Hi @Fairie I’m so pleased you are having a better time this time round. I feel ok still today. Like you, I am just trying to go with it and rest when I need to. I am going for a walk in a bit and will then crash onto the sofa again if I need to! I have found that I have had much less nausea on this one than when I was on EC in Feb-March.
Like you, I was so daunted beforehand about having 18 weeks of this treatment but so far feel like it is doable.
I hope everyone has as comfortable and restful day as possible. Siân xxx
Hi hopeful x
Thank you for your message.
I posted earlier this morning after my last two days. I hope you’ve seen it?
I hope you are doing well and that chemo is t too harsh on you. I am amazed at the difference in advancement this time around from my last breast cancer journey 14 years ago,
I certainly wouldn’t have been typing now to the group.
Sending love and positive vibes xx
Sharon ( Fairie) xx
Thank you dear Kim
thinking of you.
I sent a fairly detailed post early this morning if my first two days of treatment so won’t repeat again now, plus my hand went numb from typing!!
I too struggled on Sunday despite being taken out for a lovely lunch outdoors. It felt like the contrast between normal life and a storm coming was so real and as much as I tried I did but didn’t enjoy my special treat 🤦♀️
I too cried later and then weirdly on Monday I had a very calm day and it felt like those tears needed to come.
We need to allow ourselves to ‘be’ and it’s okay to cry and let out the thoughts and feelings.
Take care and keep in touch when you can
Love Sharon ( Fairie) x
similar experience to you. Do hope you’re feeling okay enough?
I am feeling okay at the moment and hope it will continue. I posted my last two day experience earlier. I hope it came through.
sending love and positive vibes to you and everyone xx Sharon (Fairie) xx
over the last two days I have what they call the ‘loading’ treatment. Day 1 was the Herceptin (Trastuzumab) and day 2 was the Pertuzumab, Docetaxel and carboplatin for me.
I was( like us all) very nervous, distressed and apprehensive. I had experienced BC and FEC chemo 14 years ago along with mastectomy, tamoxifen and letrazole both 5 years each.
it was an ER positive back then where as this time it is HER2 positive in my remaining breast.
So on Tuesday (day 1) my husband dropped me off at the hospital door and I walked in with my big basket of what I thought I might need for the day. Plenty of water too! I looked as if I was off to the beach for the day!
I walked into the chemo suite and was weighed, Bp taken and temperature. Took my seat in the wing and decided that I was the only one who could do this and I will!
I stayed all day and they monitored me well. I felt my heart rate go up a little and my temp went up a little so they gave me some piriton to help. Things settled and I felt fine to go home and have a lovely evening in garden and supper and bed. I had also been dosed up with steroids too. Felt fine. Slept right thru night except for a few wees!
day 2. Andy dropped me off like I was going to the beach!
I went in and took a different seat.
vitals all checked. BP, temp etc.. and off we went.
I took in a audio book to listen to and take my anxious mind to another place and just let them do their thing! For the Docetaxel I managed the cold cap! The secret is to hold on for 5-8 minutes and keep saying ‘ I can do this’ and then it settles. I got used to it and got back into my audio story. I had to damp my hair first snd put some hair conditioner on before.
I had the three treatments. Lunch in between which I had packed at home, ( they offered lunch and tea and coffee but I prefer my own if honest)
I drank lots of water and had one cup of tea.
I did email admin on my mobile and binned loads!🤦♀️
I messaged family and friends and they me.
I dozed off for a nap and then went home.
Oh! And the pharmacist visited in the morning and went thru all meds which is a lot to take in so I asked the nurse to go thru it with me again before I left.
I had a slight dull headache last night so ‘ importantly’ checked my temp first before taking paracetamol. It went off. After thinking we’d have a lightly grilled fillet of fish n veg for supper we had a chip butty!! 😲
I love too the drink called ‘ mother root’ do google it!
It is all natural. I have it in a gin glass with tonic water ( only a little mother root is needed) lots of tonic snd ice and lime and I picked snd WASHED thoroughly few herbs from garden ie Rosemary, lemon verbena, mint and took my anti sickness tablet as directed and slept really well, the few usual wees during the night but straight back into bed snd have just had two cups of tea snd typing to you girls!
I don’t know yet what today will bring but will follow the guidAnce and take my steroids morning snd lunch. Check temp if I feel a bit hot, sleep if I’m tired, listen to my audio, and rest.
