I had my first chemo yesterday: Abraxane (nab-paclitaxel). I am lucky to get this one because of covid, as usually it is too expensive to prescribe, only usually given if you cannot tolerate the weekly paclitaxel.
They told me it usually gives less side effects, and so far so good! Yesterday and today I have felt fatigued and a bit woozy, but Ok. No sickness or pain so far, fingers crossed. I wouldn’t feel able to drive or do anything complicated, but fine to potter about at home if I take it easy. If it doesn’t get worse I will be very lucky!
I was very worried about the cannula. I am squeamish about needles and they always struggle to get blood from me. To have the best chance of success I drank loads of water in the 2 days running up, and wore double gloves on the way there. They Soaked my hand in warm water and managed the cannula without a problem. I hated having it in, but it was only 1.5 hours in total for me, so not bad. The saline and Abraxane going in felt strange and cold, but not particularly painful.
So I am grateful to have the first round under my belt, and will keep my fingers crossed that I won’t get more side effects cropping up as I go. (Or if I go, that they are manageable.) All the nurses were fabulous and supportive- really keen for me to call with any issues at all, so that was reassuring.
Hope everyone is doing ok- hope side effects are manageable for those who have started, and that those who are waiting manage your keep the nerves in check. Waiting sucks! Xx
I'm OK with needles and bloods. But my veins just.. They like to hide. Tho they always seem to get there in the end. So yeah hopefully I will be able to push on without one. But if I need one then so be it. I must admit for the short time I was in the chemo unit I really stuck out like a sore thumb. Being 33 and having 4 inch boots on. Everyone else was a much much older ladies (and men). I don't know why this shocked me but it made me get a bit anxious. As silly as tht sounds
You go girl.
i was terrified of having a picc line being a needle phone the procedure freaked me out but it was really nothing to worry about and they didn’t give me the choice of not having it lol xx
I haven't had a picc line yet they are seeing if I can do it via cannula and then a picc line later down the road. I just feel like the faster I start the faster I can get running to the finish line. And hell yeah I feel like Mike tyson with the amount of fight I am charging at this cancer with. And yes I hope we all win.
You sound very much like me just want to crack on with it now and tick the treatments off.
I had my chemo postponed 1 week should have started last Friday but had to go for a PET scan first which was this morning. I had a nightmare start 8am was my appointment and they said allow 2 hours. 830 the radioactive injection had not arrived. I ended up going into the treatment room at 845 then had to wait 1 hour for it to take effect. I just kept clock watching as my chemo appointment was the other side of town and would be pushing it let alone taking the meds i was supposed to 1 hour prior.
The scan only took half hour so i was only half hour late for chemo but they were ok cos i'd let them know and were a little behind anyway.
I wasn't scared or even apprehensive about the chemo and as they say first time they sit with you and explain everything so it flew. I am a needle phobe but have a picc line fitted however they have dropped that i need to inject myself in the stomach for 5 days starting from Tuesday, not sure how i'll manage that without passing out lol. But all in all i am putting the scores on the doors as Jojo 1 Chemo 0 I know its very early days but this is a fight and one i intend to get the better of.
Good luck with your treatment hun
Hey everyone I finally have a start date for my chemo next Tuesday wooohoo
Had to see my onocolgist today to get my bone scan results and results of calcifications that the mri picked up.
The calcifications turned out to be dcis so will have to have a mastectomy.
But no spread at all not even in nodes so I can be thankful for that.
Thank you Jo22 for the reassurance- glad to hear it has not been too bad.
Everyone in the unit is lovely and the Herceptin injection was fine. I asked to warm it in my hand, which worked well. The nurse was new and very kind, I put the timer on my phone saying it was so I could tell when it would be over, but really it was so we could both see how time was passing and make sure it was fine nice and slow. She did a great job and I feel fine. Have to stay 3 more hours, and seeing other people have chemo. Tomorrow afternoon it will be my turn.
first treatment- tick!
Hang in there everyone!
Thank you Jo and NAJ
I am so glad I found this forum you are all so lovely and are really helping to put my over active mind at ease.
