Hello everyone hope you are all feeling ok .. so pleased it has cooled down now ! Has anyone had a problem with nerve pain .. I get random pains everywhere . It’s one week since my first session of tc .. I’m ok apart from that and it doesn’t last all day but it’s like a brain freeze type of pain in different joints . I’ve just been taking paracetamol. Much love to you all and hope you are feeling positive xxx
Hello to everyone
Hope you are all doing ok on your treatments with not too many side effects .
@NKB Hope today went ok thinking of you 💗.
I had a phone call of my oncologist today I will be starting Abrexane this Friday every 3 weeks 4 rounds .
feeling nervous but positive having a picc line fitted Thursday as they could not find a vein last week very well .
Sending hugs and prayers to everyone 💗 xx Thinking if you all 💗💗
Hi @NKB , just wishing you all the best today, hopefully no more delays, treatment starts and side effects are manageable within a few days.
I spoke with a chemo nurse yesterday about our particular regime and she confirmed it takes time for the dosage to build up and fatigue to kick in but also that the Paclitaxel has more/additional side effects and when we switch to it we will feel like starting again in some respects.
So basically, hopefully EC first will give us both a few easier weeks to enjoy with the family before we become really tired.
But hey, whatever happens, you have a community of support to turn too for advice and support and on those low days just jump on here and reach out.
I hope everyone else is doing ok especially those in the UK with the current heatwave- I hope it's not impacting too much on you physically as you go through treatment. Take care.
Hi @NKB , I think it's important to know both what to expect in terms of side effects and that whilst yes, everyone is different, lots of people are fine especially for the first few weeks before the dose builds up in your system. We need hope and things to look forward to and if we know that things might crop up to prevent us being active, but that we *can* be active - I think it helps a lot. It certainly helped me going in to surgery knowing you can have a fast great recovery - it totally changed my attitude as I was freaking out with all the bad stories.
Take your time and adjust to your experience but hopefully you can do lots of fun things with your son.
Wishing you all the best for Tuesday
Hi, ask your clinic nurse, I had that problem after my 1st chemo...they are there to help with side effects...xx
@GreenBird A massive thanks for all the info. I have totally been unsure so thus is a massive relief. I will be happy for fatigue to kick in around the end of August It has been playing on my mind terribly about the summer but really glad to hear that it won't be a total loss and I should be well enough in my non treatment weeks to do something. Great ❤️❤️ Whenever I have asked the doctors they have just said everyone is different, so difficult to gauge or plan.
Hope everyone else is doing OK xx
@angelalee I think I read somewhere you can use 'fake tears' which is some sort of solution you can get OTC in pharmacies UK - I had to use years ago for dry eyes for something else and relief was fab, I forget the real name but pharmacist will know. I also found a hot/ warm cloth pressed in the eye area ( not too hot) can stimulate the tear glands to produce oil to reduce dryness.
Hi @NKB , yes.as far as I know, 8 rounds every fortnight in that order but I find out more next week.ill keep you posted as it's great if we are tracking each other!
I know the uncertainty is frustrating but having seen a few people go through chemo I'm expecting to be ok over the first few weeks, initially you can be whoozy as they adjust your dosage etc and I know everyone reacts differently but I'm expecting to be out and about doing normal activities within 4-5 days of each treatment, then, as it builds up in your system the real fatigue sets in. So I'm hoping to be good to go until late August. I'm not planning anything major just in case but I'm hoping to do day trips and activities - whilst being careful of Covid, another factor that impacts. I guess what I'm saying is if I were you I'd be looking at fun day trips within reasonable travel distance for your son, during the second week of each treatment, especially the first few weeks before any potential hair loss and any lack of confidence you might experience. apologies if this is exactly what you are intending already, I just thought you might not be aware that it can take a good few weeks for the fatigue to set in and that it might help to know you could plan surprise day trips etc for your son if you have been unsure. The pressure to go abroad or do camping can be intense and sometimes we miss what's right on our doorstep.
Take care x
You are the first I know on the same regime. Alot of people I know are on Taxel first or just completely different drugs and cycles all together. Very glad to have someone on the same.
It is the waiting and the not knowing how you will be over the coming weeks. With summer here and this amazing weather I can't plan anything for me and my son to do in case I don't know how tired or sick or fine I will be. Its a little frustrating and hard for him listening to all his friends going abroad or going camping or doing some fun family thing.
@Pollyannasglad -hope you're still feeling relatively well. I think beforehand it's easy to imagine yourself with your head constantly in a bowl 🤢 it's the image most of us probably have when we hear the word chemo.
