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August 2020: starting chemo.

Amy1988
Member

Re: August 2020: starting chemo.

Hi mb. We seem to have our chemo on the same days! I was sick on day one, then the next few days were ok apart from fatigue. I stupidly thought that i might not have anymore side effects. I was wrong. Days 9 to 12 were tough. Im learning that its very unpredictable. Do you have to have the injections at home? They gave me awful joint pains. Im eating fine to (too much lol). My hair seems to be coming out in thin strands and it feels brittle. I hope the next round will be a bit easier for us. How many rounds are you having? Ive got 6 every 3 weeks on FEC - T

m_bee_w
Member

Re: August 2020: starting chemo.

Hello everyone. I'm now on day 13 since my first EC, and after a really tough, soul destroying week feeling extremely fatigued and unwell, by about day 7 I was back to feeling normal again, with plenty of energy and appetite.

I've not noticed any hair loss yet, but that will no doubt come.

My second EC is next Thursday and I can only hope it will be the same, with a rough initial week and then a return to some normality. We can see. Has anyone else noticed a similar pattern? 

Take care,

MB 

KatBee
Member

Re: August 2020: starting chemo.

My hair loss has been at the end of the first round, just before my 2nd round starts. If you’ve got through a round already with no hair loss that’s got to be a good sign! It does add SO much time onto the treatment doesn’t it?!

lucy53
Member

Re: August 2020: starting chemo.

hey katbee 

how many rounds of chemo before you noticed hair loss?  ive used cold cap for first round & hoping its worth the 2 hours extra spent on the ward!

xx

KatBee
Member

Re: August 2020: starting chemo.

I’ve been using the cold cap too Marie and the last 3 days my hair has been falling out. I’ve got a LOT of hair so the amount that has fallen out is pretty alarming, it looks like a small animal! But I still have enough to cover my head which I’m pleased about. Fingers crossed it continues. I only have 2 rounds of FEC left and then I move onto docetaxel. Is the docetaxel less harsh on the hair? 

lucy53
Member

Re: August 2020: starting chemo.

Hey Chantal 

Yes they extra energy has been fab! been more productive at work than ever - long may it last 😀  i have had a very dull headache since last wednesday though so its taking the edge off it a bit. i feel so lucky - i'm still waiting on other biopsy results etc to rule out if its on other breast or not but least the treatment so far has been manageable!

hope you are keeping well - i'm off out to pick up my wig today never thought i'd be excited about that!

xx

Chantzy1
Member

Re: August 2020: starting chemo.

Hey there Lucy,

Bet it was quite nice to have a bit of energy and be able to do sine stuff I have felt OK with energy levels even contemplated a run this week didn't know if it was a good idea need to ask nurses Thursday keep positive and wish you well 

🥰🥰🥰

Chantal xxx

lucy53
Member

Re: August 2020: starting chemo.

Hi i'm on day 6 after 1st EC chemo. i've been hyper the last couple of days - has anyone else had this?

Amy1988
Member

Re: August 2020: starting chemo.

Hi maire. You sound like you've not had a nice time with chemo. I was ok the 1st few days but days 9 - 12 were awful. It felt like it was one thing after the other. And i had a high temperature too, so i had to have a covid test. All ok but i was so stressed out by it. Did you use the cold cap? I haven't and ive still got my hair but it feels different. I think im going to have to shave it off this week, i get emotional just thinking about it! My 2nd chemo is 3rd september, im dreading it too. I really hope yours goes well and maybe the next one will hopefully not be as bad.

SarahT20
Member

Re: August 2020: starting chemo.

