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January 2019 chemo starters

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Re: January 2019 chemo starters

Hi Helenbumblee,
You poor thing, it sounds like you are having a tough time. I’m sorry to hear about your phlebitis and your hair loss. Can you really put your foot down and insist you have an appointment for a picc line before your next FEC? Surely you would be considered a priority.
I know the hair loss sucks, mine was two weeks and it started pricking etc. I had it shaved exactly three weeks to the day. It’s all traumatic stuff especially when you have children to worry about. Lorraine.1 put some really helpful info about trying to encourage hair growth further down this thread.
I have had 2 FEC’s now and would say my symptoms are similar to yours. My sense of smell has really heightened and I find this difficult, also a dodgy stomach.
Just wanted to send you a hug and I hope your phlebitis improves. Breast cancer just sucks.
Sunnydazexx
Member

Re: January 2019 chemo starters

Hi Helen
I just press Add Comment at the end of someone else's comment. If it makes sense. I don't don't much about using this site too. Lol
Just finished my EC. It goes straight to your head. Strange feeling of fuzziness...
Member

Re: January 2019 chemo starters

Looks ok so assuming I've done the right thing.

So, after the first week, I seemed to ping back into 'me' again, which was a huge relief. Tired at times and headaches, but nothing severe, so I'm trying to get as much done as I can before FEC number 2 on Thursday.
My appetite seems to have returned in terms of what I enjoy, although I don't feel especially hungry. Some smells really affect me still, although I'm so much better now and gaggibg left, right and centre appears to have ceased for now.
48 hours ago - so literally 2 weeks post - the hair situation has arrived. Feeling stingy in patches and didn't really realise what it was until I saw hair going down the plughole. It's washing off my arms and legs slowly, and almost gone from more intimate areas. I can deal with that fine, but seeing eyelashes and eyebrow hairs on my dinner plate was nasty and it's starting to fall from my head now, which is still a horrible reality, despite expecting it.
I used a cold cap, so I'm waiting to see if what's on my head will thin or disappear. My 4 year old keeps curling in to me and saying he won't recognise me once my hair's gone, that I'll look strange/not like me/not pretty anymore. My 7 year old is a worrier and my fear was concerned yeaterday when the GP diagnosed him with alopecia.

I have phlebitis from my surgery in November and, as I feared, I've now got it in second patch on the same arm, from treatment 1, which is painful. The nurse was lovely and said I needed a picc line before treatment 2, although the hospital couldn't offer me an appointment until Friday next week, so I've got another treatment to get through still before I can have it, and am braced for more discomfort. Not only that but, being the day after treatment, I'm going to struggle just getting there!
Member

Re: January 2019 chemo starters

If I've done the wrong thing in trying to add an update, will someone explain how this new layout works? All I could see was 'Reply' in the bottom of each message, and I'm not replying, I just want to add a comment to the mix. Finding this layout confusing!
B74
Member

Re: January 2019 chemo starters

Well AC#2 was uneventful, the nurses are all so nice which really helps a lot. This time I was nervous but not terrified like the first time around, just knowing what's to come made it easier somehow. The good news was that my blood counts including neutrophils were "all excellent, better than before you started"!!! Not so happy about having to have a neulasta injection tomorrow, but I definitely don't want another trip to hospital.

 

Now I'm home waiting for side effects to kick in.... oh joy. Do the rest of you come home and rest, or just do normal stuff until you can't any more?

 

Oh and I didn't manage to shave last night - I got my husband to cut as close to the scalp as he could with scissors (we both shed a few tears!), then got into the shower with the intention of shaving the rest, but I couldn't see what I was doing, the razor was getting clogged up etc etc so I gave up and went to bed. So my current new look is very mangy and motheaten with obvious scissor marks all over my head. More concentration camp than proper bald. I still get a shock every time I see myself in the mirror. The kids have been ok, lots of extra hugs from my 7yo (as if to reassure herself I'm still the same mum underneath), but not entirely comfortable yet.

 

Hugs everyone & good luck G, MMJJ, Wantolive & anyone else also having treatment today.

Member

Re: January 2019 chemo starters

sunnydaze, yes good carrier oils would be coconut, castor and for those with tender scalps almond oil is a very soothing carrier. You'll find biotin (b vitamin) is also used in many shampoos that promote hair growth and if you take up to the EVA you won't do yourself any harm - however do run this by your onc so they know. I checked I could do all of this first.

