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November 18 chemo starters

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Re: November 18 chemo starters

Hi anitmth, thanks for your comment about the portacath, booked in to do it Friday and wondering whether to funk out as hard to face more medical procedures when I’m still suffering from 1st chemo session. However breastcare nurse and the one who looked after me during chemo both thought it would be a less stressful option for me, seeing as how worked up I was getting. So I think I will just take the plunge and hopefully have it easier in the long term.
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Re: November 18 chemo starters

Doesn’t feel less hurtful when you don’t brush your hair and have to clean up all the bits that come out
Number two done now I’m officially half way through my EC 😀😀xx
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Re: November 18 chemo starters

Hi Liloc, I have a port - it wasn't great having it put in, but having bloods done today was much easier and faster, with none of the struggle to find a vein.

Member

Re: November 18 chemo starters

Thanks for the comments - it's nice to know others are going through the same thing, even if I wish you weren't. Hair now cut down to a centimetre but still coming out.Not as horrifying as having a hairbrush full of hair. I have a selection of hats but I haven't tried the wig yet, it still feels odd.Eyebrows and eyelashes still there but my eyes have been really runny and sore. Bloods and swabs today in readiness for round 2 on Wednesday. Fingers crossed that it isn't too bad.xx

 

Member

Re: November 18 chemo starters

Good luck with round two today Kateday, I’ll be thinking of you xx

 

My next one is on Friday, I’m dreading it already.

 

We shaved my hair to a number 3 on Saturday, day 16 after first FEC treatment. My scalp had been so sore, and my hair was starting to fall out more so I just bit the bullet and did it. I definitely cried, and still think I look a bit strange in the mirror!

 

But I have to admit, it’s nice to not have to faff with the hair dryer, straightener, etc. And it really helped to ease the soreness.

Member

Re: November 18 chemo starters

Traceybev
You will know when you are ready
I just couldn’t bear finding it everywhere and when I showered well it was just coming away
I cried when we shaved it short but within an hour I was over it
And now I just don’t care
Round two of EC today then I’m half way through EC , dreading the next week and half now I know what to expect xx
Member

Re: November 18 chemo starters

Hi all,

I'm on day 17 after having first of 3 EC noticed hair thinning on day 15 and today really noticed how much was shedding !!  I did cold cap so was hoping would be minimal loss but not to be 😟 Have wig ready but just not sure if I'm ready to "brave the shave yet " 😲😲 xx

Tracy

Member

Re: November 18 chemo starters

Hi Kateday & Sals

I'm day 17 today on weekly Paclitaxel and carboplatin every 3 weeks. Have been cold capping but the one you change every 30 mins or so. It's so weird cos as much as you know your hair will more than likely fall out, you still think (or pray) it wont!!! I've chosen a wig ready but was hoping I wouldn't need it 🙈 xxx

Member

Re: November 18 chemo starters

Lisajayne
Mine really started coming away about day 16 I then decided to take it to a number three but now even that is like a patch work quilt x
Member

Re: November 18 chemo starters

Hi Lisajayne11,
I’m on day 13 and no sign if hair loss yet, I did cold cap so hoping it might help my head hair but still got everything at the moment if you know what I mean, when did everyone else start to shed? I’m expecting it any day 🙈
Member

Re: November 18 chemo starters

Kateday, my head hair is definitely coming loose! How long does everyone find the hair shedding lasts before looks a total mess? I have loads of thin hair, was hoping it might just thin out a bit?!!! 🙈

Lisa xxx

Member

Re: November 18 chemo starters

Juzcooper , I do hope you get home today this journey can just suck
Lisajayne my foo hair started to go first , then my head hair , still have my eyebrows and eyelashes though
Liloc thank you I’m am dreading feeling rough but know it’s another I can tick of the lost xx
Member

Re: November 18 chemo starters

Hey Juzcooper1971, sorry to hear about your blip. I'm sure you will be fine and the antibiotics are precautionary, I'll keep everything crossed that you'll be back home later today and fighting fit for your next round. I've been okay so far again this week, just finished the first cycle. I find the injections are giving me more grief than the chemo! Got one later,  can't wait 😬

How are you doing with hair? I think my head hair maybe starting to shed, but only very slightly, but my foo hair is going for it!!!🙈