Hi everyone,

Hope you're all doing well. Bit of a late joiner to this thread but I've been reading your posts and they've really helped get my head round things. I was due to start chemo (4 cycles of EC before 12 weeks of pacleataxyl) on Monday but the ejection fraction level from my echo on Sunday was only 51, so after some extra bloods and an ECG they decided to postpone. I'm to do some follow up bloods and then will hopefully start again tomorrow morning. Not entirely sure what they are looking for in the bloods, but I hope they like what they see as I could really do without another false start! Has anyone else had similar issues after their echo? The oncologist I saw on Monday said my level of 51 wasn't anything to worry about generally, but because chemo drugs can damage the heart they wanted to be on the safe side and do these extra checks. Makes sense I guess, but it's hard not to worry about changes to treatment plans if the bloods aren't right tomorrow.

xx

Maire
Member

Re: August 2020: starting chemo.

Hello All, and welcome to those just joining. I typed up a long post a few days ago but something must’ve gone wrong as it didn’t post.

To those thinking of the cold cap, I am now on day 20 And have most of my hair. They advise combing your hair every day. I don’t normally do this as my hair is curly but have complied and lots has come out over last 2 days. However the last time I had FEC chemo, all my hair fell out on day 16 so there has been quite a big difference. Difficult to know if it is just delaying the inevitable or not. I will keep you all posted. Last time my hair actually started to grow back in when I moved onto doxetaxol.

I have really struggled with this chemo. So tired, dizzy and weak and with awful headaches. On day 12, I started to feel better, then started to feel worse. Weak and so tired. Then my temp went up to 38.4C and I ended up in A and E. Was discharged With antibiotics. Felt just as bad the next day and temperature back up again. Thankfully the following day I felt better.

Tomorrow I have my telephone appointment and then on Thursday it’s chemo 2. Dreading it.

 

lucy53
Member

Re: August 2020: starting chemo.

Hi - i started first of 4 EC chemo on 19/08, have 4 rounds paclitaxel after this followed by operation then radiotherapy. i used the cold cap - best tip is to massage round your head for the first 5-10 mins it really makes a difference (thanks to the lady who was on the ward for the tip) was about to give up before she encouraged me to keep at it.

i've felt up and down since - had massive spike in energy on the thursday - not sure if this is to do with the steroids they gave before the EC? but mega crash friday & been v tired & on & off nauseous since. also having to inject myself which hadnt been explained previous to treatment starting. 

really struggling to get my head around ability to work this week. i dont want to be sat about feeling sorry for myself but the closer monday looms the more i have the fear over how i'll cope with it.

 

KatBee
Member

Re: August 2020: starting chemo.

Oh Renpen, waiting for results is the absolute worst. The only advice I can give is to try to plan to do things to take your mind off it while you wait. Whenever I am waiting for results I have make lots of plans to do things and see people otherwise I drive myself insane worrying. And just remember the more tests and scans they do the more detailed information they will have to give you the most targeted and effective treatment. When will you find out the results? Xxx

nickik
Member

Re: August 2020: starting chemo.

I had my first round of EC chemo a week ago and I too have felt similar to you in the way of thinking 'that's it now I've had my treatment, I hate everything about it, I don't want any more, thankyou.

I too am a coffee lover that has completely gone off coffee, wasn't prepared for that at all.

It is hard ro know what are 'normal' side effects, I expected to feel tired but I am absolutely wiped and day 7 not much improvement.

Amy1988
Member

Re: August 2020: starting chemo.

  • Hi renpen. Sorry you're going through this too. You're treatment plan sounds the same as mine and my cancer is also her2 + too. I didn't really understand what it meant, but they have told me it responds well to treatment. I had to have 3 scans before i got my full results and it is such a stressful time. I tried to be positive but sometimes i would just have a meltdown about it all. Try not to worry too much about ct scan, whatever the results, there is so much they can do now. I still haven't shaven my hair yet, i just don't think it will suit me lol. But they've told me it will likely be gone by my 2nd round of chemo. Have you got a start date for yours?
Amy1988
Member

Re: August 2020: starting chemo.

