Hello ladies
just need to vent really and ask if anyone can shed any light on my newest range of terrfying se’s…
I’m on eribulin chemo for secondary tnbc and had chemo today. All seemed fine until about an hour after, was in car with my dad nearly home. Started having tingling + numbness in left nostril + upper kip. Very strange + felt like nose was streaming but nthing. Afer a few minutes it got mch more severe + spread up left side of face across left eye, ear+ side of head. It was horrendous + terrifying. Dad near had a heart attack with fright! After a few mins it eased + I called clatterbridge who said get straight to a+e. Luckily we were close to home + a+e just down the road. It then happened again + I got a really strange taste in mouth. It eased again for a min + then came back suddenly really strong tingling just in face, verging on painful it was so sudden + severe. This went on for at least 15mins in total but thankfully I’ve been ok since. I’ve just discharged myself from a+e as they were bl**dy hopeless, didn’t see a dr for 3hrs (!) and when I did, he had no intention of scanning etc + I’ve been sat around hospitals since 10am + so have jyst about had enough 
I naturally thought I was having a stroke or heammorage (sp?) but who knows?
I’m just so fed up with this sh*tty hand I’ve been dealt. I’m 34, prob won’t see 35, have a beautiful 2yr old who us oblivious to this nghtmare + feel at the end of my tether. I tell u I must have been adolf hitler in my former life
December I was in hosp with pneumnia, January it was a suspeced pulmonary embolism + now this. Also having ongoing heart tests due to arythmia. Got ct + bone scan next wk. I’m assuming a brain scan is now in order given what has happened today. A brain mets dx is just what I need at the mo, should perk me+ my family up no end…
Has anyone had severe + sudden neurological symptoms like I’ve described and if so, did u get to the bottom of it? Does anyone know if brain mets symptoms can occur so severely + out of the blue?
I’m just feeling at my limit + naturally scared that even worse news is around the corner.
Sorry for the self indulgent post but thought u guys mght understand.
Thanks for Reading,
tina x
Tina, I can’t help really apart from let you know that I will be keeping you in my prayers. I am sure there will be plenty of ladies commenting over the next day or two to give you advice and encouragement. Make use of your BCNs and MacMillan they can speak from experience too.
If it’s any use I am on Citalopram anti depressants and they are making life a bit easier to cope with. See your Doctor. You could also ask to see the Clinical Psychologist like I did. I found mine very helpful as you can really talk about anything cos I guess you will be trying to protect your Mum and Dad! Make use of every resource you can cos you deserve everything to help you xxx
Lots of love x
Suzanne x
As well as what ramsfan has said, could it have been an allergic reaction? Probably worth having a conversation with your BCN tomorrow and see what she says.
Can’t say anything useful really, just sending hugs.
CM
x
Oh tina, how very very frightening!! I cant help with the neurological symptoms, but thinking of you nd sending you a gentle hug. I do agree with ‘get all the help you can’ - have you thought about the calling the helpline?? Its also pants service you are getting and that really is rubbing salt in.
Please take some comfort that the se have now gone and hope it is just an unexplained blip!!
Hugs.
Sadie Xx Xx
Hi Tina
Massive hugs for you. Must be terrible to be in your position. With regards to the episode today I would have thought the reaction was due to your chemo rather than a symptom of problems in the brain. It’s too much of a coincidence that it happened an hour after your treatment. Hope thus eases your fears a little & good luck with all the scans next week
Twinky x
It could possibly be shingles which can be triggered when on chemo nhs.uk/Conditions/Shingles/Pages/Symptoms.aspx As others have said, contact your chemo team x
Aw Tina - nothing self-indulgent about the post at all
I’m with the rest of the gang in thinking it’s an allergic reaction which given that you had just had chemo is much much more likely than brain mets.
Can you give your onc a call tomorrow? Do you have stroids for a few days before like TAX? Maybe they need to be upped? Maybe the next time, you need to stay in the department for a few hours after to be on the safe side.
Sorry things are so crap at the moment. Hoping they get better soon.
(((Big Hugs)))
Laurie x
I have heard of other people who have had facial numbness and tingling on various chemos.
I know that doesn’t help but it does not necassarily mean a worsening of your condition. You need to speak to your onc as soon as possible. I am surprised that Clatterbridge did not ask you to come in there.
If you have any further symptoms ring them for advice again.
I am not surprised that you are fed up. It is truly a shitty hand but we are here.
julie x
Tina, I am so sorry you are going through such a cr*p time, You must have been terrified. I am no expert on neurological conditions but the fact that it occurred so soon after the chemo might indicate a se/allergic reaction. I agree with Juliet that it would be good to speak with your onc asap. You are entitled to feel pi**ed off - you have been through such a lot for so long. Hugs from me,
Mo xx
Thanks so much for the supportive posts ladies, you always make such a difference 
I’m just hoping + praying it was something random + chemo related. When I booked in at a+e I virtually begged the nurse for a piriton jab in case it was an allergy + was ignored. I’m not quie sure how serious symptoms hav2 be 2b seen urgently in a+e. My dad was speechless at how lax it was. I had a really bad allergic reaction to carboplatin in December but never had any neuro symptoms (mainly breathing dfficultes last time).