Stay well 

Lisa xxx

Member

Re: November 18 chemo starters

Sorry to hear that juzcooper, hope you get back home soon. My Breastcare nurse recommended keeping a hospital bag packed just in case of such situations - said she didn’t want to scare me but in the event of feeling unwell and having to call a hotline in the middle of the night, it would be good to have a bag ready to go. So she suggested a washbag with the usual toothbrush, paste, comb, moisturiser, deodorant etc, pjs or nightie, underwear, slippers & dressing gown, phone charger if you have a spare to pack away, water and snacks, your notebook if like me you have to write everything the doctors say down. So I have got out an overnight bag to do that, sure it would still be a bit of panic anyway, but good advice I think. Best of luck xx
Member

Re: November 18 chemo starters

Morning everyone! Got my 3rd chemo on Tues as having mine every week due to the trial. All was going so well with me until yesterday morning when my temp spiked at 38 😕 Called the chemo line and they had me straight into hospital on the acute oncology ward. However when I got there my temp had come down but my blood pressure was high so they've kept me in for observation. Did bloods, chest xray and straight on antibiotics through a drip. The nurse has said this morning that my bloods look okay and my temp and blood pressure is back to normal so fingers crossed once I've seen the doctor he might send me home with oral antibiotics. A bit fed up as I feel fine apart from a bit of a cold and being tired. Thinking it's the cold that's messed with my temp but all is good now 😉 xx Thinking of you all xx
Member

Re: November 18 chemo starters

Hi all, good luck Kateday for tomorrow, glad to hear you were out and about (you’re on the same EC regime as me but I’m two weeks behind so following with interest). On Day 5, having done my 1st on Weds. Nausea’s been crappy but haven’t actually been sick. Finished the 3 day course of pill popping so have to see how it goes, I do have some Dom Perignon (Domperidone) left to take as and when. Hot water and ginger infusions worked when I had morning sickness so I’m trying that again (with the odd ginger nut biscuit thrown in for good measure). Thought I would have lost some weight with feeling so bad but I have actually put ON two pounds. Lots of reasons:
- moving from bed to sofa sure isn’t using up a lot of calories
- steroids
- Having to take some pills on a full stomach when I wouldn’t usually have eaten
- nibbling constantly to keep my stomach calm
- comfort food ( I totally deserve those breakfast croissants my sister brought me every morning)

So going to try a bit of exercise, just a little walk as it looks quite sunny out, don’t know about a switch to really healthy food just yet 😊.
Member

Re: November 18 chemo starters

Good morning ladies
How are we all doing
Round two for me tomorrow, so not ready to feel like poop again
I have had a lovely couple of days though, got out with kids and hubby to light switch on 😍😍🌲🌲
Community Champion

Re: November 18 chemo starters

Well done so far to everyone, you seem to have grasped the importance of staying hydrated during chemo.  I've explained on my blog why this is important and there are other tips which helped me whilst I was going through chemo so feel free to take from it anything which you may find helpful. I gathered this information collectively from my chemo buddies and other monthly threads so as not to lose useful info from others http://lifeafterlola.com  Hopefully you won't get as many side effects as me.  I was a bit unlucky with a few but it also means I have quite a bit of experience at dealing with them and *did* also survive them!  Best wishes. xxx

Member

Re: November 18 chemo starters

I have decided the hair is going number zero then a lovely mosituroser 😀😀
I did drink water and more than the recommended and still suffered with nausea and vomiting
They are nicely adding another medication to help with that for next week
I have decided to break my cycles down to two half’s so next week I will half way through the first half sounds so much better hehe xx
ktk
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Re: November 18 chemo starters

Just to let you know that the free prescriptions last for five years so fill your boots!!! There have to be some perks to this hell!!! Kx
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Re: November 18 chemo starters

Thanks Lisajayne,

I'll just keep checking certain areas today.The abcess has made me feel a bit crummy but otherwise not too bad.

Member

Re: November 18 chemo starters

Hi Sal's
It's true about the drinking before and after, I read your post before and three days before having chemo I kept a pint glass of orange squash with me all the time and just kept slowly drinking them one after another and drinking my herbal teas as well. Did the same after chemo, it's a great way of flushing the drugs through your system and getting rid of them.
So ladies just keep sipping a drink all day long for at least three days before and after chemo, it really will help.
Member

Re: November 18 chemo starters

Kateday,
Try shaving to a 1 and if you have any, try Aloe Vera, if not, my neighbor used after sun moisture lotion, she said it was a miracle worker.
I've used Aloe Vera and some of the moisturizer your doctor can give you on prescription, don't forget, you are entitled to a lot of stuff on free prescription when being treated for cancer, my neighbor didn't find out till nearly the end of her treatment.
Member