Hi everyone. How are you all? Im on day 9 now. Not feeling too bad, just a little more tired. But ive got this horrible stinging sensation on my back, it feels like there should be a mark there but theres nothing! The nurse said skin can be more sensitive on chemo but its a mystery to me. I get what you mean about constipation, i seem to go days at a time without needing to go. Im hoping to go on a little trip out next week, as im still on my 'vunerable' days. But im so bored now lol

renpen
Member

Re: August 2020: starting chemo.

hi everyone

I’m new to this. I’m starting Chemo on Tues 24th TCHP, for HER2 + breast cancer. 6 sessions followed by surgery and then radiation and herceptin for 12 months.

im not over worried about the chemo, although I’m sure I will be when it happens. My BC team are so lovely so I feel better when I’m around them. I am going to try the cold cap, I’d be keen to hear any tips.

i went to the hair dresser on Tue with a plan to cut my long blonde hair short, but I bottled it! I haven’t had short hair since my Lady Di haircut in the 80's. I’m 50 now but I don’t feel or look old, or I didn’t until this month! Normally I run 4 times a week and I run a business. I have a 15 year old daughter who is breaking her heart over this.

and up til today I genuinely thought everything is going to be ok. The consultant told me that the HER2 is very treatable and he thought he could cure me,  then Today he said that the sentinel node biopsy results show cancer in all 3 nodes that they removed and my MRI results show more cancer spots throughout the breast.

I have a ct scan booked for Monday and now I’m so far past worrying about my hair and back to worrying if I’m going to survive. The rollercoaster just seems to keep hitters with more bad news.

now I’m worried that I’m going into chemo in such a state emotionally, I need to find some more inner strength. All of this positivity and saying the right thing to everyone is so exhausting! 

any top tips for what to take, what to have in at home etc would be great. I think I need to 'control the controllables' to take my mind off it

Maire
Member

Re: August 2020: starting chemo.

Happy birthday Becci, one you’ll never forget I’m guessing. Good luck with chemo 2 on Friday, hopefully you’ll kick it out the park.  Fingers crossed the blood clot resolves. It’s such a pain having to deal with something else alongside chemo. I’m still struggling with a leaking seroma. I now look as though I have pecs! The fluid is so tense throughout the old breast area. Seems like a viscous circle. As long as there is a route out (though really tiny) the fluid keeps forming.

Katbee, I had constipation for a day or two then the opposite. I’m now more settled though I do have to make a quick run for the toilet several times a day. Def get medication sorted out because that sounds agony.

Mbee, Sorry you’re at the low point. Don’t fight it. Sleep as much as you need, try to drink too. I found drinking really difficult. I’m still completely off tea. It’s so weird. Water makes me boak and citrus juices are giving me acid reflux. So I’ve been trying Tropicana berry juice and apple juices. I actually did a fluid balance chart just to make sure I wasn’t getting dehydrated and because my urine seemed quite dark. I def wasn’t drinking enough.

I really understand the desire to chuck chemo when you’re at lowest ebb. I was the same with the headaches. And I’m going to really stress this whenI have my telephone appointment before my next chemo in the hope they can either reduce the dose or come up with a reason/solution. But, I promise, you will feel better soon. It really is a good idea to keep a record as has been suggested. I’ve looked over mine and can see the pattern of headache intensity which does seem to correlate with injections so I’m going to be asking if there’s an alternative (I know that there is as I came across a Breast surgeon’s blog, where she had the same issue)
I had turning points at day 6, day 9 and day 12. Each time there was a slight easing of one of the things I was experiencing be it nausea, weakness or ultimately the headaches.

Hope today is a good day for everyone and you all achieve a little goal.

FindingDory
Member

Re: August 2020: starting chemo.

So sorry to hear how much you’ve been struggling - the 1st week afterwards was hell for me but i then i’ve honestly felt ok for the last couple of weeks, a little bit more tired than usual, but i’ve been going for a walk everyday & still managing to keep up with my very energetic 2 year old! 
my taste buds have gone a bit haywire, i cant seem to taste sweet things the same, tea & coffee taste weird & for some reason all i wanted to eat during that first week was tuna sandwiches!! How was your burger after years of being a veggie? You must really of needed the iron to be craving it that badly! Hope you feel better soon xx

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Steroids cause botty block especially on fec, used to take senokot on 4th, 5th and 6th day after chemo to get things back to normal and also shares in anosol 👍 you will settle into what works for you, t made it go the other way for lots of us, so just wanted to let you know you might not need additional help when on t, other than good running shoes to get you to loo quick 😲 💕💕Shi xx

FindingDory
Member

Re: August 2020: starting chemo.