This is do-able my friends.
When I think back to my last journey 14 years ago they were not as thorough as they are now. There was no hot line for support day and night, yes I did have a BC nurse I could call but had to wait for ages.
believe me, we are so much more advanced now. Trust your team. Trust yourself. You CAN do this. As Sain said ( I think it was you Sain) our bodies need these medications to live our lives well.. snd well we will be.
Yes, we may feel a bit yucky but honestly the meds are on top of it!
oh also I used my mouth wash before bed to keep ahead of any issues in there .
If any of you want to ask ANYTHING at all please do.
much love Sharon ( Fairie) xxx
my hand is numb from typing ! 🤣
Hi @Louise65 bless you, I’m glad you had a good chat to the hotline. They are there to ensure that it is not too difficult for you so I hope you got the answers you needed. It is such an emotional rollercoaster. I really hope your new meds help you and that you feel better soon. Love, Siân xxx
Totally agree about the amount of information it's so overwhelming sad you cannot take someone in with you as this is like living hell.
Think I will end up with the picc line once I go into weekly as my veins won't hold out.
I was offered the cold cap but as I don't do well with cold decided against it.
@hopeful1974 I called oncology had good cry and chat she gave me lots of advice. I had to wait until tonight to get the medication though as no one around so hoping for a better day tomorrow.
Hope everyone else is OK
Love Louise xx
Had my pre-chemo assessment today, talk about information overload! It was good though to have been through everything, had all my questions answered and see exactly where it'll all be happening. They offered to do the treatment through the PICC without even looking at my veins and I think the general concensus is this is a better way to go than having the chemo and blood tests going into alternating hands/arms, so they need to have that fitted before my first session. We discussed the scalp cooling and I said if i dont try I will never know. the nurse said what others have said in that if you get past the inital period then you get used to it. It will need to be on for 1/2 hour before, during an an hour after so we will see. I said to my husband that ive been through natural child birth so surely i can handle this (although we will see....) I asked about meds for handling the side effects (nausea, diarrhea, constipation, pain, mouth rinse, you name it) and she said that will all be explained and all given to me during my first session, which blood results pending, will be Monday 10.30am!
It still all feels really surreal, like this isnt happening to me. Do others feel the same? I mean I've read all the stuff and be poked and prodded but it still just doesnt feel real.
@Louise65I developed diarrhoea on EC during my second and third cycles. I was advised to take 2 Loperamide tablets (Imodium). They did the trick and when I had another loose bowel movement, I was advised to take just 1 Loperamide after each one. It is important to stop it so that you don’t lose your appetite. But do call you oncology hotline so that they are aware of it. I have had unsettled sleep due to the Steroids and whereas Nytol usually works for me, I have had to take Lorazepam to knock me out! I have 4 steroid tablets to take twice a day for three days so it’s not surprising I am not dropping off naturally! xxx
Morning to everyone else as well.
Hope you all ok on this nightmare we are sharing.
Day 6 today yesterday was good day in that I managed long early walk, hoovered etc and even managed to pot up some plants. But it did wipe me out rest of day I was very weary but also tearful.
Appetite wise I'm eating small amounts when I feel I need to and did struggle with fluid intake.
Last night had unsettled sleep but still managed short walk early today. Got home changed bedding, showered and currently just resting in fresh sheets. Feels good.
Have gone through the constipation side to the other hoping it not too bad or will call oncology for something.
Love and support to everyone.
I only had a perjeta (pertazumab) intravenous treatment today. Appointment was 11 but arrived early, we have had roadworks holding up traffic here for the last 12 weeks, so left early and not a hold up in sight🤔 anyway was checked in quickly height, weight🙈, as didn't have to have covid test had to answer health questions and temperature check, then taken onto treatment suite also had to wash hands before I could be taken to ward where there were three beds with chairs along one side and 4 chairs along the other, I was asked would I like a bed or a chair, so chose a chair which was really comfy. Then sat and waited very nervously though was offered a ☕ and 🍰 or biscuits, had a cuppa but refused the cake - learnt my lesson it wasn't offered again but I'll know for next time😋, it wasn't until 11.20 that my nurses came to me. Firstly went through my paperwork and explained treatment again, then a checklist of my overall health, looked and found my good veins, one for today and another one for tomorrow😔. It appears that they will put in a cannula each treatment. They checked I had taken my steroids and gave me two paracetamol to take after checking I hadn't taken any myself.