 

I don't know if any of you are near a Haven centre, if so there might be a herbalist there who can supply you with an oil for your scalps. I know there is one at the Haven in Fulham, London. 

 

I know G, i am a bit obsessed I think (!)  probably because I lost so much hair before. I was devastated. At the moment I still have mine but aware that could change tomorrow as this is my first time having chemo so unsure how it will affect me and when. 

 

Wantolive, I hope you get some rest before tomorrow. Will be thinking of you all xxx

 

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Re: January 2019 chemo starters

Hi girls just quick update before I TRY to sleep tonight before my chemo. Good idea about bio oil. I am gonna get one I used it for my stretch marks while was pregnant and looks like good idea to start using it on my head as the remain 2 hairs on my head hurting me. Or it is my scalp. Dry skin and fact that I use wig all day and then my scarf. Don't know. Big hugs to those of you (all of us) who feeling emotional about losing hair or shaving hair. I feel like at this point you really feel that it is happening...iam definitely having chemo treatment because of the bold head looking at me every morning in the mirror. I miss my hair already.
I think I am developing yeast infection. And mouth ulcer. Joy...
I cooked and cleaned today. Just to get myself ready for tomorrow. My second chemo. After first one I was thinking I am not gonna get worried about my next one. But I am nervous. Counting hours... Might go downstairs to watch some film in the middle of night if I can't sleep.
Just wanted to say hope you guys feeling ok those who in the middle of their chemo cycle and good luck yo those who going tomorrow. Mine is at 12. Big hugs guys!!!
Member

Re: January 2019 chemo starters

Hi Lorraine.1
Thank you for this really good advice. I wondered if the advice to avoid sour dough was to do with the starter. I only occasionally buy sour dough so it’s not a problem and like you, I am making do with supermarket Greek Style Yoghurt. Its a shame re; thrush prevention though...The advice from Guy’s and Thomas’s from the link I posted earlier; I found useful, very clear. Sometimes info gets distorted, but this was very clear.
I am sorry to hear that you have previously suffered from hair loss 😒 Good luck with the cold capping this time round🤞. The information you give about rosemary oil is very useful. Do you just put a couple of drops in a carrier oil, almond oil or something? I think I will invest in a good quality oil, it will smell good too. Thank you😊
I am glad to hear that a complex B vit and vit D, are good for improving hair growth. I have taken those vits for sometime now, along with a good magnesium to aid the absorption of vit D. My Onc told me that everyone in the UK should take vitv D. I know a lot of women diagnosed with breast cancer often have low vit D levels before diagnosis. I know I certainly did, so now I’m just on a maintenance level during chemo, making sure it doesn’t interfere with chemo.
I am not sure what biotin is, but I will research it now, thank you and I will keep in mind Waterman’s shampoo when my hair starts to grow again. I am dreading the fact that it may well come in grey because my hair was going slightly grey at the temples and crown, but the blonde highlights hid it.
I am massaging my scalp with bio oil just now 🤣 I had it in my cupboard and decided that if it was good enough for my scars, it would be good enough for my scalp and keep those follicles moisturised until I found something better. I will now buy some vit D and rosemary oil for this purpose.
Many thanks and good luck if you have round 2 tomorrow .
Sunnydazexx
G
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Re: January 2019 chemo starters

Hey Lorraine.1 you are all over this hair stuff! Thank you so much for all your tips, truly appreciate xx
Member

Re: January 2019 chemo starters

Hi B74 and sunnydaze, the reason live yoghurt and sourdough are not advised is they both contain bacteria, sourdough bread is made with a 'starter' which is a combination of yeast and bacteria. Ordinary bread is made with only yeast which isn't bacteria. I miss both but for what is a relatively short period in my life of treatment I have decided not to take any risks and follow the advice given, frustrated though as live yoghurt protects against thrush which I have read can be a s/e of EC and Paclitaxel. Am making do with supermarket greek style yoghurt Smiley Frustrated

 

G, you asked about hair supplements further down the thread. I've had hair loss before from anaemia which was really upsetting. I'm prepared if it happens to me again this time from chemo but I decided to do all I could to prevent it, including cold cap. I asked my onc if I could take biotin and b complex throughout chemo and she said yes but I had to stick to the EVM, for biotin it's 900ug. Rosemary oil also good for the scalp (came out as good as minoxidil in trials) and vitamin d oil. Also, if your internal vitamin d level is low (which is really common in the northern hemisphere) hair won't grow as fast, so might be worth asking them to check your vitamin d, if they haven't before you began chemo. Finally, I swear by Watermans shampoo for fast hair growth. Also to avoid build-up neutrogena /t-sal shampoo is excellent. I hope this is of use maybe.

