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January 2020 Chemo Starters

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Re: January 2020 Chemo Starters

Hi 

I have been diagnosed with triple negative breast cancer on 10th January and due to start chemotherapy on Tuesday 4th February . I have appt with pre assessment unit on Monday. The treatment is paclitaxel on a weekly basis with carboplatin every 3 week then on to phrase 2 of Epirubicin every2 weeks then cyclophosphamide  for every 2 weeks for the 24 weeks in total followed by mastectomy. I am experiencing on going chest pain since Oct which numerous visits to the Emergency Department stated chostocondrotis it is only now i have been told its BC and pain is caused by the necrotic node pressing on my nerve. The tumour is is my right breast with lymph nodes 2 axilla tested positive . Im really struggling at the moment to cope with all this sudden news and worry for my two darling children who have been so good ( Daughter is 18 and son 15 ) . They have been so supportive as well has all my family and friends. I just feel so scared of the thought of chemotherapy and what to expect. What im finding difficult is the amount of pain im experiencing which isnt responding to medication  as im experiencing side effects such as dizziness and cant get out the house im going from bed to chair so struggling to keep busy as i would normally be positive and keeping busy  ? Thank you for any replys xx

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Re: January 2020 Chemo Starters

Thank you Mai7! I’m currently trying lots of different flavours x

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Re: January 2020 Chemo Starters

Hi Catd2504, the tastebud effect should be temporary.  I didn’t have problems on FEC beyond the first day but on Docetaxol (the “T“ in FEC-T) my tastebuds suffered.  They recovered by week 3 and now fully recovered.  The hardest thing was struggling to drink water. I added lemon slices to water or drank herbal tea (lemon & ginger), added spices to food and found flavours like mango, passion fruit or rhubarb were nice and tangy without being acidic.  Sometimes my tastebuds felt that food was slimy or like cardboard so I struggled with textures too.  Quorn cottage pie worked well.  Hope this gives you a few ideas to experiment with.  You will find some foods which suit you but you have to sample a few before you find what’s right for you. Xxx

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Re: January 2020 Chemo Starters

Hi Jem

i completely understand how you feel and agree about our hair being our safety blankets. I found a really good website / shop which sells hair attached to hair bands. I bought a long one then returned it for a shorter one as I had my long hair bobbed in the hope the cold cap would be more successful. I haven’t need to wear it yet but it does look okay especially with a beanie on as then it just looks like my normal hair -  I don’t think anyone on the school run would be able to tell the difference! I think it headscarves by Ciara1.  I also spoke to a wig shop who said see how the cold cap works and then pop in as a hair piece just to cover the thinning might be fine.  Second one Wednesday for me too! 🤞😬
My taste buds come and go - some days things are normal then other days I can’t really taste anything. Also find I’m eating just because I’m bored so need to try and stop that! I do agree with trying to get out in the fresh air for a walk as much as possible. Anyone tried Nordic walking? I love it - walking with poles. it really de stresses you, keeps you fit But isn’t as taxing as running. I found I could get out most days even if I was feeling a bit spaced out still from the chemo as the poles helped to keep me steady! Xxx

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Re: January 2020 Chemo Starters

Sunnybear, I had Herceptin finished end of February last year. I only had it once chemo was over started about 3 week after last one a few weeks before starting radiotherapy. I suspect it’s the Taxol that’s making you feel fly like rather than the herceptin. I tolerated herceptin quite well and felt largely ok. However, a few months after finishing herceptin I realised how much better I felt. I found a spoonful of 15+ Manuka honey morning & night helped my white blood count after it being very low first cycle. Getting outside for a short walk as soon as you feel even vaguely capable helped my mental & physical health no end. Good luck ladies, you can do this. I’m another October 17 lady 😘
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Re: January 2020 Chemo Starters

Can we talk taste changes? Had my first round of FEC on the 15th and last few days noticed my tastes are off. Does anyone have any experience of this and know whether it’s something that comes back between cycles or if this is it now until it’s all done and dusted?? Xx

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Re: January 2020 Chemo Starters

Hope you are all doing ok.  Here’s an excellent article on chemo and hairloss: 

https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/
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Re: January 2020 Chemo Starters

Wishuponastar you are so inspirational, I completely get all the emotions you have gone through as going through them at the moment.
Thank you for being so honest with everything I really need that and not to sugar coat the situation.

