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MAY 2021 CHEMOTHERAPY STARTERS

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Everyone 

@Purpledaze @Love running 

Had a rubbish day today emotionally. Feel so sad and angry this is all happening. Cried on and off all day which has just made me cross with myself. Big girl pants required😊

Anyway, tomorrow is another day!

Hair situation not looking hopeful...had cold cap but lots coming out today, going to keep going with cold cap and see what round 2 brings this next week. I have very thick hair so no one would know any had come out but its awful everytime I touch my hair some comes out. It's the weekly wash which my gorgeous husband does for me and I'm dreading it ...seeing it all come out in the bath. Maybe I'm being over dramatic and need to be more positive as they did say it would thin a lot even if I kept my hair. 

Anyway, enough moaning....I hope this next week goes well for all of us....Will post later I'm week as working so may not get on the Forum much. 

Stay strong....'we've got this' xxxxx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello everyone, I hope your Sunday is the best it can be for you!

@Selma59 sorry to hear you had such a difficult time on your first chemo! That sounds really tough.  I hope you will soon start to feel less sick and a bit stronger.  Your son sounds like he is a great support.

Like you I had a lot of sickness (but no heartburn) that started on the same day as my chemo; I had also been given some antisickness (ondansetron) & steroids before the chemo but was then told to start with these at home from the following day, so I didn't take any more on the same day.  I don't think that worked for me and I will talk to my doctor/nurses about my antisickness meds ready for my next chemo this week.  At the time I called my rapid response line and they were really helpful.  I've called them any time I've felt unsure or worried about my symptoms, and they really help me.  I really hope that you can discuss your side effects with your medical team/doctor and get the right meds for you.

@coffeeandcake I'm also having EC every 3 weeks. Didn't know it could be given more frequently, that's interesting. I will ask my doctor just out of curiosity to see what he says about this.  However, I'm happy and confident with my clinical team and the treatment they have proposed for me up to now.  I've also just had my portacath fitted (Friday) and am due bloods on Monday and then chemo #2 on Wednesday. It's still sore today, so I hope it will be ok by Wednesday at least, or I think my veins will go on strike! 😂

Welcome to the forum @ClaireS1978 , sounds like we are in sync: I had my port fitted the same day as you and will also be having chemo on Wednesday. I'll be sending lots of positive thoughts your way!

I've also had some emotional moments, some come out of the blue, and others I understand more why I feel that way.  Like others have commented, I think the steroids made me more tearful, but to be honest I think the pain, uncertainty and anxiety that we are facing is enough to give us reason to cry!  I've told my husband not to worry if I cry, but just to give me an extra hug.  I know it's a cliche, but I do feel better after bawling my eyes out - like a kind of release.  As long as my crying can stop (and it does), then I figure it is therapeutic for me and "better out than in"!

I hadn't heard of Jennifer Young products - you make them sound good, so I will check them out as my skin does feel drier and itchier since starting chemo.

@worriednow how are you feeling now since your chemo?  Hopefully things are going ok for you 🤞 Sending a big hug

@noodledoodle your comment about 'bristles' re- shaved head made me laugh - I can't get over the bristly feeling and it's such a weird feeling when my head is on the pillow 😂 

@Poacher65 I can imagine your disappointment about having to have chemo on your anniversary!  I wish you a symptom-free rest of that day (at least!) so you that you can spend time with your husband doing something nice to celebrate. And if side effects mean you just don't feel up to celebrating on the day, perhaps you can be distracted from how you are feeling, thinking and planning what you will do to celebrate later when you feel better.

@Karden have been thinking of you and hoping, hoping, hoping that your mouth ulcers are on the way out and causing you less pain!

Take care everyone and may next week go smoothly for us all 🌼 xx

 

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running your balcony sounds like an oasis!  There are signs of life from the radishes I planted, so there's hope yet! I'll let you know when I eat the first 'harvest' - hoping it coincides with a good day when my appetite is up 🤞

I ended up shaving my hair off last Thursday - I think I could have lasted a few more days without the hair loss being very noticeable, but it was annoying me to have hair coming out in my hands / brush every time I touched my hair.  My husband helped me shave it all off - we really laughed and laughed!  It feels good now but much colder!  