Hi ladies, hope you’re all doing ok as you possibly can be. i’ve been feeling generally ok since my blood clot arm has been feeling better and i ended up having a lovely weekend celebrating my 40th birthday. My hair decided to start falling out the day after my birthday though (so day 15) and now it’s coming out in handfuls. I dont have any bald patches but its so much thinner already. I have my 2nd round of chemo this Friday so i’ve decided to brave the shave on Thursday - i just can’t take seeing all my curly hair going for much longer, so my partner is going to do it for me. 
katbee - the constipation was a side effect for me too, although i’m not sure it was from all the medication or the chemo itself! I hadn’t been the toilet for 7 days, so i phoned the nurse & she sorted a prescription for senna tablets & some aptly named ‘Laxido’ sachets which got things moving after a couple of days! Never experienced any thing like it before so was getting quite worried. Like you say, it’s just one more thing isn’t it?! I’d check with your nurse If it’s painful now for you to go to the toilet since though, it doesnt sound pleasant at all you poor thing. I hope you’re ok. 
I’ve got an appointment with my oncologist tomorrow to check how i’ve got on & then i’ll have my bloods taken as well ready for Friday. I’m feeling a bit apprehensive about it but i’m just praying that they’ll know now to give me the right meds & that this time so i dont feel as bad. 

Big hugs to you all, Becci xx

KatBee
Member

Re: August 2020: starting chemo.

So pleased you are feeling better Marie. I’m sorry you are having such a rough time mbee -have you been making a note of all the side effects? My nurse told me to try to keep a day to day diary so that when they consult with me about how I’ve found the first round they can try to adjust meds and prescribe what they can to make it as easy as possible for me so do tell the nurses everything you are suffering and they may be able to help. 

Im on day 12 now and managed a 16km bike ride today! I’ll probably sleep for the next 2 days as a result but it’s lovely to feel physically tired this evening rather than just chemo tired. I felt rough for the first 5 days with constant nausea and headache but have gradually felt better and better each day ever since. I try to walk the dog for at least 40 mins a day to get my heart rate up and fresh air and I think that little goal has really helped. 

slightly personal question...how are you all on getting on with the constipation side of things?! I was really bad the first few days and didn’t go for about 5 days and then after that it was pretty unpleasant and I think I’ve torn something. The last 2 days it’s been like pooing glass, vomit inducing painful. I’m going to phone the nurses tomorrow and see if there’s anything they can prescribe to help - urghhhh - so many little battles to try and win with this thing aren’t there?! 

m_bee_w
Member

Re: August 2020: starting chemo.

Hi Maire, 

that's so wonderful to hear, I definitely needed to hear there's a way out of this, as I'm 5 days in after my first ever chemo (EC) and almost thinking of calling the oncology team and refusing further treatment, I'm hating it so much.

Yes I'm probably being dramatic but it has hit me so hard, I've never known fatigue like it. Fortunately no other side effects other than a rash on my upper arm today, a peculiarly strong sense of smell, and a sudden hatred of the taste of caffeine (I'm missing my morning coffee and tea so much though). I'm also craving red meat after years of being veggie, so I guess my iron count is low and I'm actually going to have a burger tonight! 

Maire
Member

Re: August 2020: starting chemo.

Hi everyone, Hope you’re all coping ok with the side effects of first chemo (and 2nd for those a wee bit further ahead). I’m on day 13 and feel human again. Headache started to lift yesterday thank goodness. I’m beginning to think it was the Filagrastam injections. It’s great to feel well again. So for those feeling sick and unwell, it’s amazing the change from feeling unable to get off the couch, to buzzing to get things done.

Ive just booked my bloods for next week in preparation for round 2. Gulp!