I need to find myself a headband. I am visualing the cold cap as a cold winters morning at the side of the football pitch when you’ve forgotten your bobble hat!!
I hope you are still feeling good following your first session.
Hi Jane, welcome!
I had 2 lumpectomies (for 2x IDC tumours and some DCIS) with positive margins in July & August but then a high oncotype result in September suggested chemo. I'm having EC every 3 weeks for 18 weeks then a mastectomy Feb/ March next year all being well.
Hopefully you'll get some answers from your oncologist tomorrow and a start date for your chemo.
Best of luck,
I almost forgot this. If you're being a good girl and drinking lots of fluids you will almost certainly need to use the loo during your chemo session. If you're having yours by cannula wear clothing you can deal with one-handed (practice at home first). 😊
Hi Whiters14 & York75
I had my first chemo last thursday and I was really nervous both of the process and the after effects. I am having EC and using the cold cap so it took about 4 1/2 hours in total. The first session is busy you don't get much alone time as they are talking you through everything including your meds to take home which is usually mouthwash and anti sickness tablets. I know other people had others things too depending on their chemo.
Once sat down in your chair (which usually recline) they fit your cold cap. Make sure you have the headband to cover any exposed skin. I had a headband but realised as I have quite a high forehead some bits of skin were still exposed so next time I will take a couple of cotton pads to cover those bits up. I didn't find the cold too bad at all as the room was nice & warm but a blanket is definitely useful. Some people suggest warm socks and gloves but this would have been too much for me and also no-one took their shoes off so I never used mine.
There was a lady coming round offering hot drinks and biscuits and then we were also given lunch. I managed to read a little and caught up on a few messages but apart from that I didn't have time to do much else. I actually felt quite elated getting out of the chair and going home. It hadn't hurt and I felt fine.
I felt OK the first evening, had a proper meal and a good nights sleep despite the PICC line which can be a bit tricky (I now sleep in a long sleeve top to stop it catching). Had some feelings of nausea and tiredness so rested the first day. 2nd day had a morning nap but then ok and 3rd was up and about feeling great. None of this would scare your children as you really don't look ill and you're not in pain. Keep on top of your meds is my best advice. I don't like taking medicine/ tablets most of the time but I ran out of paracetamol and had an awful day 5 with sinus/ achy body pains a bit like flu. Once I'd taken some it virtually disappeared. I also suffer from early morning dizziness, not sure what that is yet.
Wishing you both all the best for your first session, it will go ok but I do know exactly how you feel. Jo xxx
I had the same op in August but my chest isn't as flat as I expected. It looks a bit 'cornish pasty' like. The breast nurse said the swelling below the wound is probably a solidified seroma but I don't know if that will disappear in time or not - I certainly hope so. So far it sounds as if our experiences of chemo have been similar. I felt grotty days 8 and 9 and apart from occasional heartburn I've been feeling good ever since. My next chemo is Wednesday all being well but I'm slightly concerned because my foster child has developed a cold so I'm hoping not to catch it from him. I had my head shaved down to No. 2 on Saturday but like you I haven't lost any hair yet.
Jane - I bought extra large t-shirts to wear in bed after my op. It was almost impossible to find pjs that buttoned down the front and looked nice so I didn't bother. I had no pain from the wound but my armpit felt a bit odd and when I did the exercises I could feel the stretch for quite a few weeks afterwards. All of this is really scary but everyone on here is in the same boat. Good luck.
Welcome to this group, hopefully you will find some helpful hints & tips & all round general support. I had my mastectomy & lymph nodes removal mid August & was not as bad as I thought. The biggest shock was the flatness of my chest. You will be a bit sore & stiff to begin with but I found the exercises really help. I had a physio session via video, which again was very helpful. I was impatient for the chemo to start, but they give you about 6 weeks to heal, so I made the most of the last couple of weeks, whilst I felt well. You may well have scans & tests to keep you occupied. I’ve had one chemo session 2 weeks ago. I was on the ward less than 2 hours & apart from general fatigue, which peaked about day8, I’m feeling really good. I was given a ‘prescription’ for a wig, so would hold back buying one yet. Thought about the cold cap but then thought it wasn’t guaranteed so declined the ‘brain freeze’, but each to their own. I haven’t lost any hair yet, but it is early days. I was given a prostheses which is really comfortable, I have surprised myself by wearing it every day, it feels very natural.