I'm so glad to hear you've been able to keep up with your running! It sounds like it has been a big help for you physically and emotionally.  I hope my next cycle of chemo is similar to this one, and I feel well enough again in the second half to go for long walks with my dogs.  I've had to stop this weekend as I'm too sore from the Port insertion - nothing serious, but feels better to keep still rather than moving about too much. 

Hope your Sunday has been good x

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze I would love a large garden (and a house actually) and my kids are begging for a dog every day. We live in a flat, so no garden and no dog (for now). 

It seems that we are the same type of gardener you and I. I have put some many seeds in the same pot (there were so tiny) that now I have a mesh of salads growing together. 😂😂. This afternoon I am going to try to separate them to replant them. Been a bit more successful with the strawberries which are blooming. The hopes are high to have some to eat by mid-June or end of June (I am in Sweden). The kids are so excited. My coriander and mint are growing like wild grass, and my basil and chives are getting there. 

Like you say, it takes you mind off chemo and it forced to look up recipes to use all these herbs in the future.

I wish we could exchange and share our production😀. Keep you posted of the progress.

Otherwise, how are you doing? you were saying that your hair had started falling off and you would go for a shave. Have you? I had cut my hair short before and now at Day 14, there are still there. They have not fallen yet (few here and there) but expected it soon (no cold cap either). 

Have a lovely Sunday and see soon

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Selma59 I am so sorry to hear about your first chemo session. Sounds dreadful. I hope you will feel better soon. I am glad you get help from your son.

I know that we all have different schemes and protocols to follow but I am a bit surprised that you have not received anti sickness meds before the infusion. I have to take anti sickness meds 1-2 hours before I take the infusion (27 pills in total including betametason, Ondensetron and Emend), then fewer pills for another 3 days. I am changing a little the meds for my second round, my oncologist is trying to reduce the nausea from the first night. Hopefully it will work out.

Thank you for your explanation on the every second week versus the every third week. I am doing every second week and like @Kitkat23 was saying, I am under 60 (mid 40 going closer to late 40 actually😅). I trust my medical team to know what they do and hope my heart will not get affected. I met my oncologist on Friday and she said that they will adjust my second round as I lost weight and my blood count went too low down after the first one. 

I am quite the sporty type and I am very much into running. I hope that when all this is over, I can get back fully to trail running. I have read a lot about physical activities and chemo and it seems that it does help against the side effects and also it might prevent relapse. My oncologist also encouraged me to continue to exercise. As she said, you know you body best, so listen to it and adjust the intensity. This is positive! I will try to continue to run through chemo, even if it is only short and slow stretches. I will enjoy and cherish them all. I have focused all my strength the last 2 weeks into getting some kind of physical activity every day: minimum 30 min to raise my pulse (walking, biking, Pilates and running). I can say it did not make me feel worse, instead it gave me more energy. I also believe that it helped me a lot with the muscle/bone pain following the injection of GMCSF, as it was not bad (more like training aches). I hope it will stay that way for the rest of the rounds.

This week, I felt 'normal' and yesterday morning I managed a long slow run which I really enjoyed and I am so proud of. It was early in the morning in the woods, I encountered few deers and listened to the song of the birds (even heard a woodpecker). Pure joy! I almost forgot that I had BC and I cried of joy at the end. 

You are asking about the steroids - I agree that I felt more vulnerable for one or two days after stoping them and on the edge of crying few times. I cried watching the news on TV. I allow myself to cry any time to get rid of it inside. I cried at the end of my run too...

Keep on fighting, better days will come. 

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Poacher65 ❤️ I hope you can do something special with your husband on your special day. Whatever it is.

You are right, we are lucky to have them. I also have a very supportive husband. He actually reduced his working time to 80% so he can get the Friday off to help out more home and with the kids but also to be able to spend time with me when I need it the most. The first Friday he was off (one week post treatment), we went biking in the forest and had a lovely coffee by the water. In our busy lives, we never took the time. Something good with the situation. Feel blessed.

Shi
Community Champion
Community Champion

Re: MAY 2021 CHEMOTHERAPY STARTERS

Selma, sorry your first round of chemo has been so harsh, everyone reacts differently to their chemo as it is specifically tailored to you. Always ring your rapid response numbers as first point of contact if you don’t feel right or your antisickness meds not working, remember speed at calling your teams is important during chemo, don’t think ogg, I’ll see how I am in a few hours, things are not like normal during chemo and your teams need to know so they can get you safely through. Step by step you will get through chemo, be kind to yourselves and do all you can to help your teams help you by ringing them ❤️💕💕Shi xx

Selma59
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone,

First of all, thank you all for your kind replies. It feels so good to share and get responds..