Chantzy1
Member

Re: August 2020: starting chemo.

hi sparkle123, I had my 1st chemo on 7th August I am having 4 x EC and 4 x paclitaxel had to inject white blood cell booster for 7 days, after first night projectile vomited felt better for that though been OK since, went for a walk 3 days after felt like I was 106 years old I'm a active 46 year old night sweats but felt chilly checked temp all ok and tip of my tongue is bit sore. How are you doing chick. 🥰

Stephie82
Member

Re: August 2020: starting chemo.

Hi Maire, 

Thanks, that's so helpful. I'm 38 so I think I've probably missed the boat although my oncologist said park it and reconsider in 3 or 4 years.  I feel that's too late but I'm so lucky to have my little boy and will just be grateful to be back to being normal again. But it's still lovely to hear though that your sister didn't go into permanent menopause with treatment. I know chemo can sometimes trigger early menopause but not always.. Fab news! I'll be on letrozole in the future and I thought that would trigger menopause (which would just be an extra kick when down lol!) but I've done a bit of research and it doesn't if given zanodax I believe so there is hope.. Think I'm still slightly in shock from diagnosis and menopause straight away on top would just be a bit too much to get my head around. It's so nice to look at the positives.

 

How's everyone doing today? I'm day 6 and I'm fine except not sleeping great (steroids I guess). And things are starting to taste strange now! Water in my lovely new water bottle tastes awful lol! Think I read to try adding lemon so I'll give that a whirl. I've also got a touch of chemo brain.. can't think of words sometimes.. My son laughs at my random words lol. Hope everyone's ok today 🙂 xx

Maire
Member

Re: August 2020: starting chemo.

I’m trying to remember the timeline for my sister. She had chemo in 1999 I think Her tumour  was oestrogen positive. She had powerful chemo but I’m not sure what kind they were giving then. I do know she was violently sick with it. She then had radiotherapy and 2 years of tamoxifen (which was the recommended advice then). She then had a few periods before trying for a baby and conceived in early 2002. So she became pregnant quite quickly after stopping tamoxifen. She was 36 when she conceived. I think your age when undergoing chemo is crucial. I had my last chemo at 49 and had a final period then everything shut down. But there is undoubtedly hope. 

Stephie82
Member

Re: August 2020: starting chemo.

Hi Maire

Just to say thanks for this positive post! We were trying for our second when I found my lump in may. I chose not to do fertility treatment due to being oestrogen positive. I'll be on letrozole later on. Did your sister come off her tamoxifen/letrozole to conceive or maybe she wasn't er+ so wasn't on hormone tabs. So wonderful to hear she's so many years post BC! .. Yay for positive stories.. Plus treatments come on even more lately! 🙂 x

Stephie82
Member

Re: August 2020: starting chemo.

Hi everyone, I'm still getting the hang of this board and messages, will catch up! .. Im day 4 post 1st chemo and felt fine up until now but now feeling yucky today. Big hugs to everyone.. We'll get through this. I wonder if in the future we could set up a WhatsApp group or a Facebook group? That may be easier to follow and keep up with each other? Just a thought. Steph x

Maire
Member

Re: August 2020: starting chemo.

Sorry to hear of all your experiences. The first one can be a roller coaster until you get some idea of what to expect. I’m on day 9 now and a little better apart from the persistent dizziness. I drove yesterday and it was a surreal experience. It didn’t feel at all safe. I felt as though I’d been drinking. Still feeling a little nausea but I’m def better today. Apart from the weird head.

Id agree with others that it’s best to call the helpline if struggling with symptoms. Def flag up the tingly hands if it persists.

 

 

Amy1988
Member

Re: August 2020: starting chemo.

Hi mb. I had my first chemo yesterday morning too. They said i should feel the side effects today (great) but i was sick within hours of getting home. My head is sore too. I hope we can all get through this together and like you say, it will pass. Feel free to message me anytime

m_bee_w
Member

Re: August 2020: starting chemo.