 

I feel like as you can’t tell (if you don’t know me) that my hair is really thin am getting my mum to cut it into a Bob today , but doubt it will last very much longer but may as well give it a go.... I ordered 6 hats (all being delivered today , thanks amazon prime!) so hoping once I have them I’ll have the courage to take the plunge and cut it off!

 

my hair is a safety blanket I HAD good hair before this and if my hair was done I would feel confident, but think beenies will become my best friends. I have a appointment with the hospital hairdresser on Wednesday to get a wig ordered so think I’ll be better mentally knowing that’s been ordered. 

sending you lots of love, 😘😘 keep your head held high... xxxx

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Re: January 2020 Chemo Starters

Hi Jemmalou101,

 

just read ur post... i couldnt believe how much hair i was losing.... came out in clumps so i had bald patches all over n my normal hair inbetween.  I actually didnt lose it all but when i decided i couldnt stand hair everywhere i got some scissors and sat in front of a mirror and cut my remaining hair to about 1 inch length...  then i sat there looking at myself, thinking who is this person and i cried and cried 🥺🥺😭😭

 

a few weeks later my husband gave me a number 2 just to keep it tidy.  I wore my wig 3 times but preferred my beanies and scarves.   When i was out and about i was surprised to see just how many ladies where wearing chemo headwear.  I even got talking so some of them which was great..   but it does grow back...  i know you're always being told that as i was 🤪🤪  but i am now 5 months since my final chemo and my hair is about 1-2 inches long all over,  ive even gotta get it cut soon!!

 

so when you feel ready just do it,  go for it... be brave,  stay strong and take one day at a time....there will be an end to all this...its in the distance just waiting for you to ring that bell.  Big hugs....mini mad xx 💖💖

 

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Re: January 2020 Chemo Starters

Hi Bod, thanks for info on Herceptin as I have felt bad all week, glad to hear the flu symptoms will get less as I can’t do a year of feeling this bad!

sunnybear

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Re: January 2020 Chemo Starters

Mine started coming out at the same time. I had lots of hair and it was very thick. It covered the floor of the shower then filled by brush. I really sobbed. I knew it was coming but the shock still his me very hard. My eyes still fill with tears at my reflection. It is like someone so different is looking back at me. Like you, I just felt so very exposed to the outside world. I had it clippered to a number 2 a few days later and now, 4 days post my second EC I have a fine fuzz. I would love to say it gets easier but I am not there yet. I have a wig that I bought before chemo but I do not like it. My friend has made me some great scarfs on soft bands, I can tie a turban, an infinity band, I wear Seasalt Handybands over a bamboo beanie and I have even ordered another wig to try. I would love to say I will rock the bald look but I doubt I will have the confidence. However, with 6 more chemo sessions to go, who knows. 

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Re: January 2020 Chemo Starters

Day 15 hit (Thursday) and my hair has been coming out in buckets full! I had quite thin hair (but lots of it!) but it’s now really thin and coming out in clumps! 😢😭 Even debating whether it’s worth to continue with cold capping with my next round (Wednesday) 

Anyone who has experienced hair loss does the shedding stop or is it going to keep coming out till I buzz it off??

It has been a emotional 4 days, and I feel so silly getting upset over hair but It just makes the fact I have breast cancer so visual to EVERYONE I actually feel physically sick over the thought of having to shave it off. 

anyone with similar experience? 

Jem xxx

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Re: January 2020 Chemo Starters

Hi Sunnybear

I started Herceptin last July. Some people have flu like systems to begin with but for most the flu like symptoms get less severe or just go away. I also couldn’t stop eating but didn’t put on any weight. I did go walking everyday (2-3 miles) which also helped I think. Good luck BOD

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Re: January 2020 Chemo Starters

 
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Shi Community Champion
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Re: January 2020 Chemo Starters

Sunny ear hopefully someone who’s had herceptin will be able to help answer you ❤️Winshuponastar, sound like you had a potatoe digger doing your Chanula today 😳 you get to know the good ones who can canulate you in seconds against ones who can take a few times, hope you get portacath sorted out for next one 💕💕✨✨shi xx

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Re: January 2020 Chemo Starters

I am home. Thank you so much for all the well wishes. It turns out there was an error. I was originally told I would have 8 cycles at 90% so when my consultant said he was lowering my dose by 10% as a result of what happened during cycle 1 i thought today I would be on 80%. It turns out I was started on 100% by mistake. I have now had 90%. Took a few attempts to get a canular in so hoping I get the portacath before the next cycle. 