Unfortunately, my chemo hit me really hard. In fact, my son is typing this for me at the moment as I speak because I can’t even do this myself. I would like to share as much as possible so that others who might be joining this forum can read and learn about possible side effects. 

My first chemo took only 2 hours. They gave me one antisickness med called Domperidone 10mg (was told to take it 3 times a day starting the next day) and steroids (Dexamethasone, again starting next day for two days). When I was at home, I felt just fine. Nothing was happening at the time. Then I started to get a little nauseous.. I laid down but it got worse. Because I was told not to take any med until next day, I didn’t but it has gotten so bad my sons had to call the helpline. What was worse than the nausea was my stomacheburn.. it was so bad that I closed my eyes and stopped responding to my sons.. the helpline told me to take one antisickness med and one nexium (heartburn med). I took these around 11pm but did not help at all. It kept getting worse and worse. I somehow managed to sleep for 2 hours at some point but woke up to nausea and more heartburn. It was so bad that I couldnt move my body so my sons had to hold me and move me in bed so that I could sit upright. I had to take another stomache burn drug (the one I had been prescribed for Naproxen bcs of my foot problem) which eased it a little but to this time, I still suffer a lot from heartburn. It felt like the steroids they gave me made it worse. Once I took the steroids, my stomach started hurting more. I am still dizzy and can’t eat or drink really. I also have dry mouth that I keep spitting. 

My understanding is that the antisickness tablets (Domperidone) are not really effective for me. I think I need another one. Sadly, I was only given this so I have to take this nausea.. I hope they change me to another drug for the second AC... Heard Emend is a good one. what drug did you all use and did it really help? Did you also have heartburn? 

Now I want to answer some of your questions in this part 🙂 I made my son read all the posts out loud to me :). Yes some hospitals do dual dose and some do every 3 weeks. If you do dual dose, it is harsher on you (mine is dual) hence you need white cell injection boosts. There are some advantages and disadvantages of having AC or EC every 2 weeks: research say that it increases the likelihood of cancer not coming back but on the otherside it is heavier on you (especially on your heart) and the damages are not reversible... if you do not have a strong heart like myself, it is possible that it will weaken your heart and that will be a big problem..

Lastly, I want to say that it is normal that you feel your lymph nodes after the biopsy. That happened to me too and it got me worried that it had gotten bigger but apperantely, once you have a biopsy done, then your body reacts to the procedure and surrounding area might swell. So possible to feel it much more after a biopsy. 

In addition to my questions on which antisickness meds you are taking and whether you had heartburn, I also want to ask how you felt after you stopped using steroids? I heard you feel depressed.. I started doing my white cell injections today and I am really worried that it will hurt later.. how did you cope with that? Any tips there?

 

Please ask me as many questions as you want. It feels really good to share and I would be so happy if I can help anyone. 

Many kisses from me.. Once I can open my eyes, I will write another post by myself. Talk to you all soon!

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running we will do something together I'm sure...not the meal and weekend away we had planned but we are together and that's all that matters to me. He is my world ...and has been amazing since my diagnosis.  ❤ xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Poacher65 although you have your second round in the morning of your wedding anniversary, you might still enjoy a nice lunch/ walk or celebration with your husband. There are few hours between the infusion and the first side effects.

I will have one of my infusion on my birthday (instead of being on the beach south of France as I had originally planned for this summer). 

 

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok glad to hear that your mind got some peace. I had and have many irrational thoughts/frights in my dark moments. 

I hope you are enjoying your week-end. Take care

Kitkat23
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi coffee and cake

i finished chemo last November and had 2 weekly.....I think it depends on your hospitals criteria for the EC protocol.... at my hospital the criteria for 2 weekly dose dense is less than 60 years in previous good health.....anyone else has 3 weekly ....but I would imagine that different hospitals have different criteria.   You may be able to find the protocols on the hospital website ( I’m at clatterbridge cancer hospital and all the chemo protocols are listed along with criteria).... or maybe ask you oncology nurse.

take good care 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@worriednow I don't know the drug pracimetal. I am glad you have taken it well and I hope you are feeling better and better. I am at day 13 and feel 'normal' again.

I also have children for whom I want to stay strong and be brave. Two girls (9 and 13). I did tell them the truth (adapted to age of course) about my condition and the treatment. 

