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April 2019 Chemo Starters πŸ’–

Member

Re: April 2019 Chemo Starters πŸ’–

Good Morning everyone

 

I was also worrying about having Docataxel, but after reading Oots post i feel a little better about it.  I know everyone is different but at least there are some who don't experience lots of side effects so it gives hope.  I have decided that the first week after any of my treatments i am going to be out of it and the other two weeks are going to be my good weeks, whether thats the case remains to be seen.  

Today is another sunny day so i am going out in the garden (under the parasol), then later my friend is picking me up to go for a coffee.  It will be the second time out in my wig - quite nervous, does anyone else wear a wig? and do you feel conscious about it? i think everyone is looking at me and that they can tell its a wig! Family have said it looks great but i still doubt.

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you Oots,

 

Hearing your experience of docataxel takes away some of the fear. FEC and I have got on fairly well so far, apart from very hot, restless nights and fatigue.

Sense of taste comes and goes but I know I'll feel better next week. The whole experience is a venture into the unknown.

 

One more FEC and then docataxel, so thank you for your encouraging words! It all helps....

 

Pollensa x

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

 

I am on Docetaxel (with a helping of cyclophosphamide) and have done two out of four cycles. I haven’t had terrible side effects. I’ve lost my sense of taste for about 10 days each time and had a lot of pains all over my body for a week (may have been due to the growth factor injection) but with paracetamol that wasn’t too bad during the second cycle. Hair is still on; the cold cap appears to be working. There are a lot of drugs given with the Docetaxel to prevent sickness etc and that’s all worked well for me. I had not much of an appetite and only a little indigestion but that was it. The fatigue is probably my biggest problem. For about a week, I am too exhausted to do anything. I also get a dry mouth for a few days and need to be very vigilant with rinsing my mouth to keep it free from sores. On balance, I don’t think Docetaxel is worse than any of the other therapies I read about in this forum.

My next one is also on the 28th May. Can’t say I’m looking forward to it but after keeping a diary of side effects, I now know what to expect and that I’ve tolerated it. 🀞

 

Oots

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

I too start on docetaxel after my next round of EC.  Pretty daunted by it as ive heard it gives more side effects?  Im still nauseous 6 days after my last chemo so the unit have prescribed a different set of anti sickness tablets.  Also trying to remember what tablets to take as well as my temperature and throat spray/sweets/gel!!  I was very emotional at the weekend, my hair is thinning rapidly so its getting shaved tomoro - it can come back  whatever colour it likes as long as there is no grey!!  Ive had acheing shoulders and neck and a sore throat and ive had no taste buds for a few days.   I know its not for ever and trying to stay positive is easier said than done but i know with the support of the ladies on here we will all come out fighting this **bleep**.  Xxxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all, 

 

I start Docetaxel on May 28 - looks like I might be the first of the April starters to do so! I'm a bit scared as I had just got used to the EC and worked out how to counter some of the side effects and it all starts over again. From what I've read, Docetaxel is more painful than nauseating, and the side effects are delayed - you feel alright days 1 and 2 and worst days 4 and 5. I guess as long as we're prepared for it...I managed to avoid neutropenia on EC and I'm nervous that I won't on D. Oh well. One day at a time! 

xx

Member

Re: April 2019 Chemo Starters πŸ’–

 hi Pollensa

 

Its sound like you are on a similar treatment plan to me.  My 3rd EC will be on 21st May then after that one i will start Docataxel, i am having targeted drugs too alongside. This week i am on a good week, no SE as such just the occasional emotional blip. I hope the rest of your treatment goes smoothly, i will let you know how i get on with the Docataxel when i have it.

Debi

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi to everyone,

 

Just had 2nd FEC, 1 more and then 3 docataxel , which I am dreading. So far same ses as from 1st cycle so not so bad.

 

The worst thing was the actual treatment. Blood pressure had been fine all day ( taken it twice), goes into unit and BP goes through the roof! Along with that and high pulse they were talking about having to postpone.  You all know what it's like, you're all geared up, last thing you want is to home with nothing done. Had a bit of meltdown I'm ashamed to say. Took one of my bp pills, pressure started to come down, all was well. And then.......they couldn't find a vein! On the very last try, success, thank goodness.

 

Not much I can do about veins, but going to gp, again, to get BP sorted out. Not going through that again!

 

As for Googling, I was awful at the start, looked up everything, scared my self s^%$#^*s. Especially the American websites and YouTube vids.I did have to "come off" them but now quite happy with Breast Cancer Care.