Re: November 18 chemo starters

Hi Ladies, just saying hi, and a recommendation to those of you suffering with the after effects of the chemo, I read somewhere that day before day off and day following chemo drinking 2-3 litres of water makes a huge difference in how you feel, I don’t know if I was just lucky but I did this - it was hard work but I managed 3l each day and my nausea was manageable as were other symptoms, just got to remember to do it each time, don’t know about you guys but the brain is definitely a bit fuzzed!
Day 10 still got all hair at the moment and feeling much better but now you’ve got me thinking that the next cycle is not far away! We’ve just got to keep ticking them off! We should make a list of things we would really like to do just small things and share with friends to do one thing each time on the good days between cycles as a reward for getting through it! Shame we can’t all meet up - for a baldies night out!!!
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Re: November 18 chemo starters

Liloc I felt horrendously sick but it did improve
I’m seeing my oncologist tomorrow and will talk to him about how awful it was and hope he performs a mirical
But it does get better I promise I’m on my third week and feeling pretty much like my normal self
Probably tire easier and my mouth still gets the odd little ulcer but I have even managed two days work
That I’m extactoc about
Second cycle approaching now not so looking forward to that
I love this forum
My scalp has been driving me mad so tomorrow I will moisturiser and see if that helps
I shaved to a number three on Tuesday and today I have some lovely bald patches appearing so at the weekend what’s left is bloody going xx
Member

Re: November 18 chemo starters

Hi ladies
I had my second cycle yesterday, I'm feeling a bit rough today, almost the same as the first one.
I was told yesterday that my chemo cycle had been changed from once a week in January to every second week for 18 weeks, so that cuts the chemo down from 22 to 14, but as it has already been changed once, I suppose it could be changed again.

It took four hours to have my chemo yesterday, it should have only taken 1hour, but there were only 2 nurses on instead of 6, they were under so much pressure, I really felt sorry for them, there was just so many patients.

A tip I was given by one of the nurses when my hair started to fall out, was to keep moisturising the scalp, it has made such a difference, no discomfort at all, I would highly recommend doing it.

Don't forget to make sure you moisture all over as well, every day you bath or shower, chemo drugs really dry the skin out.

Hope everyone is doing ok, at least we can all say, "I know how you feel and what you're going through", because we all do.
Let's keep holding hands and we can all get through this together.
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Re: November 18 chemo starters

Hi Harkes

I'm day 14 on Taxol and carboplatin every 3 Weeks and have been cold capping. Got home this evening and the lady garden has tidied itself shall we say! Head hair still hanging in there but we'll see what the next few days bring. Think I've read on here that the non head areas seem to go first. 

Hope you are recovering well from your abcess?

Take care

Lisa xxx

 

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Re: November 18 chemo starters

Thanks Pigeon, that’s encouraging, I hope I go the same way as you. Will talk to the team before the next session to see if they can adjust cocktail for the first night as I really don’t want to undergo that again another 7 times 😔Thanks for the food suggestions, I’ve just had some toast today. Liza x
Member

Re: November 18 chemo starters

Hi Liloc, sorry to hear you’ve been unwell 😞

I was quite poorly as well that first night, I was only given anti sickness tablets to start taking the following day, for the next 3 days, and I think the antisickness that they gave me intravenously just before the chemo must have worn off by the evening. I discussed with my oncologist and he is going to prescribe some extra tablets for the next round.

The nausea did wear off for me, I was in bed the whole of day 2 after chemo with sickness and nausea, then day 3 I felt a little better but stayed in bed, still a little queasy but mainly exhausted from the ordeal and feeling sorry for myself 😞, day 4 I was up and about with just a little queasiness if I thought about the wrong foods (it really put me off some things, temporarily!) and the nausea was pretty much gone the day after that.

Try and remember to keep taking small sips of water if you can, my nurses kept stressing to me that it’s important to stay hydrated. And if you can, eat little and often, I found something bland like dry crackers or toast were easiest, then plain clear soups when I was up for it.

All the best, hope you feel better soon x

Member

Re: November 18 chemo starters

Hi, Harkes sorry to hear about your infections, hope A&E didn’t keep you there too long. My first chemo was ok, the staff were so lovely and caring, especially about my needle hang ups. Didn’t do the cold cap as didn’t want to be there any longer than necessary. Got to chat with a lady who had the chest portacath, I’m booked in to have that implanted next week and still a bit undecided about whether the surgery is worth it. However.... started feeling really nauseous about 6pm and had a horrible night, not actually sick but horrendous nausea (worse than morning sickness or back seat passenger on a mountain pass)🤢and sleepless. Still feeling really grim but have 30 anti-sickness pills to take over the next 3 days (the timetable is doing my head in) so hopefully will ease it. Worn out just after writing this message. Think today is mostly going to be bed. 😔 Have others felt like that at the beginning, does it wear off?
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Re: November 18 chemo starters

Don't know whether the cold cap has worked or I have just been extremely lucky but at day 14 I still have all my hair everywhere! However, since the chemo I got a urine infection last week and last night was at A&E with a massive abcess in my armpit! I suppose it is the luck of the draw.