I also told them that I was scared and I would need them to hold my hand through this journey. They are an amazing support, they are helping more at home and are growing more independent. I am so proud of them.

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Just wanted to welcome you @ClaireS1978

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@coffeeandcake I am on a dense dose with the 2 week cycles. My next round is Monday. I don't know the rationale for it. Could be that it is more common here where I am. No idea.

I met one of my two oncologists on Friday to check if my blood values were good enough to get my second round. The night before going to see her, I did not sleep well and was very anxious. I so want to get it over with, that I don't want any delays. But all night, I had all the scenarios in my head and I sort of freaked out. Finally, I will get my next round as planned. 

But I have been told that the next round will be 'lighter', it appears that the first one got me too low on my blood count. I have also lost some weight after this first round, so there is a need to adjust. I hope this second round will not take me down completely. We will see. 

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning thank you for that it was around where I had a biopsy , you have put my mind at rest but I will be monitoring it . I know they know what they are doing but my head thinks otherwise. Thanks and take care xx

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok  first of all deep breaths. I hear you!  None of us can know what that lump is. All I can say is after my breast biopsy and node biopsy I had massive lumps appear where before I couldn’t feel anything. In my case it was swelling from the biopsy and took weeks to go down again. If you are worried call your BCN team and I’m sure they’ll be able to help you.

lots of love x

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello everyone I am having a sad evening ! Just scared myself 😟I had never felt a lump at all but I have just felt one the size of my thumb nail under my arm and it’s scared me to death , I think that is where they tested a node but not to feel it before has worried me that it is growing fast !! Has anyone else felt one there ? I just want to start my chemo now 😭.... not a good start to my holiday xx

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Quick question for those on EC... I am on a 3 weekly cycle but have read about ‘Dense dose’ which is given every 2 weeks.  My oncologist said it made little difference but I read a few studies in America that said long term survival rates can be increased with the dense dose. 

I just wondered if anyone else had experience of 2 weekly cycles instead of 3 weekly?

 

thanks x

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi ladies,

I had my portacath fitted on Monday and started EC Tuesday. They couldn’t use the port as it was too swollen but managed to warm my hand enough to get a good vein. 

I cold capped which was fine after the first 10 minutes. Hoping it helps even a little!!

I had a restless night Tuesday as felt emotionally drained and my brain was running round in circles with all the new info. But I’m pleased to say that since then I have felt more or less ok!! I took my anti sickness meds which seemed to have done the job. Now my mouth is starting to feel a little dry but I have a good mouth spray from Boots which does the trick. 

I just wanted to say hi to everyone and welcome to our new joiners. My diagnosis is grade 3, inc spread to nodes. ER+ HER2 Neg. I am having 4 rounds of EC followed by 12 weekly rounds of paclitexl. Then surgery & radiotherapy. So I am at the very start of my journey. 

lots of love to you all xxx

ClaireS1978
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @noodledoodle 

that’s so good to hear that you can cope with your symptoms and nothing too bad. I really hope that continues for you.

I have ordered a wig, which is due in the next couple of days. They really do look amazing now. I bet it actually feels nice to just put it on and not have to worry about styling it 😊 

ooh I’m glad you like the Shea butter, I’ve not tried any yet. I’m just using the last of my retinol and vit c whilst I still can 😩

Think I’ll put some lollies on my shopping list and try and hide them from my 8 year old son 🙈 .... thanks for the tip 😊 xx

 

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @ClaireS1978 

I started my EC Monday and am now day 5. I had one rough night on day 1 and the next 4 days of just feeling a bit woolly headed and spaced out ! It hasn’t been,so far, as bad as I anticipated.

I do have a dry mouth too and a slight change in taste but do find iced lollies help and sugar free chewing gum definitely gets the saliva flowing  

Finished my anti sickness meds yesterday and so far so good  Beginning to be drift back to feeling more normal ( whatever that is!)

I have the Jennifer Young Shea butter for face and it is lovely  makes your skin feel soft, without irritation  Haven’t used the scalp stuff yet as I shaved my hair off before chemo, which I am glad I did, but everybody different, and is too bristley at the moment 😂😂

Have a nice wig which I wear far more than I thought I would and some nice scarves  I never ever thought I would wear a wig confidently, but I do  They are so good these days, you really can’t tell and are actually much easier than faffing about with actual hair  May become a permanent wig wearer after all this😂😂

Hope everybody else is doing ok  we will get there!