 

Lovely afternoon, hope you are all enjoying the sun. Xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

I am feeling a lot better this week, i think its with the help of the sunshine and getting my wig sorted.  The ladies in the wig shop were really nice, very helpful and patient ( i have been in and out of their shop since diagnosis!) I am having less emotional blips and keeping myself relaxed by listening to books via audible. 

Phet7178 I too am having chemo before surgery, my consultant said that sometimes the lump can completely disappear with the chemo and targeted drugs (thats why they put a marker in it) Are you having docetaxil and herceptin? 

My partner says i have to keep off googling things as the info can be very dated and sometimes incorrect. I have stuck to this and feel a lot better as i am not worrying myself silly with the info.  If i need to know anything to do with my treatment etc. i call the nurses which i find is the best way.

Best wishes to everyone.

DebiπŸ’–

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Runningsue (and all), 

 

I've had 3 ECs so far, and I can relate completely to feeling low. I'm not sure about you but I've also been put in a chemical menopause during my treatment (as I'm pre-menopausal) and so on top of everything I have the general emotional rollercoaster than comes with your body suddenly stopping producing estrogen! I've been struggling this week but a few things have helped me - starting therapy (I really recommend it - it's hard to get on the NHS but I have seen a mindfulness coach at my local Maggie's Centre and also a 'talking' therapist privately, found someone local who was relatively reasonably priced), and starting to recognize my negative behaviors and intervene in them. In my case that is spending lots of time googling different cases of breast cancer, reading about metastasis and convincing myself it will happen. Which is so silly, because even if It does, there's no point me spending my time worrying about it now! But saying that is easier than doing it. I'm also having neoadjuvant chemo (ie chemo before surgery) which has the added challenge that the cancer is still there - I can still feel it (and see it) and don't have the satisfaction of knowing it's out of me yet. Anyway, I just wanted to say that despite these issues, after a week of feeling low I feel much better now - perhaps the hormones have done something, but I really think the therapy helped and taking a proactive approach to recognizing behaviors that make me feel worse and trying to engage in things that make me feel better (going for a walk if I can, having a nice cup of peppermint tea, reading a good book).  Professional help is really great as well - sending all warm thoughts 

Member

Re: April 2019 Chemo Starters πŸ’–

Worst side effect for me is the fatigue . Before treatment I could walk six miles  easily now 10- minute walk from station tires me out . Now I have finished the Red Devil FEC I have nine sessions of Paclitaxel awaiting . Still have my hair and for those of you cold capping and only washing once a week try organic shampoo gently lather swish with lukewarm then cold water . The wide comb I bought last week has made a big difference and inbetween I use dry shampoo. The worst hair loss was after first FEC it has now stopped and growing back at side where it shed . Worst thing of all is the time this is taking with radiotherapy still to come for me but when I get fed-up I think of how much worse things would have been had I not found the lump in time 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Runningsue

 

I can definitely relate to your feelings. I just had my second out of four TCs. 

Taste buds, yes, this awful tingly feeling on the tongue and nothing tastes right. I can only taste tomato ketchup. I have toast with tomato ketchup and am loving it. The good thing is that the taste came back after 10 days. Not completely but so much better. I wrote down exactly what happened during the first cycle and in cycle two, it was almost identical. So this helps me focusing on when all these side effects will get better. 

Not many things get me down but the prospect of how long this treatment is going on for, really gets me sometimes. I usually love May (everything looks fresh and smells wonderful) but this year, I cannot enjoy it as much because going out is hard when I am so exhausted. It feels like 2019 is a β€˜lost year’. But then, I try to think of it as an investment. I’m enduring all this s@#* to ensure I will have a good life when it’s all done. It’ll be worth it in the end. 

Re hair, I have been cold capping and so far it seems to work. But, to be fair, my hair looks rubbish most of the time because I am not interfering with it, use any product or wash it as often as I’d like. So looking in the mirror is a problem.

 

One really positive activity I did last week was attending a session organised by a charity called β€˜look good feel better’. It was a morning with some beauticians who showed us how to put on makeup, draw on eyebrows, use eyeliner etc. We got a fabulous bad of cosmetics and it was incredibly uplifting to see how we all looked so much better as we started to follow the instructions. Talking to people in the same boat was very nice; an incredible mix of people and we had a good laugh and learned something. This charity has workshops like this all over the country and you can search on their website for locations. 