Hi everyone, 

I had my first ever chemo this morning (adjunct, EC) and I'm already feeling lousy, really weak and achy, with tingly hands. I keep wanting to cry because it all feels so relentless. I know it's early days, but I really hoped it wouldn't feel this bad. All I want to do is sleep and drink water. 

Sorry for such a miserable post! 

Thinking of you all - and remembering: THIS TOO SHALL PASS. 

Take care, 
MB 

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Hi Amy, glad you’ve checked with your unit, keep hydrated, watch your temp and if you are sick again, get back in touch with your unit, they should tweak your antisickness meds ❤️ Even if you have no temp but something doesn’t feel right always ring your unit, if your wee starts to burn like a uti and no temp ring your unit it’ll need antibiotics, if you get thrush or thrush mouth again ring unit it will need antibiotics 👍 always keep safe on chemo and ring your unit, they want to keep you safe through chemo and you being vigilant will help them help you ❤️💕💕Shi xx

Amy1988
Member

Re: August 2020: starting chemo.

Hi shi. Ive spoke to the nurse and she said it can happen that soon after. And i had a heavy lunch after, probably not the best idea! Ive taken another anti sickeness tablet so hopefuly they will kick in. Im just dreading the next few days 

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Hi Amy, ring your rapid response card and check with your team, everyone is different, always ring your team, keep safe 💕💕Shi xx

Amy1988
Member

Re: August 2020: starting chemo.

Hi everyone. Ive had my first round of chemo. I feel ok apart from a bit tired but i didn't sleep well last night because i was stressing! The nurses reckon i will feel side effects by tomorrow. How is everyone else getting on? 

Update: i hope this doesn't sound stupid, but is it normal to be sick within only a few hours of chemo. I have been but it seems very soon 

KatBee
Member

Re: August 2020: starting chemo.

Sorry you’re still feeling so rough Marie, hopefully as you move into the second week things will improve? 
Finding Dory, that sounds like such a tough start to chemo! I’m so pleased your coming out the other side now. Isn’t is crazy how it affects everyone so differently? 

Im 1 week on from my first chemo now and feeling much better. The 5 days after it were very manageable but I did feel rough - a headache I couldn’t really shift, constant low level nausea and so tired. But yesterday and today I’ve had no headache and nausea and feel like a new woman! I think that a heat wave hotter than the fires of hell didn’t help with those early side effects either! I’m curious if the tiredness will get worse this week. Last night I feel asleep at 730 and woke up 12 hours later and I’ve just come upstairs for another nap now! My 2 little girls are back at school in a few weeks so I’m mindful of not wanting to miss out on doing stuff with them but equally I just want to have a nap after just making lunch! Good luck to anyone starting their chemo this week xxx

Maire
Member

Re: August 2020: starting chemo.

 

Maire
Member

Re: August 2020: starting chemo.

Still feeling awful here on day 7. Sooo weak and dizzy but really wanted to just send positive vibes to you all. In particular re fertility. My sister had her first breast cancer at 33. She had 4 nodes involved and had horrendous chemo with brutal side effects. She didn’t have time to have any fertility treatment. But several years later became pregnant with her 2nd daughter. 18 years later her daughter is off to uni to study teaching. I just want to drop in a little hope for those hoping to start/continue families after chemo. My sister and her family are thriving 22 years after breast cancer treatment ♥️

Stephie82
Member

Re: August 2020: starting chemo.

Hi MB,

I just wanted to say I also backed out last minute of the egg harvesting (as involved oestrogen). I start my first chemo today and it's tough isn't it knowing chemo is possibly damaging fertility. Big hugs to you and I hope everyone else is doing ok x

FindingDory
Member

Re: August 2020: starting chemo.

So sorry to only just be replying to you MB, my 1st chemo was 31st July & it was a rough 1st week afterwards for me, but i’m much better now thank god!

my 2 surgeries were only a few weeks apart & i also struggled with the GA too, but i’m healing well and i’m hoping to have a breast reduction after all my treatment is finished to even things out! 
I’m so sorry to hear that you felt you couldnt face going through the egg harvesting process, I realise that i’m incredibly lucky to have already completed my family before my cancer diagnosis and my heart goes out to you. I hope that you’ve got lots of love & support around you at this difficult time. 

