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February 2021 Chemo Starters

LottieLaing
Member

Re: February 2021 Chemo Starters

@carole_balmedie .... Hi Carole... been thinking of you and how your last chemo went as noticed you havnt been on and hoping you are ok. I had my 2nd EC today... I know now to take antisickness before sickness starts and I can mix the two different kinds so hopefully the nausea won’t be as bad this time. I’m feeling really sleepy already though and just had it a couple of hours ago 😂 xx

Linda x

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi Teagold,

I think mine has been a pretty extreme reaction to the EC. My neighbour has been having it three weekly and has been fine with it, so I do think it depends on the person. I also met another person at the hospital who has been fine. I would just say keep on at the hospital to change your meds if you are still feeling rough. I have ended up with Lorazepam for anxiety which has helped me hugely, although I do know it can be addictive. 

I am actually feeling a little better today, still just taking it easy, but my appetite seems to be coming back a bit. Hooray! Does anyone else struggle with very poor appetite? 

I’m also getting counselling courtesy of Macmillan and am signing up for some virtual relaxation classes run by the support group at our hospital. 

 

All the best to you for your next one. 

Siân xx

Kaz11
Member

Re: February 2021 Chemo Starters

@Teagoldyour friend sounds so supportive and just what you need at this time.  Even thinking of those 42 links is amazing.

All the best for today.  Big hugs winging their way to you.

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

Thx for the pic @Gelbel - I will have to start getting my head around all this soonish. 
@Kaz11 congrats on finishing the EC, and amazing to think you’ll be halfway through when you next go in. A friend texted me this morning with lots of references to the number 42 - Level 42 songs, the hitch hikers guide to the galaxy etc - to remind me that today I’m 42% through my first phase - so sweet. 
@hopeful1974 everything you described in your post is what I’ve had this week, so I just wanted to say big hug and you’re not alone. I’ve just managed to make it to hospital today which I honestly don’t think I could have managed yesterday! I’m a bit apprehensive as my EC will be fortnightly and sounds like it’s going to be really rough - well done to you for getting through it and hope you’re starting to feel better now.

strange yellow thing in the sky 😂😂 - it does make a difference though.

fingers crossed for treatments ladies - big hugs tg xx 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone 

Firstly want to say Sam you look great and welcome @hopeful1974 to the forum.

I had my last EC yesterday (yay!) so hoping that this coming week will be my last really yucky one.  Also this will be my last set of injections so that will be something else to cross off.  By the time my first weekly is due on 8 April I will be at the halfway stage in the chemo in terms of time so that is keeping me going.  The nurses told me that the weekly paclitaxel should not be as harsh on my body so hoping that’s the case.  The senior nurse also told me that there is the possibility I may be able to take something herbal for the menopausal symptoms post chemo depending on how I get on with the tamoxifen or whatever tablet they give me going forward so all not lost on that front either.  Finding the flushes and sweats hard going on top of everything else.

@Gelbel your prosthesis looks great and so glad you are happy with it.  Post surgery even although I had the expander implant fitted it was not inflated so I was given 2 sizes of softie home with me.  The large made me look completely out of proportion so I used the smaller one but didn’t find it very comfortable.  I had several inflations post surgery so it fills my bra more now.  The plastic surgeon said it is not at capacity yet (the strange conversations you have to get used to during all this).  It will never be the same size as my other side and he wants to do surgery to reduce my other side but I am not keen.  The inflations have stopped at the moment during treatment so not sure if they will be able to resume later as my skin will have settled over several months I would have thought so would imagine some stretching would be involved.

Anyway have a good day everyone.  There is a strange yellow thing in the sky today which I believe may be the sun so going to take advantage and get some washing out and go for a walk while I have the energy to do so.

Kaz11x

LottieLaing
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974  ... yes I think you probably would have coped better with the 3 week interval.. the 3 rd week is my best week.. 2nd not been too bad though. Had nausea, acid reflux and just really tired with various aches and pains and you think 🤔... what’s that? 😂... but as you say ... it’s done now... on to No 2. .. you’ve done your 3 so well done 👏🏼💪🏼♥️

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @Teagold 

This is my (not so) little baby 

Right, it's chemo time. 

