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September 2021 Chemotherapy starters

reluctantexan
Member

Re: September 2021 Chemotherapy starters

Hello to all,

I'm new here and was a bit lost on the forum until amy46 took pity on me and helped me out. Thanks, Amy.

I had my first cycle last Friday and have managed to control the side effects pretty well.

As for hot flashes, I was on HRT for 36 years and had to give it up cold turkey in July when we discovered my cancer. (I'm triple positive, which I guess is the exact opposite of triple-negative.) I was using cold packs but discovered that I got faster results cooling off with a spray bottle filled with water. Maybe that could help others, too.

g

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Thanks Lou 😊,

Yep being off the HRT has been a bitch, I didn't realise the GP could prescribe something, but like you I don't want anymore drugs at the mo, not that I pill popped ever before! I did mention my hot flushes to my oncologist she said buy a thinner duvet and get a fan both of which I have purchased and like you the fan is running most nights. I wish you all the best for Friday 🙂

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@Somerset Bunny 

My chemo doesn't start until Friday. I had to stop taking my HRT too and I mourn it so much. I have hot flushes and get so hot during the night, I have my fan going for most of the night. 
I have been told my GP can prescribe something else for the hot flushes but I'm reluctant to have any additional drugs at the moment as I'm going to be having enough going on with the chemo.

I hope you go on okay on Wednesday 

Lou. X

aliess
Member

Re: September 2021 Chemotherapy starters

Hi 👋🏻 @Somerset Bunny 

welcome to the group, I had a bit of a wait for HER2 tests also and was borderline for chemo. But I guess we have to throw all we can at it and trust the process. I also stopped HRT but haven’t had any recurrence of meno symptoms. I can tell you though, that since I started chemo I sleep like a log. Everyone’s treatment and experiences will be different in some ways but we’re all here to support each other. Let’s us know how you get on tomorrow

💕

HMLL
Member

Re: September 2021 Chemotherapy starters

Never be sorry for feeling the feelings. The more you share hopefully the more support you get and the better you feel. Hope things are better today xx

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Thank you @amy46 ....especially for your reassurance re the pic line 🙂

amy46
Member

Re: September 2021 Chemotherapy starters

@Somerset Bunny  welcome to our group. I am having different chemo to you but 5 rounds in I can honestly say it hasn’t been nearly as bad as I expected. I have a port but I think you’ll be pleased with your pic line. It’s really no big deal to put in (I am

an anaesthetist in my normal life and we put these in a lot) it’s not much more than a Cannula really so don’t worry. 
The hair I can also relate to - I had very long hair, cut it chin length and then shaved it off. Again, it wasn’t as bad as I expected. I do have a wig that I love which helps. You can do this, it’s not the most fun but it’s doable I promise 😊

 

@aliess and @Mrsmillie  thank you for your lovely messages yesterday. I feel a lot better again in today. What a rollercoaster of emotions we are going through. It really helps having people here who get it xx

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Hello ladies,

I hope I have clicked on the right option to post within this thread, I founf a lumpin June, had a lumpectomy in July and my chemo journey starts Wednesday (28th September, six round of FEC-T...so Christmas is going to be playful!). The hospital has been testing my tumour and putting me on trials, as they classed me as borderline but have now decided to go ahead with chemo hence the delay (this has not helped my mental health). Apprehensive and emotional atm to say the least. I had my hair cut short in preparation last week which was hard, as it used to fall down well below my bra line just grazing my waist.

Having my Picc line inserted tomorrow, again something I am not looking forward to although I have been informed by others who are breast cancer survivors this will become my best friend. I am a light sleeper, not helped by the fact night sweats have kicked in again since I had to come off HRT so hope I will not find this to uncomfortable, anyone else found they tend to sleep with masses of cushions and pillows now?