@Karden, hope your mouth improves soon  sending hugs xx

 

 

ClaireS1978
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi all, I joined the forum about 3 weeks ago, I haven't yet commented but reading everyone's posts have really helped me cope over the last few weeks. 

I was diagnosed with stage 2, grade 3 breast cancer 4 weeks ago, it's been weeks of tests, scans and different appointments but having my port fitted today made it feel like this is actually happening to me and I just broke down in tears.

On Wednesday I start 4 rounds of EC every three weeks, then move to 12 weekly sessions of paclitaxel. I am going to try the cold cap, although my oncologist said there's still about a 60-70% chance that I will lose my hair. I have ordered a silk pillowcase, a sleep cap, I've also been told to bring a resistance band to hold the cap down, not sure if it will help but I'm willing to try anything. I am struggling with what shampoo and conditioner to use. I have Olaplex at the moment but I'm not sure if it will be to strong to use during chemo. 

I'm really worried about what side effects will come from the treatment but I guess it's a wait and see. I have purchased lots of natural face and body products from Jennifer Young, I'm hoping this might help with the dry, sore skin and nail issues that people have said they get. 

Good luck to everyone going through treatment xxx

 

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi and welcome to the may group . I know how you feel you can’t believe it’s really happening . I have not had my 1st chemo yet should be the week after next , I have stage 2 breast cancer in nodes and got to have 8 lots of lots of chemo 😱before the opp . Glad you are feeling ok that gives me hope .... take care x

worriednow
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello 

I want to message to all in may group can’t get my head round it. Well had my first chemo yesterday praxcimetal drug for 1 hour infusion. Feel fine today . Did take the nausea drug even though I feel ok . Don’t know how rest of days will be . Would love to chat with ladies on this drug. Iam determined to feel ok for my children who are too little . Feel sad. Cannot believe breast cancer spread to bones 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Karden I am so sorry to hear about your pain. I hope you get relief soon. Send you lot of hugs and positive vibes. 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Poor you that sounds awful 😢.... give it it a go this lady had been through it herself xx

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

  • @TicTok Thanks for this, I will give it a try. The mouth ulcers are so painful at the moment and I sometimes want to cry because the pain is constant. It is also affecting my sleep and I'm struggling to eat and drink and even to speak! I will discuss it with my oncologist on Tuesday and ask if she can adjust the chemo doses as she did before. You wouldn't imagine that something so small can cause so much pain. 😟
TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello everyone sounds like you are all doing ok with your EC . Just wondering if it would help with the sore mouths .... I read where sucking on bits of ice cube or an ice pole while having EC and after can help with the sores a bit like the cold cap 🥶.....might be worth a go , I will be trying it myself . Hope to get my dates very soon love to all.

 

Bernard_BCN
Community Manager

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thank you @Mai7 for posting this info.

On behalf of Breast Cancer Now, we are sending warmest wishes to people starting chemo in May.

We're here if you need to talk things through... all our services are confidential, free, and move at your own pace.

Sending love to you all

Bernard x

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Welcome @Selma59 

I too am having EC, so not the same. I had a bit of a spaced out feeling the evening after chemo and a rough night of feeling wiped out but not being able to sleep due to nausea. 
After that I have felt absolutely fine. Like @loverunning, I did a walk yesterday to get my heart rate up and I think this does help. Was sleepy yesterday evening and slept like a log!

I start the injections to boost white blood cells today which are supposed to make you achy so going to do some online yoga to see if this helps!

Dont get anxious about it, everybody is different and the oncology team are fantastic and will help with any unpleasant effects you may have along the way. You will have a contact number to speak to someone at ANY time. 
My taste has not changed yet but I am only on Day 3, so am eating normally. 
Just remember fears aren’t facts and it is always the fears that make you anxious. Everybody is different. I have been pleasantly surprised so far!

like @loverunning says hydrate before you have chemotherapy and all the time. This will help enormously. 
Good luck and let us know how you get on xx

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze I knew i would miss someone off my message! So sorry x

Hope your port insertion goes well - i have pic line in as my veins belong to the same escape artist circus yours do!

Take care x

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning Everyone

@Karden @noodledoodle @Love running @Selma59 @TicTok @coffeeandcake @simplyeve  - sorry if i have missed anoyone!