See you on the other side. x

hopeful1974
Member

Re: February 2021 Chemo Starters

Lovely to meet you and thanks for the welcome. A friend of mine found Paclitaxel much easier than EC, but she did not have the additional Carboplatin, so that could be what tipped the balance. I am going to ask my oncologist if he can manage the doses as I am not managing well after my last EC. Zero appetite combined with diarrhoea and time of month is not an ideal combination! I just feel very weak but find it hard to rest. Xx

 

Teagold
Member

Re: February 2021 Chemo Starters

Forgot to say @Gelbel great to hear that the fitting went so well and really helpful to hear about it, I’m a few months away from this stage so it’s useful to get a picture of what to expect when the time comes - thank you! X 

Teagold
Member

Re: February 2021 Chemo Starters

Hello everyone,

can’t tell you how much it cheered me up this morning to log on and see everyone’s messages and your super glam photos Sam - you look absolutely amazing!

Big hello also @hopeful1974 - lovely to have another Feb buddy here, this group gives me a boost everyone time.

I’ve been pretty out of action this week, had my 2nd carboplatin last Friday and once the steroids wore off (Tues) I pretty much hit the sofa and couldn’t do much else. I’m due back in today for my 5th paclitaxel and bit nervous that with feeling so rough my bloods might be too low for me to have it but I really hope I can especially if I manage to haul myself in to the hospital!! 

Just on the subject of side effects with the weekly treatments, generally up to now I have been ok so I think it’s the double whammy of drugs that got me this week. Hoping next week might be a bit easier. Also re hair loss - mine still thinning, but I think it’s mainly on top where the cold cap hasn’t been fitting tightly so I’m taking something in today to stuff the cap and hope that helps a bit. 

Thanks also ladies for the reco on gym wigs, I’m going to get one of those too - they look great. 

Big hug to those of you having treatment this week/today - one more step along the road etc - and peaceful relaxing weekends ahead for us all I hope.

tg xxx 

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi Linda,

 

Thanks for replying. It is nice to meet you too. I wish you all the best for today. I think I may have coped better with three week intervals as I have not had many ‘good’ days in between treatments. Never mind, it is done now. Have you managed ok with the side-effects? I know everyone reacts differently. 

Siân x

LottieLaing
Member

Re: February 2021 Chemo Starters

Hi @ hopeful1974 ... you are on same treatment as me .. but I get my EC every 3 weeks.. my 2nd being today. I started on 26th Feb. I havnt been told how I will get my next lot of 3 yet. Nice to meet you and will look forward to hearing how you get on. 

Linda. X

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi everyone, I hope it’s not too late to join. I started chemo on 09/02 and had my third and last EC on Friday 12/03. I am moving to Herceptin (Pertuzumab and Trastuzumab) combined with Docetaxel next Thursday (25/03). They will be giving the Herceptin drugs on Thursday and Docetaxel on Friday for the first lot to monitor for reactions. 

I am really hoping for an easier time on the next drugs as have found EC pretty hard, but not sure whether I am being overly optimistic! At least I will be on three-weekly cycles with the new ones, whereas I was on two-weekly ones with EC, so I haven’t had many ‘good’ days in between treatments to feel normal again. On the plus side, it does get it all out of the way more quickly! 

Anyway, I am looking forward to being part of this group as I’m feeling a bit isolated what with having to shield and I also think it’s really important to talk about your treatment and what you’re going through.

 

Siân x

 

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone 

Thinking of those who are having treatment today or tomorrow 💕💕

Wow @CrazyCatLady you look so glamorous in your photos and so pleased you are feeling better this time after your treatment. 

@Gelbel so pleased you had a good day yesterday having your fitting and it’s much more comfortable for you. 

sending love and hugs 🌈xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @Gelbel - fab news and who knew getting a prosthetic could bring so much joy 🙂  So glad you're recovering well from surgery and can still use your normal bras.  Had a look at some post-surgery ones and most are pretty 'granny' style...but heard that M&S have some pretty ones so may give them a try after my surgery done.