Once the cannula was in place my treatment was sent for and I had a saline flush to check it was working ok. Around 12 they came around with a choice of sandwiches, crisps and jelly, ice cream etc for lunch with a small carton of juice apple or orange; but I had to ask for cup to disolve my steroids in as I have to to them with breakfast and lunch, had taken my own bottle of water, but will ask for one tomorrow.
Then at 1/4 to 1 my infusion was connected to the cannula and I was told it would run for an hour, which it did, after that I had another saline flush and about 2 o'clock was told I could phone hubby to collect me for 2.30, shortly after my cannula was removed and I could leave.
I do have a mild background headache though that could be the stress of the day and have oddly enough had three hot flushes at odd intervals, but overall I feel fine and exactly like you @hopeful1974 (Sian) if my treatment goes as well tomorrow I will be a very happy lady.
love to you all xx
theres so many messages and so hard to reply to each one separately, for those that have started your treatment I hope your doing ok and thanks for any tips you can pass on, I know I did chemo 13 years ago but I do believe things have changed so much, and you ladies are the ones in the know right now, to the ladies starting tomorrow, I wish you well, do they still tell you to take boiled sweets to suck, I hope you don’t have too much sickness and get more good days than bad, I have been getting out on my bike but I nearly had a hippy fit today, 21 miles n we stopped at our destination but the cafe was closed, so another 6 miles to another cafe we like to support, it’s a community cafe but due to staff problems it was also shut today, so another 4 miles on to a garden centre and guess what their cafe was closed for refurb, so I’m now 31 miles in and I need my caffeine fix and some food, so onwards once again another 3 miles and finally I found a cafe open, only 5 miles from home but I needed my fix, I was about to throw myself on the floor n scream if it had been shut, so a great ride of 39 miles, let’s hope tomorrow is a better day for cycling, I know I’m lucky I can still get out and I’m trying to go everyday before my chemo starts on the 25th, thanks you all for the advice, the tips and support,
@Impatience Sounds like it has gone really well for you and that you are managing the side effects well. I’m so pleased you have had a positive first cycle. It bodes well! Xxx
How has everyone got on today? I was in for 6 hours in total. I had the Phesgo injection first, followed by Docetaxel and then the Carboplatin. I have felt pretty normal this evening and have had dinner and an evening stroll. I was quite drowsy during the infusions so just listened to an audio book which helped to drown out the annoying beeping of the chemo machines! If I continue to feel like this I will be delighted, but only time will tell. Love to all. Xxx
Hi @GonnaGetThruThis (Kim)
This forum is a great place to get all you need to say out there. Sometimes when things are written down it helps. I’m sorry to hear you had such a rough time Sunday but again it’s best to get it out. I call those times by mini meltdowns!
I am in day 5 of the first cycle so happy to share with you. Day one was like I had a procedure. I had headache and felt a bit nauseous but wasn’t sick and I had an early night. Second day better with just a fuzzy head rather that head ache. Third day I took a couple of paracetamol and it cleared my head. Yesterday the fourth day was a normal day and I went to the wig clinic. Today so far another good day. I’ve tackled a pile of ironing and I’m off walking after tea.
I take anti sickness pill with my breakfast and that is working for me. I’ve felt slightly constipated so I’ve been on prunes and custard, multi grain bread and high fibre cereal and lots of warm cups of tea. 🤞that’s working for me too. My gums have felt ever so slightly sore like when you’ve brushed them too hard but I’m cleaning my teeth after every meal and then rinsing with Difflam mouthwash and again under control 🤞.
Mentally I do have a nap if my eyes are closing, I get out of the house every day and like you I keep a journal. I write the medical stuff in, how I’m feeling, a tick off day page and a positive page. I try to make sure something positive goes on there. Yesterday it was I managed to go to the loo!!
I did this when I had my mastectomy and I can recommend it.
Wishing you all the best on this unwanted journey and together we will all get through that tunnel. Take care.
@simplyeveThinking of you today. I didnt realise there were a few more pages to go back and read of this thread and have now seen the ordeal that you have been through.