 

Coming back to the hair, they had invited a lady who had attended this workshop a year ago. At that time, she had no hair and was very poorly. We saw the pictures. This time she had fabulous hair and the transformation was amazing. She looked so well. To me this was a real boost because it restored the belief that no matter how bad things are at the moment this is only temporary. We will get through this!

 

I don’t know whether any of this helps. I hope you will feel better soon. It will all pass even though it takes a long time. I hope you believe this too!

 

Oots

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone,

 

I'm just popping in from the February thread to offer some support.

 

First of all, you're all doing really well and you will get through this even though it seems like you have a mountain to climb at the moment. Just take it one day at a time and be kind to yourself. 

 

Runningsue42 I am sorry you are having such a rough time. What regime are you on? I have had 3 x FEC and one of three docetaxel. At times the horrible side effects have got the better of me too and I have had several Bridget Jones style melt downs! Hopefully, you will be starting to feel a bit better in weeks 2 and 3. That first week is bloomin horrid and feels like the end of the world but you will have better days.

 

Kelly73 I hope you've had a chance to phone the advice line. Don't suffer with any more pains, etc, that's what they are there for. 

 

Christine18 it sounds like the cold cap is working well for you. I hope you manage to hang on to plenty of hair for your birthday and the wedding. I am cold capping too and have managed to keep about half of my hair. I did have a lot to start with so that probably helped. 

 

As for hair loss in general, yes it's awful and no one understands fully unless they have had to go through this but there are lots of lovely headscarves out there as well as very natural looking wigs. A few of us from the February starters have had real success with the fringe pieces you can attach to any cap or scarf. They look very realistic and are easy to wear.

 

Wishing you all strength for the week ahead.

 

Much love to all of you and please ask if you have any worries at all.

 

Sar xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

I had my 2nd chemo on tuesday, ive not cold capped, my hair has been falling out all week and im a total emotional wreck today.  Ive got no taste buds, im aching everywhere and i feeling so low.  Im not even half way through my treatment yet.

Anyone else feeling this way? 😒😒😒

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Kelly,

 

Can't really help I'm afraid. Only thing I would suggest is phoning your helpline. I've phoned a couple of times and found them very helpful and reassuring. Sores on your nostril must be horrible, I'm so sorry.

 

As regards the hair. I had my head shaved so I could wear my wig. The hairdresser left a very short covering of hair, which is now driving me mad! Moulting everywhere! Getting a complete shave on Tuesday. Cant wait! Might be worth considering....

 

Hope you feel better soon. The first week is always the worst, in my experience anyway.

 

Pollensa

Member

Re: April 2019 Chemo Starters πŸ’–

Sorry Christine18, but this is not a response to your comment. I don’t know how to just add a comment without replying to another one !

 

anyway, I am on EC and am suffering with itchy watery eyes and have sores in my nostril and on my scalp. I have already started losing my hair, so had it shaved off to a number 3.

any advice please?

the left side of my face, along the bone is tender to touch (not like neuralgia). I’ve been having my EC through a needle in my hand, which has caused my arm to be sore. I’m wondering if it could be linked to that, with it being on the same side

 

thanks Kelly

Member

Re: April 2019 Chemo Starters πŸ’–

Hi,

Im having zoladex too as I’m only 28. Such a big needle!!  I had my first symptom last night...the dreaded hot flushes! 2am I woke up on fire! Hardly slept after that then had my 5th weekly chemo session today. I feel like I’ve barely recovered after last week! I pushed myself too much at the weekend going to a wedding 6 hours away! Bit too much. This week I’m planning on taking it easy. 

Cold capping so far is going ok. I haven’t really lost any hair (anywhere!) I expected to lose my eyebrows and bikini line by now but nothing. Im a bit worried it’s all going to fall out in one go from my head too. My birthday is on the 18th and im going to another wedding so hoping my hair last until then! 

Hope everyone is doing ok. 

Christine x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all, 

 

I liked your phrase Debi2 of 'having your emotional hat on' - I've had that on the last couple of days too. I didn't cold cap so I lost all my hair (I just had my 3rd EC). I am also having zoladex to suppress my ovaries as I'm premenopausal, and the menopause has hit me hard this week I think. For the first time really since diagnosis yesterday I couldn't stop crying and I was a real rat to my partner and mother who are looking after me (they forgave me though because, well, look what I'm going through!) The good news is I feel better today and more able to face the day. One day at a time

xx

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you for your positive thoughts and wishes, it means a lot.  I have still got my emotional head on although i am coping a little better.  My hair has thinned incredibly but i am going to persevere with it and clip it up.  My wig app. isn't until the 16th so hopefully feel better once i get that on stand by.  I thought i was mentally prepared for any hair loss but maybe i wasn't.   My energy is slowly coming back - all i seem to want to do is lay down!  I am on day 8 now (thats counting chemo day as 1). 

