Already im 'glad' that i braved it and joined and this is what we need. The shared experiences we are all going though at the moment will surely be invaluable for day to day knowing what side effects to expect and how we can do things to help them. its good to know that so far for the new EC starters that the first couple of days were 'normalish' so i hope that continues for you.
Also Tara knowing that you have been there done that and are out of the other side is something we can strive for and also you can assure us that we will be get through the crappy days (although right now im telling myself im going to sail through this as i dont have a clue 'to to be sick' lol). What a great first experience you had in relation to the nurse that greeted you. ive heard that they are invaluable during the sessions as we are not allowed to take anyone in with us (not sure if this is a Covid thing or has always been the case?).
Anyway I'm off to cycle soon with my daughter to her Saturday class 'whilst I still can' and enjoy the glorious weekend weather.
It’s me again, Tara jumping in from June 2020 chemo starters. I wanted to say well done to you all on having your first chemo ( most of you will be one third of the way through now!) and to those still waiting good luck!
It was exactly 12 months to the day yesterday that I had my first chemo, I was so scared and almost did not get up to the unit to have it. My husband abandoning me in the hospital loading bay telling g me to get a grip and a lovely nurse that had beaten triple negative breast cancer 10 years before that came to get me, were my saviour! It really is not all that bad and you will feel such as relief when it’s all over and you look back on it. I have such different feelings now.
Some of you have mentioned the pain above your nose/head ache when having EC. I got this too and found that taking 3 paracetamol half an hour before treatment and sucking a light mint ( Murray mint) during administration, did the trick. You should check with your team that this is okay for you to do before going ahead as, paracetamol can alter your temperature 🤒 and also as I am not a doctor it is best. If all is okay then the pain should be managed this way.
If any more tips are needed, I am always here to share my experiences.
Have a good day all!
Much love ❤️ Tara xxxx
Sounds like you’re both doing pretty well @Impatience and @Louise65 . Do you know that you can take paracetamol or ibuprofen for headaches as long as you remember to take your temperature when they have worn off as painkillers can mask a temperature? I didn’t realise I could take them during my first round and so suffered from a headache needlessly. I hope you continue to feel ok but don’t be afraid to just rest when you need to. xxx
I too had my first EC today and just the same as you. As the final bit of the drug went in I got headache and a sensation at the bridge of my nose.
Its been with me all day. I’ve tried to drink water (I did 4 pints yesterday) but today I just can’t seem to get it down. I’ve managed the headache and tried to keep in my usual routine. After our evening meal we did our usual 2 mile stroll and it felt so good to be outside.
Other than the headache I’ve felt okay and managed to do household chores and I’ve eaten lunch and dinner
I hope you have a good evening/night
I had my 1st EC today. All went well no issues apart from starring of a headache before meds went in think that was from wearing mask and just being overloaded with information. Nurses were all very helpful and lovely I had tea, a sandwich and biscuits given to me whilst there. Nurse sat with me whilst the first meds went in.
Since being home I've had something to eat and drink and headache no better so just laying on settee.
Whilst there 2 ladies got to ring the bell which was very moving.
I've now got cocktail of drugs including 7 days of stomach injections (great). My next session is 2nd July.
Wishing you all a good weekend in the sun and those starting chemo next week lots of love.
It’s a whole new world to us all, and isn’t it strange how we all learn all these new words so quickly, it is daunting some days and some days can feel quite normal, we will all pull each other through this treatment and I’m hoping we all have more good days than bad, hugs n best wishes
Trowster aka Shirley
welcome gonna get they this, and we will, hope the oncologist meeting goes well today, I hope you taking someone with you, it’s so hard to take it all in, but the nurses are very helpful,
Heels, there’s a Breeze Group that runs every Wednesday evening just a gentle 10 to 12 miles, Louise is the leader and she is lovely, I think they set off not far from Farndon, she also does longer Sunday rides, I sometimes join her on a Sunday, the ladies in my group have been so supportive and helpful, I can really recommend Breeze for making new friends and cycling budges,
thank you x
that's a good idea to tick off dates!
I will do that too I think!
Sharon xx ( Fairie) 🧚♂️
Welcome @GonnaGetThruThis - couldn't agree more Imp ...this forum has already helped me soo much and i am sure after my visit with the oncologist today (which i am very nervous about as it makes this all very real) i will have some questions! Still not completely up to speed with all the new lingo.