Its Day 13 for me today and feeling ok - still getting slight headaches and finding that my concentration is rubbish at times but on the whole i have had no real major issues following my first EC treatment on 30th April apart from absolutley no taste and a weird smell all the time which only got better 2 days ago meaining i can now tatse things again but not quite back to normal yet.

Coil removel procedure cancelled today as i've had a mild tonisilitis - now rescheduled for 25th May so a bit aprehansive about how ill be feeling as 2nd EC due on 21st May if all bloods ok - 21st May is my wedding anniversary and i feel so sad that i am having to spend my morning having chemotherapy while my husband is at home....its times like this when all this seems very unfair...but i try not to dwell and try and stay strong - its hard sometimes though when the emormity of it all hits and i do have times when little things make me teary and angry and all other emotions you can imagine. I suppose you all appreciate those feelings ❤️

@Selma59 I am trying the cold cap - tolerated it very easily dring my first chemo and so far.....Day 13 and nothing falling out other than the odd strand when i gently comb my hair. My scalp is a little itchy and sore in places and i have these odd 'spots' behind my ears and in my hairline that are sore - anyone else have these? I worry that im going to wake up and find it all on my pillow one morning - which i know can happen - but i am hoping that the cold cap at least reduces the loss. I have got headscarves etc ready in case and will get a wig if hair loss does happen. Keep me posted how you get on with it and i will you - fingers crossed we are both cold cap success stories!

@coffeeandcake your story is so similar to mine although my children are older 12years, 2 x 17years and 21years. I had fibroadenomas removed from my right breast  severla years ago and as a consequence have lumpy breast and scar tissue so my lump  - in the words of my surgeon - 'crept up on me' too - 5.5cm Grade 2 HER2 -ve, PR 8/8 & ER 8/8 +ve -  hidden under old scar tissue. I have two positive lymph nodes - one confimred on biposy and one that looked suspicious on breast MRI. My CT scan also clear - not had PET Scan so must just be my hospital do CT not PET to start with maybe?

@Love running i worry that once i have my surgery they will find other things but on my initial mamongram they found 3 other masses 2 in my right breast and one in left which on biposy were all fibroadenomas so i am hoping they havent missed anything but who knows until they get in there and have a good look. As you may recall i have my chemo first then surgery so its going to be around Sept/Oct before i can finally get this lump out and start to feel mentally like its 'gone'.

@noodledoodle hope your mouth feels better soon xx

To everyone else - i hope you are all ok today - stay strong - keep fighting the fight and look after yourselves and your families. 'We will do this ❤️' xxx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning everyone,

Sorry I haven't posted for a while but work has taken over this week.  Like you, @Karden I work for a charity - ironically, it's a charity for children with cancer - and they have been really flexible so I'm lucky and can work as and when I feel ok.  I'm sorry you're having such trouble with mouth ulcers - that sounds very draining and painful.  Hopefully your oncologist can balance the chemo again and avoid this happening again for you.

Welcome @coffeeandcake and @Selma59 , wishing you all the best with your treatment. Will be thinking of you @Selma59 on Friday.  I'm having EC, so not the same I think, but like others here I found Days 1 - 3 to be the worst in terms of sickness and generally feeling unwell, then days 4 - 6 feeling groggy with a nagging (but not horrendous) headache all the time.  But then from day 7 onwards I have felt progressively better - my appetite is nearly back to normal and no headache or wooziness. I get tired more easily, but that's about it for now 🤞 The best thing for me was to take everything in small doses/steps - I drank a lot of water/juice but always in small sips throughout the day; same with eating - very small portions of whatever I felt like eating. And exercise or moving about in gentle, small steps - like @Love running I also found that moving / exercise (in my case, it wasgoing for short gentle walks) helped me with the tiredness and headaches.

My hair is definitely starting to fall out (I didn't do cold cap), so I'll be following in your footsteps @noodledoodle and shaving it all off soon.  I hope you catch some good days soon and that the nausea stays well behind you!

I'm having a port-a-cath fitted on Friday - I'll be glad for that as my veins are 'escape artists' and I don't fancy being jabbed again like the first round 🙄

@Love running my garden is quite big, but mostly grass. I have 2 dogs and although they don't mess with any plants, it's nicer for them to have space to run around, rather than having to dodge flower beds 😂 I was more ambitious than planned and ended up planting peas, lettuce, beetroot and radish. My husband and I are the worst at DIY, but we managed to cobble together a small, sort of raised vegetable bed - we had fun doing it and it certainly took my mind off all things chemo. I'll let you know if anything actually grows!