Mandyr44 hope you are feeling better and i will be here to support you best i can - we can all cry and laugh together when we need to. 

Best wishes everyone

Thanks again

Debi πŸ’–

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Grannypops7

 

I have chosen not to take the steroids, but this is because they are given to prevent nausea, which I haven't had. 

 I had them with the first session, but only took half the prescribed amount as the instructions weren't great. They caused stomach irritation on a half dose for which I had to be prescribed omeprazole.

 

I spoke to the nurses in the chemo unit and they said it was my choice. So I opted out, but I still have some incase the situation changes when I move to docetaxol.

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Grannypops7

 

I have chosen not to take the steroids, but this is because they are given to prevent nausea, which I haven't had. 

 I had them with the first session, but only took half the prescribed amount as the instructions werent great. They caused stomach irritation on a half dose for which I had to be prescribed omeprazole.

 

I spoke to the nurses in the chemo unit and they said it was my choice. So I opted out, but I still have some incase the situation changes when I move to docetaxol.

Shi Community Champion
Community Champion

Re: April 2019 Chemo Starters πŸ’–

Lizandsarah ❀️❀️It’s good to 😒 your hair is your hair and a part of your identity and it is a big part of this journey. Your hair will grow back and nothing wrong with a wig or 10 if you do end up going down that route, get some tinsel ones and you can both wear them for Eurovision, if you can pretend with little one it’s dressing up? Also please use the someone like me in here, they could offer more tips for your cold capping. I think you are amazing by the way, going to pub during chemo, proper πŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺ. It’s easy to feel everyone is looking at your hair/scarfe because when we look at ourselves you are like who’s that looking back at me, but you are there and what people will be looking at is your beautiful eyes and amazing smile πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨Shi xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi

Did you choose not to take steroids? 

Kathy x

Member

Re: April 2019 Chemo Starters πŸ’–

That is rotten after trying to keep your hair and exactly why so many choose not to bother with cold cap . I know so would be devastated if it started to shed any more and no guarantees it won't . We will all get through this x 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi phet1728,

 

The community nurses do my GCSF injection every time, I can't self inject, it's just a step to far for my partner to do it.

 

Nothing babyish about it at all, so don't think you are.

 

The community nurses have provided more emotional support than specialist nurses for me and are amazing.

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

I've finally got tearful about my hair today.

 

I've had two FEC so far and cold capped as I have long hair and wanted to give it a chance, especially as my child is frightened of seeing me with no hair. Next one in 11 days.

Loads seen to come out after washing it today, and I cried. It's been shedding but not this level. It's also getting very knotted, but the wig lady will cut it shorter when she sees me. I can't face going to my normal hairdresser.

Got a few funny looks when I wore a headband type scarf (Buff brand) yesterday when I was out, so I don't want to go out to pubs / restaurants now.

 

I've been very lucky with side effects so far, not taking any anti-emetics or steroids with or following chemo, but this hair loss one is so upsetting. Whilst I still have a covering, it is so thin and there are a couple of small hairless spots. 

 

Also considering changing oncologist as she isn't prescribing in a timely manner, and wanted to prescribe something not in NICE guidelines without discussion with me & my appointments keep being cancelled or aren't in the timescales she said which gives me no confidence whatsoever.

 

Member

Re: April 2019 Chemo Starters πŸ’–

Thenks Shi I think I managed to persuade someone starting chemo Wednesday who I met by chance today to at least give the cold cap a go ... it worries me terribly that some may turn down chemo because they cannot face losing their hair . I know for many it is not an issue but for others major deterrent . Two days after third FEC and still have almost full head of hair 

