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January 2019 chemo starters

B74
Member

Re: January 2019 chemo starters

Ps the nurses aren’t considering a PICC line or port for me since I have “good veins” but I wish they would, I’m beginning to look like an addict (they can only use 1 arm and my hospital stay added about 10 new holes)
B74
Member

Re: January 2019 chemo starters

Hi everyone, I’ve been lying really low since AC#2 on Friday, only just crawled out of my hole to catch up on everyone’s posts. I think I get a bit of a cancer/chemo allergy after treatment & can’t bear to read or think about it at all.
Welcome to our new members. HelenB I do hope (like everyone else) you’ve been able to move your PICC appointment, & Sparkie I hope you’re out of hospital soon! Not fun.
I am so envious of people who say they “sail” through chemo, I have to say it really kicks my butt!! I mean objectively the SEs aren’t that bad compared to what others go through (I also had an extra anti-nausea med this time which helped & put me to sleep for the first 24 hours), but I just feel so not myself, flat, low, apathetic, tired, sad & can’t get up the energy to do anything. I am so glad my infusions are on Fri so at least my husband can take care of the kids over the weekend.
Take care everyone xx
Member

Re: January 2019 chemo starters

Hi SusieQue,
I will also start EC this Tuesday (I had my PICC line put in on Thursday).
I am a learning a lot from the lovely ladies here who are ahead of us and hope that we can also support each other along the way.
I'm having 4xEC and then 4xT.
What about you? xx
Member

Re: January 2019 chemo starters

Hi G,
I’m on the cyclazine and have Akynzeo before hand too. I don’t have the prochlorperazine though. I’m going to ask for something stronger next time. The cyclazine has been ok for me, but has made me sleepy.
Member

Re: January 2019 chemo starters

Hi SusieQue,
Welcome 👍 I’m so glad that you have been given the all clear with regards to secondary bone cancer. What an horrendous time you must have had, but what a relief to know that you only have primary breast cancer to deal with! It’s funny how we manage our expectations and feel relieved when one set of awful news is quite palatable when compared with the alternative.
I had to have a bone and body scan before chemo and thankfully like you, I was given the all clear, but waiting was a living hell. Scanxiety is very real and I truly believe waiting for results is one of the worst things we have to endure. But hey, you can put this behind you now and just focus on chemo and getting better. I hope your chemo goes well on Tuesday. It’s not as bad as I first feared, but there are so many of us in this Chemo club going the distance along side you. We all draw strength and gather tips from each other on this friendly and supportive thread. We are all strong enough 💪💕 and can get through this.
Sunnydazexx
Member

Re: January 2019 chemo starters

Hi Sunnydaze
Good evening - I get my picc line fitted tomorrow and my first EC chemo treatment on Tuesday - absolutely dreading it but it is better than the first option I was given! After my CT scan and bone scan - the oncologist advised that she was almost certain that I had secondary breast cancer. After the PET Scan results I was then told that it was primary! The waiting was torture considering that I had my mastectomy operation in 14th November!
Any advice would be helpful if you have any - good luck with your journey 😊
G
Member

Re: January 2019 chemo starters

Hi ladies, not sure if u get a dose of anti sickness before your chemo too? I am given a tablet of Akynzeo. The change in my anti sickness meds to bring home after second EC seems to have helped the nausea to a good degree, feels like a bad hangover at moment rather than the awfulness of the first time. They have put me on cyclizine and prochlorperazine this time for info, 🤞 stays in control of it as I was really bad by now last time.
G x
Member

Re: January 2019 chemo starters

Sunnydazze
Ian glad I can make you smile with my comments. I actually cleaned the whole house as couldn't stand the mess. Lol
Despite feeling sick. Iam a bit mad. Looking forward to dancing on ice.
You know as you said I suffered low mood this time around too. Honestly. And I have 4 more goes. I am glad you turning the corner and hope tomorrow you feel so much better
Member

Re: January 2019 chemo starters

Hi Lorraine1
I will Ask about amend for next time. At least as you said for first 3 days. I know it's the best but I know also it's expensive. Will defo mention it to my doctor.x
Member

Re: January 2019 chemo starters

Hi Georgie and Val.  Another TN here.  