@Louise65and @Impatience how are you both feeling today? It must appear that Im stalking you but as we are having the same treatment and you are about 10 days ahead of me, im keen to see if there are general side effects to expect.
I'm fairly new to forums and the only other one i belonged to was when I was pregnant. I joined a 'similar type of group' for mums whose babies were due in July 2010 and the information and chatting was invaluable to me as a first time mother as we were all going through similar things at the same time. It sort of feels like this will be the same. We are all here for the same bloody thing, and even though we may have wildy different treatment plans, we all have a similar journey to go on and get through. Even though we dont know each other, I really hope that together we can laugh, cry and help each other get through this. My mum went through tongue cancer treatment about 5 years ago (life long smoker) and the other day she told me that this is a very unique club that we now belong to and whilst it is amazing to have the suport of family and friends, no-one really knows what it is like unless youve been through it. I am already seeing those words ring true.
I saw someone mention about keeping a diary/journal so I bought a diary yesterday. Nothing fancy, just a day to a page 2021 diary and started writing 'my journey' so far. Backdated to May 1 when I found the bloody lump! I started with adding all the appointments ive had so far and then when i told my family and then some comments about how i felt at the time etc. I kept putting it down and then remembered the strong feelings i had on certian days relating to certain things, both good and bad, and so i then went back and added in those. I want to try and capture the actual medical processes (like the scans and appointments etc) but also how i am feeling. going forward from next week i expect to use it also to keep track of how im feeling, both physically and mentally.
Oh yeah and for the record, I am a 'talker' and apparently write like i talk so sometimes, like now, you can expect a novel from me. Actually it was quite funny that on my first meeting with the Oncologist last Wed she commented on me talking ALOT and being quite hyper. I did say this was partially just the way I am (blame me being brought up in Australia) and partly cause last week I was 'totally fine' and in practical/organisational mode. I was writing lists of questions and for shopping and reading about what was to come and looking at scarfs and updating my calendar with every event i know about for the next 6 months so my husband and daughter can see it all. to counteract it, i woke up on Sunday morning and i was a mess. It literally hit me that this shit is about to really happen to me and i cried for hours. Sunday was a rough one but it also was like an introduction to the rollercoaster of emotions which im sure we are all about to experience.
so, on that note, if youve managed to read all then well done. I need to get ready for the school run (currently cycling to/from school while i can).
Take care ladies and 'talk' to you all soon.
Just wanted to wish you good luck with your treatment today, so sorry I missed you off my post, welcome to the group too, we are so lucky to have such a lovely bunch of ladies in our group not only different types of treatments to share our experiences but also ladies who have already been treated are here to reassure us.
Can I just say what an amazing person you are! To cope with your loss, whilst sorting out all the practicalities and emotions that brings as well as your own personal BC treatment leaves me in awe. The fact you have taken time to post on the forum with all that you have had going on is so thoughtful and supportive.
Wishing you all the best with your treatment and moving forwards for you and your family. Take care.
Also sending lots of positive vibes for everyone starting their treatments today/tomorrow. We can all do this!
Thanks so much Sian - that’s all v positive and helpful about the port. Mine’s in now - all ok - ready (?!) for first EC chemo cycle tomorrow morning.
This forum is really reassuring - just nice to know it’s there if/as/when needed and maybe I’ll be able to help someone too, further down the line. Good luck to you all on all your variations of this BC rollercoaster. Chloe x
Your message has bought tears to my eyes.. so caring, thoughtful for us all.
You have been through so much in a tender time for yourself. Do take care of you too.
I will be thinking of us all tomorrow and sending positive vibes and love to all.
We CAN do this!
check in soonest!
much love ,
Sharin (Fairie) xx
I also start chemo on Wednesday. Herceptin tomorrow.
I had chemo 14 years ago too ( FEC) I managed the cold cap all through. From my memory of it, I had to get through the first 5 or so minutes and then it wasn’t so bad. I managed to keep my hair although it did thin.
go somewhere else in your head if you can.. that helps distract.