Also forgot to say WOW to you too about your treat....can't really justify that for one of mine as only got my new pap-pap last January - a bright red Fiat 500 and it's brilliant to drive and so easy to park (which I'm terrible at lol)!

You look fabulous in your pic too....and I'm already an advocate for Bare Minerals powder foundation (or L'Oreal True Match is good too).  Normally only get the BM stuff at duty free, but hey ho, not last year or this year.  It's pricey but well worth it.

Glad you had a good day and hope all goes well for Friday xx

PS - thank you for your lovely comments to about my make over.  First day I've felt 'normal' in ages....the old slap does make a huge difference xx  Oh and I actually went out for a walk later that day and not one sideways glance 🙂

Good luck if you're having treatment this week and as always, may the side effects be minimal for you all xx

Sam x

Gelbel
Member

Re: February 2021 Chemo Starters

@CrazyCatLady /Sam wow, wow, wow. You look stunning. 👌

Sorry to hear you've yet more side effects. I hope they get sorted and things adjusted so you don't get them (so bad) next time.

I am really happy. Got my prosthetic boob today. Had a lovely good half hour with the wonderful nurse fitter. She guessed I was a size 8, nope, tried a 9, then claimed I was very deceptive and tried a 10. Seems I am a 9.5 and they don't do half sizes. So after much chopping and changing of sizes in different bras (thank goodness I took 2) and pulling my low v neck jumper tight we went for the 10. Nurse not 100% happy but an untrained eye won't know.

I can't tell you how great it is not to have my MX side ride up and to have a bit of weight back on that side. I tell you, you could do a right damage to someone if you used your bra and silicone boob as a weapon (think snooker balls in a sock a la gangster). 🤣 The prefect murder perhaps? 🤔😈

If I'm not happy I can change it. They can arrange for pockets to be sewn in my ordinary bras FOC. Speaking of which, I asked about my underwired bras. She said some ladies never use mastectomy bras. I don't really like the shape of my real boob without a wire. So... I only tried my favourite one on when I got home. Fitted like a dream, didn't hurt, ok so it was a little bit uncomfortable on the side (I have a nice side boob and my scar ends at the tip of it). If I was going out, out tonight I'd wear it. 👊 A tiny bit of normality in the strange world of hospital appointments and chemo I find myself in.

Most of my underwired bras have like a half pocket that's next to the skinside (if that makes sense) so I'm not going to bother with pockets for all of them. I'll ask about dropping those that don't off next check-up appointment.

And the nurse said my scar look lovely and neat, and my arm range of movement is excellent. 😃

Lovely couple of hours out all round. And now just counting down the hours to EC #3 on Friday.

Best wishes and hugs to you all. 🤗

Love AnGELa x 

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hello all my lovelies - hope today is treating you well xx

Looks like I 'may' have got away with less SEs for cycle 2....currently on day 6 and other than sore mouth and the usual 'digestive' issues, am OK.  However first 4-5 days I was literally stuck to the sofa and couldn't function at all, especially with the nausea/sickness kicking in.  Definitely gonna have to have a word about my meds for cycle 3 when I seem him on 30th March!

Onco did OK me to use Nytol so had one last night and....still no blooming sleep arrghh.  Ah well, will try again tonight and fingers crossed.  However, looks like I've another call to make to the response line as this morning my mouth/gums bled like a swine when I brushed my teeth so may have an infection.

Also finally got my invite for my covid jabs so these are now booked in for 28th March and 13th June....just hoping I don't get any awful reactions (apparently quite common for lymph nodes to flare up for a few days).

So.....I too have been having a bit of an experiment with make up, lashes and wig and, even if I say so myself, I don't scrub up too bad (think I look a bit like Fern Britton from a few years back lol!).  I have also included a 'before' pic so you can see exactly how rough I look without make up and the difference it can make.  I would be more than happy to venture out in this get up....everyone says it's not obvious it's a wig.  Plus think we always feel better once we've got the slap on 🙂

Not to shabby!Not to shabby!The new ME!The new ME!LashesLashesBefore make overBefore make over

 

Hope this gives you all a bit of hope that you can and will look good....with or without hair xxx

Love to you all 😘 xx

Kaz11
Member

Re: February 2021 Chemo Starters

Thank you @ktruffin.  I was told that too that the cold cap encourages regrowth.  I will try and persevere with it and see how I get on tomorrow.  Have a list of paclitaxel questions on my list.