Well 10 days post chemo 2 and now got my taste buds back and nausea gone. So hopefully a pleasant 2 weeks and then will be round 3 of FEC .  Ugh.  Still got hair but coming out in handfulls so thinning nicely Smiley Surprised  

 

Huggs to all 

Member

Re: January 2019 chemo starters

Wantolive, sorry to read about your nausea - are your team prescribing Emend for you? It has helped me and made sure for the first two days after chemo I can manage, it's an expensive drug so I don't get it for longer so days 3-5 after chemo I had nauasea coming and going. If you're not already on Emend please do ask for it. xx

Member

Re: January 2019 chemo starters

Hi Chemo club🤣
Well that made me chortle. Got to have a bit of black humour in all of this...
I have been reading about your struggles both G and Helenbumblebee. I am glad you have had a port fitted G and that it will hopefully make this torrid journey a bit easier for you. I hope your se’s aren’t too bad this time. Well done for braving the school pick up with your new hair do, that must have been difficult.
I feel sad when I read about the difficulties you are facing Helen Bumblebee. I want you to know that we are all rooting for you with regard to getting a better time sorted out for your picc line. I wish you all the best as you go forward. It’s so hard to fight your corner when you feel vulnerable, but your strength is there, just under the surface and it will be there when you need to draw on it. So good luck.
Oh what a complete bummer that you are now spending the weekend in Casa NHS Sparkie. It sounds like you are putting a brave face on it. I hope that your WBC stabilises very shortly and that you receive great care. As if life isn’t hard enough. Sending you loads of healing wishes and that you will be back out with your babes tout suite.
Wantolive, I hope you are coping with your nausea. I too have felt much more nauseous #FEC2. I love reading your posts btw, they make me smile 😊 I hope you are getting a bit more help around the house this time.
B74, I hope you are coping with your second round of chemo and not struggling too much. I hope you managed to get your hair finally shaved and that your fasting has paid off in terms of se’s.
And finally, I am now 9 days post #FEC2 and maybe just maybe I have finally turned that never ending corner. It has been much tougher for me this time round. I have mainly struggled with nausea and low mood this time around. I have managed to get out for a walk on most days, a couple of miles at least and I feel that has really helped. I have tried to drink loads of water too.
So this week, I need to get out and about and catch up with friends to chase away those blues.
I have also also struggled *giggle giggle*with horrible flatulence this time, horrible toxic chemo induced flatulence and that has not been pleasant at all.🤣🤣🤣🤣 A horrible reminder of the poison in my body. We are really stripped of our dignity aren’t we? My God, I hope by the end of this torturous journey , I come out as a more understanding and better person after all of this. There has to be some benefits when you have been brought to your knees so many times....
I had an immediate reconstruction btw because I didn’t think chemo was needed at the time 😓😓😓 of diagnosis. My tumour was bigger than anticipated and a higher grade, so chemo was required.👎
However, I do have a beautiful diep reconstruction, after a skin sparing mastectomy. The only scarring is a circular disc where my nipple would have been. I will have a nipple tattooed over this to hide the scarring when all of this hell is over. So if anyone is thinking about a diep reconstruction, I can recommend. I had no problems with healing and had chemo 5 weeks after surgery. The surgery itself was tough, but not as bad as chemo.🤣🤣🤣 and at least now I have a flat tummy and will easily be able to wear a bikini again when the time comes. So I would give a thumbs up👍 to diep reconstructions, if you are considering that as an option eventually.
Oh I wanted to say welcome to all of the new ladies who have just joined this chemo club. 🤣 I would like to think that we are an inclusive club and welcome all newcomers and it’s great you have made yourselves known.
Ok ladies, have a lovely Sunday.
I leave you with love and lots of fight!
Sunnydaze xxx
Member