wishing you every best wish xx
Hi @simplyeve I am glad you managed to get all your appointments in ahead of tomorrow. I wish you and @Fairie all the very best for tomorrow. I am indeed having Phesgo, which is why I can have it all on one day. I hope we can all support each other as we go through this. I may be a few days behind you from the next session as my appointments will be on Fridays from then on. The oncologist just wanted to get me started ASAP but Friday is a better day for him in terms of blood test and clinic days. Love. Siân xxx
Hi @Fairie I had 3 rounds of EC chemo in Feb-March. I then had a break for my mastectomy and am starting again now with the chemo. So, I have some experience of chemo but not with the new drugs I am about to have. All chemos are different with side effects, so it’s a case of wait and see. Xx
Firstly can I thank you all for your wonderful support and kind comments in relation to our recent loss. We said a final goodbye to Mum in Law on Thursday and caught up with family we had not seen for years so all in all the the service despite having a small (max 20 allowed) attendance went well and was exactly what she would have wanted. The only downside was our daughter wasn't able to be present in person as she lives in France and quarantining with a two year old would have been a nightmare, we did have a webcast however and she was able to see and hear everything.
We managed to get the house clearance finished on Wednesday and on Friday I went for my Echocardiogram in the morning, all clear, then in the afternoon went to the Lymphodema clinic and met up with a couple of ladies who had ops on the same day as my first one in March, one of the ladies only needed radiotherapy and has now finished her treatment! The other is having Chemo and has had her first, EC, 2 weeks ago she said she was quite sick in the evening and next day of her treatment and had felt tired but had got great help from the team and was doing well, so it was lovely to see how well she was coping.
I've had my Blood Test this morning in readiness for tomorrow and am now just trying to keep busy and take my mind off things.
@Louise65I am so sorry to hear you lost your mum in January, especially as your Dad was so poorly too, covid has definitely taken it's toll, so many families unable to be together in times of need. It's amazing the strength we find to deal with life isn't it and yet we do manage to carry on. Your list of items was so very helpful and gave me a reminder of things I needed to get too. So glad you have had your first treatment and glad to hear you managed to get in touch with the ooh, you are doing amazingly well, dog walking, shopping and cooking, though I am sure seeing your daughter has helped tremendously, also I too have a niece getting married in December, we may have to compare hair instead of hats 🙂
@Impatience, welcome from me I'm sorry I haven't greeted you before and thank you so much for your kind message. It seems you have coped well with your first treatment, I do hope you got the answers you needed today.
@GonnaGetThruThis welcome from me and good luck with your pre chemo on the 16th I start on TCHP tomorrow, but have it over 2 days, the Perjeta being given on it's own tomorrow, I decided I wouldn't bother with the cold cap so sorry can't give you any advise on that one, but I do hope that you get the answers you need, this forum is fantastic with so many people offering help and advice.
@Heels to walking boots welcome to the group and glad to hear you have your start date, as I have my first treatment tomorrow I fully understand your comment about swinging between nervousness and a desire to get started. Interesting that you have a blue folder, I was given a blue one too, are you by any chance being treated in Wales? I have not been offered a Picc line or a port so am assuming I will have a cannula inserted for each session, but if I find out differently tomorrow I will let you know.
@trowsterthank you so much for your kind words and support, I'm really glad you got your start date and treatment plan it makes such a difference being able to arrange things and we've had some great weather so hope you enjoyed the pizza and cider and I bet you have been out cycling lots over the weekend, we had planned to go away for a few days too, but it didn't quite work out, but hopefully we can get away in between treatments.
@FairieI am so sorry to hear you were in a similar situation to me in March, I hope for our husbands sake that we can manage our treatment without being too ill, though like you in my head I am expecting the worst but whatever I will be sure to let the team know any problems, I have also downloaded the owise app to keep a record.
@hopeful1974 your kind words were much appreciated. You mention you are having all your treatment in one day so I was wondering are you having both Herceptin & Perjeta (Pertuzumab) included in your injection? I understand that it is called Phesgo and it has only recently been offered in England. I have to get Perjeta on its own tomorrow and then go back on Wednesday for the Docetaxel, Carboplatin and Herceptin, but that is only for the first treatment, the remaining 5 will be done over the one day. I live in Wales and don't think Phesgo is an option here yet.
To everyone in the group, whether you are waiting for results, appointments or treatments good luck and for those "in between" I hope you continue to stay well, if anyone has any questions just ask and if I can help in any way I will try my best.
Thank you @GonnaGetThruThis that is really useful . I have a session with the oncologist on Friday not sure if that is a pre-assessment but will ask the question.
Hope all goes well with your pre-assessment on Wednesday!