@Trowster i would love to join on one of your bike rides...Deeside is only 15 min drive away and I have just looked up Breeze, it is definitely something I'd like to take part in, great initiative. Hopefully can join as/when treatment allows.
Have a good Friday all.
Just wanted to say ‘welcome aboard’. I know it’s a journey we would not choose but there will be support all the way.
Another newbie here 😞
I've been lurking on this thread for about a week as based on the appointments ive had so far i expected to be a June chemo starter as well and now ive had confirmation. Here's a litte about me.
About 5 weeks ago I found a lump, fast forward through the first checkup, mamogram, ultrasound, biopsy, results, ct, mri, clip put in, oncology consultation (yesterday) and here i am. Grade 3 inv ductal cancer, triple negative but localised to the left breast. Today ive had a call from the genetic testing department for a councelling session on 2/7 and also the chemo department for my pre-chemo session next week 16/6 and the first session booked for 21/06.
I'll be having a combination of EC in a 3 weekly cycle for 3 sessions then 12 weekly sessions of Pacliaxel .
WOW these are all words and acronyms that 6 weeks ago i had never heard of, like so many here.
But here we are, about to face one hell of a journey but and we are going to get through it, together, and i 'look forward' to giving and receiving the support we need.
i run the local Breeze Cycling Group for British Cycling and take ladies out cycling from Deeside, maybe one day you can join us,
Thank you @Trowster for your welcome! Sounds like we are following a similar path as I am seeing the oncologist at Glan Clywd tomorrow so will hopefully not be too far behind you in starting Chemo. I recently moved from London to North Wales and also did a cycle ride to Rossett recently 🙂
Hi Heels n welcome,
we all learn so many new things with a diagnosis, but there is so much support on this forum, hope your meeting with the Oncologist goes well on Friday I had mine yesterday and I start my chemo on 25th June at Glan Clwyd in North Wales,
I am new to this group so i hope you don't mind me joining. I have been diagnosed with Lobular cancer Estrogen and Progesterone positive ( all new words i have had to learn) and i am seeing the oncologist this Friday in the hope to start my Chemo soon. No idea what that entails, so am finding super helpful reading your journeys. All a bit daunting but looking forward to getting it started so that i can start my journey to recovery.
a positive attitude really helped me through it last time, hair grows back if you lose it, things do get better and some normality returns,
glad you so well organised, I was prescribed the mouthwash at the hospital but luckily I didn’t have a sore mouth, remember to buy a good thermometer as it’s important to keep a check on your temp during treatment,
Love your Mantra but it might change to IFHC, it can be yukki but looking back it’s doable but I wasn’t hoping for a second turn, but it is what it is and we will get through this.
hope you n hubby are both ok and finding some time for yourselves.
hope you have answers very soon, I don’t know about you but know I know what’s happening I feel like I have a plan and hopefully it will all be done for Christmas.
my Pub run was a great evening and the pizza n cider went down a treat, today I cycled 35 miles to a fisheries near Rosset with friends for lunch we had a lovely day, out with another friend tomorrow to Greenfield Heritage Centre, n on Sat I’m cycling 40 miles to Tattenhall Marina with 12 friends, I’m really trying to get out most days while I can, but going to book a Pedicure n Manicure before treatment because I’ve been told treatment could effect the nail beds n painting with a dark polish may help,
@Fairie To be honest I am expecting to feel pretty poorly and if it is better than I feared, then all well and good. You should have some good days too in between each treatment. I just focus on the fact that I need to get through this.
@Fairie Those sound like the same ones Yvonne and I are having. It will be good to see how we all fare on them. I wish you all the very best for your first treatment. I am going to make a big chart with the dates on and cross off each day as it goes past as each day is another step in the right direction. Siân xxx
Just a quick message to say I hope you aren’t too long waiting for your HER2 result and that you can then get a definite date for your chemo. I felt positive when I had my date as it felt like I was back in the driving seat albeit not the travel/journey I would have chosen.
Hope the 15th goes well for you. It will be interesting to compare the experience of the first session. Take care.
I am so sorry to hear about your sad news. Talk about life being unfair!! Sending you positive vibes to help you rally and cope. Take care.
My “ body needs this” is going to be my chemo mantra and hopefully it will help me through it. Of course that may change and my mantra may contain words I cannot type here but let’s hope not! Take care.
Sounds like you are getting organised for your chemo session. I ordered biotene toothpaste and mouthwash online (Amazon). My dentist told me if I do get a sore mouth the Difflam mouthwash is good as it contains pain killer. My local chemist stocks this but you can get it via a GP too. Wishing you well for your first session.