Take care everyone and hoping the sun shines for you all today x

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good Morning everyone,

I'm sorry I haven't posted for a few days but I have been busy working. I work for charity and my employer has been amazing by allowing me to work as and when I can and I have no pressure put on me at all. When I had my first chemo course between December and February I was able to work pretty much all the way through but this was only possible due to them giving me full flexibility and by working from home.

I am now on day 14 and feeling fine apart from terribly painful mouth ulcers. I have some prescription mouthwashes - Difflam and Lidocaine but they only ease it a little. I can only wait for them to heal in their own time but it does make eating and even speaking difficult. This happened previously and my oncologist reduced the dose of one of the chemo drugs and this did the trick so I am going to ask if she can do this again.

You are all coping so well and it's inspiring to hear from you all. 

Best wishes. Karen 😊

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Selma59  Welcome to this forum. 

I am having EC not AC, so not sure if it is the same or not but I assume that the side effects and the anti sickness meds are pretty similar. It seems from our group that we all experienced individually and differently the side effects but the most common is the nausea on the first days (1-3) which could be counterbalanced with additional anti sickness meds. Trust your medical team. They are great and they will help you adjust as needed.

The fatigue is another common side effect, so rest as much as needed. I personally found that exercising a little every day helped me fight the fatigue. I try to get my pulse up every day for 30 minutes (brisk walk, slow run, bike tour, and gentle Pilates exercise for the bone and muscle pains). It really helped both the body and the mind.

I also tried to rest but not too sleep too much during the days (only short naps), so that I can sleep at night. Steroids can be nasty with your sleep. I never went to bed so early (21:00 max the first week) and most night I managed to sleep until 5:30-6:00 (with one or two runs to loo during the night because I drink a lot)

I am constantly thirsty, my mouth is so dry.... so been drinking a lot. A LOT! a lot of cold water, and non sweet ice tea. No more coffee, just the joy of drinking it left 🤷🏻‍♀️ Can’t be too far from facilities anywhere I go. Reminds me my pregnancies 😂. I guess drinking a lot is good to flush out the drugs. I have a slight change in taste but not too bad, but my appetite has plunged. I mostly eat cold food, lots of vegetable and frozen fruits, again because my mouth is so dry. So the freshness helps.

I have had a constant slight headache for the three days - manageable for me without adding one more medication. It went away after I stopped the steroids.

It got better every day. I am at day 10 and I feel almost normal again... and now I am trying to enjoy as much as possible before my next round on Monday.

@all have a wonderful day and I hope you are getting better by the minutes.

Selma59
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

This is amazing that you started this! I will have my first chemo on Friday and I am terrified. I will be getting AC every 2 weeks 4 times. Anyone had this drug before? What can I do to reduce side effects? I heard that 3rd day is the worst once steroids run out and white cell injections cause bone pain... The more I listen the more scared I am... Hope you have some tips for me and share some of your first chemo experiences..

I will go and try to choose one wig for myself as well. Lets see how it will look on me 🙂

can’t wait to hear from you all!

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi how did you get on today ? And did you try the cold cap .......hope all went well

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Ps I don’t know how those circles got on my message 😂.... I’m useless 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Evening everyone hope you are all as good as can be ....Hey well done doing your run today  🏃‍♀️ 👍

Im sorry I can’t get my head round how to do this messaging individually 🤷‍♂️Lol

thanks to all for your holiday messages I will make every second count . My doctor rang this afternoon I said I need to get my 2nd COVID jab this week ! Half an hour later I had to rush to the docs as they had one left over that they did not need .... how good was that ..... lovely reading all your messages ....we can do it and we will do it 👍..... take care 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hey well done doing your run today  🏃‍♀️ 👍

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@noodledoodle  I run - not far not fast. It was harder (compared to before). I enjoyed every drop of sweat 💦 and every meters and minutes, and what a sense of freedom. Free of worries, free of fear... I hope I can keep doing it even if it is only few 100 meters. 