Shi Community Champion
Community Champion

Re: April 2019 Chemo Starters πŸ’–

Amazing beautiful ladies bit of sisters are doing it for themselves on the chemo jukebox for you all. Hang on in there with the cold cap, a couple of ladies on the oct17 thread that I was on had some merging similar but susanmanchester has given great tips below and I know the girls only β€˜washed’ theirs once a week. Well done to those cold capping πŸ₯Ά I was too πŸ”I just wanted to be in, chemo done and off home πŸ€ͺ those going onto T, a few of us painted our nails black to protect them from uv light during t and it worked well and we kept our fingernails. Some others rubbed some oil into their cuticles and that worked well too. πŸ’•πŸ’•βœ¨βœ¨Shi xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all- just wanted to check in and let you know how I went with EC yesterday. After a change to my meds for side effects I feel a million times better- it’s unrecognisable. My first two rounds I was prostrate in bed for at least five days, needed my partner to walk me to the toilet even, and had extreme agitation and restless legs on round two. With the med switch I’m still tired and sleeping a lot but I can actually pick up my phone and write this on only day two which I would not have been able to do before! Can even watch tv (took me till day 4 to be able to lift my head last time!). 

 

I guess the lesson is- if you’re suffering bad side effects demand a change of meds! In my case we worked out i was having a terrible reaction to metaclopromide. So they removed that and gave me cyclazine instead, and added lorazapam for nausea and anxiety. 100% turnaround. And after all my nerves! 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all- just wanted to check in and let you know how I went with EC yesterday. After a change to my meds for side effects I feel a million times better- it’s unrecognisable. My first two rounds I was prostrate in bed foray least five days, needed my partner to walk me to the toilet even, and had extreme agitation and restless legano on round two. With the med switch I’m still tired and sleeping a lot but I can actually pick up my phone and write this on only day two which I would not have been able to do before! Can even watch tv (took me till day 4 to be able to life my head last time!). 

 

I guess the lesson is- if you’re suffering bad side effects demand a change of meds! In my case we worked out i was having a terrible reaction to metaclopromide. So they removed that and gave me cyclazine instead, and added lorazapam for nausea and anxiety. 100% turnaround. And after all my nerves! 

Member

Re: April 2019 Chemo Starters πŸ’–

Once they come up with a cold cap which works 100 per cent ( and they will ) we will be spared this horrible dilemma . After the 1st FEC was when I shed most hair which is when I got my wig but it thinned rather than anything else . Do not make any rash decisions because it may not get any worse . You can't wash it like you used to .. cold or lukewarm water pat it dry use a wide comb and do not wash at all until several days after chemo . No hair dryer no products . It will not look great but might stop it from falling out however I get the impression it is unpredictable which is why so many understandably do not bother as it is very stressful 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi2,

I think  you are one day ahead of me and we seem to be following a similar path, I also feel much more emotional this weekend, I think I’ve cried more in the last 24 hours than I have since I got my diagnosis. My hair has also started shedding a lot too which is getting to me, they were only saying at the hospital on Wednesday how well it was doing. Now I can’t decide what to do with it. 

Hopefully today will be a better day for you, as someone on here said, if we’re feeling rubbish at least it’s doing it’s job which I’m clinging on to for now.  

 

Mandy x

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya Debi2

 

I was exactly the same when my hair started coming out, but I took control of the situation and went and had it cut short. Within a couple of dats, I got my brother to shave it off. I felt so much better then.

Don’t  give yourself a hard time about getting emotional, we all do....even the tough ones amongst us. We are all going through a tough time but just remember, it’s only temporary. Start thinking about all the nice things you can do, when this part of your life is over and you’ve moved forward.

I keep telling myself that Ill soon be back to the happy old me.

Im a 46 year old single parent and am looking forward to so many things. 

Positive thinking but remember, if you need to cry, then cry x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi2

i was like you but last weekend. I had thick hair down to my bra strap, had it cut to a chin length bob about 5 weeks ago. Last Sunday morning I washed my hair for the last time. It felt dead, loads came out when I combed it so me & my partner shaved it off. My scalp was also hurting a lot. This week I’ve ventured out in a wig which is good but not my hair. My head & neck is constantly cold & I sleep in a joules bobble hat as most of my heat seems to go out of my head. On Tuesday it will be my 6th chemo session, I’m having chemo weekly for 12 weeks. Tonight I’ve had a good cry, I’m 45, bald, sitting indoors with a bobble hat on because my head is cold, feeling sorry for myself when I should be having fun. Sometimes the cancer diagnosis is just too much to deal with & I would like to just pretend it isn’t happening but I know tomorrow I’ll wake up with fight in me. Debi2 if you need to cry let it out, we cannot be strong 24/7. We will beat this & remember we have started the journey & we are closer to getting the results we all deserve in this forum 😊

Member

Re: April 2019 Chemo Starters πŸ’–

You poor thing, Debi!