Re: January 2019 chemo starters

Hi Sparkie
Sorry about your blood count being too low. I really hope you will be on the mend very soon. Was it your first treatment? Being diagnosed while on maternity leave and having little kids must be very hard. But they keep you going though at the same time. Hope you have had a good night sleep.
Iam not working at the moment. Just do my art projects at home and sell them online. I also have little daughter she is turning 6 next week. Didn't plan anything exiting thus year for her. But will defo go out and have day of fun with her and my husband.
Have a good day girls. Lots of love
Member

Re: January 2019 chemo starters

Hi all! And welcome to chemo club Georgie and Val :-)

Iwanttolive - i was on maternity leave when first diagnosed and have now been signed off sick. I really couldn’t face working and have no intention of going back until this is all over. I don’t think I could do my job at the moment regardless of other commitments as my brain is very fuzzy and as it’s patient facing i’d constantly be worrying about infections. As luck would have it I am currently having a weekend break at Casa NHS as my white blood cells have given up the ghost and my attempts to duck coughing children have failed! Aghhhh. Nevermind, hopefully i’ll get some sleep now.

Good luck everyone who has a cycle coming up this week and well done to everyone who had a cycle last week or is recovering.

PS my ‘other’ hair sources have decided today’s the day to start shedding!! I am not too sad to wave goodbye to them but am counting down the days until my crew cut starts to leave me :-(
Member

Re: January 2019 chemo starters

Hi everybody
Iam second day from my second chemo. Feeling okay nausea nausea nausea. I ate everything I could to help. It does help but comes back again. I don't have any headache this time round.
Hi are you guys doing whose who had chemo yesterday?
George welcome! And good luck for Monday. You will be fine dear.
Looks like we all having different types of treatment here. I had mastectomy and reconstruction with nipple spearing already. But I can see some of you having chemo first.
What every you up to girls tomorrow I wish you all to feel better than today and have a great day with your families x
Does any of you work during chemo?
Member

Re: January 2019 chemo starters

Hi Georgie and Val, I'm from the Oct '17 thread and TN like you,sending you best wishes as you start your chemo x

Member

Re: January 2019 chemo starters

We will have to keep in touch 😄 there doesn’t seem to be many tripe neg like us x
G
Member

Re: January 2019 chemo starters

Hey Georgie, just wanted to say welcome and I hope Monday goes okay honey xx
Member

Re: January 2019 chemo starters

Hi all

 

I'm late to the January party but starting FEC-T this Monday.  A bit like cramming for an exam and just really starting to delve in deeper to the SE and remedies etc! And getting the hang of the forum. 

 

I have triple negative and over 2 ops I've had a mastectomy and axillary clearance. 4 weeks since mastectomy and feeling ready for this next stage to start. 

 

Going to browse through more now to see if there's anything I missed! 

Look forward to meeting you all. X

 

Member

Re: January 2019 chemo starters

Hello Helen

 

I'm due a picc line. They couldn't fit it before chemo number 2 (next Tuesday for me) at my hospital and wanted me to come into the hospital during my week 2 of my second EC to have it fitted and I refused as that's the week my wbc drops and I would have felt really anxious having it fitted then so I'm having mine done in week 3 of my cycle before my third EC. I imagine it's harder to bring an appointment forward, rather than put it back, so in your position I would ask for it to be done the week before your next (3rd) chemo. RE: hair, there are lots of things you can do like using oils for your scalp and shampoos that boost hair growth, even minoxidil was mentioned by a lady on here who was cold capping and kept her hair. I posted some suggestions lower down this thread and all are topical, with the exception of biotin supplements of which you should be able to ate 900 iu per day safely. Obviously run by your onc at next appointment. For anyone with sensitive scalps, chillow pillows are great. Can be bought on Ebay/Amazon for under a tenner and keep your head cool at night, just slip in between your pillow and pillow case. 