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Re: January 2020 Chemo Starters

Good luck wishuponastar for today!!

 

Will be thinking of you and hopefully with the lower dose you won’t feel or have the symptoms you had in round 1! xxx

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Re: January 2020 Chemo Starters

Hi Annie5 

 

I had chemo on 08/01 and next one planned for 29/01, (pending on bloods results giving the go ahead) so 3 weeks to the day. My oncologist said not to try and work out finishing dates as they can change if you have to be defer a week if unable to go ahead as planned. Also I bought a diary and said to just always put the next appointment in it, would defo recommend a diary too if you haven’t already ready got one to make a note of how you are feeling on the days as your oncologist will ask how the round went and your symptoms too xxx

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Re: January 2020 Chemo Starters

Good luck wishauponastar, hope this round goes more smoothly.

 

I was affected more by headaches for days, which I was told was the cold cap. I am possibly going to try once more, I'd like to keep my hair for just a little bit longer. It's day 11 post chemo not seeing any hair fall out yet. 

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Re: January 2020 Chemo Starters

Hi Helsbels20, glad to hear it is not just me that is eating everything insight! I am a little concerned I will put on loads of weight though.

does anyone know if Herceptin makes you feel as if you have flu? I had first Herceptin with taxol this week and feel really unwell.

good luck to everyone who is having chemo this week

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Re: January 2020 Chemo Starters

Hi Drida 

A friend of mine had breast cancer a few years ago, shortly after giving birth to her first child.  She was in her late 20s and had traces in both breasts and in her nodes.  She is now 8 years clear and had her second child last year. She looks amazing and has beautiful thick hair now!  

Wishuponastar hope today went well and I hope the next few days are good.  Everyone else hope you are all doing okay, love reading your stories  - I just craved carbs for the first week, crumpets dripping in butter, white toast, iced buns!  Luckily that has now gone and am juicing loads to get lots of vitamins and to try and pretend I'm eating lots of healthy things before my next treatment! 

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Re: January 2020 Chemo Starters

I had my first AC chemotherapy to treat my Bilateral Breast Cancer on 10/01. First week was really hard as I felt extremely sick. Thanks after that I am well, now waiting for the second round on 31/01.

I also used cold cap and so far my full hair still here.

Anyone here knows positive feedbacks of curable breast cancer with several nodes infected?

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Re: January 2020 Chemo Starters

Thanks Jem 

All really good to hear

when they say three weeks do they mean chemo week one; rest week two; then chemo again week three? 

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Re: January 2020 Chemo Starters

Hope it all goes well today.

 

Your Angry Bird description made me lol. I approached two places but since I’m so close to chemo they won’t do the microblading. I’ll brave it x 

 

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Re: January 2020 Chemo Starters

Hi Annie and welcome. I did not cold cap as I am having 8 cycles (4 of EC and 4 of T) and my nurse suggested it was more likely not to work than work so I personally felt I would rather just accept that I would lose my hair. If I was having less cycles, I certainly would have tried. As it is, I lost loads of hair on day 16, had it clippered to a number 2 on day 18 and now on day 23 I am almost completely bald! I have found this really tough, far tougher than I thought. I think it is because my cancer is no longer hidden inside and there is a very clear visual that I am going through chemotherapy. I just feel rather exposed. However, I have put my big girl pants on and my children have been great (9,9 and10). 

 

I had my eyebrows microbladed but I do not think the lady did enough strokes (I was concerned I would get Angry Bird eyebrows so asked for it to be subtle). Sadly, they have really faded and I did not have time for the top up. 

 

As for diet, my taste changed but I did manage to eat and drink just different things to what I normally like. By day 8 I was more or less back to normal. 

 

I have round 2 starting today. As a result of my reaction to round 1 they have lowered my dose and I are starting injections on day 2 not 5. I also cannot drive at all this cycle as a result of the fainting last time. This is a nightmare but luckily I have great friend who are helping me to get the children to and from school. 

 

I am terrified. I really do not want to end up in hospital again.  