Good luck, & stay positive.
A new starter here - very early days, but having had mastectomy surgery postponed twice, I'm now meeting with oncologist Friday and hoping I'll be getting started next week! Everything seems to have been dragging.
No idea what I will be getting or for how long so just need to go with the flow!
All a bit scary but i've been far more positive and realistic about this whole nightmare than i would have expected, so just want to crack on!
I know exactly what you mean, I have Herceptin tomorrow and first chemo on Friday. I can’t wait to get first ones ticked off the list, but I’m nervous about my 6 year old girl seeing me poorly.
She knows I have cancer and needs treatment that will make me ill for a bit and make my hair fall out, but I don’t think she can really imagine what it will be like, and I don’t want her to scared.
she has been talking to her friends at school: ‘None of the other mummies are having chemo?’ She finds it hard that this makes me different. 😔
But saying that, kids are more accepting than we think of situations- she saw both her granddads deteriorate in nursing homes without too much upset- if we are as normal as we can be about the situation, they soon get used to things being different. I hope!! 🤞🏻🤞🏻🤞🏻
Thank you NAJ
I am going to try the cold cap so a blanket sounds like a really good idea.
I need to get the kindle updated and maybe download a film.
I’m nervous for Monday but just want it over with at the same time. I’m worried about feeling poorly as don’t want my boys to see it and feel scared.
Glad to hear you are impressed by that wig. I have been looking at those for a while and wondering whether to get one so think I will go for it.
I am having haircut tomorrow. Not quite sure how short yet but first hair cut since July so quite looking forward to it although may be a waste. Finished work yesterday so enjoying a few days leisure before chemo on Monday.
got my wig from
I think it depends on how long you're going to be there and if you're going for the cold cap.
Cold cap I reckon you'll definitely need a blanket.
I took crochet (but my hands were shaking too much to do it) and my kindle, a bottle of water and some sweets plus my phone to ring my friend to come and get me. My chemo took two hours and the nurse sat beside me the whole time feeding drugs into me and talking about what to expect/look out for so in the end I just sat chatting. Don't think I could have done any crochet with a cannula so next week I'm just taking my kindle, drink and sweets.
Hope it goes well for you.
Glad to hear everyone’s treatments are going well and that you all feel quite well.
I’m really starting to get nervous about starting my treatment on Monday.
Can anyone recommend what, if anything, I need to take with me?
Thanks Linda, that's really helpful. I've had my hair cut too just so its not such a shock.
I'm struggling with food etc and acid reflux/indigestion but trying to keep on top of it with gaviscon. Well done for having a walk and glass of wine, sounds lovely. 🙂
NAJ - oh my goodness, that sounds terrifying! Thank goodness for our NHS. It is not too uncommon for us to see patients costing over 50k, often complex patients with multiple surgeries and ICU stAys. This year we submitted costs for a patient which was over 100k- it was a poor child in hospital for over 6 months. Breaks my heart to think what they must have gone through.
But at least I like in other countries we don’t have to pay ourselves. My year of Herceptin will cost around 20k. 😱
Definitely an ideal opportunity to look at how the money is spent. We are all so lucky that we don't have to worry about finding the cost of our treatment.
Three years ago I was in critical care for 10 days, had four operations and then a further 11 days on a ward when I had necrotising fasciitis (the flesh eating disease), sepsis and then pneumonia. I dread to think how much that lot cost. 🙄
I did meet some hilarious characters while I was in there - maybe I should write a book.
The day after my first surgery, 28th December, my dad came to visit. I had cannulas in both arms, a catheter, my leg bandaged from ankle to the top of my thigh, I was on oxygen and was attached to all kinds of monitors. He looked at me and said 'are you sure you're not going to the pantomime on New Years Eve?'.......