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Re: November 18 chemo starters

Hope everything went well for you yesterday Liza. It's sounds like you have a great network of friends around you. I have been lucky in that way too although nobody has cooked me food! 😄

Love Lisa xxx

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Re: November 18 chemo starters

Hi all, starting chemo at midday, getting myself worked up but lots of positivity on this thread so think I can do it (4 rounds of EC and 4 of Taxol to come, with some carboplatin thrown into the mix if Olga isn’t shrinking). Had so many supportive messages on WhatsApp this morning, really have some lovely friends. As I’m not commuting into work for the winter (going to try the company’s lovely clunky remote network from home) my colleagues gave me a mega Amazon voucher ONLY to spend on books and pamper goodies 💝. And one of the football mums from my son’s team turned up on my doorstep last night with a big tub of bolognese sauce to put in the freezer for rainy days. Took a photo of it to put in my ‘joy jar album’ to give me a boost when I’m feeling down. Liza x
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Re: November 18 chemo starters

Sals, I've been working on and off - I had two days off for the chemo, but since then have been working from home (3 days) and going in to the office (2 days). Luckily my work have been brilliant and are letting me decide what I am capable of. I've been much more tired than usual, so have only been doing 4ish hours in the office - I'm hoping to build that up a bit over the next 10 days or so until my next chemo. I find that if I don't demand too much of myself it's much better all round! Doing this amount of work has definitely been good for my mental health. But, as with everything, I think it's going to massively vary from person to person, so, if your work are sympathetic, you need to find a system that works for you, whatever that is. Good luck!

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Re: November 18 chemo starters

I ordered an eyebrow kit and keep trying to practice
As like you it’s the no eyebrows or eye lashes that will make it look worse xx
Member

Re: November 18 chemo starters

🙁 I guess it’s going to take a little time to get used to it and to be honest I was only thinking about the look not so much that it might actually be sensitive - that sucks. I think I could handle my hair if I still had eyebrows and eyelashes it’s the thought of a face with nothing that defines it that worries me - bring out the makeup bag! By the way has anyone been to a look good feel better session yet?
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Re: November 18 chemo starters

Hi Anitmth and pigeon,
I think we are all on very similar regimes, I have 3 FEC then 3 T, my tumour was grade 3 but no lymph nodes involved ER+ but also HER2+ so I have the herceptin added on from cycle 4 and if I remember its 18 of those injections every 3 weeks but I don’t think there are any real side effects? Fingers crossed i’m 1 week today since my first cycle and had surgery beginning of October. I’m due to go back to work next week, how are those of you that are working coping?
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Re: November 18 chemo starters

Honestly at the time devastated which is odd I’m not a girly girl with fancy hair
Only hour after I feel it’s a step forward
Went for a shower and stood waiting for conditioner to soak in and then realised there wasn’t much left to absorb it
Husband said he could see once started where it has started to thin a lot and my scalp looked red
I said that’s because it’s sore xx
Member

Re: November 18 chemo starters

Hi Kateaday,
Whoop whoop, well done you did it! How do you feel?
💪
Member

Re: November 18 chemo starters

So ladies
I did it I braved the shave not completely a number three
Yes there was tears but I couldn’t bear how much was coming out any longer xx
Member

Re: November 18 chemo starters

Welcome Anitmth,

 

Our stats seem quite similar, I’m also ER+, HER2-, grade 2 with node involvement. I had surgery early September. I’m on day 12 of first round of FEC, I’ll have 3 FEC and 3 T in total as well.

 

From what the other ladies have said, it’s normal to start losing hair down below first, although I don’t seem to have started losing from anywhere yet... I’m kind of on tenterhooks waiting for it to happen!

 

Glad to hear round 2 hasn’t been too bad for you, fingers crossed for round 2 to be better.