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Re: January 2020 Chemo Starters

Hi Annie5, it’s a lovely group and we will get through this together keep positive! 

 

I was diagnosed beginning of December and like yourself having chemo before surgery with a hope to shrink to give more surgery options. I had my 1st round of chemo on the 8/01 EC like yourself,  and I have honestly been great. I mostly struggled with fatigue (so plenty of rest and early nights) but other than that I have been great. I did get some ulcers in my mouth but I bought some alcohol free mouthwash and again this cleared up after 2 days. 

 

I am also cold capping , and again I didn’t fine this unbearable, I took my own leave in conditioner and even though I am noticing a bit of shedding at the moment hair is still in tacked. I am also guilty of getting my eye brows microbladded before chemo started as like you I have young children (10,7,3) and wanted to look normal for as long as possible but don’t think I’ll be able to get the top up as this falls within my treatment and the risk of infection is probably too high, but least I have the base! 

shopping wise I have actually found my appetite had been really good and I find myself eating more (little and often) make sure you have little snacks in and quick meals (or batch cook some meals that will only need re-heating) for the 1st couple of days too I found this helped when I lacked in energy. Oh and ginger biscuits incase you feel nauseous... I felt strange as the symptoms aren't automatic and it’s probably worst waiting for some to hit you! 

good luck for next Friday, I will be thinking of you!

 

jem xxx

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Re: January 2020 Chemo Starters

Hi all

 

Thank you for sharing all your heroic stories. It really is a huge encouragement and we will beat this 

 

I was diagnosed over Christmas with triple negative lump and nodes. My treatment will be EC three cycles and then another type; op; radiation.

 

I  am due to start next Friday. I have a 4.5 year old son and I’m going to try scalp cooling and from the blog maybe the microblading. I want to look as much myself as possible for him.

 

Any advice on the scalp cooling and diet? I need to shop before the first chemo.

 

What to eat during chemo? My pretreatment appointment is the day before chemo but I have a week to prep. 

 

All the best x

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Re: January 2020 Chemo Starters

I had port and chemo on the same day. They may do the same. 

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Re: January 2020 Chemo Starters

Mini mad, thank you. I am glad to hear that the picc line is working for you. I suppose I just need the easiest option in terms of both having it fitted then maintaining it. It is so hard to know what to do for the best. However, I will possibly not even get a choice but it will be good to be better informed before the appointment on Tuesday. Thanks all.

 

 

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Re: January 2020 Chemo Starters

Thank you Frenchie and Lorna. I am seeing my oncologist on Tuesday and in theory starting my next cycle on Thursday. Goodness know when I would have a port fitted but with 7 more cycles to go I do feel it is the way forward. 

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Re: January 2020 Chemo Starters

Hi Wishuponastar,

 

when i started my chemo only one of my hands could be used.  I was getting in such a state that by the time i arrived for my treatment i was already climbing the walls 😱😱

Chemo sister suggested a picc line which i had put in and never regretted it.   Made everything so simple and pain free 👍

i also live an hour away from my hospital but you get into a routine going once a week to have bloods taken and line cleaned and flushed through.

Maybe give it some more thought.  Portacath insertion is, i believe more of a minor operation.  Picc took about 25 minutes,  slight discomfort for a few days then all f

 

 

 

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Re: January 2020 Chemo Starters

Hi Wishuponastar,

Sorry just a quick reply as I've only got a minute but just wanted to say that I have a port and it was a bit painful for a few days after having it put in but it was fine after that and it was really brilliant when having chemo. You can put emla on your skin before chemo and it's then totally painless and no bother between sessions. I'd really recommend it. Hope that helps.

 

Lots of love and positive vibes to everyone xx

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Re: January 2020 Chemo Starters

Hi, 

 

So I had my port checked all okay, I was too overprotective of it and caused my neck to stiffen up and the shoulder and neck area are inflamed because of that. I am also reacting to the dressings, typical! Once it's all healed it should be much better and easier.

 

When they doing your next chemo session wishuponastar? 

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Re: January 2020 Chemo Starters

Sunnybear I am sorry to hear you thought you were Her2 negative and now you are not. How can that happen? I completely empathise with the news just getting worst...been there!

