Gingerbud, just want to say sorry.
Your positive attitude really shines through and I'm sure it'll help you get through this next round of treatment. I really hope it'll get you better results than you dare hope and lots of that precious time we all want for you and your family.
Big hugs, Angelfalls xx
P.S. Capecitabine is very "do-able" for most of us. Come and join us on the Cape/Xeloda threads.
I just want to say I've been overwhelmed by your support over the last few weeks. Thank you so much you are a wonderful group of women, all with your own problems but you are still willing to help + support others. Thank you so much.
I am updating my news in the triple neg thread in a min so if u would have a look on there, it saves me typing a long post twice.
I am digging deep + just praying the next round of treatment buys me some precious time. Whilst there is some hopethen I will hang on to positivity.
Love + thanks to u all 🙂
Oh Tina, you are having such a cr@p time and my heart goes out to your and your family. It's the news that you had braced yourself for but no less devastating. Take courage from all the ladies that have had WBR or gamma knife for brain mets and that,and the chemo combination, will work for all your mets.
Tina, so, so sorry to read your news... nothing I can say... big hugs.
You are one amazing woman.
Dear Tina, I should have mentioned in my posting a few above this one..Capecitabine is a chemo that crosses the blood brain barrier so you will be giving those mets a double bashing. Apologies if you already knew this.
Take Care, reading all the support for you, both here and on the trip neg thread shows how much you are one loved poster here. Wishing you the best of results possible.
I don't have words for this, so I can only send you hugs.
i have just logged on and i am devastated to hear your news. This disease angers me so much. Words don't mean much- i just wish we could all wake up from our nightmares and be disease free. my thoughts and prayers are with you x
I've just logged in, have been to your other thread and seen your news. I am lost for words and can only begin to imagine how you are feeling.
I do know people who have had gamma knife and others who have WBR,of course neither is something you want but both treatments are able to produce good results. I hope you will get the chance to talk about the pros and cons and get whichever is the most appropriate for you, it sounds as if your team are on the ball.
Your family must be in pieces and I can understand you wanting privacy but maybe you are right, support might be forthcoming if people know the situation, I hope so anyway!
Can't say anything to make you feel beter but sending you love and hugs and will be remembering you in my prayers. Wishing you strength Julie xx
Dear Tina, there are no words, I'm just so bl**dy gutted for you. Is gamma knife an option? A friend had gamma and it was less draining...but all the luck in the world..I think, I hope you will find Capecitabine a much kinder chemo too. Lots of Love, Belinda..xx
Tina, so sorry to hear your news. I don't often read the TN thread, but have paid a visit there this evening and I am so sorry to hear about your brain mets - although your attitude and outlook sounds amazing. I really hope the WRB isn't too awful and that you can manage to take Capecitabine alongside.
Sending gentle hugs
I so very rarely post on these threads now but do look in regularly. I have checked the threads today because I have been thinking of you and was willing for you to come back and say that it wasn't the worse. Thinking of you (and all you secondary ladies) at this horrible (the word doesn't do it justice) time.
Aw thanks sadie. Was just going to refer posters to our thread myself to save me typing another long post.
Ladies thanks for your support, sadly I do have brain mets 😞 Mynews is in more detail on the TN thread, as Sadie says.
Hi Ladies, pls check the 'trip neg secondary / recurrencies' thread for Tinas situation nd send her some love!!
Sadie Xx Xx
Hi Tina, just wanted to let you know that I'm thinking of you today. I'm a primary lady but was diagnosed not long after you and a similar age, and have followed your posts. Am so hoping that the scans aren't as you are fearing, and that you get some good news today. Sending hugs too. xxx
I don't post much, but see your having some scans, sending lots of postive thoughts and a big hug. Hope all is Ok
Yes I've got my bright pink outfit ready!
Dear Tina sending more positive hugs to lull you to sleep and pray that tomorrow eventually brings you the news you are so ready to receive....
I'll be thinking of you tomorrow Tina. And I'll be celebrating Wendy too.
Hi there Chick. Don't get here much nowadays but popped in and saw your opening post to this thread. Hope you get some answers soon. x
Good luck for tomorrow x
Healing thoughts x
Sadie Xx Xx
Big hugs and everything crossed for good scans tomorrow.
Just popping on to wish you luck for tomorrow Tina, thinking/praying and sending positive vibes your way.Hoping to hear good news from you tomorrow. Try to imagine all the women here holding your hand and giving you strength and hopefully that will help just a little with the amxiety. Hope you get some sleep tonight, love Julie x
Tina, like Wandy I am a primary girl and don't post much. But I just wanted to say I am thinking of you and wanted to wish you all the best for your scan tomorrow. Much love xxx
been thinking about you a lot. i really wish you all the very best with your scans. i wish i could wave a magic wand an make all this go away x
Hugs from me too, Tina.
hi tina gd luck for tues be thinking of u big hugs xx
Me too Tina, and well said Wandy,
We may not all post on secondaries threads if we are not in that situation ourselves at the moment, but sending you virtual hugs. It isn't easy waiting for any scans and you still manage to care and support others.
Thinking of you and your family and hope you managing to keep occupied and spend some family time in this lovely weather
Thinking of you loads this weekend Tina, as you prepare for Tuesday scans. Such an awful game of waiting.....
Hope you and your little family are doing something nice together this Sunday so that it provides a welcome diversion for a few hours at least.... However, I do recognise that that's not always easy to achieve either!
Take a tight squeeze from me,
Am not a secondary lady so have never posted but have read some of your situation over the last year and just wanted to let you know that I and no doubt many others who don't post on secondaries cos we are recovering primary girls are thinking of you. Well I am anyway!
All the best to you and good luck with your scans. Will be sending many positive vibes your way.
All best and (((hugs)))
Thanks again for the supportive posts ladies. I'm in for scans on tues including brain scan (1st in 18m so naturally anxious). Onc agreed the episode on tues sounded like a mini stroke but said they often don't show on scans as they are 'transient' by nature.
I will update when I get some feedback from the scans.
Love Tina xx
More support here too Tina. How frightening for you. I know what it's like going to A & E they are hopeless and before I can get near to the Oncology Ward, where all is calm, soothing AND they know what they are doing I have to brave the chaos that is the MAU (Medical Assessment Unit - or HEO, Hell on Earth).
Sending you healing hugs. I hope things have settled down for you by now, weekends are often worse especially if you get bad se's, nobody in at the hospital!!!
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.
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
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
Sadie Xx Xx
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.
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
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.
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
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
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
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
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, 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,
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.
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.
It could possibly be shingles which can be triggered when on chemo http://www.nhs.uk/Conditions/Shingles/Pages/Symptoms.aspx As others have said, contact your chemo team x
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
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!!
Sadie Xx Xx