Member

Re: November 18 chemo starters

Hi Anitmth
And welcome
I will also get my second cycle of EC next week , I’m having four of each today I have gone out in my head scarf
As I think tonight will be the night to say goodbye to my hair
I’m sick of cleaning it all up from around the house xx
Member

Re: November 18 chemo starters

Hi pinklily,

 

What you need to do is become a skier (spend the kids inheritance) we have every intention of doing that when hubby retires in 2 yearsSmiley Happy

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Re: November 18 chemo starters

Hello ladies,

New to this but was diagnosed July. In August I had 2 lots of surgery, grade 2 tumour and lymph node involvement, ER+, HER-. Now I am day 13 after the first round of FEC chemo. All OK, survived the portacath under local (yuk! what a nightmare!), and then the actual chemo. So far I have been tired and a bit achey, but I am dreading round 2 next week in case it is worse. I have 3 rounds of FEC and then 3 rounds of T , so one down , 5 to go. It is strange to see the variation in treatments, but I assume the oncologists know what they are doing.

My hair is still on my head, but elsewhere is experiencing autumn.Very odd. Still it saves shaving. I wondered if it was just me - I have a wig and hats and scarves at the ready, and am almost frightened to brush my hair.

It is the waiting I can't stand, and feeling like my life is on hold whilst also trying to make the most of every day as far as I can.

Also trying to carry on whilst I avoid anyone with any kind of bug! I appreciate what some of you have said about horror if anyone nearby sneezes! I am thinking of going out with a scarf over my face like a cowboy in a dust storm!

Keep going everyone, we can do this. My favourite quote about this so far, I don't know where it came from :

"A woman is like a tea bag. You never know how strong she is until you put her in hot water."

The water is quite warm right now. X

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Re: November 18 chemo starters

I have been out in my head scarf trying to prepare my self but I think today or tomorrow will be the day my hair is everywhere and I’m sick of hoovering up numerous times a day
I would like to try and say EC isn’t to bad but it hasn’t been to kind to me , how very selfish of it 😂
I have another three to go then move onto four tax
I’m telling myself my next cycle makes me half way through the EC it seems to help xx
Member

Re: November 18 chemo starters

Hi harkes
I know what you mean about lack of support. Our daughter is 42 years old and has no interest at all in what's going on, she always has been selfish, but we thought she would be there for us when I was diagnosed, but that was wishful thinking, not one phone call or message.
I have a wonderful husband and we have a couple of very good friends who have been brilliant. Our neighbours have been very kind as well, but it hurts when our daughter is more interested in her social life with the yacht club than her mother having cancer.
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Re: November 18 chemo starters

You did make me laugh Kateday when you said about 'Kung foo their arse'. I had my head shaved the same day I saw the pre-chemo nurse, decided to take control there and then, the only problem with that was my hair decided to keep growing. But yesterday I started shedding everywhere, it's like having a dog in the bungalow again, I'm going to try and keep my head scarf on or hubby will have to hoover all the time.
I've managed to get a wristband which says 'Axillary Lymph Nodes, No BP or Needles This arm', as a lady said, who had one, "if you're unconscious no one will know not to touch that arm", it made sense.

O well, tomorrow will be 2 down, 20 to go.

Once you've had your head shaved Kateday it will feel much better, I was told to use moisturizer on my head, like Aloe Vera, and that does seem to have helped, its cooled my scalp down quite a bit.

Be brave and shave, it's the one thing you will be in control of. xx
Member

Re: November 18 chemo starters

Hi Lisa. Yeah, ready for it 💪 I'm thinking the same about the FEC 😕 At least we've only got 3 cycles of it and not 6 like these lovely ladies. We'll probably be grateful for the 3 week break by then I would think.

Take care everyone xx
Member

Re: November 18 chemo starters

Hi Juzcooper1971

Ready for today?

This week has been a much better week so far, although I have come to the conclusion that the injections are the devil!Smiley Mad

Apart from my "toilet episode" on Friday I was totally fine until yesterday when I ached from head to toe.  Had a hot salt bath and watched some netflix.  Feel ok this morning apart from a bit of a headache, but we'll see how the day goes.  Usually start to flag at work around 3ish. I agree that so far its been ok but don't want to jinx it!  I'm convinced if we manage ok on this chemo cycle it will be the FEC that gets us later on!Smiley Sad

 

Glad to hear everyone else isn't doing too bad as well so far. Look after yourselves ladies and gents

 

Love Lisa xxx

 

Member

Re: November 18 chemo starters

Hi
Well today is day 15 and well my hair as decided it won’t just be the odd strand anymore
And either tomorrow or the next day I may have to be brave and share it
My head also feels funny tingly , itchy hot all on and off
I can’t run my fingers through my hair now as they end up full
And I have to agree with not wanting to be anywhere near anyone that coughs or sneezes
The first time I went out
I messaged a friend and said if anyone coughs or sneezes near me I will Kung foo there arse away from me haha
I have to also add my erm how to put this lady garden hair started to really come out first 😂😂
No need to shave my legs either anymore xx