Like you I still have some hair clinging on which I am loathed to cut off.  With a hat on it looks like I have more than is really there as the longer bits at the side are still there at the moment so they hang down underneath as they would anyway.

Have a good day everyone.

Kaz11x

ktruffin
Member

Re: February 2021 Chemo Starters

keep going with the cold cap if you can tolerate it as there is evidence it helps with hair regrowth as well as preserving what we’ve got. 

I can’t speak for Pacitaxel as I am on docetaxel where there is hair loss pretty much guaranteed.

 

I have lost a lot on crown but going to persevere as my fringe and bits round edges help when I have hat on and in the summer I plan to rock some straw hats as it grows back underneath. Planning to knit some light “scull cap” beanies so I don’t look weird around the house to the kids

 

Kaz11
Member

Re: February 2021 Chemo Starters

@Gelbel My notebook has Bashful the dwarf on the front.  Our operatic show last year was 9 to 5 (probably one of the last shows in the UK in a theatre pre Covid).  In the dream scene I played Bashful and made up notebooks for some of the others who were Doc and Grumpy.  It has been my notebook with all my questions/info in and the list is growing longer for Thursday as we speak...

Also ordered a gym wig in the mixed praline colour which I will use when I am walking to avoid having to wear the “guess who is going through chemo” beanie so thanks for the link to the website much appreciated.

Night night

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Ah the notebook @Kaz11 Mine is bright pink, glittery and has a prancing pony on the front. It was a leaving present from a job - private joke too long to explain. The postcard of the Mona Lisa saying I need a poo (don't ask!) I also had at the same time often falls out at the wrong time. A reminder of a lovely team who worked hard and played hard.

So I had it in front of me for my appointment earlier: re steroid reduction. They'll still prescribe 2 x twice a day for 3 days after chemo so the suggestion is to take 1 twice a day but make sure I take full quota of nausea meds. Indigestion tablets prescribed. The infused amount just before chemo will stay the same (oh wonderful, that burning sensation).

Re next steps: at the next check up (6 April) I'll see a consultant and we'll discuss whether to have 3 x 3 weekly Dox or 9 x weekly Pax or a combo of both. It all depends how I am with the side effects this time. Though it can't be promised because "everyone's different" if I had weekly there should be a few blugh days and some 'normal' days. Not the 9 weeks of feeling permanent off. 

I chatted to the Macmillan centre woman about when the complimentary therapies are restarting. I want my tootsies tidying and could do with something that will stop the tension I can get in my jaw. Bit of 'stop eating like a pig hypnotherapy when you're over steroids' won't go amiss either!

Exciting day tomorrow - prosthetic fitting. I do get annoyed at the softie riding up a bit. And as I have to walk passed the door, going to bob in our Maggie's centre.

Nice day. And the weather helped. 🌤

Love AnGELa x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi @LottieLaing @thanks  for the advice, ice lollies are very soothing and have not tried frozen pineapple before but will give it a go 😃. My 3rd cycle of EC is the 29 th March then  going onto weekly For 9 weeks . How have you been with your first cycle? 

🌈xx

 

 

LottieLaing
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 ... when is your next chemo? You need to try it. Eat lots of ice cream too if you can or ice poles. Frozen pineapple chunks to suck on. Try manuka honey too it’s meant to be good for the mouth issues. What chemo cycle are you on? Xx

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello @Gelbel  

Are you still in your onesie or has the weather decided what it’s doing  yet 😄

I keep thinking about the effect of the weekly treatment too as like you said you start to pick up after a week of 3 weekly cycle . How long do you normally have steroids for after your treatment? Hope you get all the answers to your questions at your appointment.

sending love 🌈x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi 
@LottieLaing oh I not heard of that before sucking ice during infusion helping with mouth ulcers -thanks😁. Getting better each day just so uncomfortable when swallowing - difflam spray is helping.  I start my filgrastim on day 5 of my Clycle that’s how it’s prescribed on my label, must prescribe differently at some hospitals so don’t worry you haven’t mucked up you. Can’t wait for last one tonight they make me feel achy, headachy and light headed. How do the injections make you feel ?        