Wishing you all the best for the 25th. My first chemo (EC) Friday. I will share how it goes. Take care.
@Flower123 I hope you get your chemo start date in June as this is a good supportive group. I’m 58 with a very similar diagnosis to yourself (lymph node involvement). I’m starting my chemo this Friday the 11th. I’m quite nervous but trying to stay positive as by all accounts a positive mental attitude is supposed to help and I’ll take all the help I can get! I’ve taken advice from friends who have already gone to through this journey with regards to solutions for side effects etc. I’ll share on here the things that work. Keep us posted re your start date.
@Trowster That’s great you have a date to start that’s what I’m hoping for on Monday . Enjoy your pizza and cider . X
had a call from my Oncologist today, he said there was a mix up with my appointment he really wanted a face to face but a phone consult had been booked, But he doesn’t want to delay my treatment any longer and I will be starting chemo on the 25th June, and he wants to see me face to face before my second treatment, don’t know if I’m spelling this correctly but I will be having Dositaxil and Cyclofoxmide it wasn’t a very good phone connection, his nurse will be phoning me back with more information and I need to go to Glan Clwyd to sign the consent forms for the treatment and arrange blood tests for 2 days before my first treatment, he did tell me the node under my arm was enlarged to 1.5 inches and wondered if I had felt it, I hadn’t, my cancer is HER2 NEG, ER Positive. So I have 14 days of feeling great left before treatment, so tonight I’m off with the girls to the pub for pizza n half a cider on the bikes, n I will try and get the miles in while I can, also going to book to get my nails painted a dark colour, n get my eyebrows tinted while I still have them, take care everyone, Louise I hope all goes well on Friday xx
So sorry to hear your sad news life can be really cruel at times.
I lost my mum in January although her health hadnt been great it was a real shock. My dad at the time was in rehab after a fall post surgery and sadly could get to be with her. Luckily my brother and I were allowed in but holding the phone to mums ear so dad could talk when she had lost the ability to communicate but was aware of everything broke my heart they had been married 61 years.
2 months later I got the news I had breast cancer, mum had fought it and won 20 years ago so not having her here has been made harder.
I have my covid test today, oncology bloods early tomorrow then that's it I shall be a confined to the garden until D day Friday.
I went shopping yesterday and got things I had read about or have been suggested to me. Coke, peppermint tea, baby tooth brush (the tooth paste and mouth wash I will order online) dark nail polish and factor 50 suncream and some snacks to take in with me.
I'm not nervous about Friday it is what it is.
Love to everyone about to start the journey.
enjoy the day you are in lovely! That’s all any of us can be in.
Together we girls will conquer this 💪🏼
lots of love
Thinking of you and wishing you all the best.
I start next week too.
I like what you said about body needing this treatment. I will hold onto that.
lots of love x Sharon
I too am trying to make the most of the time before chemo starts on the 15th. Mine will be given over two days I’m told.
herceptin and doce? And carboplatin
will think of you xxx
my heart goes out to you and your family. Heartfelt condolences to you.
I too have been in a similar situation with my MIL in March and it was just so distressing what with my diagnosis too. My husband didn’t know whether he was coming or going bless him😔
thinking of you and thank you for thinking g of me and taking the time to message. That’s sooo kind and thoughtful ❤️
I have my first two days of chemo and Herceptin on the 15th and 16th next week🥴
very nervous of what side effects I experience.
I feel very well now but preparing myself to be very unwell😔
dreading it to be honest.
Any advise welcome. I’m having Doc ??? Carboplatin and the Herceptin.
my love to you and everyone xxx
Hi @Flower123 it is very good to hear your scan was clear. The waiting is terrible, isn’t it? I know exactly what you mean re the emotional impact. I have had some counselling which I received from CBT Clinics via Macmillan. I also had some which was offered by my hospital. I have gone onto antidepressants in parallel with that which are helping to keep my mood more stable. Antidepressants are very commonly prescribed for those in cancer treatment and I just see them as part of my medicine. I think that sharing on here should also help all of us a great deal. xxx
Im not sure yet if I will be starting chemotherapy this month but have oncology appointment Mon 14th .Not sure how long it takes from this to first chemotherapy. I am 50 yrs old and had a lumpectomy and all nodes removed on April 30 th . I had 8 nodes of 18 with cancer and have been told that there is some pre non active cancer cells at edge of margins that will need another operation after chemotherapy. I have been told chemotherapy, operation, radiotherapy and hormone therapy. I had a PET scan last week and was told it has not spread to any parts of body which was AMAZING!
