Ah @budsbails2301 sorry you feel rough on EC, it’s a horrible feeling- just be kind to yourself and rest when you can. A day at a time is the right approach, but it’s such a massive challenge. Sending hugs xx
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@budsbails2301 chemo is a balls. Right there with you. Im on a merrygoround of nausea heartburn and diarrheoa right now. Had very bleak day yesterday but today is better. I have 4 different anti nausea meds, nothing works completely despite this and shares in gaviscon. Then others dont get nauseous at all and i think how??? Lucky things.
What is keeping me going is how much is already done, 5/6. What worries me is potentially needing kadcyla post surgery. Will seriously need my nausea meds reviewed if for any reason longer haul is required. I mentionned it at my last oncology consult and they thought, a. Im taking a lot for a large part of cycle, and b. I need to figure what works with what ive been given. I cant help but feel if im not hanging over a toilet, they arent worried. But mentally i have very little gas left in the tank for endlessly feeling sick. Having said all of this, im literally at my lowest point of cycle right now and i know it gets better and id be devastated to miss a chemo. I know you feel like rubbish, i hope it settles soon and the good days give to enough sustenance to weather the bad. I have taken to organising treats for myself on my good week (week 3).
I had MRI breast as my mammo, even with contrast, was described as “difficult”. You lie on your front and drop your boobs into these holders. Quite weird 
. Having had a clear mammo, ultrasound and biopsy last nov, to ibc 4 months later, i have not a lot of faith in mammos with my breast density. I know thats the nature of IBC but Im going to need to discuss this re long term imaging. I really feel i should be having MRIs and not just mammos.
@glitteryrainbow def mention the neuropathy as soon as you can much easier to deal with early. Hope youre okay after fall. If its like our house, kids leaving stuff on stairs 
.
Finally anyone reading this due to start chemo. Id advise get your iron in if your team is happy. My haemoglobin is getting quite low but im not allowed to supplement during chemo. If you can get it in the higher end if normal pre chemo, that has to help im guessing?? Def worth a check. Also, for all my whining, im nearly there, i still exercise most of cycle in some form, some bits have been tough and others i can see ive had it easy. One day at a time. X
Hi @glitteryrainbow jyst thought I’d update you on the neuropathy thing after I saw my onc this afternoon. Told him about my numb toes, described it like I’d been out in the snow in wellies and couldn’t feel my second and third toes on both feet. He was quite emotionally detached, said that the damage is done, that it won’t get better, and that there are two options for me - stop altogether or reduce the dose. I was a bit shocked but I’d seen from this forum that reducing was an option for some of you so I went for that - he’s brought the three remaining infusions down to 75% but put on my record that if there is any further issue or deterioration, then I have authority to stop the treatment (as I don’t see him now for 3 months).
Bit shocked to be honest- but thought I’d mention it for you and anyone else that is experiencing numbness or tingling - it isn’t necessarily reversible, and prompt action might prevent long term discomfort xx
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Hello!
Thank you so much for the update.
I also saw my oncologist yesterday and described it exactly how you did! She had a very different approach, looked at all my toes, did pressure tests and said that she wasnt too worried BUT did say that i could reduce my dose if I wanted to but she suggested that at this stage, i should be okay as I only have 4 more treatments to go. Its a difficult one because i dont want to do damage to myself but also dont want to risk reducing the dose!
I am so sorry that you was spoken to like that, it sounds very disheartening. Sometimes people do not think when they say things.
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@glitteryrainbow thank you so much for your reply! I’m sitting in the waiting area before my treatment, flipping out (internally), because until I read your post I wasn’t sure what to do 
on this journey we are TOLD what’s happening mostly, and faced with that decision yesterday (stop or reduce) I REALLY didn’t know which way to go! My friend who is a nurse said that if I was given a choice, then it really is a choice - if the risks of the treatment outweighed the benefits they would have said I should stop it. Which made me feel better.