@Kaz11 for the weekly treatment I was told I would need to cold cap for just 60 mins after treatment rather than the 90 mins for EC. I also sit with it on for 30 mins prior. It certainly felt colder 2nd time and it just made me feel.

 


Sending love 🌈xx

Kaz11
Member

Re: February 2021 Chemo Starters

Thanks for you post @Evie-S.  No probs re jumping in.  It’s better to know so that I am prepared.  I found the cold cap colder the last time as there was less hair for it to make contact with so will be worse this time.  Will see how long I can persevere and see what they recommend at the hospital.  Like you it’s the crown of my head where it has gone the most.

Thanks fof your advice, much appreciated.

Kaz11x

Evie-S
Community Champion

Re: February 2021 Chemo Starters

@Kaz11  - apologies for jumping in on your group, but I just wanted to share my experience with taxel, cold cap and hair loss as you mentioned it in your post. I started with taxel, and had FEC second, and also used the cold cap. My cold cap wasn’t fitted very well on the top of my head so I lost a lot of hair on the top of my head during taxel, so I gave up with the cold cap as it left me with a rather odd look! I just wanted to warn you that taxel can also cause hair loss.

Best wishes to all in the group going through treatment. Evie xx

Kaz11
Member

Re: February 2021 Chemo Starters

Ps the gym wigs look great.  Might invest in one of those too for when I go out walking.  Thanks for the details @Gelbel 

Kaz11x

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel @LottieLaing 
I have a big list of questions too re paclitaxel weeklies when I go for my last EC on Thursday.  It was my Someone Like Me contact who said she didn’t find the weeklies as bad - she said she didn’t get the crashing lows which she did on EC which made me feel better.  She also said it is the EC which causes hair loss and the taxel doesn’t so I wondered if the hair loss would then stop - another question for Thursday.  Think they dread me coming with my notebook in hand! My contact also said she wasn’t sure if I would need to continue with the cold cap during taxel if it doesn’t cause hair loss anyway but to be fair she said not to take her word for it as she didn’t use the cold cap anyway.  Will ask the nurses on Thursday. I have a feeling I’ll still need to use it unless I say I’ve had enough of it.

Just washed what is left of my hair and although some came out it wasn’t as much as last week so I am going to cling onto what’s left for a bit longer.  Know what you mean re looking at it that it’s cancer hair as the texture completely changed anyway and it doesn’t look like it did.  Think that’s such a positive way to look at things that it’s new hair for a new you post treatment.  I am hoping mine grows back thick instead of the fine stuff I had.  Always wanted thick hair that would hold a style instead of mine losing all shape with the slightest puff of wind!

Also contacted hairdresser yesterday so she is going to thin down my wig again as it still felt a bit full for me.  Wore it all day Saturday for the first time and tied it back for my zoom quiz so no one noticed which for me was a result!

Off to do some housework while I have the energy and inclination!

Kaz11x

LottieLaing
Member

Re: February 2021 Chemo Starters

@Gelbel ah yes I seen them before they look fab ... my hair was going grey so I’m sticking with grey and they have a grey one too ... thanks for sharing xx

Gelbel
Member

Re: February 2021 Chemo Starters

@LottieLaing Not got a photo of me in it - and won't have it on till Thursday as I'm also out tomorrow. Here's where I got it from

I got the Swedish blonde one. Their comms are awful and it took 10 days to come but worth the wait. When I ordered I forwarded the order to their email address to ask for the coloured band I wanted. 

LottieLaing
Member

Re: February 2021 Chemo Starters

Hi @Gelbel ... gosh I love the sound of that wig... could I see it if possible? I’m not on Facebook but I’m on insta and messenger or WhatsApp if you want to add me xxx

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @LottieLaing obviously I can't speak for you, I found braving the clippers liberating. I've still a tiny bit left and a few patches of downy white 👊 growing. Think how much money I'll save on bleaching if it all comes back white.