NAJ he he, now there’s an idea!!
More likely I have a kindle full of lovely books gifted to me by a friend, so I shall read some of those.
Also I will be quizzing all the staff about the cancer services- I work at the hospital in finance, and we use all the information from the patient records to cost the patient treatments. So the better I understand exactly what happens in a department and who does what, the better I can do my job. So I might as well take the opportunity to learn more and share it with my colleagues.
They will be sick of me asking questions! 😆
Good luck for Thursday - what are you going to do for 6 hours? Maybe you could start writing a book. Ruth Hogan started writing when chemo kept her up all night and she's written three books now and they have all been very good.
How are all doing?
Hope you are keeping in good spirits!
I had an appointment with a chemo nurse today, she was lovely and reassuring, and reiterated the message of call the hotline any time, it makes their job easier if we are vigilant about potential issues, and that the will always answer the phone. She struggled to get blood from me despite me drinking lots of water all morning to help. However, they use the vein in the hand/ lower forearm for chemo, and those veins look much better apparently, so I will give it a go without a PICC line. I’m one if the lucky ones with only 4 cycles, so fingers crossed veins will hold out.
I was trying to get a flu jab done beforehand, and lucked out at my local surgery getting a jab at 6pm- yay!
So I am nearly there at last - Herceptin on Thursday (followed by a 6 hour wait to check for reactions!), and Abraxane on Friday. I’ll be glad to tick the first ones off!
Just thought would pick up on the cold.
I bought a couple of little bamboo cotton sleep caps (look like something out of Upstairs Downstairs - bit like a maid) which I wore at night and also when I was losing hair, it keeps that in too rather than having it on your pillow.
I never wore my wig (she is being donated now) but had a selection of head gear I bought on Amazon - bamboo bandanas, silky scarf attire etc and of course woolly hats but i went into the hot weather (so had to use factor 50 on my head if I did go out with nothing on).
I used to colour co-ordinate my headgear with my clothing - just made it more fun for me - saved a fortune on cut and colouring.
Hope that helps.
Like linflo58 I don’t feel too bad at the moment, day 9 was my turning point, so I will manic again running around doing house work, sort out the garden and hopefully do a couple of Jazzercise classes via Facebook. I am thinking I am currently very lucky so I must be careful not to do too much.
at least I understand when I have my 2nd session on the 22nd October that the symptoms come and go 😬.
Everyone stay safe and strong, good luck xxx
❤️ To you all getting your wigs ❤️ it’s another step forward for you all ❤️ it is a big one to get on with and you get the one that you are comfortable with ❤️ I will admit, I had wig for treatments, coloured bobs and tinsel wigs well just because they were there and the steroids made me shop on line 😁 silk pillowcase helps scalp when you do loose your hair and beauty despite cancer did good scalp care kit ❤️ 💕💕✨✨Shi xx
Just thought I would do quick post. Hope I’m not tempting fate, but I’m on day 11 post 1st chemo session, and am feeling pretty good. Tiredness is just lurking in the background, I can almost pretend it’s not there. I have shoulder length thick hair which I only usually wash once a week 😜. I have noticed no change in it, even straightened it today. I’m just taking each day as it comes, and hopefully will feel the same until my next chemo in 11 days 🤞
Hi Strangely Upbeat
I shed a few tears over the last few weeks at the thought of losing my hair and I can only suppose that was because it's then obvious you're going through chemo. At my age (60) I'd hardly be making a fashion statement. By the time I got there yesterday I was in the 'sod it let's just get on with it' zone. I do look a bit like I've returned from the gulags but it's nowhere near as bad as I feared. The hairdresser used clippers on a No. 2 setting so now I'm just waiting for it to fall out. Friends and family think it doesn't look too bad. You do notice the cold though!