G
Member

Re: January 2019 chemo starters

Hi LB it isn’t heavy the hospital one, it is a simple light foam but something about it didn’t feel right and it didn’t really mould to me, all in all I stopped wearing it day to day. I had a quick nosey in John Lewis who had nothing and m&s who had basically the same as the hospital one just with a nipple and that too didn’t feel right.
I know some people plan to stay flat however I do intend to have an implant when all this is over so I just accepted not wearing one for now. I know u can get ones made for u etc which I imagine are good but they are expensive, so thought I would see further down the line whether this is something to invest in or not but hoping I won’t have to wait too long after chemo to get recon rolling as long as rads not required.
Then I stumbled upon this wonderful charity which was a game changer. Alas I have a neutral colour (cream!) I can’t believe I was so boring but I must own up to requesting it, don’t know why, you think after everything we are going through, making a brave colour choice for your knocker would be nothing 🤣 it does have lilac stitching though which is a smiley touch!
Anyway here’s to our knitted knockers 🥂(if only it wasn’t day 1 after chemo this could have been a real clink of the glass!) 😘
LB
Member

Re: January 2019 chemo starters

Hi G that's great to hear.  Is the one they gave you at the hospital very heavy - I've heard that they are so that's why I thought I'd get prepared.  What colour is yours? Mine's a lovely torquoise on the front and lilac mix on the back.  I love it.

Hugs x

G
Member

Re: January 2019 chemo starters

Hi LB I ordered mine too and came last week, never thought to post this, good call! Much more comfy than the one I was given at the hospital which for some reason made me ache.
X
LB
Member

Re: January 2019 chemo starters

Have any of you ladies who have had, or like me going to have a mastectomy, heard of knittedknockersuk. They are a charity and volunteers knit a knocker to your size that fits into a bra. I ordered mine when I was told that my treatment plan was to have chemo and then surgery. It arrived today and is absolutely brilliant.
G
Member

Re: January 2019 chemo starters

I would second this. Either try getting it moved again (they can only say no) to before ur next session or definitely move the appointment to nearer the 3rd session on one of your better days, I had mine done 3 days before. Sounds like picc is just as straightforward and I imagine less obvious scarring as I have another wound (on my good chest side 🤬) that will scar although should fade over time I guess.
Either way you have got this, you just don’t always know until in the moment and something gets you through.
Massive hugs xxx
Member

Re: January 2019 chemo starters

Hi Helen,

Just wanted to reassure you about having the PICC line, I had one throughout my chemo and I had no problems at all. It didn't hurt having it inserted or when taken out. It said on my letter that relatives couldn't come in with you, but they let my daghter stay with me, so it might be worth checking. Do you think it might be worth phoning your onc on Monday to see if they could sort you being fitted in before Thursday as it doesn't seem at all fair that they're making you come in the day after you've had chemo. Or if you've already had chemo on Thursday via your vein, can it be dalayed until nearer your 3rd chemo when you're feeling better? I don't know if the procedure's the same in all hospitals, but I had to lie on a bed to have mine fitted which wouldn't be good for you if you're feeling sick.

I don't know if I've already mentioned this, but I wore the travel sickness bands whilst having chemo and for a few days afterwards, so they might be worth a try if you haven't done already xx

G
Member

Re: January 2019 chemo starters

Just realised your name autocorrected from Helen to Humble...or the chemo drugs did it, sorry Hun ☺️
Ask as many questions as you like, we all have/will! I would ask why Picc is being suggested over port when you go as my chemo nurse said she wouldn’t have anything else other than port if she needed chemo as it is the most straightforward and easiest for the patient once in (even showering etc) although I know many have piccs so it maybe just as straightforward etc

Big hug xx
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Re: January 2019 chemo starters