I wasn’t in the celebratory mood, but i’m feeling better & stronger this week, so i’ll be raising a big glass to you all on my 40th birthday this Friday! Big hugs, Becci xx

FindingDory
Member

Re: August 2020: starting chemo.

Hi Ladies, really hope you’re all doing ok & Maire i’m sorry to hear that you’ve not been feeling great either, i hope you’re feeling a bit better today, although i know the heat doesn’t help. 
It’s been 1 thing after the other for me since my 1st chemo unfortunately & I had an ultrasound scan on friday to confirm the blood clot in my arm but they dont want to take the picc out unless they really have to or i decide that i’ve had enough of it basically! I’m on these daily blood thinning injections now for the next 7 months at least & i’m going in tomorrow to have my picc cleaned & flushed. Also, having never suffered from constipation before, it’s certainly been an experience now having had it as another side effect of chemo - all i can say is always keep a tin of prunes in the cupboard just in case....

On a positive note, apart from the aching in my arm i’m feeling good! I stopped taking the anti sickness a few days ago, my energy levels are on the up and i look & feel human again! I’m just wondering now when my hair is going to decide to vacate my head, but i’m generally feeling positive again and when i have my 2nd chemo next Friday i know i’ll be better prepared this time. It was a hell of a week but i’ve come through it still smiling, we’re going to have **** days but we’ve got each other & we’ll get through this, Big hugs, Becci xx

Maire
Member

Re: August 2020: starting chemo.

Hi All, I was holding off on posting as have not been feeling great and was hoping to wait till worse was over.

Im on day 5 and have felt quite rough. Nausea, persistent achy head, stomach discomfort. Tiredness and weak. I think I feel worse than I remember from 2012 but I’m 57 now and heavier. I also think I’ve had a fairly large dose. Also last time the Cyclophosphamide was in drip form and this time it was syringe and def felt worse going in.

On the plus side, I’ve no se from the filigrastum injections and have had 3 so far.

I am managing to get up daily and have gagged once but not vomitted. I’ve cut the grass and been for a walk but I can’t face cooking and seem to just lie on the couch.

I know this will pass. And I’m only getting 3 EC  so I will get through then switch to doxetaxol which I found easier before.

Next time I will def up the fluid intake. I’m sure that would’ve helped.

Dont be alarmed by my yukky experience. It’s diff for everyone and I’m getting through it and managing to sleep. Try and get support in the house and stock up on easy food if you can.

Best of luck all. I’ll post more as symptoms ease. Which they will.

Love

Maire

Stephie82
Member

Re: August 2020: starting chemo.

Hi Maire, sorry I've not logged on here for a while, it's been busy with work and my little one but I've taken next week as leave and obviously after that I'll be on sick leave when I need it.  How are you feeling after your injection Maire?  Hope you're doing okay today? 

And Kat I hope the cold cap works for you.. fingers crossed.. I've not even decided if I'll give it a go yet..  I wasn't going to but apparently even if it doesn't work properly it can help with regrowth coming through more quickly in the future so I guess it could be worth trying.  I've tried on some hygge bands I bought but they dont suit me.. I look ridiculous (my son asked if I was going swimming?! ha ha ha! It did make me laugh (he's only 8).. I think I need to invest in some hats!  I'm glad we're going into winter!   I hope everyone else on here is also doing okay today? Big hugs to everyone and we'll get through this together 🙂 xx

Stephie82
Member

Re: August 2020: starting chemo.

Hi Amy, I start my chemo on the 12th, so the day before you.  I need to catch up on all the messages on here but just thought I'd say hi.  I've been told that the main thing is to drink drink drink drink to flush it out.  They say we'll feel generally crap but we shouldn't feel so ill we cant get out of bed etc.  General crappiness sounds doable I think and we'll all get through it together.  Obviously they'll be days when we dont feel crappy too so that's good.  I'm having 4 cycles of EC then 4 of Pacs.  I'm having it 2 weekly x

Maire
Member

Re: August 2020: starting chemo.