Wishing everyone the best of luck and hope our chemo is as kind and uneventful as it can be to us all. 😊

aliess
Member

Re: September 2021 Chemotherapy starters

@amy46 

Don’t apologise! Emotions are bound to be bubble to the surface. I’m all over the place. Fine one minute then totally broken the next, five minutes later right as rain again. Crazy isn’t it! I find myself still disbelieving this is happening and wondering how the hell I got here. We’re allowed to feel sorry for ourselves. 
I woke today with a very sore and angry spotty face. Needless to say I’m staying in 😂 but I’ve made some soup and I’m doing a bit of sewing. Do what feels right for you in the moment don’t think too far ahead. Love to all

💕

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

@amy46 

Never feel the need to apologise for having any wobble, it’s a horrible feeling when you don’t know why your own body is causing you so much anxiety. I’m sure we’ve all had that horrendous feeling that a symptom is so much worse than it really is…..I know I definitely have on more than one occasion, and like you my poor husband has taken the brunt of it all…..I don’t know that you can avoid it, it takes over before you know it. You will feel weary and tearful because the lack of sleep just adds to it all, it’s impossible to feel positive and up for 100% of the time, we have to allow ourselves to feel a bit resentful at times for all we are going through, it’s hard work trying to put on that positive face day after day! Be kind to yourself today and moan away if needed 😖……sending hug 💕 xx

amy46
Member

Re: September 2021 Chemotherapy starters

@HMLL 

That’s really interesting about the fasting. I looked at it but I lost a bit of weight initially through anxiety and I can’t really afford to lose any more so I decided against it.

I had a bit of a wobble yesterday. The soles of my feet feel a bit funny and I managed to escalate this to me not being able to walk. Had a massive melt down on my poor husband. I just had that feeling again from around diagnosis when I get panicking that I was going to die. Horrible. Slept so badly after all the upset. Don’t know how to avoid this sort of thing really. I try to stay so positive most of the time but sometimes I feel weary and like there is still so much to get through. Sorry for the little moan, just feeling a bit tearful and sorry for myself today. 
Hope everyone else is doing ok. Sorry x

HMLL
Member

Re: September 2021 Chemotherapy starters

I’m doing ok, having 1 week of feeling like I’ve got the worst hangover in the world. Then a week of feeling relatively normal. I have been doing the fast mimicking diet which I think has really helped. First cycle I did 3 days and day of chemo, 2nd cycle 2 days and day of chemo. Side effects wise, background nausea, fatigue, oral thrush due to dex, insomnia due to dex. Will ask if I can reduce my steroids this cycle. X 

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @aliess @amy46 @Mrsmillie and everyone else here today. Hope you are all coping with the side effects. I find each day a little different! Not sleeping well and so just bushed, and I have a lot of pain today. I made myself go for a walk though as just sitting about is not good! I have also found myself breathless on occasion without any real exertion. One flight of stairs will do it! Also done some cooking etc so feel I am getting back to some "normal" duties.My mouth is still extremely sore and cracking at the corners-really bad so using lots of lip salve and some germolene. A dental issue is getting me down-all was fine before chemo and I did go to the dentist. So this has been brought on by the side effects I think. I may need to go back to the dentist again at this rate as I can't see it improving much over the next 5 cycles. My friend's husband lost a lot of fillings while on chemo-they had been fine beforehand so obviously it is weakening our teeth to some degree. All quite worrying!

Thanks for all the tips on stuff to watch-I will have plenty of time to catch up with lots of programmes I have saved. Had a laugh at The Grand Tour on Amazon Prime last night. A bit of complete silliness was in order!

I am going to drive myslf home to York tomorrow and have a normal week or so before the next cycle. And I will get my fresh air and exercise going back to see to my pony. I have missed my pony cuddles! I can take as long as I like as nothing much else to do. And I have equipped myself with a folding chair so I can take a rest when I need one.

Having a wig fitting next Thursday-I reckon by then my hair will be falling out, so can do a buzz cut in  readiness! My oldest school friend is coming with me-I think we will have a bit of fun! And a second opinion will be welcome!

Have a good weekend everyone. Jane.x

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, everyone, 

good to hear your stories. I am on 4th day after 3rd EC, this time around with Zoledronic acid. Last three days tough with nausea, and actually headache and the flushes. I probably don’t realize the headache and carry on but will try tiger balm. I have to sleep during the day for an hour or so( that helps). I think I will be getting some time off after the next session to be able to rest.... too much going on. I am looking forward to tomorrow when I think my appetite will improve.

I am scared to not have the GCSF in case my blood count drops...

enjoy some peace and quiet this weekend everybody, xx

veestar
Member

Re: September 2021 Chemotherapy starters

Thanks for the tiger balm tip, I am trying that.. @HMLL 

my headache is so bad now I need to get seen by the team today I hope, it's been constant for 4 days. I went to work yesterday which may not have helped, but I m drinking masses of water, I m beside myself with this headache now.

