical room (also said I would wear gloves the whole time whilst on the premises!), so they agreed!
Hi madcatlady thanks I’m feeling good today cooking and resting. It’s my third so got 3 more chemos to go then an mri then they plan to do mastectomy.
Feeling good im halfway with the chemo am ringing a halfway bell😀
chocolate brazils yum
love to all for a good day today
All be bell ringing 🛎 soon
Great to hear you're going to be working again next week too. Good luck 🙂
I had a wild craving for cottage cheese on baked potatoes when pregnant. I loathe cottage cheese normally so that was weird...!
Incidentally I am classed as allergic to celery as it gives me a bad upset stomach and sickness if eaten, and a nasty rash if I touch it. I have to wear a red wrist band if in hospital even though it's not a reaction to a medicine. Trust me to be allergic to something healthy! 🤣🤣
Great to hear you're back at work. Hope it goes okay and helps you in feeling more normal.
They've signed me off for the duration of chemo as I work with children and families and so am vulnerable to catching whatever is doing the rounds. I do miss work though and the whole routine.
That's the spirit, silvertong - you tell 'em - from a fellow baby fluffy chick with the same attitude 😄
Drool...chips...and chocolate-covered Brazil nuts...especially the dark chocolate ones...I too start off with a great breakfast (today homemade muesli and strawberries) but then it all goes downhill.
Good job it's a beautiful sunny morning here too so I can try and work it off doing some cleaning and gardening ahead of chemo no.3 and subsequent carb fest...
Well done, Lady34 - three down. And a chip fest to mark it! As rizzer said, if FEC referred to fish, pickled egg and chips...no problem!
Glad you got back safely and are resting. How are you feeling today?
I went for my pre-chemo appt yesterday and noticed an old-fashioned bell on the wall with a notice saying to ring it three times to celebrate when you get to the end of your treatment. Whilst I was with the oncologist we heard someone ringing it and then clapping and a big cheer. It really made me smile and mentally applaud the ringer for getting there!
We will be ringing that bell before we know it, whether literally or metaphorically! Yes, onwards and upwards is right 👍😁🍾🐱🐕
B4 good to know you’re ok. I’m not craving like others on here wish I was. No tastebuds use lemon and ice lolly’s before I eat to taste a bit more.
Resting today. Steroids kept me awake last night. Enjoying the sun flooding my room 😀
wishing you all a good day 🍀🙏🏽😀
all ok, the only thing is that due to steroids there is lot of carb craving...
mots nice and sunny outside, hence thinking of going for a walk..
bestest wishes and hugs
Hobbycraft is a giant store selling all things crafty, i.e., sewing , knitting, candle making, embroidery, baking/icing tools, make your own paper craft, etc. It can be expensive, but you are pretty guaranteed they will either stock or source any hobby/craft product you need. They are on-line too.
Hi ladies, hope the Chemo went well today, I wish I could go back to work but they are not being flexible and I just feel so tired! Hobbycraft is a big Arts and Crafts shop I like to knit and plan to do some drawing 😊 got out again today for a lovely short walk hope everyone has a nice weekend - might buy myself some Celery love it with Cheshire Cheese
Hi ladies x
Just checking in to support Lady34 & B4 on their chemo days today I have lost track of all our dates but who is having theirs next week?
Your food conversations are making me laugh......I am completely the opposite but I think its because I had suffered so badly with tummy cramps that I can't bear the thought of my normal chocolate, chips, butter and all things carbs.....Michael bought me a Nutribullet for my birthday so along with my celery craving I have been eating the healthiest I ever have.....howeverrrrrrrrrrr absolutely no weight loss in fact I have managed to put weight on
Livers I am so excited too because I am also going to try to work 3 mornings next week and I can't wait just to earn a bit of money.....I'm self employed so I will appreciate the income...….too buy more celery!
Adelemck I am really glad you are managing to get out and about.....I am curious what is a Hobbycraft?
Hi Rizzer, I’m just like you with regards to food. Have my healthy b’fast, lunch and dinner and then it goes downhill fast......any cakes, biscuits, chocolate, crisps that are in the house don’t stand a chance! Can’t wait for the last of the Christmas goodies to be gone - hopefully I can eat the last of everything this weekend 😂😂
I’ve been really lucky (so far) with regards to my hair. I’ve been cold capping and still have pretty much a full head of hair, it’s just thinned slightly at the back - it’ll probably all fall out now that I’ve said that!
Stay strong all 💪💪💕
I can’t say for certain, but I think the fasting has helped with nausea. Doesn’t seem much help with the roid rage, however few I take. At least I know there are 60 hours out of every 21 days that I’m not eating like a horse! Well, a horse who is mainly fed on bread, cake, chips and chocolate. It all started so well with lots of lentils, beans, colourful veg and salads... I still eat all that, but then afterwards, eat a huge wedge of fruit cake and 15 chocolate covered Brazil nuts.
u have hit the nail on the head there.. loads of people don’t have all their own hair nowadays.. the fake look is def in!
wigs are great today, and believe me.. no one will know you’re wearing one.. apart from friends and family that know obviously.. my wig is actually better than my own hair was.. but I’m still paranoid wearing it.. need to get used to it.
i haven’t gone for the full head shave either.. like u, I’m sporting whispy baby hair (that still needs covering up)
remember.. this is all temporary x
I have piled weight on but am a bit scared to change my (terrible) eating as I seem to have avoided most of the more hideous side effects. I'm also blaming Xmas/steroids. Haha.
Did whoever was fasting think it worked for them? I really don't think I'd have the willpower!
Sorry to hear that cold cappers seem not to have had much success. That flippin' EC (and other letter variants) seems to just do the biz so efficiently that nothing will stop it. However... that should be good news in getting the beastie that we are doing this for.
I only had my pixie cut about a week before it fell out in chunks. I suppose better in shorter pieces but still annoying and saddening and irritating - sometimes it was like little needles! I was going to have it shaved but I seem to have stabilised at a wispy baby chick fluff and it is a bit cold to go full bald.
Bit selfconcious about wig sometimes but I don't think most other people even really think about it. Especially in this day and age when hair extensions and half wigs are more common. If I do get any bad comments, they will get a mouthful back anyway!
Hope all went well today for those having chemo.
They have decided to change my day from a Thursday to a Tuesday (scheduling issues at unit) so I now won’t have chemo 3 until 28th Jan. As feeling good, I went back to work this week (mornings only) and I have to say it’s been great to break the monotony of daytime TV and feel “normal” again for a while! Also means I’m moving more so may help with the weight gain!