Thanks katbee, 

Glad your first  Chemo went smoothly. 
Ive been a bit spaced out and vaguely headachey. Planned on cutting grass yesterday but was too tired. Vague nausea but nothing too debilitating. I didn’t find cold cap too bad. In fact it wasn't even all that cold so I feel a bit dubious about it having worked. Time will tell. Last time my hair all fell out about day 26 or so.

Just had my husband give me my first filagrastam injection. Had to phone the helpline as there was lots of plastic sheaths etc but we got there.

Suddenly not really enjoying my tea. Think I remember that from last time.

Bracing myself for the oncoming side effects. I do remember last time I always felt better with a walk and distractions. 
I’ll def take some sweets with me next time. Thanks for the advice.

KatBee
Member

Re: August 2020: starting chemo.

Hi Marie,

Great that your first round went ok. I started yesterday too and used the cold cap. It’s pretty uncomfortable isn’t it? But if it does the job it’s worth it! Apart from a headache and mild nausea like you I feel fine. I feel a bit like I’m sitting on a ticking time bomb waiting for more side effects to hit though! Quick tip - my nurse gave me a couple of sweets to such during the drug that makes your nose tingle and it really helped so maybe take a couple in with you next time and see if that takes the edge off xxx

KatBee
Member

Re: August 2020: starting chemo.

Hi MB,

welcome to the group! Sorry you had such a rough time after your ops, I would have really struggled with 2 lots of ga so close together too - it took me forever to get over the anaesthetic from my mastectomy. There are so many decisions thrown at us during this time aren’t there and everything happens so quickly, it is an absolute whirlwind. 

Good luck with you chemo next week. I had my first cycle yesterday and it was fine. The nurses were lovely I had no reactions to anything. I used the cold cap too Marie. It’s pretty uncomfortable but bearable and if it means I can keep some of my hair it’ll be worth it for me. I have really thick hair so had to have it on for even longer. 

I’ve had a bit of a headache and some mild nausea since yesterday but nothing else which I’m really pleased about. I even managed to walk the dog when I got back. I had visions on vomiting and being curled up in bed but so far so good. I’m on my way back to hospital now to have some scans on my thyroid as my ct scan found a lump on it which need to get tested. Bloody typical 🤦🏼‍♀️ 

m_bee_w
Member

Re: August 2020: starting chemo.

Hi Becci, lovely to meet you.

I imagine you might be feeling like I do - I never expected to be going through breast cancer, certainly not in my thirties anyway! 

I hope you have recovered nicely from your surgery. I had my axillary clearance a month after my mastectomy, and my body really struggled with a second lot of general anaesthetic in such a short space of time. So much so that I couldn't face going through egg harvesting or IVF before beginning chemo. Just have to hope it's a decision I won't regret in the future, as I don't have children.

Though I understand you aren't feeling in the party spirit right now, I think you more than deserve to indulge yourself on your 40th next Friday! ♥️ 

Have you started chemo yet? 

Take care, 

MB x 

 

 

Maire
Member

Re: August 2020: starting chemo.

That’s my first one downloaded folks. It was ok. Was worried about the Epirubicin as last time I was shaking. This time I was fine. Not so anxious maybe. The cyclophosphamide made me feel a bit weird in the sinuses. This seemed to last a long time. I also cold capped. I am not convinced it’ll work as I only found it mildly cold. Got a carrier bag of drugs to take home.

The ward was quite lively with some great characters and ended up being a really jovial experience.

I will keep you all posted on side effects etc in the hope it helps you with your experiences.

Feel absolutely fine at the moment.

Sorry about your arm Becci. Not fair. You really don’t need that. Glad they are tackling it and I hope you get relief soon.

Good luck everyone. The roller coaster ride is just pulling in!

Photo of my cold cap. Ignore all the chins.

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