I went to a local wig shop that was on the list given to me with my ‘prescription’. The lady was lovely, I only tried 3 on as she has to quarantine them for 72 hours. I decided on colour & length beforehand so it was easy to whittle it down to 3. In an ideal world I would have liked to step out of my comfort zone & try on something completely different, but I wanted to feel comfortable, so chose something very similar to my own hair. Last time my hair loss was gradual, it didn’t come out in clumps, just thinned. In the end I cut it short to be able to wear the wig comfortably. At the moment I have too much hair to fit under the wig.
I hope you start to feel better soon, I managed a nice walk again today & also a glass of red wine with dinner.
Good for you Not a Jockey, your really have taken the bill by the horns, going shopping after having your head shaved 😀
I am going wig shopping on Tuesday and going to talk to them about shaving my head and possibly using my hair to make a wig, I know this takes a few weeks so will get something to get me started.
I had a dream the other night about having my head shaved and freaked out when I woke up and had my first cry since all of this started. But then I thought do I go for a short style rather than the full shave. What I do know is that I want to be in control and don’t want to wake up and find it on my pillow.
Were you nervous, emotional?
This bit is really doing my head in.
Thanks for you help xx
Good to hear you are feeling well. I too feel pretty goo and I am only on day 2 so I know that could change but so far so good. The fogginess has lifted and part from some nausea all is ok. Like you my appetite is picking up which like you say is nice when you have time on your hands to cook.
I'm going to try and work from home next week and see how it goes. I've also got a wig appointment for an NHS wig so looking forward to that in a weird way. Did they let you try them on? I had long hair but gone short just to make any loss a little easier to bear so now I'm not sure what length wig to choose! It would certainly hep to try them on.
And yes verbal diarrhoea is a side effect ...lol 😅 xx
Wow well done you! Very brave Not a jockey and rightly so, we all have to do this our own way!! Way to go girl!! xx
Hi Strangely upbeat
I had my head shaved this morning. I've been dreading it - which is odd because I am a grave disappointment to my hairdresser as I never do anything with my hair just wash it and towel it dry. Just really lazy I suppose. Anyway by this morning I was definitely up for it. I figured if I was going to come out practically bald I'd try to look like I meant to so I put on jeans and an aviator jacket and some proper blingy earrings. It was ok. None of my hair has fallen out so far and the hairdresser said it didn't look like it was going to any time soon but I was ready for this. He did fit me for a wig - blonde!!! Looked pretty good but not sure if I'll wear it much. I brazened it out and went to the supermarket in my newly baldish state and yes, people did look at me but hey, that's their problem. I'm actually ok with this.
I'm on day 11 and feeling good.
I’m on day 10 after first chemo. It seems strange that some of us had operation first & chemo second, & some have chemo first. It has been better than I thought, the tiredness/ weakness peaked on day 7, felt very drugged but a lot better now. I have had no sickness which is a blessing, and no constipation. I recommend lactulose or similar for the first few days. I’m eating like a horse! My life revolves around my next meal. Fortunately I have lots of time to prepare food, so am quite enjoying it. I did a lot of batch cooking for ‘off’ days, but that is all still in the freezer.
I got my wig on Thursday, (on the NHS), I chose something very similar to my own hair, only nicer. I have lost my hair before, it has never worried me. The wigs are really good for outdoors, & indoors you don’t really worry about it. Your friends & family accept you as you are. Mrs Quincey you look lovely. Isn’t it strange wanting chemo to start? I felt in limbo waiting, in the end I embraced the time & made the most of those days whilst I could.
Chesterbrownbear, I did the same on Thursday, took my daughter’s dog for a walk in the sunshine & felt much better. I think you just have to do what you feel you are able. Some days that may be nothing. We need to be kind to ourselves.
I’m hoping that I will feel ok between now & my next chemo on 22nd October, Not a Jockey, we’ll have to compare notes.
I work in a school, so envisage being off for 6 months during treatment. I will hopefully be working remotely from home, to keep my brain active.
Sorry for rambling on, is verbal diarrhoea a side effect of chemo 🤣???