@flower77 - sorry you had such a rough time today. Hoping your oncologist can come up with something to help you 💕
sending everyone else positive thoughts x
@Pollyannasglad Dear! Thanks I’ll check with my contact nurse on Monday 🙃
Yes they give me strength but at the same time the tiny fingers make me feel very weak when I think about what the future holds for us 🙄
But it’s a blessing to have them 🙏🏻 as it occupies my mind to stop pondering about my underlying health condition!!
Darling @Dimpled firstly, thank you for your kind words .... all I can say is that my PICC line insertion was a breeze and nothing compared to the pain of childbirth and all the other horrible things you've had to endure! The local anaesthetic stung a tiny bit and then no sensation from the tiny tube being put in place. Inside my arm, chest and neck I can't feel it at all. The site on my arm occasionally ached until I got some snug picc line sleeves to cover it. The IV infusion with the line was a doddle yesterday. Ask your team about what could happen to your veins if you don't have one! Oh and, I had to have it in my left arm as my tumour is right breast. I sleep on my left side but I honestly haven't been bothered by it. No pressure, I'm not medically trained, it was just the right decision for me. Hope those little fingers wrapped round yours are giving you strength!!! 🥰
@GreenBird Hope you have a nice, relaxing weekend 🙂
@flower77 I haven’t been able to eat much, it’s been liquid diet although I think the stomach is getting better now 🙏🏻 Although cos of the previous episodes I am quite pale and have lost 1.5kg as compared to when I started at the beginning of my 🤰🏻 So I think I’ll be loosing my weight quite fast this time around. I’m slightly better now 🙏🏻
My kids are doing great 🙃 the toddler keeping me on my toes n the infant both have me wrapped tightly around their fingers 🥰
Had to rush to the hospital to give some emergency blood samples 🤷🏻♀️
Sad to know that your treatment didn’t go as planned but wishing you all the best for next week and hope that it goes smoothly for you.
Hugs n best wishes 💕
The dodgy node and another biopsy is just another routine grill but good that it was identified now!! So all the best for that ❣️
lol your poor dog must be surprised for an early morning walk 🤣 although the weathers lovely for a nice morning stroll but today it’s been too windy and was 12-14 degrees in the morning and 13 at the moment 🙄
Oh the wig doesn’t sound fun to drive all that way and not finding your size 😶
I have the wig n haircut lined up for next week hopefully no more surprise tests or blood samples pop up in the coming week *fingers crossed*
@Angelgal So sorry to know that ur BC has returned after 9 years 😖
Getting to know other people Cancer journeys is scary and the uncertainty of whether you can actually kill the disease and get rid of it for good or not is the scariest part of all 😶
I’m not sure about the PICC line as haven’t had one. Is it worth getting? The way the nurse explained that it’s a minor surgery to connect to the heart didn’t sound appealing to me at all 🤐 but then nothing in this treatment was ever meant to be appealing !!
Wishing you all a great weekend ❣️
Hi all again, I just wanted to drop a line to say I hope you are all doing well, I haven't quite figured out who's who in the message thread to send direct replies but it looks like despite some set backs and lots of complexity you are all doing really well, very focused and positive. It really helps those of us joining late to get a sense of what to expect, so thank you to each of you.
I did spot that @NKB will be doing the exact same treatment (type/frequency/length!) as me, I start a few days after you so it will be helpful to see how we both get on- although sorry to read Tuesday is actually a delay for you - the waiting part of this journey has been the hardest in my view. Wishing you all the best for the next few days.
Hope you all have a good few days over the weekend, hopefully a break from treatment wherever you are in the world.
So sorry I never read this message earlier . Must be the heat got me .,it’s awful
not knowing exactly what’s happening hope you know what happens soon .
glad you got your wig sorted too .
Sending hugs to you xx
😱 @flower77 oh you poor thing!! I'm so sorry to hear this. I'm not surprised you have been so upset. Sounds like all the nurses were on it so glad to hear that for you. I'd say don't worry but that's what we do now even if we try not too. Friday will be here before you know it and you will be just as calm and positive as you were today. Big hugs 💕💕
@Pollyannasglad you did make me giggle today having your bucket and everything to hand in case on your first night - I can totally picture myself doing that too. I do have images of myself hanging my head in a bucket! 😝 It's encouraging that you feel good and still getting around. AMAZING! I'm sorry about your wig session though and that it turned your good day into a downer. Big hugs - you are doing amazing 💕💕
Everyone - Happy Friday nights - another week down and we are still tough!!