It’s so normal to feel down at times, particularly when under duress like this. And it’s ok to let it out too. There are moments when I am fed up and emotional for so many reasons. Then I always try to look towards the future when all the treatment is done.

And that there are so many amazing people out there to help and support us to get there. Not just our friends, families etc but all these wonderful nurses and doctors and charities. I had not much an idea about any of this until the 14 January 2019. And inside, this discovery makes me weirdly happy.

Hang in there. This rubbish time will pass!

Oots

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

 

I have been very emotional this afternoon and very weepy, anyone else find their mood is up and down?  I think it is with my hair coming out and i was hoping upon hopes it wouldn't ( although it isn't a guarantee ).  Is anyone else feeling the same? i think i need a bit of positivity.

😒

Member

Re: April 2019 Chemo Starters πŸ’–

Welcome Pip,

 

Keep going! Just think of all those horrible invading cells being slaughtered! And because you are feeling all the yucky side effects, that means the drugs are the work they are supposed to be doing!

Hope this cycle is better and they've got the balance right this time! Do keep us posted. This forum is awesome!

Sharon 

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hey Sue,

 

That's awesome that your hairdresser did that and well done you for donating your hair. Both my girls have done that at one time or another. 

I use a Boots under-the-tongue thermometer.

How did the oncologist go? I am due for my next dose on Monday...

Sharon

xx

Member

Re: April 2019 Chemo Starters πŸ’–

Thanks for the welcome all! I'm off to my 3rd EC this afternoon. I am feeling a bit better about things thanks to the magic that is lorazepam, lol. Spaced out, but not as nervous as I was yesterday. Just really hoping that this time is relatively smooth. I've got my little box next to my bed of medicines, hand wipes, anti-bag, ginger chews etc, and plan to hop straight into bed when I get home. Fingers crossed xx

 

PS So admiring of everyone who has been injecting themselves. I'm way to squeamish to and have my partner do them, or sometimes even get the district nurse to come. I'm such a baby!

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Well done with the injection Steffih, now you have done the first you will be more confident as you do more.  The steroids make me quite spaced out although i can seem to sleep ok - if not more than usual!  I have to take one for 3 days after my chemo day so yesterday was my last one this cycle.  My hair is definitely coming out so i may have it cut short like some ladies on this forum have mentioned.  I was holding on to the hope that it wasn't going to come out so it was a bit emotional when my brush was full of it.  MRI on Thursday to see how the treatment is going so fingers crossed. 

Wishing everyone a good bank holiday weekend.

DebiπŸ’–

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Steffi

 

brilliant that you managed with the injection! I am sure it’ll be a routine for you very soon. 

 

Re the steroids, they are probably one of the reasons why you have no side effects. I always feel a bit crazy/high/pumped and I am not sleeping well while I am on them (three days only, starting a day before the chemo itself). But I think it’s a small price to pay because I’m not getting sick. So on balance, i don’t mind taking them. Your oncologist will be able to advise on the pros and cons. 

 

I am on my 4th day post chemo and I am absolutely knackered. I am usually an active person but right now I am not able to do much. My jaws and body hurt too, like I’ve done a few rounds with Mike Tyson in the ring but apart from that, I am not too bad. The symptoms are so similar to the 1st round that I am reasonably confident by Monday, I’ll have more energy and the pains will be gone. Hope everyone else is getting on OK too. 

 

Oots

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Steffih,

i struggle with the steroids too. I’ve had my second chemo this week and was up all night again on the first night, that’s happened both times. I am also eating everything in sight which I’d rather not do but can’t seem to stop myself. 

Well done on the injections, it took me a while in the beginning but I’ve got used to it now. My main side effects have been nausea, constipation and fatigue, not pleasant but still better than I expected. 

Good luck with the rest of your treatment. 

Mandy xx

Member

Re: April 2019 Chemo Starters πŸ’–

I just gave myself the damn injection so proud of myself, but I forgot to wait til the thing came back out at the end because I was so nervous, so I missed a bit at the end. I hope it's still ok...tomorrow I'll make sure... I haven't had any side effects from the chemo yet, but I have been really struggling with the steroids and am wondering if they can be reduced next time, yesterday I was so speedy and thought I was going crazy, thankfully today I don't have to take them anymore. Does anyone else struggle with the steroids? xxx

Member

Re: April 2019 Chemo Starters πŸ’–


@Mominette wrote:

Hello

Thanks for your reply.