 

Good luck to everyone for the next round xx

LB
Member

Re: January 2019 chemo starters

My husband and I cut my hair and then shaved the rest off - wow - I quite like it 😊 the discomfort of the prickly scalp and the horrible pulling is a thing of the past. I have found that it’s shedding from all over 😊
Good luck to those going for their next session and hugs to all 🤗
G
Member

Re: January 2019 chemo starters

Hi Sparkie2001, just a quickie on the hair. I had long hair and my hair wasvwry important to me, my comfort blanket etc socially. It started to feel like it had been in a tight pony tail for a month and released so it felt painful every time I moved or touched my head. It then started coming out Saturday/Sunday a little every time I touched it, which as you can imagine became my new obsession unless I always messed with my hair subconsciously!! I knew the inevitable would happen as soon as it was washed but I had no choice on Monday after my kettles class, two thirds came out in about an hour with the washing and the combing and this just continued. I had it clipped last night by my hair dresser but right down so I do look pretty bold but at least minimal hair will now fall..I found the emoji for this too, who knew 👩🏻‍🦲! With regards other hair loss, definitely falling from body too but I wouldnt have noticed as such just yet if I wasn’t heightened in looking for hair loss!!! It is emotional every time I have to discuss it with a new good friend or family member but when I am on my own I am okay with it, and I can feel a weight has lifted with the worrying of if, when and how it would happen.

Thank you everyone for advice re eyebrows and eyelashes. I have invested in Revitalash for lashes and one for brows but the brow one references not being used in chemo, can’t recall exactly what it said, I think I took it more that it hadn’t been tested but I’m not sure whether to continue to use or not, will take a look at the other suggestions.

Wishing all the best as we approach a big day for some of us tomorrow and I hope the move into some well deserved good days for others xx
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Re: January 2019 chemo starters

I’m still feeling nauseous this morning. Urrgh, (day 6) but going to get up and make some soup, take my mind off things and stop me going stir crazy. Hey Sparkie2001, can’t beat snuggling down to a bit of Pepper Pig when the going gets tough. Incompetent Daddy pig and George’s shower cries. Loved it all. I remember those days fondly.
I’m not usually one for crap memes, but I liked this one. I just stumbled across it as I was searching for a celeriac and fennel soup, as you do.
I think the soup (and the meme) are good for the cold winter days and nights. .Its freezing temperatures out here in the countryside.
“I will love the light for it shows me the way.
Yet I will endure the darkness for it shows me the stars.”
Apologies now, if it’s too crass, being house bound and yucky is getting to me. 🤣Have a grand day ladies and if you are losing your hair, the prickling, migraine heads and raw emotion came as part of that particular hair loss package for me.😢😢😢 It’s all just weather passing us by. It will get better.
Sunnydaze
Member

Re: January 2019 chemo starters

Morning all! 

 

Glad you're feeling a bit better today Stuckat14 :-) If it's any consolation I suddenly seemed to emerge from the land of spaced out oddness yesterday exactly a week to the day of my first chemo and feel pretty much back to my normal self now. It was very strange, almost like someone had switched my brain back on. My mouth feels rather revolting though so that's at least one sign that the drugs are still working their magic. 

 

Re: hair loss - for everyone curently shedding - does it all start to shed at the same time from all areas Smiley Wink ?

There are parts of me I haven't seen hairless for years! I fear the drains will be blocked in no time. 