Big hugs 💕💕💕
Oh @flower77 what a very scary episode for you! Just glad that everyone rushed to your aid and that an oncologist was able to step in too. I'm sure that your own oncologist has some great ideas about what to do next.... hopefully next Friday to start again then? You deserve a big cry, we all read about side effects but it's not the same as having them!!! Hope you can have a peaceful few days wherever and whatever you have planned. Biggest hugs. xx
Hope your procedure goes well on Tuesday 💗 also waiting is not hood it’s like your in limbo . Sending hugs .
Hope your feeling a tiny bit better today and your children are ok too 💗 . Sending hugs 💗 .
How are you feeling today ? Hope you got some rest after yesterday snd Aldo that you go joy get many side effects . Sending hugs 💗@angelalee hope you are feeling better too snd not having too many side effects . Sending hugs 💗
Sending big big hugs to everyone 💗💗
well this morning I went to start my chemo nurses were so so kind and gentle had the targeted therapy (herceptin ) also drugs before everything was fine then when the chemo (pac ) went in within 2 minutes I had reactions felt strange breathless stomach cramps very weird I had 6 nurses round me sorting me out everything calmed down quick with more medicine given . Cannot thank the hospital enough the care I received and kindness was I’m beyond thankful for . So could not have chemo today on call oncologist was nice too and said we’re not giving u anything more today which I’m glad about . I’m waiting on a phone call to what’s happening next when my own oncologist finds his email hopefully will hear off him on Monday . I won’t lie I have been very tearful I was very positive and calm this morning I have calmed down now . Should know more Monday booked in for next Friday as nurse recommended.
love and prayers to everyone 💗💗💗
Hello everyone, glad to hear all your updates....I know it's not all smooth sailing with changes to dates, new worrying tests and symptoms.
My oncologist has written to my breast surgeon to ask why a dodgy node in my armpit wasn't rescanned and possibly biopsied. I guess the good news is she spotted the error. I'm not sure about my surgeon and so let's see how she responds!
Yesterday went well and last night too, I was exhausted. Laid out a bucket to vom in last night, thermometer and emergency numbers but thankfully didn't need them. Drank a pint of water at 5am and then another two since 7am, key tip to diluting the chemo toxicity apparently! Got to take steroids twice a day for three days now. Feeling 'normal' in most ways today and hope that anything in the next couple of days is manageable. Walked the dog before 7am (she was shocked!) and then set off for my 10am wig appointment in Chester and feeling perfectly well to drive. I found it really demoralising - I've chosen one but I don't love it, they didn't have my size in stock and I think that didn't help!
Calm before the storm for me, in so many ways! I know that the upcoming weeks won't necessarily feel so happy clappy'! Shutters down, cooling drinks in! How are you? xx
I waited 15 weeks to start my chemo, finally got there. I had my surgeries back in end of January, so it's been quite a long road.
I had B/C 9 year ago, but didn't need chemo last time.
I'm fascinated how they plan these treatments, for so many, and they are so different to. You'll be on the chemo journey in no time, let us know how you go.
Did you get a picc line?
My vein has gone red from the epibucirin, but hopefully it will change in time.
Yes my chemo was a 'mop up' just preventative to.
I've only just woke up to the burning feet, so I'll see how I go over the weekend...and see what comes next...
Sending hugs to you and everyone xx
Counting the days now!!
My regime will be 4 rounds of EC every fortnight. Then I am changing to 4 rounds of Taxel (paclitaxel) every fortnight.
I have already had my surgery (lumpectomy and lymph node removal) so my oncologist said that the chemo is more preventative and to ensure there is no microscopic cells left.
Have they given you anything fornyour burning feet? Is that a common side effect Docetaxol?
What chemo will you be on?
Hope you get to start soon.
I'm on day 3 after Docetaxol, my feet starting to burn now, let's see what's next...
Wondering if anyone else has received docetaxol as part of treatment? And how have they got on...
I managed FEC OK, although did have many side effects, that got better after 1st week.
Thinking of everyone ❤ xx
Sending massive hugs to all. You are all really into it now - I think just me to start. They moved my day to Tuesday now (annoying) as need a procedure done first. They want to biopsy my lymph nodes that run across my chest 🙄 Anyway finding it hard the last couple of days but I guess it's just the waiting.
@flower77 Good luck today!! Thinking of you and hope all goes really well for you and you have minimal side effects. Do let us know how you get on.
@Pollyannasglad well done on first round. How was your first night? Any side effects?
@Dimpled stay strong lovely. You will get through this. Keep letting us know how things are if you can. We are here for you xx
@angelalee how are you feeling today after round 2?