Hope everyone had a good friday night.

x

aliess
Member

Re: September 2021 Chemotherapy starters

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We can get through, one moment, one step, one day at a time 💕

aliess
Member

Re: September 2021 Chemotherapy starters

Hi @amy46 

hope your daughter is ok. Glad to hear you made it another week to tick off 💕

aliess
Member

Re: September 2021 Chemotherapy starters

Re Netflix 

@Mrsmillie @Magenta59 

virgin river is a nice easy watch and dead to me is also good 👍🏻 

aliess
Member

Re: September 2021 Chemotherapy starters

@Magenta59 

That’s really good news 💕

aliess
Member

Re: September 2021 Chemotherapy starters

Hope you’re feeling better @Mrsmillie. I’ve been in the chair today so I’ll see if I’m also flush tomorrow. (Sounds like I’ve been on who wants to be a millionaire 😂) I asked the question today “if you have a side effect does that means it’s with you throughout” the answer was they come and go so that’s a bit of a relief. I was really breathless last night and today. I did recover slightly, I may have been over doing it. So lesson to self - just because you feel able, doesn’t mean you are. 
have a lovely chilled weekend ladies 💕

amy46
Member

Re: September 2021 Chemotherapy starters

@Magenta59 

I think not was on sky but I actually paid for it on prime as I was so keen to watch it and I thought it was worth it! Im

also watching vigil and the series sex education on Netflix which is so rude but very funny.

Hope you are feeling better and no more nose bleeds x

amy46
Member

Re: September 2021 Chemotherapy starters

@HMLL  

How are finding the EC?? I am having that next x

amy46
Member

Re: September 2021 Chemotherapy starters

@HMLL  I have a port and it settled down pretty quickly. It’s so handy not having to have a cannula each time I think you will be pleased you got it. Did they give you some numbing cream to put on before you go? Xx

HMLL
Member

Re: September 2021 Chemotherapy starters

@veestar sorry about the headache, I had an awful headache due to the GCSF so they switched me to the weekly injection instead of the daily which helped. Tiger balm worked well for the week long headache I had and also I had some reflexology. Hope it settles x 

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Red, flushed face and headache today, same as last week…..not too bad. Day 3/4 last week were the ‘bad’ days so I’ll see if that’s going to be the shape of things going forward, but at least I know what to expect, so forewarned is forearmed I suppose.

Glad things eased up for you today @Magenta59 enjoy your lovely walk today, always feels like an achievement when you’ve made the effort to get moving.

Always looking for tips on what’s worth watching on the various channels, I tend to spend so much time trawling through for something to watch, then give up…..Firefly Lane was a good watch, think on Netflix…..too much choice!!

Have a good weekend everybody xx

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @Mrsmillie 

hope your'e feeling okay today after your chemo. I think I might finally be starting to recover a little as now day 10 of the cycle. Slept a bit better and although tum is still iffy, so much better on the Buscopan! Will manage my walk today as feel somewhat more energetic!

Jane.x

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @louby_lou69 

Wow that is a challenge you have taken on! No way would I be able to do that in one month! You go girl! I would be doing well to manage a mile or two a day at present-and did nothing strenuous at all yesterday as felt so wiped out. Good luck with that, and I would like to support you too, if you can let me know how to sponsor you.

Jane.x

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @amy46 

feeling more human today so will brave the breeze and stroll down to the cliff top again-it will certainly blow away the cobwebs!  haven't seen Mare of East Town-where will I find it? Searched through the A-Z on BBC iPlayer last night and found a lot of good stuff to watch there, and I have Prime video and always plenty of stuff to choose from.

Hope everyone else is doing okay today. Has anyone had a nosebleed asa side effect? Not something that has ever bothered me but I have had a runny nose for days, and last night out of nowhere a bad nosebleed! Was a good half hour before it finally stopped. Nothing in the literature I was given mentioned this! Very odd, but I guess blood clotting is also compromised at present.

Jane.x

Magenta59
Member

Re: September 2021 Chemotherapy starters

HI @HMLL ,

that sounds really awful for you. I was worried about this aspect of the chemo, and fortunately my veins are good and accessible so they just need to use a cannula. I hope this is not a continuous problem for you and the discomfort eases soon. Sending a big hug.

Jane.x

veestar
Member

Re: September 2021 Chemotherapy starters

Hi

I know how you feel about the port . It was a niggling pain that lasted a few days .