I got a 'gym wig' looks, like you've brushed your bob off your face and have used a thick hairband to hold it back. I use it for my day to day wig as it's very functional. Pal who bobbed round Sunday said that it looked ace. I have a fake fringe but don't really like it just because it needs a beanie or turban.

@Kaz11 good to hear about the weekly Pax being not so hard on the body. Did they say what compared to? 3 weekly Dox or EC? I'm going to ask 10s Qs about the weekly regime at my appointment later. I am concerned about feeling off for the duration rather than grotty for one week and ok for 2) My last EC is on Friday. Going to ask for the steroids to be reduced too.

I hope you all enjoy the weather... if it arrives. I'm in a lounging onesie while it makes its mind up before I decide what to wear out. 

Love AnGELa x 

 

LottieLaing
Member

Re: February 2021 Chemo Starters

Aww @Kaz11  I’m sorry to hear that .. especially when you had been using cold cap too. Oh mine is definitely not going to get detangled it’s awful today.. so clippers it is..yes it is very upsetting isn’t it but I’m trying to look at it like I’m getting rid of the hair I had when I got cancer and when we are clear we can have a fresh start with new hair too. I’ve got some nice velvet turbans I got on eBay and they actually look quite nice. I’m going to purchase one of those fake fringes that you can just pop under it at the front so it looks like you still have hair too. Xxx

Kaz11
Member

Re: February 2021 Chemo Starters

@LottieLaing I know how you feel re the hair.  I hadn’t been touching mine as thought I wasn’t supposed to then when I went to wash it pre my last EC like yours it went into a matted ball at the back of my head.  Spent ages trying to detangle it and ended up having to cut a piece off which resembled a cat’s furball.  All very upsetting.  I was told by the nurses that the hair which was going to shed got caught up with the hair which was staying and that’s why it matted and is quite common.  Nevertheless was still traumatic.  Apparently I should have been combing it twice a day which I wasn’t aware of which upset me too as made me feel like it was my own fault and enduring the cold cap had been a bit of a waste.  Anyway hope you manage to detangle and you maybe won’t need the clippers.  Fingers crossed for you.

Kaz11x

LottieLaing
Member

Re: February 2021 Chemo Starters

@Kaz11 ... ah yes I found doing injections more of a thought as the week went on too 😂... talking about hair. Oh my goodness I wear mine up in a bun and the matted mess it has become is awful today so I’m getting my daughter to come over and cut the matts out as no way can it be detangled 😂... then it’s clippers for me today. Once it’s done I think I will feel better for it too to be honest as I’ve been postponing the inevitable.xx

Kaz11
Member

Re: February 2021 Chemo Starters

Mornin everyone 

@carole_balmedie yes fair wabbit is a very good description of the feeling post chemo!

It’s hair washing day for me today so am nervous about how much more will shed.  I was advised by the nurses to wash it today ahead of EC number 3 on Thursday.  At least it is the last one of these before moving onto the weekly paclitaxels which I am told should be easier on the body - here’s hoping!

@LottieLaing I start my injections 2 days after chemo ie Saturday for 7 days. They always print the start date on the boxes which I get.

Again I have been told you don’t need to do the injections when you are on the weekly chemos so am looking forward to this being the last lot I have to do.  I know it only takes seconds to do it but I still have to psyche myself up each time.

Have a good day everyone.

Kaz11x

LottieLaing
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 ... thank you for welcome also... I have 2nd chemo of EC on Friday... I’m sorry you had throat ulcers that sounds painful ... I did hear someone say that sucking ice during infusions help with mouth problems? Has anyone tried this? 
The injections? I started mine on the Sat after having chemo on Friday? Did you do yours a week after? I’m hoping I’ve not mucked up 🙈 xx

carole_balmedie
Member

Re: February 2021 Chemo Starters

Thank you for the welcome @Rainbow70 😊 2nd EC for me on Thursday, hope the side effects are the same this time, but have a feeling they may accumulate or have you all found they follow the same pattern?