I was unable to start chemo until yesterday as I had a virus.

I am interested that you said that chemo only altered your odds by 6%.

On my oncotype DX test it stated that my RS score was 29 with a distant recurrence

risk in 9 years of 18% and overall absolute chemo benefit of equal to or greater than 15%.

I assume it is this last figure that you refer to re: 6%

Anyway, I went ahead with it yesterday and although I felt pretty rough last night and tired

today, I am not feeling too bad this eve. 

Did you just have the one surgery with no re-excision necessary for clear margins?

I was node negative.

Thanks for you reassurance, much appreciated. I was really apprehensive about starting chemo.

I am cold capping too and hoping it works as my hair grows so slowly.


Hi I was node negative but Grade 3 and Stage 2 . Tumour just over 2 cm . Clear margins lymph nodes removed nevertheless ... I decided on chemo because I would have worried more if I hadn't had it . So far I have had no bad side effects other than tiredness and slight nausea x 

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya Pip

Im also having EC and have had 2 so far. First was worse due to sickness. They changed my medication so I was sick after 2nd, but have been wiped out for the first week. I ended up in A&E today, following advice from Chemo ward. I’ve had palpitations and feeling slight breathless. Had ECG bloods n X-ray, which all came back ok.

Just wondering if you’d had that at all with EC?

thanks Kelly

Member

Re: April 2019 Chemo Starters πŸ’–

Hello

Thanks for your reply.

I was unable to start chemo until yesterday as I had a virus.

I am interested that you said that chemo only altered your odds by 6%.

On my oncotype DX test it stated that my RS score was 29 with a distant recurrence

risk in 9 years of 18% and overall absolute chemo benefit of equal to or greater than 15%.

I assume it is this last figure that you refer to re: 6%

Anyway, I went ahead with it yesterday and although I felt pretty rough last night and tired

today, I am not feeling too bad this eve. 

Did you just have the one surgery with no re-excision necessary for clear margins?

I was node negative.

Thanks for you reassurance, much appreciated. I was really apprehensive about starting chemo.

I am cold capping too and hoping it works as my hair grows so slowly.

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all - I hope you don't mind me joining your conversation suddenly! I started chemo early April but only found out about this thread today. I'd love to join in the chats. I was diagnosed in March with an IDC, about 5cms, ER+ PR+ Her2-, and I've had two cycles of EC so far. My third is tomorrow, after which I'll switch to Docetaxel. I had a bit of a rough ride on my second cycle as I had a bad reaction to metaclopromide, which made me agitated. They've now switched it out for something else and given me lorazepam so am hoping it will be gentler this time around. I'm already a bit over chemo TBH - a friend recommended I come on here when I mentioned I need some motivation to push through! Hope you're all handling the side effects and mental challenges well 

Pip

x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi sharon

Ive had my hair cut into a short bob and i love it!! Think i may keep it this length when it grows back!!! All my friends say it suits me!! Ive known my hairdresser for 20 years and she wouldnt let me pay her - she said this is her way of helping me and has offered to cut it shorter when im ready. Im donating my hair to the little princess trust and it feels that by losing my hair im helping someone else in their treatment.

 

Had a panic yesterday tho as my thermometer told me my temp was 34 so i went to my local hospital who checked my temp and it was normal and checked my bloods and it was all ok.  Can i ask what thermometer do u use as i dont seem to be having much luck with them!!

 

Off to see my oncologist in an hour to ask how ive been since my first chemo to see if they need to alter my plan but ive not been as bad as i thought id be so im hoping they dont change anything.

 

When is your next chemo? How are u finding it so far?

Speak soon, take care

Sue xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi SUE,

 

How did the cut go? the sooner you go shorter, the better. It's MUCH less painful and distressing since it doesn't seem as much of a loss!

Keep us posted!

Sharon 

Member

Re: April 2019 Chemo Starters πŸ’–

En route to Christie 's for third and last FEC . Then on to Paclitaxel ... weekly . Have paracetamol for cold cap as others have suggested - yep my hair is thinner but still hanging on in there . Good luck to all having treatment today can't believe have got so used to it all ! X 

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya Louise

 

type in the name of your injection into google. It’ll tell you exactly what it does in medical terms, but basically they boost your white blood count, to help your immune system 😊