This is such a very scary journey and I find it very hard to keep emotions together.
I am ER+ and HER 2 neg .
Hope I’m on this June start as you all sound lovely x
I am pleased to have a twin going through the same chemo as me. It will be interesting to see what different side effects we get. Hopefully not too many!
Take care of yourself and let others look after you as much as possible. Siân xxx
simplyeve, I am so sorry for the loss your family has had, it must of been a very anxious time for you all and not something any of you expected or could foresee happening, to think of all of us at this time shows just what a kind and thoughtful soul you are, try not to overdo things but I’m sure you must be running on adrenaline and having to sort out her house isn’t a quick and easy job, could you maybe sort what you want to keep and get a house clearance company in, my friend did that with a company from Chester and they totally cleaned his MIls home when they had emptied it, I remember with my mum the council let me keep for a couple of weeks longer so long as I paid the rent, take care of yourself and hope hubby is doing ok, Mums are very special there the glue that holds the family together and nothing can replace them, hope soo goes well for the funeral and that your appointment goes ok on Friday, I’m getting more anxious the closer tomorrow gets, but I just want to know so I can plan ahead with hubby working away, big hugs and love to you and yours 💖💖
Sorry I haven't been as involved as I would have liked, unfortunately my 95 mil was taken into hospital on 6th May, diagnosed with an infected gallbladder and was doing ok but needed keyhole surgery to remove it, unfortunately whilst in hospital she had a fall and broke her hip, obviously she needed surgery and although she came through the surgery on the day, she developed a blood clot and she passed away a week ago today. To say our family has been on a roller coaster this year is just the biggest understatement.
Anyway long story short she lived in council accommodation which has to be emptied asap so given that I don't know how well I will be during my chemo and between trying to clear her belongings, contacting family, supporting my hubbie and helping arranging the funeral, my own issues have had to be put on the back burner. However I was conscious that treatments and appointments were starting to take off this week so really wanted to say
@Trowster good luck with your Onc appointment tomorrow
@Louise65 glad you cardio was ok even though bit painful and good look with your bloods on the 9th and your 1st round on the 11th.
@Impatience good luck with your 1st treatment on the 11th too, did you decide which app to use?
@hopeful1974 seems like we might be twins in terms of treatment I haven't seen many ladies having TCHP recently and will be glad to have someone to share experiences with it was also great to hear your advice given your pre-surgery treatment, hopefully I will be back online before the 15th so will wish you luck at that point.
@JessicaB I hope that your HER2 results are good when they come through, the waiting is the worst, I knew mine was positive from my first set of results, but the consultant would not confirm my treatment until after the results of both my ops were back so for me the worst part of all of this so far has been the waiting .
@Fairie do you have your first date yet? Do let us know how you get on.
I have another busy week, clearing & cleaning, Funeral Thursday and Friday am off for my cardio and the lymphodema clinic in the afternoon, still don't have any headwear sorted and haven't got my nails done yet, but am hoping I can get those done whilst I recover from my first chemo. Hope all goes well for everyone. xxx
Hi Louise, glad you’ve got your hats ready, I’m sure by December you might have a very short covering of hair, you might still feel a bit tired but not to tired for a good time out with a drink n a dance, you can always rest the next day, I hardly wore my wig last time, but did put it on for me works Xmas meal, n ended up taking it off because I was so hot, just wore it for the pics, try and relax and take time for yourself now before your next stage starts, I’m sure you will be anxious in the morning your treatment starts, I have my Onc app next Tuesday and I’m getting more anxious each day, wondering what my next phase is going to be, I think once we know what’s happening we cope better, we’ll do anyway, I like a good plan of action, have fun trying your hats out and maybe post a pic, I’m off to the hairdressers today, she’s decided to put pink streaks back in my hair like she did 13 yrs ago, lol
Cardi all good although boy did it hurt as I have tender area where he decided to push I did get it checked as thought there was lump but its just breast tissue.
My hats have arrived and it hit me I'm going to be bald. I don't fancy a wig but may change mind later on.y niece gets married at xmas and I aim to be well enough to be there and have a dance.
I know next Friday when I arrive at hospital for my 1st chemo I will be nervous but know the staff will be very supportive.