 

LornaJ, do you have a portacath then? I thought they were supposed to be great so I am sorry to hear it is getting knocked and is uncomfortable. Whilst I was in hospital the staff were really struggling to get blood as they can only use one side. They said I need to ask about a poracath or a picc line. The thing with the picc line is it needs cleaning every week and I live an hour away from the hospital so really wanted to avoid having to go so often if I can. Helsbels which do you have and how are you finding it?

 

Shi, I was all for donating my hair but sadly it was coloured and not quite long enough. One of my daughters could not understand why we could not just make a wig out of the hair we shaved off. She even offered me hers! I bought a wig before starting chemo but I hate it and it was expensive. I now feel I cannot justify buying another. I am currently wearing a bamboo beanie with a Seasalt handyband around it for bulk and interest. My friend has also made me some great scarfs that have soft jersey band with the scarf bits attached. I suppose I just did not want the world to know I was going through chemo but I just have to get my big girl pants on and cope. I have done one school run so far. I just hope it gets easier. 

 

Jemmalou, I really hope all of your efforts work and you manage to keep your hair. I had the option of a cold cap but my nurse said with needing 8 rounds of treatments is was very unlikely to work for me so I just decided not to even try.

 

I am feeling okay now, just terrified of ending up in hospital again. My discharge letter confirmed neutropenic sepsis!

 

 

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Re: January 2020 Chemo Starters

Hi just found that my tumour is HER2 positive after being told it was not! So I start Heceptin on Monday.

just feeling overwhelmed by everything and cold cap is not for me so trying to get a wig! 

all the best to those others going through hair loss - embrace your difference!

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Re: January 2020 Chemo Starters

Awww I completely feel your pain wishuponastar it’s just makes the illness so visual for others, but you’ll own it! Remember It’s a temporary loss and will grow back once you stop chemo, plus sounds like you have lovely children and family around you.

 

I am trying my hardest not to lose my hair (cold capping, bought the silk pillowcase, been using dry shampoo and only washing when need to, bought the plastic bobbles) but if it’s going to happen it will and am sure your children will get you thorough this (my 7yo wants me to lose my hair so he can have the longest in the family! 😂) children tend to deal better than adults they are so innocent which is lovely, don’t worry about others sure your rocking the look! xxx 😘 

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Shi Community Champion
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Re: January 2020 Chemo Starters

Helsbels ❤️ If you are able to buzz your hair to no 1, it is liberating to take control. I’d cut my hair to bob before starting and sent hair to little princes trust that makes wigs for kids. It is a very personal thing when you loose you hair and no one can really understand how it makes you feel. People do mean well but because you are trying to come to terms with your hair loss, you want to tell them to shut up and how would they know. I was a wig girl all the way and had all sorts, coloured bobs, wig for best, wig for treatment, tinsel wigs (Amazon did a great range) sending ❤️ And reminder to you all book your look good feel better sessions with your Macmillan’s ❤️💕💕✨✨shi xx

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Re: January 2020 Chemo Starters

Wishuponastar I think you are about a week ahead of me so am sure I’ll be standing in the shower with hair all over the place next week! I do think it’s probably the worst thing about this treatment as it makes the illness so public to everyone. I’m also fed up with people telling me it will grow back and it will grow back stronger and thicker! Have you got a nice wig? I’m not a scarf person and never will be but I do love a woolly hat! 
I’m also finding the port a bit annoying but I think it’s just knowing it’s there and i can feel it - I keep this king of the bionic women (showing my age ladies!) I have heard of lots of women who had very little side effects so let’s hope we are those people that just feel a little bit odd for a few days 🤞🤞🤞 I’m trying to fill my time without going out or online shopping! Is anyone working through their treatment? 

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Re: January 2020 Chemo Starters

Well first chemo done on Wednesday. Tolerated cold cap but my poor forehead was a bit battered after and I’ve still got a funny mushy achy head feeling.  Will definitely try a headband or some strips of gauze on forehead next time!

Just feel a bit queasy still and more tired than usual. Thank god for my Mum who’s dealing with my little ones for me🙂 

Finding the “wait and see” approach to potential symptoms a bit frustrating! Think I might feel alright in a day or two but know some people say symptoms can come at a later stage!!

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Re: January 2020 Chemo Starters

One of the most annoying things for me has been the port they put in my chest, both boys have hit it, it still is uncomfortable and hurts. Makes it hard to pick up my boys, sleeping has been uncomfortable. Anyone else had issues with their ports?! 