Just sending massive hugs to all. Thinking of younall really and sending out positive vibes and hope you are all feeling as well as can be expected. X
Just a quick check in. I've not been able to read all messages back, but I do hope everyone doing OK.
I had an allergic reaction to my 1st infusion of Docetaxol this week. It was managed super quick, and I was infused with antihistamines and steroids, treatment re-started 30 mins later, and I tolerated it.
Also had an episode Monday where they couldn't get blood, as only 1 arm is bring used. I had lymph node clearance in the other. I didn't want a picc line (although looking back now....🤔)....anyway...
They had to take blood from my at risk hand. They tried a good few times.
Got there in the end. But just a bit more stressful than anticipated....
Day 2 after Taxotere, usual flushing of face, had a good sleep last night thankfully, as those Dex keep me awake like wow!!!
Hopefully I won't get too many side effects, we will see.
Sending love and hugs ❤
My knees hurt and lower leg muscles were so sore an hour after my infusion yesterday. However, I managed to walk for 45 mins and the pains have gone this morning. I am waiting for other SE symptoms to kick in though.
I really hope the nausea has stopped for you and these side effects soon subside .
MIL sounds a great help to you it is hard work with a baby and toddler I remember but even still not being well at the same time like yourself . Your body is having chemo pumped in when you have not even had time to get over the birth 💗 . I have been praying for you and everyone else .
Sending hugs 💗 xx
@Pollyannasglad Just ended up puking although I’m on an empty stomach now but there seem to be endless surprises 🥴
it surely is, but thanks to MIL whose volunteered to do the nights since past few days 🙏🏻
I need the doctors referral letter to apply for her extension so that’s due at the end of this month on my next scheduled appointment. Me too hoping for her visa extension although my hubbys preparing me for the worst in case if she needs to return after 2 months or God forbid even before that in case if any unforeseen circumstances occur
No I still haven’t told her and don’t intend to although with the severity of symptoms n treatments she was asking me the other day if it was something more serious and she should be worried. I have so far told her that I’m suffering from a severe infection which I had during pregnancy n seeking treatment for the same. Don’t know how long I can pull it off as I intend to get a wig next week along with a pixie cut 😖
You are just a concerned, loving wife 🥰
I often wonder if I will make it from one day to the next n if I’ll still be there to look after my kids n it simply breaks my heart 🙄
Sending hugs n ❤️
Sorry to hear that you are still having a vile time our #supermom - I still can't get my head around your schedule and it must be endless days of treatment, tests and being mummy to your tiny children. Have you told you lovely MIL everything yet? I'm so hoping her visa gets sorted soon....at least you'd have clarity in one area then?
My husband is still isolating, even this evening I was delivering food to his door....I'm a madwoman! 😂
Every day is a holy horror, a mystery and still worth fighting for. Don't we be received....like many of us showing a positive face to the world.....I am often terrified!! Hugs to you all. xx
@Watcher72, I had wished n hoped for the same. Although the aches n pains are slightly less but now I’m having stomach issues and almost on liquid diet since morning. Also have blisters on my tongue n everything tastes horrendous. I think I’m really low on energy cos of the same. Called my contact nurse today to tell her about the severe backache n stomach issues. She has prescribed more medicines from the oncologist 🥴
it’s just a very long and tough journey ! And I seem to get so touchy these days owing to PPD
Had an X-ray today to check how my hearts responding as part of the meds n chemo I’m using. Now waiting for next appointment with the doc before my next chemo planned on 29th!
@lolagee Welcome to our small group, although I wish we had met in a different n much more pleasant way but unfortunately at the moment we didn’t get a choice n this was how it was meant to be.
couldn’t agree more it’s a very scary journey and looks like a ‘walk in the Jurassic park’ 😖
@flower77 All the best to you for tomorrow 💕
@angelalee @hope everything went fine for you and you had a nice walk 🙃
@Pollyannasglad Glad to know that everything went smoothly ❤️
How’s your husband now??
Sending best wishes, luck n ❤️ To all
Hope you had a good walk tonight and makes you feel better . Hope your treatment is going well too 💗 xx
I am glad you got on as best as you could today , hope you get done rest tonight .
been thinking of you 💗 . Xx
my turn tomorrow had a long talk on the phone today with nurse went through everything with me do feel more content now I know what will happen tomorrow.