Hang on in there .

I have had such a bad headache since I had my first chemo . 🥲.

inspired by the 100 miles walk well done 

veestar x

HMLL
Member

Re: September 2021 Chemotherapy starters

Good to see everyone’s updates! I’m a week post 2nd cycle of fortnightly EC and just had my chest port fitted yesterday. Surprised by how much it’s hurting today, I’m normally pretty high threshold. Mainly where the catheter is tunnelled from the port to my collarbone. Hoping it settles quickly…?

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Hello to everybody,

Had second chemo session today, be interesting to see if I get the red, flushed ,hot face tomorrow!

Glad to hear you managed to get your chemo today @amy46 another one ticked off!

Just pottering in the garden is a good way to get your dose of fresh air @Magenta59 battling strong wind as well makes it doubly useful ( hope it wasn’t strong wind from your dodgy tum 🤣 ). Even better to turn into a couch potato for a few hours.

I would certainly like to sponsor your walk @louby_lou69 but I’m not on FB is there another way of doing it? 

Hope everyone has a decent sleep tonight…..take care xx

 

 

amy46
Member

Re: September 2021 Chemotherapy starters

@louby_lou69 

I want to so yes please DM me 😊

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@amy46 

My fundraiser is on Facebook so if you want my FB I can DM it to you but please don't think you have to.

Ive watched Mare of East Town and it's brilliant. Also Clickbait on Netflix is very good.

 

amy46
Member

Re: September 2021 Chemotherapy starters

@Magenta59 

Nothing wrong with a day on the sofa if that’s what you need. Have you watched Mare of East Town? I really recommend it if not 😊

Hope you feel better tomorrow xx

amy46
Member

Re: September 2021 Chemotherapy starters

@louby_lou69 

That’s awesome you are doing the walk! I was thinking about it, but I’m still finding I want to be quite private about who I talk to about this at the moment so I’ve decided to wait until I’ve finished my treatment and then do some fundraising. If you send me your link I will sponsor you. 

I had my chemo today but my white count was just on the cusp 1.5 - didn’t see that coming as I have felt pretty much ok this week. Hopefully it’ll go up not down before next week 🤞🤞

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@Magenta59 

I think the worry is not knowing how I'm going to react to the chemo, it's an unknown isn't it? 
I'm doing the Breast Cancer Now walk 100 miles in October which starts on 1st October. I'm going to go out early and try and walk 5 miles before my chemo in the afternoon. I'm hoping I can complete it as I've raised £591 so far in donations. In fact I WILL complete it. 

Lou.  X

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @louby_lou69 , so glad to hear you now have a treatment plan set out and a start date. You might find you can relax a bit now as it is in hand. Good luck with it, and hope you manage it all okay. I am over a week in now since my first chemo and boy am I tired! I can't raise power for a walk today, plus there is a very strong wind here to fight against, so just pottering in the garden! Tum still iffy but improved. Just got discomfort in abdomen which never really eases, and constant acid reflux. It kind of wears you down! Being a couch potato today, as I felt better yesterday! And there was I thinking things were improving. Guess it is the result of the blood count being way down. Maybe I was expecting too much of myself.

Big hugs to all, Jane.x

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

@louby_lou69  I think every step brings a mixture of emotions, you’re relieved that you now know what the next stages will be, but also anxious about how you may cope with it all. There’s always someone who’s been there before you who can offer a helpful word or two, that does count for a lot as sometimes we all feel like we are the only one going through all this. I go for my second paclitaxel tomorrow, so feel I am slowly getting into the routine of it all ( not a routine I would have chosen given the choice! ), so far so good, doable.

Sending good wishes x

louby_lou69
Member

Re: September 2021 Chemotherapy starters

Been to meet my oncologist and I now have my plan and start date.

I'm having 3 x EC on a 21 day cycle then 9 paclitaxel weekly with Herceptin.

After that I'm having 5 sessions of radiotherapy and then 5 years of tamoxifen.

My first chemo is October 1st but think I may dip in and out of here and the October starters as you'll be the experts. 