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Re: January 2020 Chemo Starters

I am so pleased to hear how well you all seem to be doing. Sadly, I lost huge amounts of Mt hair in the shower on Wednesday so I had it all clippered off yesterday. This has hit me harder than I thought. My children have been incredible about it though and I am so proud of them. 

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Re: January 2020 Chemo Starters

helsbels20 I feel the same as you, cold capping was fine, didn’t effect me at all just hoping it works! 🤞🏼🤞🏼 I had actually ice stuck to my hair when they took it off so hoping that’s a good sign and it’s done the job!

 

Fatigue has been a big issue with me, but no sickness yet and still been able to get kids to and from school so am winning in my eyes!

 

It’s so frustrating as I want to book little breaks away with my boys, but can’t for the fear of the unknown and what’s around the corner I know from what the nurses have said you might be fine one minute and then on your way to hospital the next so not taking it for granted and hoping feeling relatively normal continues. 

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Re: January 2020 Chemo Starters

Mistletoe injections - wow! That sounds really interesting and I agree I’d try anything! I was told to take a bottle of conditioner and a wide sport hair band to protect your forehead and ears from the cold. I didn’t find the gold cap too bad and actually the first cycle hasn’t been too bad (touch wood!) just felt a bit spaced out and tired.  It’s more the waiting for things to happen that I find difficult - not knowing what to expect when, today - a week later, I’m feeling nearly back to normal but have a sore mouth! Good luck tomorrow xx

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Re: January 2020 Chemo Starters

Hi Hen20

 

Thank you for sharing your experience. I’m due to get my PICC line fitted tomorrow. I am a little nervous about it so knowing that it isn’t too bad is good. 
I am starting chemotherapy on Monday. Having 3 x FEC and 3 x Taxol. I’m dreading it but will be a happy to start it so I can finish it! 

I was diagnosed with HER 2- and hormone receptive BC in October and has a single mastectomy in November. 

I have decided to use the cold capping so if anyone has any tips on how to acre for my hair, products to use etc they will be gratefully received. 

I am also taking part in a clinical trial which uses mistletoe injections to minimise the side effects of chemotherapy. 

As you can probably tell I am willing to try anything to minimise the side effects!

 

Good luck to everyone xx

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Re: January 2020 Chemo Starters

Hi Catd2504, another handy thingy to take is either some boiled sweets or chewing gum.  Good luck with your first cycle Smiley Happy

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Re: January 2020 Chemo Starters

Thanks LornaJ and Helsbels! I’ve not been given anything in advance so will wait and see if they give me anything tomorrow. I haven’t got a wide headband so hopefully can muddle through tomorrow and get one for the next round. Thanks so much for the tips! Xx

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Re: January 2020 Chemo Starters

Hi Catd2504 my nurse told me to take a bottle of conditioner, just your usual one and a wide hairband to protect your forehead and ears from getting too cold. A warm scarf or blanket to go round your shoulders would also be a good idea. I didn’t find it too bad but it was only a week ago so have no idea if it was worth it or not!  A few snacks and a nice drink as you do have to sit there for a long time but it does actually go quite quickly   Wishing you lots of luck for tomorrow 👍🤞🍀

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Re: January 2020 Chemo Starters

Hi,

 

At my hospital, they have me a hot tummy pack, hope they do the same for you. Made a world of difference.

 

I had a puzzle book and laptop, they had a tv. Take a large water bottle, so you have plenty of water. I put on comfy warm socks. Some people like wearing scarves. They gave me a large/wide tooth comb as they will use that for the conditioner and did they give u a headband? I got them in a charity bag in my appointment beforehand. 

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Re: January 2020 Chemo Starters

Got my first FEC chemo tomorrow.  I’m going to try cold cap.  Just wondered if anyone has any advice of what I should actually take with me for the appt?? Obviously something to read or listen to to pass the time but anything else any of you who have started can advise?? Thank you xx

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Shi Community Champion
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Re: January 2020 Chemo Starters

Fantastic news you are home ❤️ Just always be vigilant while on chemo and watch out for your nadir days, any thrush mouth or otherwise or burning wee even with no temperature straight on those rapid response lines 💪💪💪 keep focused you are ticking them off now 👍👍😘💕💕✨✨shi xx