Love the peely wally phrase @Kaz11, I must admit I was fair wabbit the first week after EC 🤣

have a good week ladies 😘

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone 
Hope you are all doing ok and a warm welcome to Carole and LInda. Sorry you are here too but we are all  for each other ♥️

Had 2 nd cycle of EC last Monday , new sickness tablet helped avoid sickness this time but nausea still quite bad and very woozy. Started injections Friday night and then sat morning woke up with ulcers back of throat . Knocked me back a bit have some throat spray which is helping. Last injection tomorrow so hopefully will start to feel better Wednesday. Last EC 29 th March then weekly Paclitaxel - I hope it’s right what they say side effects more bearable if given weekly !!!

also was shedding hair quite bad last week so took the plunge and had it clippered on Saturday no 3 . Hubby did it , we both had a cry but I was getting more upset seeing it coming out so fast . I’ve started wearing my wig now . So no more cold cap for me , as soon as they put it on last week  I felt so nauseas and had a headache . 

Sam and Angela you both look lovely. @Leftygurl sorry you have had a bad experience with your Portocath , I hope it is all sorted for you. 

sending love to you all 🌈

Kaz11
Member

Re: February 2021 Chemo Starters

Thanks so much for that info @Teagold that’s really helpful.  It’s the top of my head where mine is shedding most too.  Felt the cold cap was digging in a bit there at my last treatment too so they undid the chin strap which maybe loosened the contact a bit too.

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

Hi @ktruffin 

It’s Daniel Field scalp cooling booster, was recommended by my BCN. Not cheap but thought it might be worth a shot. Tried it for first time on Friday’s treatment so will be a few weeks before I can see whether it’s having any effect. I think mine is mainly shedding from top, and when I spoke to him he said often the cap doesn’t fit as tightly there (especially if you have a parting where the hair dips) plus it’s the warmest part of your head so hardest to cool. His advice was to take something along to put between the hard and soft caps to wedge it down, so I tried that too. 
Who knows whether any of this will make a difference but I just felt I had to try everything I could.

Hope everyone is doing as ok as possible on this Mother’s Day. Hugs to everyone. 

tg xxx 

ktruffin
Member

Re: February 2021 Chemo Starters

Hi tg

What are the products you mentioned that help the scalp cooling - pretty thin on top now so dreading my next cycle!

thanks lovely 

k

Gelbel
Member

Re: February 2021 Chemo Starters

@Teagold you can stretch wigs. I knew mine were going to be very snug as technically I'm a large. No funky colours or styles in large. As I liked mine enough I stretched them. Of course no sending back afterwards and you could overstretch. I pulled from front to back as much as I could, like stretching an elastic band for 30 seconds. Then I needed a bit more so stretched one of the expander thingies for 30 seconds. On my shorter wig (same brand/ colour) I had to stretch the 2nd expander. I can tell they are a better fit as I don't have a little dome at the top from where they weren't low enough on my headroom being too small.

Both are fine now. TBH they do feel better now I've hardly any hair and better still with a cap (something to grip). Perhaps you need a cap to smooth down your hair? They don't budge when I bend over and shake my head. Didn't budge in the howling gales yesterday. 🙏

A pal, who asked how I got on yesterday, told me earlier that it takes hell of a lot to shift them once on properly - even drunken escapades! 🤭 I didn't know her then! Apparently she used to wear them quite often when she hated her roots or she'd messed up a box colour. 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

@Teagold I was the same re the jab.  Oncologist told me to ask my GP about it so as I was getting chemo they have me the first dose of the vaccine at the time the over 80s were getting it (!) but effectively it meant I then had to go on the shielding list too.  2nd dose due in April.  Oncologist said I was to get it regardless of when it is in my chemo cycle unless it clashed with a chemo date which it doesn’t.  Think it’s due 2 days before one of my weekly sessions.

@Gelbel you look fab.  Wig looks amazing.  Know what you mean re the hair - seems to be everywhere although that’s a new one being in the curtains and pole!!!  Like the comment about protein in the soup.  If you didn’t laugh you’d cry.

@Teagold will need to check out the vaccine reports too.  Bit awkward that your doc had written stuff and you’d not seen it.  Sounds like the kind of thing which would happen to me!