Feel a mixture of emotions. 

amy46
Member

Re: September 2021 Chemotherapy starters

@Mrsmillie 

Hopefully it’ll be ok, I’ve had a negative pcr and daily negative LFTs. Fingers crossed 🤞 

Hope your bloods are ok. Seems so random that some people get a dip and others not. In fact the whole thing seems random with who gets which side effects and how badly, I can’t get my head around it at all! Xx

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Morning all,

Think I slept too well, can’t wake up!…..go for blood test later today before chemo tomorrow, the week goes by so quickly even when not doing a lot. 
@Magenta59 Glad to hear you had a better sleep last night and really hope you manage your nice walk today, no sunshine where I am at the moment, ( northwest) bit grey outside at the mo.

@amy46 🤞🏻🤞🏻🤞🏻🤞🏻all goes ahead with your chemo tomorrow, hope your daughters doing ok.

@aliess I try and convince myself that if it’s making me feel rubbish it must be doing it’s job elsewhere, have to grab the positive wherever we can.

Have a good day all, sunshine or not! xx

 

aliess
Member

Re: September 2021 Chemotherapy starters

@Mrsmillie 

My chemo is weekly also had aches and pains. Just try and trust and imagine that it’s doing the job. Take it one day at a time, and try to boost your mental health. We all have so much strength. 💕

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @amy46 @Mrsmillie . Had a slightly better sleep and so far today no bad tummy issues, although I am still full of wind! Good job I am not going anywhere. Lol! So fingers crossed the Buscopan are working.

Hope you both had a good sleep and that your chemo goes as scheduled Amy.I guess this is a worry each cycle wondering if the blood test is favourable. How long does it take before you find out if it's okay? I get mine done again Monday 4th, then am supposed to start taking the Dexamethazone Tuesday morning, seeing Onc at Midday, then chemo Wed pm. If blood test is not showing you are recovered, do they let you know that day? It is marked as "Urgent". Just don't really want to be taking all those steroids if it can't go ahead. I have enough trouble sleeping as it is.....should have asked but you forget things at the time.

Have a good day, everyone. Sun is shining here at Aldbrough East Yorkshire, and I may have a walk down to the cliff tops and get some sea air. We are about 10 minutes walk away so I might manage it! When I went to the hospital yesterday I felt very weak and by the time I had gone up one flight of stairs I was puffing! Not like me at all. I am up and down stairs all day! Has anyone else had this happen? Only minor exertion, and felt like I'd had a full workout! Barmy! So I need to get out and try and fitten myself up a bit. Will be on my knees trying to do pony chores otherwise!

Jane.x

veestar
Member

Re: September 2021 Chemotherapy starters

Hi Amy good to hear . Which week are you on? Thanks for the tip re numbing cream, shame the nurses didn’t mention it 😞.

I feel fine today & slept ok. Planning on going to work on Friday but I wasn’t sure how I would feel , I have a zero hours contract so I can book shifts if I can .

drinking loads of water ..

I felt very sleepy during the chemo is that how you feel?

hsve a good day everyone 🌸🌸

amy46
Member

Re: September 2021 Chemotherapy starters

@Mrsmillie  

Glad you were starting to feel better. Hope you slept well? Xx

amy46
Member

Re: September 2021 Chemotherapy starters

@Magenta59 I agree with @Mrsmillie 

can’t believe how much you have done given how poorly you’ve been. You just have very strong will power! Hope you had a good sleep at least.

my pcr was negative yesterday so hoping I’ll get my chemo tomorrow 🤞🤞

amy46
Member

Re: September 2021 Chemotherapy starters

@veestar hi!

I am having the same as you! 12 weeks Paclitaxol with the Carboplatin every three weeks. I have a top tip for you - ask for some local anaesthetic cream and put it on one hour before they put the needle in your port then it doesn’t hurt at all 😊

i am finding it very manageable so far. Hope you’ll be the same. I drink 2.5l of water every dat maybe this helps? Xx

Jill1998
Community Champion

Re: September 2021 Chemotherapy starters

@veestar Glad you worked out how to post and finding your way round the forum . All the best with your treatment .x

veestar
Member

Re: September 2021 Chemotherapy starters

Hello everyone

It’s great to read everyone’s posts it’s a great boost to share & offload.

I had my first chemo today . Paxil & carbo  ( I think that’s the nicknames) . Though my port . It’s not nice when they ram it in, anyone else find that ?!

I feel ok just a headache , but I think I might be getting my son’s common cold more than chemo symptoms..😳
I live in the south west . 

Have a good evening & keep the posts up it’s great to share 🙅‍♀️🙅‍♀️.

veestar