Thinking of everyone 💗💗 sending hugs xx
@Pollyannasglad - hope you have a settled evening and great that the transport worked well for you. These volunteers are bloody marvellous! 💕 Get plenty of rest and drink as much as possible, it really does help x
@angelalee - glad today was ok for you, and good that you can get out and go for a walk. Hope you also get plenty of rest 💕
hugs to everyone x
Just got home! First of 20 chemo weeks banked! Chemo including steroids plus Piriton and then tomorrow steroids twice daily, Domperidone if I feel nauseous and Famotodine before next week's chemo session.
I was so cold on the unit. Nobody was chatty, they were sleeping mostly. The lady next to me was cold capping and her 'freezer unit' was really noisy.
The nurses kept a close eye on me, there was lots of checking if I was having a reaction (especially the Carboplatin apparently) but nothing so far.
Patient transport was fantastic, all volunteers, very grateful for them. I know tomorrow is another full day for group members, thinking of you all and sending hugs. xx
Thank you for thinking of me. Finished 2nd round of Taxol at 3pm today. I’m resting for 2 hours and planning to go for a walk now rather than waiting for the SE to kick in.
All the best.
We all stay positive and fight
Hello everyone .
Been thinking if everyone hope know matter what stage of treatment your not too poorly and coping as best as we can .💗 .
im just waiting on a call from the hospital then start day tomorrow feeling anxious but everyone has been so reassuring about what hAppens has helped me 💗 .
love prayers and hugs to you all 💗💗 xx
Hello to all .. yes it’s good to be able to chat and share experiences with people on a similar journey .. I’m pleased to have joined the forum and hope we all get through this and see and end goal . It’s a very scary journey and a long one from diagnosis to treatment and the waiting is the worst thing . We somehow do find the strength and courage to get through it .. much love sent to all ❤️
@Pollyannasglad - glad the PICC line was ok yesterday 💕 Sending you love and positive vibes for today and hope it all goes well.
I had mine flushed last week for the first time, and the nurse told me it can take around 4 weeks to settle, which helped as mine was feeling really tender and I thought I was just being a wuss 🤣 she also positioned it differently so it lay on top of my arm. Made a huge difference to stop it feeling like it was digging in.
@lolagee - sorry that you find yourself on this journey but nice to have another member in our group. Glad you're feeling Ok so far. I think we prepare ourselves for feeling horrendous all the time. The anticipation and expectation is probably far worse. Fingers crossed you continue to feel well. I had my first round of EC 2 weeks ago and side effects were manageable.
@NKB - hope everything goes well with your visit to the chemo ward today. What you described is exactly how I felt. I have had my surgery, recovered from that, and felt well - not ill, no other medical problems. In fact my brother did ask me a few weeks ago why I was still getting sympathy, there was nothing wrong with me 🤣🤣 🤣 (he was careful not to say it in front of our Mom tho, she wouldn't have seen the funny side!
@flower77 - I hope you are able to do something nice for yourself today, in preparation for tomorrow. Sending you hugs x
@Dimpled - hoping you're side effects are improving now and the joint pain is easing. Were they able to give you any other meds? Wishing you well with the visa extension for your MIL x
@angelalee - Do you have another round today? Hope everything is ok for you x
@GreenBird - Hope you're doing ok today and getting some things organised ready x
Super kind....thank you. Husband still locked away with Covid but his positive line faded a bit today. I have literally not seen him since last Saturday but it's worked as I've stayed clear. 🙏🤞
Thankyou and hope it goes well for you today I’m sure you’ll be ok the nurses and staff are really lovely 😊❤️
Hi well don’t worry I found it absolutely fine after so so much time worrying and stressing .. I’m having TC four rounds then radiotherapy.. still feeling ok this morning took anti sickness meds they gave me ( take even if don’t feel sick ) and last day of steroids today .. good luck for Monday and don’t worry 😉
Morning ❤️ hoping your ward visit/pre-match briefing is as settling as possible. I found last week that no question was too ridiculous - although when they asked me to do a swab of my 'groin' to test for MRSA they were slightly thrown by my query about virtually doing an internal sweep! Knicker line apparently....they'll be more specific in future? 😂 In my defence, I was very nervous and didn't want to get anything wrong!!! Let us know how it goes. xx
@lolagee Welcome aboard!! Wow yesterday. Glad to hear things went well for you on day one and so far you are feeling well.
I start my first session on Monday 😬
Morning @lolagee and welcome to the group. I'm currently at home and waiting for transport to my first session. We're nearly all on different treatment pathways but the mutual support is amazing! Look forward to chatting again soon. x
Hi had my first chemo session yesterday the first of 4 .. went so much better than I thought and managed a few hours sleep after being awake night before with steroids .. I’m new to the site and just wanted to send everyone best wishes .. so far I’m feeling ok ❤️