Your words have reassured me that I will see it through (today at least) on the 75% dose, and see what happens. After this one I only have two left so 
they are drama free. Maybe he forgot to pack his empathy in his briefcase yesterday 
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@hopefulheart sorry you experienced the complete lack of empathy.Im glad that at least you can try the reduction and hopefully that will elivate your symptoms❤️ @ Glitteryrainbow glad you also had the opportunity to speak about your symptoms and hopefully also get some relief. Well im day 7 from EC and still cant stand up from feeling dizzy and im going to pass out.The stomach pains have seemed to have eased.I dont know whats normal and if i still should be feeling this way.I will call the triage tomorrow if still not able to stand up.I just dont want to go to hospital again especially A&E xx
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@budsbails2301 this sounds really rubbish 
you are so unfortunate in experiencing all the side effects 
it’s very hard to know what is ‘normal’ and what’s not. Speaking to the nurses is definitely the right thing, they don’t want you to struggle any more than you need to and there may be something more they can do to help. I hope you can get some relief but hang in there - EC isn’t known as the Red Devil for no reason but it isn’t for ever 
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Im so sorry you are feeling so rubbish on EC, I too felt poorly and really struggled for a week after having it, are you having it every two weeks or three?
I felt dizzy when having EC and couldnt stand for long periods of time. I drank lucozade which helped slightly. I was given medication to help too but the medication didnt do anything for me apart from make me sleep. It was medication that goes inbetween your gum & cheek and you let it dissolve. I cant remember the name of it but will check my records for you. Youve really been through it with the side effects but try to think positively, soon this will be over! Youve got this x
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This is what my oncologist said to me, the risk of stopping treatment all together, outweighs the risk of damage. She has told me that if the numbness goes up into my foot then I will have to stop treatment but she was happy for me to continue! You are so close and you will be able to see it through! You must be so excited to have 2 left! The countdown is lovely but also feel like the weeks are dragging! After tomorrow i will have 3 left.
We’ve got this!
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Hi everyone
Sorry to hear about your unsympathetic oncologist @hopefulheart, someone told me they have to pass a bedside manner test before qualifying but I think some forget that training!
@glitteryrainbow sounds like you had a better deal hope everything works out.
@budsbails2301 it took me a good week to feel better from EC, different symptoms, but its a d*ck of a drug. Definitely call triage it’s better to go to A&E of your own accord than be rushed there later but hopefully it won’t come to that.
A little good news for me, last chemo is done, I’m resting on the sofa binge watching Ghosts US and eating malteasers! Surgery on 12th and 26th September then on to radiotherapy. Strangely got really upset on the way out not sure why 
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@glitteryrainbow thank you❤️,every 3 weeks.Im going to ring the teiage tomorrow to let them know and see what they suggest.If i know this is to be expected then i think i will feel a lot easier xx
@tori123 thank you❤️aw so happy for you and well done on getting through chemo,which is not easy as we all know.Not long for surgery which is really gd news too❤️ enjoy your tv you have earned it xx
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@tori123 how relieved you must feel to have got through one of (if not the) most challenging periods of your life! I’m so happy for you - you were the first to post on this thread and you’ve been so supportive to us all despite feeling rubbish!
Same goes for many on here - I just want to say thanks to everyone for keeping this conversation going, I’ve found it so helpful xx
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Congratulations on finishing the chemo. I’m just back from my holiday in Wales so Im catching up with everyone’s news. I’ve had a lovely holiday away - it’s been very relaxing but whilst away I have also noticed the effect chemo has had on my body from the lack of energy reserves through to the chemo brain and belly. The 107 steps down to the beach I would have previously trotted down and walked up in one go required three bench stops on the way up and I got out of breath very easily. However, mentally I feel good for having a break away from home it’s been nice to disconnect from the cancer journey so I’ve come back resolved to resume my post mastectomy exercises that have been rather lacking, keeping walking daily and try to push a little further each day but also enjoy some of my hobbies and meet some friends before I return to work in October. Stay strong everyone x
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@budsbails2301 how did you get on with ringing about the dizziness?
@snoop182 sounds like a lovely time away! Chemo side effects creep up on us, but glad you are mentally doing well.