Alice so sorry to hear you have had such a hard time.  I have a portacath too.  It was very tender after it was done and my neck ached so much I had to try and sleep sitting up that night.  Didn’t help that first chemo was the next day.  They said they were giving me a sedative before the procedure though I can’t say I felt very woozy and wondered if they had actually forgotten to give me it.  Mine sticks out quite a bit but it has helped when they have taken blood and been administering the chemo without having to search my hand for veins which go into hiding as soon as I go through the front door of the hospital.  Sending you massive hugs and hope it gets resolved as the portacath is meant to help you not make things worse.

Mixture of sun, hail and rain here today so haven’t managed out for a walk.  Fingers crossed for tomorrow.

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

Hello ladies,

Alice I’m so so sorry to hear about what you’ve been going through, I was thinking about you this morning and wondering how you were getting on. I’ve got a portocath, only had it two weeks, all I can say is that it was tender and sore for the first week and a bit in the second week especially if I was doing anything more strenuous than walking. But nothing like what you’ve described and I really feel for you, I hope they can fix this for you very soon. I think that any setback in our plans will feel very frustrating, when I was waiting for my blood test results back yesterday I got very anxious about what if my levels were too low for treatment and what that would mean etc - all these new things we have to deal with. Big hugs to you and hope you feel better soon.

@Gelbel love the photo and make up tips. I am in the market for any eyelash serum recommendations. 

I got my wig delivered today, I love the cut and colour but it feels like it’s riding up a bit at the forehead so I wonder if that means it’s too small? Then again it’s going on over a fair bit of hair left so maybe will fit better as more hair goes. I’ll call the shop on Monday, I have to say how lovely and empathetic all the people I spoke to about wigs were - this whole new world that supports ladies like us going through this treatment. 

@Kaz11 I was told yesterday that although I’ve had one dose of the jab I need to effectively shield until I’ve had second. There’s been a new report out on it, apparently it was on the bbc. My doc asked if I’d seen it, I said no, he then said he co-authored it so I feel guilty and must read it before I see him next 😳.

Hope everyone is having a peaceful Saturday despite the weather.

tg xxx 

Gelbel
Member

Re: February 2021 Chemo Starters

Photo added to my makeup post. 😱

Flipping heck, I washed the net curtains today. Finding hairs all over them and in the bit where the pole goes. What's that all about? You do something normal and blooming BC won't let you forget it. Bet there's some in the soup I made... just as well I stuck the blender stick in. 😋 #ExtraProtein

Kaz11
Member

Re: February 2021 Chemo Starters

Thanks @Gelbel you should be a make up consultant!  Fabulous tips thanks so very much.
I have been using Lipocils on my eyebrows/eyelashes and they are holding on so far.  However my eyes are watering quite a lot now so think that maybe contributed to the puffy eyelids although they are better today.  The full slap will be going on tonight for the zoom quiz after following your tips! I have been using Il Makiage foundation which I came across on Facebook.  I like the coverage as it’s not too heavy.  The colour match is excellent but think I’ll need to use a bit of bronzer to lift the colour so I don’t look so peely wally (good Scottish phrase which describes my paleness right now!)

I have to get a bone strengthening drug every 6 months for 3 years.  Not sure if it’s the same as you and I haven’t had the first one yet.  Got the impression I might get it at the end of my chemo cycle.

Thanks again

Kaz11x

Leftygurl
Member

Re: February 2021 Chemo Starters

Thank you @Gelbel , that means a lot xx

Gelbel
Member

Re: February 2021 Chemo Starters

Oh @Leftygurl / Alice,  that's horrible. I can't share any experience as I don't have a Portacath. I would ask/tell them to check none of the surrounding area was pierced in error when it was put in. Sounds like something went a bit wrong when it was put in.

Don't apologise for your post. It's what we're here for. And I'm glad you had the strength to share with us. A problem shared is a problem halved. I hope it's helped that you have. 🤗

It's lovely that you met someone who understands. It's so much easier whe. You don't have to explain the details isn't it?

I hope you continue to improve.🤞

Love AnGELa x