Thanks so much G and B74, hearing other people's experiences really helps.
I'll ask on Tuesday, when I go for bloods and to see the consultant, about something to help on Monday week for the picc. As it's an assessment is Friday (Mum is taking me so I think I'm just going to take a bowl and towel and hope for the best, but dreading), I guess they might say a picc is no good, and that I need something else. Again, guess I just have to wait and see wgat happens, and then take what they recommend and work with that - I may be back on here being a nuiscance with nore questions!!
And the hair thing, it's shedding but only in the last 48 hours, so I guess I need to reconcile with that, and wait and see how long I can tolerate it for. I figure you know when you're ready, either because of the amount of shedding, or the discomfort (or both 🙈). Thankfully, the shedding's light and, unlike some areas of my body, I'm sensation-free at the moment. I suppose one or both of those will force me to make my mind up in due course.

I'm so pleased I've found you all - Superwomen in droves - to help me through this. It makes such a lonely journey thst bit easier. Thank you all so much 💞
G
Member

Re: January 2019 chemo starters

Hi Humblebumblebee, I have had a port which is different to a picc or Cath (which I think go in your arm but I didn’t really look into those too much). It goes in my chest but all under the skin so I can shower etc after the wound healed (more bio oil needed!) without covering it up. The left is a little more of a faff I believe as the tube thing needs to attach to the same thing it would if it had been on the right so takes a bit more pushing etc which was uncomfortable but it did its job today. They use a special needle that goes into the port under your skin.
I really feel for you with your veins and having to go through 2 cycles, I just had the one and that was difficult enough without knowing what is coming for the second. If they are not able to change it then I would ring up and ask if there is a sedative you can take at home before you go so at least mentally you are relaxed even if the physical awfulness has to happen. This is what they suggested I could do until they decided the port. I realise not the answer but worth a shot maybe?
xx
B74
Member

Re: January 2019 chemo starters

Hi HelenBumblebee, sorry to hear about the delay with the PICC line, no not something I’d want to have to deal with the day after treatment either. Do you have anyone who could go with you and sit in the queue for you while you lie down in the car? (For example)
With hair - I ummed and ahhed for so many days - should I bite the bullet? Or is it premature and should I hold on as long as possible, despite shedding and discomfort? Finally I decided to do it night before AC2 just because I didn’t want to cope with buzzing/shaving when sick and tired. There’s a big emotional difference between short and buzzed, but it had to happen sometime, now it’s a relief.
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Re: January 2019 chemo starters

Meant to thank you for being so lovely too. I thought I was tough enough but I am finding it hard now, and the hug is massively appreciated.
Did you use the cold cap? I'm just starting to notice hair loss yesterday/today, but elswhere seems a lot quicker, so should I assume the cold cap's working? I don't know if I should just get on and shave it off, or if that's unnecessarily drastic when I've only just started to lose it. It isn't hanfuls by any means, just all across my hands when I ran my fingers through it. I've always had long hair, but thought I should get used to having less before Christmas, so I had it cut short. Did you lose that much in a week that you felt you had to do it, or did you just feel you didn't want to wait and see how badly you'd be affected, and just bite the bullet? I don't know whether to do it or sit it out and only worry about whether to do it when it starts to show?
If I've had stinging and prickling elsewhere, should I be expecting the same with the hair on my head?
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Re: January 2019 chemo starters

I had my workshop day 2 days before FEC1 and when they assessed my veins, they said straight away that I'd need a picc, but there was no way it could be arranged before my first treatment. I was told it would be a week, that I'd go in on a Friday for an assessment, and then back on the Monday to have it put in, so it was all ready for FEC 2. Like I said, FEC2 is Thursday, and my assessment's Friday, with a view to having it put in on the Monday after. My arm is so painful now, but when I called to ask if I could bring the procedure forward to ensure it was done ahead of FEC2 as I'd been told it would be, I was told if it could be done sooner, then I would have been offered sooner. I got all emotional and had to get off the phone, so Friday it is(and only for assessment), despite the fact I'll be less than 24hrs post treatment and barely able to sit up, let alone get to the hospital and wait in what I've been told is a very busy clinic with long delays. Happy days.