 

Re: kids - yes it adds a whole new layer of cack to what is effectively the worst thing I've ever been through (and oh how I used to whinge about work/childbirth/life). It's the endless worry that I'm screwing up my seven year olds childhood versus the stark realisation that if I don't take these nasty drugs I will be screwing things up for all of them even more. He seems to be coping okay with things although probably getting fed up with repeatedly being asked by me if he's okay. Luckily my two year old is two and therefore remotely disinterested in anything not related to Peppa Pig and the baby is too busy learning to crawl to care if I am bald and sad at times. It is hard with small kids but I fear it would be much harder for you guys who have older children who are far more aware of what's happening and more likely to worry. I take my hat off to you all. I like the idea of the photos though - great idea. Soon we will have luscious locks again. 

 

Hope y'all have a good day :-) 

 

 

 

MBJ
Member

Re: January 2019 chemo starters

I hope you are feeling better today. I will be looking for the eyebrow stuff you suggest. I am sure when you feel a bit better you will have a go with it.
Member

Re: January 2019 chemo starters

I bought some lipocils stuff from Amazon for eyebrows and lashes. Have felt mainly too horrendous to remember to put it on so far (still in first bad bad week) but saw it recommended on Instagram (@cancerwithasmile) . My kids are 5 and 2 and I've talked a lot about losing my hair- we've joked about it and they've tried on my wig etc but ibdont know how they will cope with seeing me when it actually goes- it's been a very teary week for all of us with me in bed and them having colds and missing their mum etc.
Anyway, I feel a tiny bit better today so fingers crossed it's true and there is an end to the nausea.
G
Member

Re: January 2019 chemo starters

Thank you Sunnydaze for your accurate and kind words. Aren’t children amazing, they are going through something I can’t ever imagine and that is hard as a parent as you always draw on your experience to nurture and lead but we are learning this all together, I guess a different kind of bond will be there at the end of all this.

One thing I wasn’t prepared for was the prickliness u feel when turning over on my pillow ladies, not sure if unique to me or others had this...actually quite a few ow moments 😂

Hey B74, I agree it is another brutal thing to happen to our bodies but I am learning that I have surprisingly quickly got used to the new normal on other things (still emotional but accepting) so I am hoping I will here too 🤞, will see how a full day goes as all I really did today after was hug my hubbie and girls and go to bed!

I am already worrying though about eyelashes and eyebrows as they stand out now and as other areas have started shredding too...always a positive, saving so much time in the shower😳, I am really hoping they don’t start as think that will be hard. Anyone doing anything here to help protect them? Also anyone else going to continue to cold cap after the shave to help stimulate the follicles? Last question, anyone been advised to take any hair supplements etc or do we have to wait until after chemo?

Loads of hugs xx
LB
Member

Re: January 2019 chemo starters

My hair has started to shed in earnest today and I’m surprised at how upset I feel. I thought I was fully prepared and upbeat about it but it feels shocking. You’re right Sunnydaze one step closer to the end of this journey. Hugs to all x
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Re: January 2019 chemo starters

Hey G,
Sending you love💕 re; hair loss. Well Done for braving the shave. I sent my girls a photo before hand too (12 &15) I think it helped them too. They have been supportive “We still love you. You’re still our Mum” and that meant a lot. I was quite gutsy about it at first and I think they picked up on my positive vibes and started creating a new rock chick image for me at first. Now, I just wear a hat in the house and it’s becoming the new horrible normal. I hate looking in the mirror too. Going bald is such a “cancer patient” look isn’t it and so frightening for our children. I am sure you are dealing with it really sensitively G with your kids. My eldest saw me crying when it started to shed. I felt bad for exposing her to my tears, but then again it’s not good to hide our emotions too much either, because they just learn to hide emotions too then and then that’s not healthy . Just think, every horrible step we take is a step closer to better health and an end to this horrendous journey.
Sunnydazexx
G
Member

Re: January 2019 chemo starters

Hey B74, still in awe of your fast, amazing.
Also quite in awe of your memory, yes it was I worrying about my 11 & 9 yr old girls as the hair thing has been an upsetting topic throughout for them. They have been very upset tonight and neither have seen me yet without a hat thing on although both have looked at a photo I took which has helped to calm them and demystify it a little, hoping tomorrow they are brave enough to look but I will take their lead here. I hope your shave goes ok, I was quite emotional through it, more than I thought I would be as usually can hold things together somewhat but then I have had an emotional couple of days generally.
Wishing u well with your fast, your shave and your chemo xx