@Heels to walking bootsI was chatting to my best friend back home today (she is a breast care nurse in Australia) about ports/veins/hands/arms today as i too had read about people having chemo in different ways. She told me that the veins should be assessed during the pre-chemo session (mine being on Wed) and then a decision is made from there. She said for anyone who doesnt have great veins or a lot of bruising then the port is really good. she mentioned for me, because i havent had surgery and havent any lymph node issues then they will be able to alternate my arms/hands.
Also sounds like we are on a similar path. I should be starting next Monday 3 weekly EC x 3 then 12x Pac...
Just been catching up with posts and hope you all feeling a bit better and are having a good start to the week.
I found out that i am about to start EC next Friday (3 rounds followed by 9 rounds of Paclitaxel) so your experience with your first sessions have been (and i know it has already been said) invaluable. I am swinging from being quite scared to let's get on with it ...sooner it starts the sooner it will end. Also thinking about having the cold cap or at least trying it for the first session to see how it goes. Difficult to know what to do or how i will do with it all. Also, reading the blue folder that i was given ...has not exactly calmed me when reading all the possible side effects.
@ttyler thank you for sharing your photos...that really helps to see someone go through this and come out the other side.
With regards to administering the drugs is there a choice with regards to Picc lines, ports etc? Is one better than the other.
Wishing all a great week and for those starting this week i hope it goes well.
Hi Sharon @Fairie @I am having the same treatment as you but they are doing it all on the same day for me as the Herceptin drugs are via injection now at our hospital. I have been on the steroids today which have been fine apart from me feeling a little tired for about an hour after taking them. Do you have to start taking the steroids tomorrow? I wish you all the best. I will be in from 11 until 4pm tomorrow. Siân xxx
Hi @Just keep going I have a port! It has been very good for me. I can shower as normal without covering anything up. I have virtually forgotten I have it now. You just need to remember to ask the nurses for some EMLA cream to numb it before chemo day. If you have any questions once your op is over, do ask. Siân xxx
That is the best way to think but just take things a day at a time. After my dog walk I rested then did pop to shop and it took it out of me so have just lazed on settee majority of day.
Fingers crossed for you that all is OK for start date not that it's something any of us want to go through but sooner its started sooner its over.
I start Herceptin tomorrow and carboplatin and Docetaxel on Wednesday.
I wish you all the very best on your journey..
Sharon x (Fairie) x
So good to get your update and see that (whilst I know everyone is different) that you still can get out and about and actually do things. I keep swinging from thinking I'm going to be able to totally carry on as usual or be bed ridden so I'll have to adjust to somewhere in the middle.
Just had my ECG and now all ready for my pre chemo app on Wed then all going well, this time next week Monday will be my first time.
Good to hear you are getting out with the dogs Louise65 and great you enjoyed your meal. These little things will keep us going through this. I’m also on day 4. I managed to clear the fuzzy head yesterday with 2 paracetamol. My mouth feels a bit sore this morning but the hospital gave me Difflam to rinse with which I’ve used. It’s only mild at the moment. With this heat it’s difficult to know what effect is heat and what is chemo! Hope you have a good day Louise65
Wishing everyone else a good week. For those of you starting chemo this week it’s the start to an end. That thought got me through the first day.
I’m loving the mantra onwards and upwards!
Morning ladies and everyone else due chemo this week, will be in my thoughts.
I'm day 4 and still have bit of fuzzy head but it's getting better. I've finished the strong anti sickness pills and just got the lower dose so have taken 1 but think my mild nausea is heat and headache. I have got some mild heartburn this morning so will pop to ship to get something along with dropping letter to gp and making app for next bloods. I think I will end up with the line being fitted as my hand is so badly bruised from the bloods 2 days before then the treatment as my vein in that arm isn't great even after drinking loads early.
I've been going out 6am with my partner and dogs for a walk and again at 9 but shorter one. It has helped as I have severe osteoarthritis but also mentally as its so peaceful.
I cooked a one pot roast last night for my daughter and son in law as they were visiting after staying with my dad it was the first meal I've really enjoyed since Friday maybe seeing her helped as she lives 2 hours away.
Anyway to all starting today/tomorrow lots of love.
First message from me. First week of EC chemo this week. Currently at hospital waiting for port to be fitted. Anyone else had a port? First chemo session on Wednesday. Really helpful to see all your comments. Onwards and upwards!