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

thanks @Love running 

meds sound similar. I took metachlopramide, which was given as and when needed up to 3 times per day. This definitely helped during my rough night. Feel fine today. 
it’s good to hear from people further on than me. Helps enormously. 
Hope you are managing your run it’s it makes such a difference being able to continue something you love. Xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@coffeeandcake good luck today. I hope you will get a smooth ride.

you say sneaky - same here. During my first surgery, the surgeon found a third tumor, a tiny one hiding (7mm) behind my two major ones (4 cm, 1.6 cm) which did not show during the mammogram.  Got me a second surgery to clean the margins... and micrometastases in my first sentinel node got me chemo. I am also ER + and PR + and HER2 negative. 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@noodledoodle it was similar with me. First fine then a rough ride through the first night which left me wiped out Day 2 and 3. After that, it has been better and today Day 10 I feel almost normal. The headache has gone too. I still get tired quickly but I can get do most daily things. Hold on, it will get better.

on the top of the ‘regular’ anti-sickness meds I got told to use primperan if needed.
 (Max 3 per day and 6 h in between each take). It did the trick for me.

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@coffeeandcake 

Feeling good today. Just been out for a brisk walk, about 3 miles and still feel good after a rough night with the EC yesterday. Good luck with yours Hopefully won’t be as bad as you think xx

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

First EC session today, feeling a little ‘blurgh’. I had my portacath fitted yesterday and I managed a good nights sleep but woke up in pain this morning. Just waiting for the meds to kick in before getting up and ready for the EC! What a day! 

im going to try cold capping - anyone else tried this?

 

I realise I haven’t introduced myself - I’m 41, have 2 young children (4&6) and live in SE England. My diagnosis was Invasive ductal, grade 3. ER + 8/8, PR4/8 and HER2 neg.  10cm tumour (which j can’t even feel. Talk about sneaky) in my left breast and it has also spread to the nodes. PET scan showed it hadn’t spread elsewhere - long may it stay that way!!!

 

@noodledoodle  Sending you lots of strength and good vibes today. Be kind to yourself and take it easy x

 

@TicTok enjoy your holiday! You deserve it. 

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Well ladies,

I spoke too soon, had a rough night feeling wiped out and very nauseous, so didn’t sleep much. Feel better this morning so far. Hard to believe you still get nauseous with all the anti sickness meds you take! How’s everbody else doing who is futher on with the EC?

Good luck today @coffeeandcake. Let us know how you get on. 
@TicTok. That holiday sounds perfect and couldn’t have come at a better time. Enjoy every second. 
@simplyeve. I too have taken early retirement to make it easier to get the time to visit our son in NZ. We have our first grandchild, born last June to meet!  She does cheer us up every day on FaceTime but cannot wait to get my hands on her when all this is over and they let us in , of course! Our daughter is coming too, so will be a lovely family affair to work towards!

Onwards and upwards ladies  every day is a step further towards finishing and a bit of normality!

Take Care all xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok That’s great. Enjoy your holidays. The seaside sounds like a perfect treat! 

Good luck with the 2nd COVID jab. I finally will get my first one on Friday (quite behind the UK over here).

simplyeve
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Ladies

Thank you all for the lovely welcome and support. We are taking a three day break and internet is not Good but I can read your messages and hopefully keep up with your treatments but please forgive me if I miss someone out.

@noodledoodle so glad you're first session was ok and you were given the anti sickness meds to come home with.

@Love running  I love the way you are finding the positives in the challenges you are facing and at the same time giving us all information about the treatment.

@TicTok love the reasoning behind the name!  So glad you have your plan and can get away still. I think I will be on TCHP defintely got to have Herceptin or equiv as her2+, so we may be similar but will be following your treatment closely. Good luck.

@coffeeandcake I hope you're treatment is ok tomorrow and well done on getting through the portacath fitting today.

@Poacher65 Thank you for your lovely welcome, words of encouragement and understanding, I hope everything goes well for you this week too. I had a coil years back and had no trouble with it's removal.

@Purpledaze Thanks for your reply and support it does relieve the guilt knowing others would feel the same. So Good to hear that you still gave your hair too, I am not going to cold cap either will get a short cut and take it from there. I am retired left work last September so hubby and I could spend time with our grandchild in France but second round of covid and now this means we're not going anywhere 🤷‍♀️. I am saying the 2 c's are to blame but hopefully not for too long🤞  Working from home is better I think Good that you have an understanding boss too.

@worriednow it is great to have a group of people who can help each other and we are strong; you are right we will kick it's ass out of our systems😎

 

Thanks again ladies and stay strong 💪 x