Hi @Trowster. Friends and a loving partner sound great. My husband, parents and friends have been invaluable in keeping me going during this time. I have had a couple of runs this week, 6 weeks post-mastectomy, which has given me a real boost. I don’t usually manage more than a short walk during chemo, but do try to do that as soon as I feel up to it as it really does help me mentally and physically.
I had my mastectomy on 26/04 and start chemo on 15/06. I’m enjoying these two weeks before it starts, seeing lots of family and friends. I hope to continue to be able to see some people on my good days after chemo but know I won’t be able to do as much, so making the most of it now.
Hope you are all managing to enjoy this weather! Siân xxx
I had my surgery 26th April and had my oncology consult last Wednesday. So similar timeline to yourself. Today I have my date for first chemo session (11/6 EC x 3 followed by T x 3). Like you I like to be prepared but it’s getting a balance between that and not making myself over anxious. I had grade 2 mixed cancer 3cm with 14 positive lymph nodes so I keep telling myself chemo is a good thing and what my body needs right now.
I’ll take a look at the apps. Take care everyone. X
Hi, here I am joining you lovely people! I had a mastectomy on 28 April and have my first meeting with the oncology consultant on Monday (Well I did! They are still waiting on HER2 results so its been put back another two weeks 😞 ). I have had lots of help and support so far but to be part of a group going through it will really help too. I am trying to find the balance between being prepared for what is to come (without scaring me) and just dealing with it (but worry doing that means missing out on advice/help by not educating myself enough). The apps look good so I have downloaded two of them. I already use one for peri-menopause and was going to use that, however this looks even better. Be kind to yourselves folks x
friends and a loving partner are my life line, while I’m waiting for my oncology appointment I’m taking every opportunity to get out for social bike rides with my friends, over the past 2 weeks I have cycled 200 miles n I’m feeling great and a bit guilty that I’m out cycling while signed on the sick,I have been very lucky to recover well after both operations, lumpectomy axillary then a bit more breast tissue removed, but I am building up my spirit and health ready for the next stage, I hope you making the most of this lovely weather today, I’ve relaxed in the garden and we’re having the first BBQ of the year,
Hi @simplyeve, I didn’t use an app, but that sounds like a good idea. I will take a look at them. I just noted everything down in the Notes section of my phone. They really can manage most side effects either with other drugs or by reducing your doses so really don’t be afraid to let them know your side effects as soon as they happen. You don’t need to suffer unduly. I have always been someone who has tried not to use medication and was even averse to taking much paracetamol but this has now changed somewhat and I am very grateful for the drugs. Sometimes it can take a few days to work out which drugs work better for you, so that is another reason why the diary is helpful.
You have reminded me that it is a good idea to paint our nails a dark colour on our type of chemo. I did it last time as well while on EC and whilst my nails did become very soft and brittle, I did not lose any.
I have a wig which I tend to wear when going out and feel more comfy in one of my beanie hats when at home. As I have not had chemo since March, my hair has grown back enough so that I have quite good coverage again so am now not bothering to put anything on my head when around the house. I tried the cold cap but most of my hair fell out anyway so I ended up having a very short buzz cut. The cold cap works better with certain types of chemo and EC is one of those which affects the hair the most, so it may still be worth a try if any of you are thinking of trying it. I didn’t find it hard to tolerate. It felt very cold for the first 15 mins and then I didn’t really notice it. It does add a couple of hours to your treatment, though. I don’t think I’ll try it this time as I have so little hair to lose.
Let me know if you have any questions. I have picked up a few tips along the way, such as keeping my hands and feet well moisturised and using natural products for washing and on my skin as it tends to become more sensitive. Pampering myself with nice products has become an enjoyable part of it and I particularly like Jennifer Young products.
One last recommendation is the book Ticking Off Breast Cancer which made me feel like all the things I was going through and feeling were completely normal. It does not go into all of the medical aspects of treatment (there is another book I found which is good for that) but more just describes the journey generally. It helped me a lot.
Enough from me for now! I hope the weekend is good for you. Siân xxx
Hi @Trowster it sounds like you have developed a good attitude. I would second you in saying how important good friends and family can be. I have accepted every offer of help I could, particularly of meals being brought over. That has been a godsend for me. Having a friend sit with me or go for a walk has helped me hugely during the past months, as it makes me feel like some part of my normal life is carrying on.
I look forward to hearing your updates as we go through this together. Siân xxx