Ive had a super sad morning haha! My girlfriend has gone away until Tuesday and I cried when she left! Im sad that I am going to be lonely for even longer than usual. Im sad that I couldnt go with her (its to see her family and her brother has young children so I was scared of infection!) Im sad that the big C seems to be running my life at the moment! And then to add insult to injury, i was meant to be going to see my friends this afternoon but cancelled as one of them has a cold and as we were going to be in the house (due to rubbish weather), i didnt want to risk it! Just feeling really deflated. I keep trying to be positive and think that its not for much longer now but feeling really drained from it all now.
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@glitteryrainbow thank you for asking.They said its a side effect and to keep an eye on temp etc.Still feel the same today.To be honest if still the same Tues i will be requesting blood tests.Even though i dont feel unwell i cant help but think something is going on more than the side effects.Aw love you it sucks doesnt it, how isolating this chemo can be.My partner is a teacher and ive had to watch her for the last 4 weeks meet up with friends go out for days out and nights away.But you are right, our health is more important and we will be able to do all these things soon without fear.Just think we are in a chapter of a very big book and eventually we will get to the end and what a story we will be able to tell.We will close that book ,and write our own xx
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@snoop182 aw you could have popped in and said hello❤️ glad you had some time away.Yes i think getting used to a new version of ourselves will take some getting used to,but we will for sure.Bet you are looking forward to getting back to work and some routine.I know its something I really miss and will never take for granted again im sure xx
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Ah, I should have done. Sorry you have been feeling so crappy. I was in Swansea, then cardigan and then we stopped over in Usk, Monmouthshire last night. Here is me enjoying my first G and T with my funky chemo hat on. I can see from the photo my ‘sparkle’ as my husband put is still not back but it will return for all of us i’m sure.
@glitteryrainbow sorry you’re missing out. I’m sure you’re girlfriend will be missing your company too. Brighter days will come x
@tori123 great you have a date for your ops.
@hopefulheart sorry your oncologist was not supportive - mine has a good bedside manner but I have noticed the times I’ve mentioned my luckily very few side effects they are much more interested in bashing the cancer on the head and the other stuff seems to be what we need to put up with or accept as a consequence. Or at least that’s how it comes across.
I have my next herceptin next week first dose on its own so be interesting to see how that is. I will also start tamoxifen and I’m hoping I might have some results from my heart scan. Been having flutters and palpitations on and off all my week away and throughout last night so will mention that to the oncologist. Also been experiencing pain on my side under my arm, not sure if it’s my mastectomy bra, my flaky adherence to the exercises, carrying a bag to the beach each day or something else.
@kiltie any news from your scan @rosa1 how are you doing?
Best wishes to everyone else x
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@budsbails2301 definitely ask for a blood test if you are still feeling it. Like i said, i felt dizzy for the first week after EC and then started to feel a bit better in the second week. I was convinced it was my blood pressure or my blood sugar levels that was making me dizzy. Hopefully as you are having it every 3 weeks, you will have longer to recover.
You are right, in the future, all of this will just be like a bad dream and we will be able to have our lives back! I keep thinking “christmas time, i wont have to worry about this”. I normally hate christmas but think i will be less of a grinch this christmas .
@snoop182 you look beautiful in your picture! Your sparkle will return🥰.
Aww I know she wishes i was there, its just so hard as I feel like cancer has taken everything away from me! I am having a ‘lazy’ day today and then will get back to getting in a positive head space tomorrow!
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@snoop182 you look lovely❤️and yes that sparkle will return as @glitteryrainbow rightly says.Well i dont want to speak to soon but 10 days later I think im starting to feel a little bit normal again.Ive walked around the house today,i live in a bungalow thankfully so no stairs.I seem to have stopped feeling dizzy and lightheaded.My legs still feel heavy but im sure thats from lack of use.Im going to speak with my BCN on Tuesday to see if i can have something if possible to minimise these effects for round 2 on the 5th sept.Im really worried as my partner returns to school on the 2nd and the thought of being in the house on my own all day when i feel so rubbish is not one I look forward too.I hope.you are all enjoying your bank holiday weekend whatever you are doing xx
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