My right arm can't be used due to full axillary clearance, so it's left or nothing. Is yours a picc or a cath? Why is it harder on the left?
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Re: January 2019 chemo starters

Wantolive, yes, totally agree. I was shocked by how quickly I felt all fuzzy after FEC1 2 weeks ago. Coming home, I felt drowsey but, within an hour or so of being home, my head was swimming, and not in a fun way.
G
Member

Re: January 2019 chemo starters

Wow Kip I love both pictures. It’s funny how my bold head is now not bothering me after two days, feel quite free from the worry re will it/won’t it, quite tiring in itself!!! School run this morning was a bit strange as I had a scarf on which looked more obvious than the hat thing I wore yesterday, people did look, as we all would, but not in anyway wrong, more in a wow ok then. I feel like me and our youngest achieved a lot today! I am such a hair person too so quite surprised myself here so if not happened to you ladies then I really hope it doesn’t but if it does, you will manage it I truly promise 💗

Second chemo done today and the port ladies was such a game changer! If anyone having vein issues do ask, the procedure was horrible, not helped because it needed to be on the left due to my lymph nodes in the other arm being removed and it is a more difficult procedure on that side. I also felt really vunerable on the operating table as you aren’t sedated or anything and all I could do was think about stuff and the journey here and where it’s going and had an emotional moment (ok I tell a lie, possibly 75% of the procedure was teary!). They looked after me and my mind obviously needed to do it so hey ho 🤪.
Enjoy your whatever kind of evening is on the cards for you (crisp, non alcoholic ginger beer, nausea tablets...rock and roll!) xx
Kip
Member

Re: January 2019 chemo starters

Ah thanks ladies,  not sure if its smiley and fun or "drugged up to the eyeballs".. but I'll take the compliment.  you'll soon be posting your new mad hairdos...

xxx

 

Member

Re: January 2019 chemo starters

I agree Kip, you look great in both pictures, you have lovely eyes and a smiley sense of fun. 😍
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Re: January 2019 chemo starters

Helen
Sorry about you having a trouble with phlebitis. Big hugs. You are very strong lady though. I can totally understand about being emotional saying good bye to your hair. Nothing to say here. Just remember this all will be over soon and we all will have our lives back. X
Member

Re: January 2019 chemo starters

Hi Kip
Your hair look amazing!! Honestly and you look so healthy!!!!!! Iam constantly covering my hair if not wig it's a scarf when I am home. So nobody see me without hair. ((
Kip
Member

Re: January 2019 chemo starters

 

 

hi January Chemo Campers!   I've just been reading through your latest posts (hope you don't mind) and it really brought tears to my eyes as you all deal with the hair loss.  I was transported straight back to that day when I braved the shave.  The head pain when its shedding, the prickleness when laying on your pillow (that goes once all the hair has), the worry and fear for your children.. bless you all... I remember it so well (and it was only a few months back).   Had to smile at the stories of hair disappearing "elsewhere".. I remember that too... mine fell out in my knickers virtually all at once... what a fright!   In terms of using something to encourage hair back... I use the Lush hair shampoo bar called "new"... its a little red circle thing.  I began using it when the first hairs starting showing and (also rubbed it into where my eyebrows once were).  I think I said before my hair began growing during the last 2 x T chemos, 4 months since the end of my chemo and I am having a little trim next week to remove the startings of a lovely mullet!  If I can I'll upload some photos. 
hang in there girls... you are doing wonderfully...this will make you smile.. the first place i remember seeing new hair growth was my toes....Bloody Cancer!!!

Kip.. heres my before and afters (and the after one was a month or so ago!)..  Excuse the eye bags.. just another joy of BCGrey hair.JPG

P1030002.JPG

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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!
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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!!!
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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
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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
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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 🤗