I told a+e doc I would contact my onc 1st thing + I will. She must be fed up with me- she only took me on late last yr + there’s been nothing but probs ever since! I can’t help but worry that if I keep having probs like these, she might pull the plug on treatment sooner than she would otherwise. It’s just endless worry isn’t t
Thanks again ladies, I will keep you posted.
Tina xx
Hi Tina, what a cr@p bl00dy day :-(. Really sorry to hear about it.
I’m not sure if you will think this okay info or not, but on the basis it’s probably better than a brain mets dx, my guess would be that it was possibly a minor stroke type event brought on by chemo. My father in law had chemo ilast year for bowel cancer (has been a fabulous couple of years in our family too…) and he was on oral chemo but had a sudden stroke. He is super fit and active so it was a shock. He has made a full recovery from the stroke but they had to change his treatment as they said his stroke was likely to have been caused by it, it is one of the rarer side effects… His symptoms were a sudden loss of consciousness, collapsing on floor, then one sided weakness. It may be best to try a&e again, or at least phone your onc on call, as strokes need treatment as early as possible after they happen.
It very well may not be a stroke and could be an allergic reaction, but if there’s even a chance it is maybe it’s best to err on the side of caution? Especially seeing as though you ve already put up with such cr@p to get to this stage.
Big hugs, hope I haven’t upset you, it’s meant well cos I care
Vickie
X
My heart goes out to you, Tina. I agree with the others that you may be better seeing if you can get to the bottom of this asap. I don’t think it’s brain mets either, may have been an allergic reaction or even a mini-stroke, as Vicky says. I am on anti-deps and had one or two faint feelings and palpitations after chemo - the nurse said it was something to do with the blood and the artery in the neck. It went and never came back. Asprin is meant to thin the blood and my mum takes it after a mini-stroke 8 years ago (75mg dose). Can’t harm, but maybe check with your out-of-hours onc or bcn tomorrow.
All the best,
Lots of love, Sarah xx
How frightening for you Tina…just adding along with others that it seems to be too close to you having had your chemo than to be brain mets. Hope the Onc call helps…Take Care…xx
Tina Eribulin can have neurological side effects which would probably explain your symptoms. How frightening for you. A&E can be so unhelpful at times. I had a rotten experience when on Tax. They don’t have much knowledge of chemo. and sometimes don’t look at the protocols or understand your fears. I so hope the symptoms have gone now. Do ring the Helpline, you have so much to worry you and sometimes a good listening ear helps.
Take care and BIG Hug
Cackles
Hi Tina,
That sounds absolutely awful, poor you, how utterly terrifying.
Nothing to add really, like the others to me it sounds like an adverse reaction to the chemo drugs and something to speak to your onc about PDQ - you can’t have that happening again.
Really hope that today you are feeling better and that you get the answers you need to put your mind at rest.
massive HUG
Hi Tina
What a horrible experience for you, especially on top of everything else that’s been happening. I’m with the others on the brain mets query, seems too much of a coincidence just after chemo and too sudden. I would also guess an allergic reaction.
I know what you mean about A&E, they have no idea how to handle chemo patients - I can remember passing out in a restaurant when I was on my first chemo, was rushed to A&E in an ambulance and then ignored for about three hours
Hope they can put your mind at rest as soon as possible
Lesley xx
Hi Tina
Just sending you a big hug as I can’t add anything to what the lovely ladies have already said, other than it does sound like a reaction to chemo. You have been dealt a sh*t hand so come on here and rant or moan whenever you like, that’s what we are here for. As to the arrhythmia, yes I have it too and it was brought on by chemo, but I do have meds to control it now. Good luck hun, hope you managed to sleep last night and can get some answers this morning.
Nicky xx
Sending you a morning hug and hope you get some answers today. 20 mins till phone lines open!! Have you got help with Dan today??
An onc job is to deal with difficulties…so dont feel guilty about leaning on her heavily!!!
Sadie Xx Xx
Hug,
Sadie Xx Xx
Just wanted to add a supportive cuddle especially as you have been so kind to me on here. Does sound like allergic reaction to chemo. Amazed they did not see you more quickly and deal with you more effectively in A&E. Hope you get some answers today! Gailx
I to just want to add some support. This whole cancer process is rubbish and I to have had the great experience of A&E not knowing what to do with me. The best help i have found is to call my oncology dept as they are the most helpful. It must have been very scary for you. I am due to start Eribulin in two weeks and i’m 34yrs also, was first diagnoised at 27yrs, now have lymph and bone mets. Just taking each day at a time.
My thoughts go out to you. Look after yourself.
lisa x