Thanks for the photos. Im starting to accept this will more than likely be me at some point but your hair looks great now so that is also fab to see.
Hope the ladies who have already started treatment are still feeling ok today.
Sorry for the late reply, been to the forest with my boys and unfortunately no signal there.
I had a fuzzy head a bit like when you read a book in the car for around 5 days after treatment. Felt a bit travel sick too, but not actually sick. Like Shi has said keep trying to call your rapid response team for help, they should be available even in the weekend. I found found that paracetamol regularly for the first 3 days or so helped and a wet flannel with cool water especially in the warmer months. A fan is good too. Close your eyes and rest when you need to.
In regard to the cold cap, (I’m sorry I forget who asked) I personally didn’t use one for the reasons you have mentioned, longer time in hospital etc. My hair came out on day 14, I cut it to grade 3 and then about a week later went completely off when more started falling out.
My hair is really growing now, curly too. I’ll upload some pictures.
last chemo session
I used baby shampoo on my bald head and found it lovely and cooling throughout the summer.
I hope this helps xxxx
Although I sympathise I'm glad to hear I'm not alone it does make you worry.
I did get through to oncology ooh and he said as long as no temp etc then probably just side effect. Fingers crossed.
Am going to stroll with dogs again later once cooled and sun dipped hopefully that will help before bed.
@Impatience @Fuzzy head and tiredness sound entirely normal to me for the first few days of EC. I remember I turned a corner after day 5, but everyone reacts a bit differently.
I am on day two of cycle one and I’ve had a fuzzy head all day and quite tired. Just want to close my eyes. I don’t feel unwell and my temp is okay but like you it’s annoying.
I’m back at the centre Monday so I’m going to pop in and check it’s okay Of course if I feel unwell I’ll call OOH
i hope you get some relief soon and I would be interested to see what OOH say
Hi @GonnaGetThruThis I had the cold cap on for the first two chemo sessions. As most of my hair fell out after the second session, I didn’t bother with it for the third one and just had my hair buzz cut. I retained a few hairs after the third one and it has now started to regrow. As I start the next chemo (TCHP), I am thinking I won’t bother as it does add 2.5 hrs onto the treatment. It is worth it with some chemos, but EC and Docetaxel/Carboplatin are both known for a lot of hair loss. Having said that, if you have very thick hair, it may still be worth a shot as my neighbour has managed to keep some hair after EC (x3) and Paclitaxel (x15). She only washes it once a week as that is when it falls out the most. I hope that helps in some way! xxx
Hi Louise what day of your cycle are you on? Keep trying your rapid response number, keep safe during chemo ❤️ You are being vigilant snd it helps your team get you through safely ❤️💕💕✨✨Shi xx
@hopeful1974and others who have had some treatment already, did you try the scalp cooling?
I have read all about it and keep swaying between yes and no to try based on the negatives (additional time, cold, headaches etc). Just looking for some real worl experiences and if it is worth it at all.
Also wondering what brand of shampoo/conditioner have people gone for (regardless of scalp cooling or not) as i think we need a ph neutral ones.
Can you remember if your headache lasted onto 2nd day.
I've got a fuzzy head no where near what I had yesterday.
I know its hot outside and I'm drinking enough just feeling fed up with it now. Tried calling my ooh number no reply. Xx
Dear @Louise65 , I too have done three cycles of EC (I did them in February - March, then had a break for my surgery). I had to take the G-CSF injections for 7 days and wanted to reassure you that I only had bone pain for about half a day on day 7. My oncologist recommends that I take Paracetamol an hour or so before doing the injection to help with this. I hope you don’t get much pain from it and if you do, that it is short-lived. Siân xx
Don’t know why the word Spoiler has popped up in my last post?!?!
Obviously pressed a wrong key. Oops sorry x
I didn’t get any injections given although I’ve got the steroids and anti sickness pills. I wonder why? I’m back at the centre on Monday to look for a wig so I’ll ask.
Thanks for the info re paracetamol. Like Louise65 I’ve got the fuzzy head today. I’m trying to drink more but I’m finding that hard which won’t help.
‘Normalish’ is a good way to describe yesterday and this morning. I’ve done household chores and will be walking later. I’m impressed with the visit to Asda Louise65. Go girl!
Wishing everyone that has a session or an appointment for next week the best.