Regards Linda xx
Hi ang 3
im the same as you more of less.
i start chemo hopefully next Friday with the aim of shrinking the lump.
not sure of the drugs I am not that up on them yet
first round I know is ec 3 cylcles every 3 wks
then switch to something else 4 cycles every 3 weeks then something weekly for 12 wks.
surgery next lumpectomy they are thinking then radiotherapy, I have also been sent for gene dna will decide what to do when I get results back but I’m guessing that’s a long way down the line yet.
I work in a school, it’s nice to find someone on a very similar journey.
I have been ok through everything so far but I am freaking out about loosing my hair. It is such a big thing, how are you managing? Xx
❤️ A song from the greatest showman - this is me 👭👭👭 is you gang 👭👭👭 step by step you’ll get each other safely through ❤️ remember no rights or wrongs do what’s right for you to get through, always phone your rapid response teams, don’t think oh I’ll leave it an hour if you don’t feel right even with no temperature ❤️ always ring to keep safe ❤️ your teams will be glad you are being vigilant ❤️💕💕✨✨Shi xx
Had my first EC session yesterday. I was really nervous but the nurses were amazing at just getting you sat down and getting on with it. The cold cap was really hard but mainly because it was touching part of my forehead that the alice band didn't cover so will take some extra cotton pads next week. A blanket was essential for me even though I didn't think I'd need it to begin with. Plus for this first session I really didn't need anything else. They brought us water, tea, coffee, biscuits, lunch and this was on the NHS! I barely looked at magazines or books as they are doing stuff all the time, because its your first session there is a lot to explain especially with your take home meds.
Coming home was fine but last night was awful, I struggled to sleep due to nausea and just an odd angst/ muscle pain. But I did sleep eventually and wonder if it is the steroid that does that. I think others have mentioned it in other chats.
Felt much better this morning some nausea, headache and dizziness but very manageable with the meds & paracetomol.
I have to say people have been saying oh you are brave & strong going through breast cancer treatment (and I'm not belittling those that don't have chemo) but for me this is brave, chemo is the next level.
Take care all xx
Thanks good to hear about the PICC line Jojo! But rubbish about the delay.
Where did you order your wig from?
Im sorry you have found yourself here, but glad that you have come to join us.
that is quite a regime, but you sound like you are doing incredibly well still working and doing day to day tasks.
Good luck with the cold cap, I have decided against it, as I think I would be more disappointed if I did it and it was not successful, than accepting baldness in the first place! I really hope it is successful for you, though! Xx
Wow, that's quite a regime. Sounds like you are coping well though. I'm on Fec T - three cycles of Fec then 3 cycles of docetaxel all 21 days apart. Radiotherapy after that. Surgery is behind me though I must admit I was shocked to discover it was day surgery.
In some ways it all seems to happen very fast and in others the waiting is nerve wracking.
Hi, I'm also started on this crazy rollercoaster of appointments and emotions. I attended the diagnostic clinic on 10 September, was diagnosed on 17 Sept, followed by a week of tests and chemo started on 29 Sept. Weekly Paclitaxel and 3 weekly Carboplatin for 12 weeks. Then EC for 4 cycles. It's quite a regime! Will need surgery and Radio post chemo but I guess they wait to see if the lump has shrunk and also the results of genetic testing before discussing options for surgery.
I had a port inserted on Monday and my 2nd Paclitaxel on the same day. So far I am feeling ok. I'm working from home, going for a daily walk, cooking dinner etc.
I'm trying the cold cap but have ordered a wig in case I need it in a few weeks.
I just wanted to say hi and connect with people going through the same thing.
I think Ima do the same if they ask for more Tbh. Im fed up with waiting and mentally it's just not nice x
Mrsquincy you look lovely!
I hope your results come back quickly and that you get your dates soon. Waiting sucks! X
I had to have a second biopsy following MRI. I couldn't work out why they wanted to do it because I just wanted a mastectomy. Maybe they thought I would opt for a lumpectomy. Unfortunately for me they couldn't locate it on ultrasound so they biopsied a lymph node and I was subsequently offered another (!) biopsy under MRI at Addenbrooks but I said no, I just wanted to get the op over and done with.